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You can expect to receive several emails on specific UC related topics, as well as notifications for upcoming surveys that you are free to participate in if you like. Also, I’ll send you notifications once surveys have been completed with the full aggregated data from everyone else.
The first email you’re going to receive has something special attached, which you won’t want to miss.
I’m always open to good ideas from participants in the ANG (Active Newsletter Group) which you’re now a part of, so let me know if something comes to you that you feel would be valuable for all the people using the site to know about.
Warm regards,
Adam Scheuer
founder – iHaveUC.com
Thanks everyone for their great info.
I was just recently diagnosed with UC and I’m currently experiencing my first flare up. I appreciate everyone’s insight and information on this website. Thank you very much!
Hi Kaz;
My recommendation as getting to know yourself during this time dealing with UC is to STAY STRONG. You will get depressed, BUT I assure you, you are not along even if you find at times thinking you are. I cried in the shower many times getting ready for work. Just let it out and tell yourself you can find remission! Im on 4yrs of UC and went through many meds and testing. If I only knew cutting to the end of the chase I would have opt to schedule colonoscopy to get right to the answer, I would have. I was told to do the barium enema. That didn’t go well. Don’t mean to freak you out. Im just saying it was a useless step in my severe case. Im now 49 (male) and have a great GI doctor in California (orange, orange county) Dr. Metzger and in most part remission.
Hi Robert, my name is Josh and I also live in Orange County. My GI doctor is at Kaiser and him have been going through some hard times dealing with UC. I am a very active person that worked out 7 days out of the week. I have now stopped for about a month and a half. Are there any pills that you take to stay in remission? What do you do to stay away from flare ups?
Hi josh, just checking I after a year gone by. Not sure if I ever replied to you asking what I take or do to stay away from flare ups. Well…. I have been on same regiment of my 2 types of meds, mercaptopurine aka(6-MP) 50mg 2x a day and 2 500mg Sulfasalazine 2xs a day. I have and I am doing 98.9% better than back in the day. My thing now seems to be more mental or mind driven panic whenever I hear or have to go to any function. Meaning the past fears during my UC bad days always worried when or where to go if I had to go when ever I drove or ventured out. Anyway, I do not like to go out anywhere if i don’t have to. Became comfortable being trapped I guess one might say. I plan on working on that more this year. After all I have gone to 3 graduations, one being at CSLB. All without problems. But I am having a hard time mentally as stated. I know I have to get over that 100% as my daughter go tickets for Duran Duran July, 2016. Hope you and all other UCers keep your heads up and moving forward.
I was just recently told I have UC AFTER many blood work colonoscopy CT Scan ..I am having a bad FLARE UP GUESS THATS WHAT IT IS …..GI Dr put me on Predisone but I cannot take them until my stool work comes back it’s not bacterial …And for H-phylo …I am 66 getting ready to retire and so sad about this …II have to go for Iton infusions ..But I am trying to be positive it could be worse
Hi Judy,
Thank you for joining the site and keep the positive thinking flowing:)) It is just about as important as anything else on this planet. Thank you again for joining, and lots of good info to come in the near future.
Adam
Doagnozed with UC in 2004, in CA. GI doctors said it was not food related. Conventional meds did not work, and remissions never lasted long. Came to India and trying Homeopathy and Ayurveda. Both are advising food restrictions including Gluten free, dairy free and vegetarian, now fiber foods, especially during a flare up. I was in remission with Homeopathy, but tried to get off Lialda, that did not work so had a flare up again. Now trying Homeopathy as well as Ayurveda. Still struggling to achieve remission, do not know how long it will take. Doing everything my doctors are asking me to do, including food restrictions, and eating (mostly drinking) whatever they are advising including home-made buttermilk, thin, several times a day (yes, it is dairy but highly recommended, as it is loaded with pro-biotics. Yogurt available in market won’t work as it is pasturized and does not have probiotica any more); pemmegranate juice (home made, fresh), pommegranate seeds, mashed bananas, steamed and peeled apples, vegetable soup (clear), etc. Can search online for further help and guidance.
I was diagnosis in 2014, and this is my second flare up in 2015, it’s important to learn what foods are your trigger, so u will not have as many flare ups! Yes, the holiday is coming, I know with all the wonderful foods that will be made , (What a temptation). I too must remember my triggers if not then I will have many flare ups too.
Take it easy on yourself !
I stopped eating wheat, gluten, sugar, processed foods and most dairy. So far I have not had any flare ups with UC. I was taking 4 Lialda pills,
then 2 and I put myself on 1 pill. Right now my creatine level is elevated and I am wondering if it is the Lialda. Medicine can kill you and the doctors do not seem to care.
I agree. My daughter was diagnosed in January. Pills pillls pills is all they wanted her to take. apriso first, but made her symptoms worse, laidala second. I read everything. Took her off meds, upset her doctor but changed her diet and our entire houses. She gluten free, dairy free, limited sugars, low/no acid foods and is doing really good. She’s taking a probiotic, intestinew from natural medicine store and also collagen builder. She doesn’t like bone broth so the collagen builder is the second best way I could get collagen in her to help line her colon a little and guess what. Her bleeding has stopped.
What is your daily diet like if you avoid those certain foods ?
i had a flare and do not what to eat anymore help annette
HI Annette,
Nutrition is extremely important during a flare and what can be assimilated is specific to each individual. Mostly you need to reduce fiber so as not to go to the bathroom more frequently. And add supportive foods for your microbiome and the gut lining such as Gelatin, Collagen, and Bone Broth. Here is a link for some supportive information on Auto-Immune Paleo diets. https://aiplifestyle.com/what-is-autoimmune-protocol-diet/
I have just been diagnosed with UC …been having blood for past 6 weeks and left it thinking it would go away. How wrong I was….the whole colon is bleeding and the pain is insane….started meds….nothing yet changed ….back at consultant next week for biopsy’s.
The hardest thing is dealing with the mind and the new diet…I just can’t eat anything anymore….so hard. Hope to share my experiences here and receive support from each other.
Hi Adam. Hi everyone. I just received my biopsy results and a confirmation of UC. I have been feeling much better due to the Prednisone and Asacol that the GI Doc started me on, but I’m feeling really overwhelmed and a little scared right now. The symptoms and the diagnosis came completely out of the blue and I got very sick all of a sudden. I guess I just need some support and a plan. Finding this site and reading your comments this morning have helped me already because I don’t feel so alone. I’m meeting with my new GI Doc next week so if any of you have any tips/specific questions that you asked your physicians upon getting your diagnosis, I would appreciate some guidance. I have joined a local support group, met with a nutritionist and I have started taking yoga classes (great for the soul too!).
Looking forward to interacting with all of you… and, thanks! :)
Hi Yvette,
When I go see my GI doctor, I tried to have written down whatever questions I have before I see him, this helps me to not get so nervous when asking him questions about UC. I believe one question I will ask is how does prednisone affect your bones because I have had some aches in my legs and I am taking prednisone and Apriso and feeling alot better, but before this I had a recent flare up from no where for a month,so I am hoping this UC will stay in remission much longer.I hope this helps u!
I got ulcerativecolitis in 2011 so ive had it for a few years im on remicade and its working great.
How soon after beginning Remicade did it take effect? I am on third infusion without it yet working toward remission.
Hi EdZ
Did the Remicade end up working for you? My son is newly on it; has had the 3 loading doses but it doesn’t seem to be helping much (yet). I noticed your post from last summer that you also had 3 infusions without success. Trying to be hopeful.
Thank you
Me too .2011 almost died. Started remicaid and been good since. ASACOL did not work for me.
Hi Adam, I have had u.c. a little over a year and cannot believe the cost of the meds. I have been managing it on my own most of 2015 with no meds but suffered a flare up last week. Got some apriso for getting it under control but am more interested in natural management. If I need meds are there ways to get them cheaper? Thanks for this link looking forward to corresponding with you.
Hi Steve,
There are different programs that exist which are aimed at patients and to allow them to join certain services with discounted medication pricing. I would recommend that you talk to your prescribing doctor and or his/her nurses about those types of programs. They vary wildly from medication to med and from country to country.. Best to you, Adam
Find the pharmaceutical company that makes your drug and go to their website. If you can’t find anything on the site for help with paying for your RX, call them directly. Most places have a card they offer which you can take to your pharmacy for a discount. Keep in mind, this will not work for some mail order pharmacies. But it never hurts to check. I know what you mean about the pricing, though. Ridiculously high for a disease that so many individuals have, the drugs should not be treated like “orphan” drugs, meaning that so few people have the problem that it is not feasible to manufacture the drug with such a low profit margin, so they jack up the price of the drug to make up the difference. Not that the drug costs so much to make, just that there’s not enough profit to make it worthwhile to make it.
Hello Everyone,
I experience my first flare on 2014 end and doctor diagnosed as Ulcerative proctitis. doctor advised me to take suppository for 1 month. After 1 month, i again had bleeding which made me to visit another doctor again. he told that it is Ulcerative Proctitis a mild disease of UC. He explained everything regarding the disease..it is incurable and have to take oral tablet life long (Mesacol OD and Folic Acid). he also advised me to take enema whenever i feels flare up.
Since 1 year i didn’t had any problems. I use to take only 1 tablet per day with folic acid. But few days back i again saw blood in stool with mild piles. Again visited the doctor and he advised the same tablet with suppository.
From this moment i started researching about UC and read various articles and diet menu. I found one food interesting for people with UC and it’s DATES. Dates have the power to cure inflammation in our body. There are many health benefits for dates. It is such a miracle fruit that consists of various vitamins, fiber, carbohydrate etc.
A summary of the health benefits of dates range from:
Weight loss
Relieving constipation, supporting regular bowel movements
Promoting heart health, reducing heart disease risk
Diarrhea
Iron-deficiency anemia
Reducing blood pressure
Impotence
Promoting respiratory and digestive health
Pregnancy deliveries
Hemorrhoid prevention
Chronic conditions such as arthritis
Reducing colitis risk
Preventing colon cancer
You can read the article in detail. (http://www.onegreenplanet.org/natural-health/dares-and-your-health-the-ideal-food/)
I am experimenting dates everyday by having 5 to 6 dates daily. Lets see what the outcome will be! hope for the best.
Thank you for sharing your post, I purchased some Dates in Leicester today. I don’t really like the taste but will give them a good go
Should only be California dates, with no added sugar (they should not clump together in the package).
Jazz,
You mentioned trying out dates as a nutritional remedy for UC. How did that work out for you?
Thanks
That’s interesting about the dates. I always worry about having fibrerous like foods when having a flare up. I’ve had UC for 12 years now and have pretty much had a flare every year except one year. As much as I hate having prednisone it is the only thing that puts me into remission. I’m currently taking Pentasa daily and plaqinil to help with my arthritis in my hands and feet. ( that too can be very painful)
I am thankful that my GI is great to talk to and is willing all questions. Medication in Australia is manageable as our government subsides the cost of medication if your illness is life long. It’s always good hear or read other stories, you don’t feel so alone.
Thank you for your support. I had my gallbladder out but still constant pain !!!
Thanks for letting me into your group
Colin
Hi everyone,
A few weeks ago I had an onslaught of severe pain, cramping, and relentless diarrhea. It stopped for a day then started again. On day five my daughter called an ambulance. I needed to be hydrated big time. Colonoscopy determined Ischemic Colitis. On discharge five days later, I was told to eat as tolerated. My troubles persisted. Someone suggested pro-biotics. Everything eased off for a couple of days. I searched the web for answers, and found Adam’s e-book. Yesterday started your regimen Adam, and believe I’m on the right track. Last night was the first night in a long time with zero trips to the BR. Thanks for this informative group. look forward to reading everyone’s journey and praying the best for all of us! Mary
My husband is experiencing a three- month flare up and starting a course of enemas 5-Aminosalicylic, also known as Mesalazine, (4gm/60gm)
every day for four months. This was after a scope and with the doctor telling Steve, my husband, he had a ulcerated colitis. This was the
first scope my husband has ever had and he has had flare ups before as far back as 20 years. A diagnose was not found and the doctors
did not know what it was. The specialist my husband had this time said my husband had ulcerated colitis and after the biopsy reports were
back, he wanted to talk with my husband. The whole large colon is affected. Surgery was mentioned and my husband said no.
I have been beside myself with fear of the unknown and trying to learn what is the best I can do to be supportive to my wonderful husband.
I found your site and was very thankful for truth and knowing that this was a site with others who suffer from this disease and committed to
helping each other in their journey. I am also thankful for the opportunity of having others helping us to understand with their input. Your
web-site and all the people who come here are a God-Send to my husband and I. This was the first time my husband had been admitted
into a hospital, had intravenous, and knock out drugs in his 50 yrs. of life. My husband blames this flare up on stress and worries about our
14 yr. old and his multiple tumors, curved and coiled spine, dislocation of rib cages that could pierce his spinal cord. Surgery should have
been done 16 months ago, according to a spinal surgeon in Toronto, Ont. Canada, Dr. Zeller was our second opinion there. In Winnipeg
the surgeon says, it’s up to Justin, Justin’s Oncologist says, no…It is not up to Justin. My husband wears his stress with a humble dignity
and keeps it from disturbing life and work, as his flare ups happen. We will be actively involved with this informative site and everyone who
help to make it work to help others. People need People. Thank you.
hospital
Stress has always put me into a flare up. Having this disease for 46 years I speak from experience. My longest flare was earlier this year. I was out of work for 8 mos and didn’t start getting better till the 5 month mark when my stressor stopped. I can tell you that when I was first diagnosed as a teenager I did go to therapy. Might be worth a try or a support group if any in your area. There are a lot of drugs out there so keep trying to find the one(s) that work for him. I think that’s in some ways it’s harder on the spouse. I know my husband has difficulty watching me and not being ably to help. Hang in there!!
Thankyou kind thoughts for you and your helpers .. jill roberts
I have been in remission for over a year. I have stopped taking Lialdaa. The main reason is that I have stopped eating anything with wheat. It puts tears in your intentional walls. Also, I do not eat much sugar. I also take Boswellia extract and Cura-Med. I also started drinking 8oz of purified room temp.
Water with 2 tubs of Bragg apple cider vinegar with a little baking soda and half a tsp of Manuka honey.
.
Congratulations to you, for being in Remission for over a year. Hopefully, you will be in remission for all your life!
I can see Boswellia being sold at Amazon, and it says it is a supplement for Joint and Bone health. I have not been able to find Cura-Med. What is Cura Med and where do you find it?
I may also be close to remission, will find out after my Colonoscopy in a few weeks. Have been on Gluten Free diet for over 18 months, as well as no dairy, no sugars, no high-fiber foods, no nuts, no processed foods, no coffee, no pre-packaged foods, no alcohol, no fried foods, no red meats, etc. etc. I have been drinking home-made buttermilk from toned (low fat) milk, and drinking it at least a couple of times a day, and also trying to do everything I can possibly think of, or read about, but I am still having quite a lot of digestion problems and my (new) GI doctor feels that it may be an issue related to small intestine, and not my Colon (as Colon has nothing to do with digestion, and all digestion occurs in small intestines).
So lets see what happens after my procedure and what the verdict is!
Wishing you all the best and keeping my fingers crossed for you.
Curamed is also sold on Amazon, it is Curcumin in pill form.
Wow! That is fantastic news! So happy for you!
Thanks Laura. Only a Colonoscopy will determine whether or not I am in remission, for sure. And that is not something we look forward to, right? But it has been over three years since I had my last colonoscopy so it may be the right time to get one anyways! Just like everyone else, I too hate the prep. May be even harder in a country like India where it is quite hard to get the things we are used to getting back home, in the USA.
Hello there, I have UC and have spent the last year and a half (since I was diagnosed) working hard to figure out how to control it naturally. I have been doing the specific carbohydrate diet since I was diagnosed. I was taking prednisone and lialda. And then switched to prednisone in a suppository form and canassa, the suppository of messalamine (lialda). That worked pretty well (except side affects) while I was researching and experimenting naturally. Now I am off the meds and am using a herb called moringa and megadosing with 3 different probiotics. I am still doing the diet but have been able to once or twice a week eat off the diet for a meal or have a little alcohol. That is huge progress. I am in remission so far for a few months, since starting the moringa. I also take magnesium lactate as needed for regularity. I haven’t had watery stools in a while. And no bleeding for the past few months, except once when I ate ice cream. When I cheat on my diet I take a product from Biotics Research called Histoplex AB. It is for airborne allergies but I find it helps with the histomine reaction from food. I don’t know if this helps anyone out there. I live in fear of having surgery and a colostomy bag. My ulcerative colitis was very bad but is now considered mild and currently in remission. Just the pain and bleeding and urgency itself has kept me on the straight and narrow. It’s not easy but I have found ways to make the lifestyle work for me. It helps getting to the point that I can now occasionally have the foods that matter the most to me. For me potatoes and wheat are very bad but I can eat corn with no consequences at all.
Hope this helps someone!
Looking forward to following your site, Adam! I’m experiencing my second major flare up in 7 years, looks like I need to take things a bit more serious so its great to find others dealing with UC, Cheers, -D
Hi look forward to reading info about UC got another bad flare up after 15years. Due to have colonoscopy Monday :-(
I have just been diagnosed after lots of testing over the past several months. I have had several bouts of joint and lower back pain. I had a glass of sweet green tea and some fudge pie today. I am wondering if the sugar could be adding to the problem?
Hi Angie and welcome to the, group. Lots of people with UC can’t tolerate many of the sugars and carbohydrates that are so common in today’s meals. Things like fudge pie, cookies, grains and most other sugars other than honey and natural sugar within fruit are often real difficult to digest and can lead to inflammation for many of us (myself included:).
Thank you so much for creating this page and helping others out with this frustrating disease.
I was diagnosed with IBS 3 years ago and written off by a slack GI. He said to simply quit my job because it is too stressful and do something else…yeah okay. He finally performed a colonoscopy in August and discovered that I have UC. I continued to have problems and my symptoms steadily worsened. I tried Delzicol, but it wasn’t helpful. I couldn’t handle the negative side effects.
I started seeing another GI who completed a simple hydrogen breath test in December. On this day, I was surprised to discover that I have Fructose Malabscorption. It was frustrating because I wish I would have found this out 3 years ago when I went to the first doctor.
So, I have been told to avoid sugar, gluten, and some dairy. Needless to say, I am struggling with these limitations. I recently went to see a dietitian in my area, but I ended up educating her on FM because she didn’t have any knowledge of it. I am fairly new to this and I was very discouraged by the fact that a professional didn’t have any knowledge or guidance to provide.
Is it common to have FM, IBS, and UC? Any words or wisdom about my conditions would be much appreciated. Thanks again for all you do.
Milk? A vast majority of people with UC are lactose intolerant.
Hi there, im really glad I found your site. Its nice to hear from others with UC.
I have had it for over 10 yrs now was i remission for a while but following the birth of my son have been flaring ever since. Been on pred amongst other drugs for way too long now so am going to have remicade soon….keen to know everyone’s thoughts and if there were any horrible side effects.
thanks
Hi Rachel,
Thanks for joining us:)
You’ll learn pretty soon and it’s mentioned in some subsequent emails, but for now, there are many different pages on the site individualized with reviews from other UC’ers regarding specific medications. For example, here is the Remicade reviews page you can check out when you get a moment:
https://ihaveuc.com/remicade-reviews/
I hope you enjoy the site and the newsletter and thanks again for joining us:)
-Adam
Thanks Adam. Really helpful. Due to all the steroids im taking my immune system is so low i now have Bronchitis and on anti biotics which is making the UC flare up even more. erghhhhh. Looking forward to starting the remicade at least ill be trying something new and the reviews are good….not as scared to try it out now. How did you personally find remicade?
Remicade didnt’ work for me as a long term solution. The first dose was like a miracle, however my body didn’t respond to the 2nd or third and it was then decided not to move forward. But that was only me, many from the site have found it to be a great treatment. I wish you the best:)
I’ve had UC for 48 years. It is best to avoid sugar, diary and some glutens. I loved Remicade for 3 years. After that I developed their many side effects. Have been on Humira for 4 months without good results. Am getting ANOTHER colonoscopy on Tuesday to determine the removal of my colon. I doubt that I will miss it much. I am so sick of it all!!
Jeannie,
My GI has me on allopurinol and azathaprine combo. I have had UC for 35 years with just 2 or 3 really bad flares, but the last one I couldn’t get off the prednisone. You might want to try another GI before surgery. Best of luck.
Hi everyone, I was diagnosed with UC in 1999 and was hospitalized at that time. I had flare ups during my 3 pregnancies and had been symptom free and med free from jan 2010 until tonight. I suppose UC started to niggle on Xmas Eve, Then last Saturday night I rolled around the bed for 3hours in pain. I’ve been fatigued this week and tonight my old friend reared it’s head. I am so sad, I have no medicine and predfoam, that works so well for me, has been discontinued on the UK. I have work tomorrow and I just can’t face this roller coaster I’m about to step on to..
Thank you so much for all of the information on this web site. My son, age 12, was diagnosed in October. I wish I was the one with the disease (as I’m sure every parent wants to take away their child’s pain). As the person who is responsible for reminding my son to take his medicine as well as the person who provides all of his meals and asks about each bowel movement, I am experiencing so much of this with him. He is in need of a group of people his age that are experiencing what he is going through and I am in need of parents for support. He is currently on prednisone as he has not reached remission since diagnosis. We are hoping that this course of medication will put him on track. There are a lot of unknowns in his future and we both appreciate all of the information and support provided in your site.
Hi. It looks overwhelming at first glance I agree. Grandson was diagnosed last year with UC -has just experienced his 2nd flare up, but extremelhy stressed about college acceptances, grades etc. Changing Dr’s now as they said he could eat or drink anything! WRONG This has a stress – anxiety – fear component – He’s college bound so I am the primary researcher for the family to get a handle on this – especially from a dietary philosophy. ‘We have gone to a macrobiotic diet – Gluten-Dairy-Meat-Egg-Alcohol-free – Look up Kushi Institute for the nutritional edge you NEED in learning about this nasty disease. We are going to change to Cornell Medical Center – the bacteria component is huge so no sugars which LOVE to grow bacteria. Actually the nutritional plan is delicious if you can research, have about 3 weeks to familiarize with the sea vegetables. focusing on alternatives to the diet he/she was eating. Dishes like Split Pea & Lentil soups are delicious as well as beans with rice. Stay focused on getting son well and that colon healed. We are phasing off of prednizone(too many side effects) and have gone with probiotics (50 billion), L- glutamine, gentle iron that does not constipate, vegan protein shakes and yesterday found split pea chips (delicious substitute for junk chips)! I believe he will be able to sail through college if he can find a group of supportive friends that he can open up to about this disease and hopefully an apartment to cook!!! Good Luck…P.S. We are all deciding we have eaten WAY TOO much meat and not enough veges.
My son is 22 and has had crohns since he was 11. For most of the years he was suffering except for about three years on remicade. The worst part was times he took prednisone. It was so hard to get him off of prednisone. I used the specific carbohydrate diet, wheatgrass, homemade yogurt. When he was young he thought he could cheat at friends’ homes. January 2014, it was at its worse nothing was working the gi at U of Colorado hospital sat us down and started to tell us about removing his colon and saving the rectum. We all had a wake up call. This GI put him on the highest dose of prednisone, remicade every 4 weeks max dose, and he was just off of humira. I argued with this GI, I wanted uceris instead of prednisone. GI said it was too weak. I went to a chiropractor that uses lasers, GI relented and prescribed uceris. Uceris was working great, went off remicade because tests were showing it was useless. He stayed off dairy, (except for organic Amy’s pizza). Ate mostly meats and veggies. Then went on medical marijuana. We found a dispensary where one of the owners’ son had crohns. We got the highest cbd lowest thc weed. He didn’t like to smoke it but did about once a week. He also went to a counselor to handle stress and learned mediation. By May of 2014, he was feeling much better. He had to get off all the biologicals before he could start Entyvio a new biologic fda approved. He was off all meds except for weed. It was comical, I would call down to him in his room whether he smoked weed and why not. In August he started the Entyvio, surprisingly his blood work was perfect before he started it. Also, his chiropractor was like the best mentor he saw him 80 plus times in 2014. Sometimes three times a week. Each Entyvio iv his bloodwork was fine no inflammation! Every 8 weeks he took the 30 minute biologic. Still does today every 8 weeks. In December, 2014 he had his colonoscopy. This was the first time the GI was able to complete the colonoscopy. Usually the inflammation was so bad the GI was afraid to go further to avoid rupture. The GI did not even come out to tell us the good news. He had a perfect colonoscopy a few benign polyps. No scar tissue. This GI is head of the U of Colorado inflamator bowel disease group. He wrote a paper that summarized many research papers talking about medical marijuana and crohns. He is requesting more studies. But I know that weed was part of recovery. Write your congressman. Come to Colorado make phone calls. Don’t take the oils, you need to have him smoke via a bong the Harliquin. There are so many strains that are low thc. My son does not smoke it anymore. I don’t know what tomorrow will bring but right now we believe he is in good shape. Good luck, take care of yourself as the caregiver, go to a counselor. This is a tough job!
I’m 49 and have had us for yrs, I am on disability(from 23yr career), had a fecal transplant and was on many drugs for pain never in remission. Living in Colorado, I took another route-medical Maijuana. 1st of all, I was concerned because I don’t smoke-I still don’t I take a hard candy. 10mg Indica (Indica is the strain) in the morning & 10mg Indica at night. I do not take any pain Meds now-no narcotics, no Tylenol, only my uv Meds & I am in remission. It took awhile to figure out how much, what kind, when,etc because the retailers cannot advise you. The one thing I do know is the Indica strain is the one to use, not Sativa. Start slow..it takes a couple hours before there is relief but then life is good again. I do have 4 Percocet in my drawer that I keep-they are leftovers. I just do like it when medical majijuana is seen as bad, but narcotics are seen as good. That’s like saying smoking is bad when you’re sad, but drinking alcohol is okay when you’re upset.
Hi I have been diagnosed with uc 3 5weeks ago. The dr said I have left sided colitis. Almost 1/2 of my large intestine is ulered. He put me on med and suppository.
Recently diagnosed with UC after a colonoscopy. Was having trouble since May after my Uncle died, my father died and my husband got laid off. Can you say STRESS?
Gastro MD says stress has nothing to do with it. I dont agree. UC in descending, sigmoid and rectum. He put me on 4 weejs of prednisone!
Also do not sleep well for several yrs now due to snoring hubby and dog that wakes us up at night. Adrenals screwed up from that. Working with a Nutritional Resoonse Testing kinesiologist/chiropractor who has lots of experience with UC and Crohns. Also my (amazing) primary care doctor is a Naturopath who does acupuncture and Chinese Medicine. She has often resolved problems for me and friends when medical doctors can’t. Anyone try NRT before? It’s pretty amazing stuff.
Hey Lee,
Thanks for joining us. You’re not alone with regards to your thinking about stress and it playing a part to some degree in our UC. When you have a spare moment, you will probably find the results of the “UC and Stress Survey” pretty interesting. Here’s the link to part one of those results:
https://ihaveuc.com/colitis-and-stress-151-patient-survey-results-part-1/
Thanks again for joining us, and can’t wait to hear more from you and things go in the future with your UC.
Best,
adam
Hello…I recently found this website. I was diagnosed with UC in 1999. It has been under control for the most part. Over the past couple of years, it seems no medication will work except for Prednisone. Currently on Humira weekly and Uceris. Just got approved for Simponi. That will be the next thing to try. It can get depressing trying to find a remedy that works but remaining positive helps. Hang in there people. You are not alone though it feels like when you are going through a flare up. I appreciate websites like this one to help people reach out to others that are going through the same.
Regards,
-Henry
I’ve been diagnosed since August 2014 and am currently going through my first flare up. It’s been happening since January, and I only got about 2 months of remission, any encouraging words are welcome please!
Hi
I was diagnosed about 3 years ago and have been on various medication. Now I think I am in remission yet I suffer from side effects of the many drugs taken. I put on heaps of weight from the steriods, then lost about 18% of my body weight after I changed to another drug.
I have to take 100mg of Azathioprine but because it makes me dizzy, I take 50mg separately during the day. Now I have terrible joint pain which affected both my shoulders. I have difficulties getting dressed, put on a bra, reach behind my back, reach high, even raising my arm hurts. I have problem sleeping, feeling weak and very low in energy. I also tried taking probiotic, energy supplement, but the joint pain would not go away.
I found your web site last night and fingers crossed you can help me get off the medication and the active me back!
Cheers
PY
Hi I was recently diagnosed with colitis after being sent to the ER with severe pain mucus and blood in my stools. I was prescribed antibiotics which helped but didn’t solve anything. Now going on a month with a continuous flare up I have a appointment with a GI for further diagnosis but was wondering how everyone keeps their heads up. The depression and mental strain in driving me crazy and I just don’t know what to do. I am currently uninsured as well so going and getting tons of tests done is not feasible at this point in time but any help advice and support would be greatly appreciated
Thanks
Greg
Hi, I just found this website this morning, i’ve been with UC for almost 2 years, I’m presently in a very hard flare, basically anything I eat it make me run to the toilette. I started prednisone 3 weeks ago but it’s not working at all.
I read that L-Glutamine could help during a flare, did anyone tried it out L-Glutamine and if yes did it work?
By the way, is really cool to finally find people facing the same problems as I do.
Thanks
Dennis
Welcome Dennis,
and take a look at this page about l glutamine:
https://ihaveuc.com/l-glutamine/
As a Mom of a now 22 year old son that has had crohns since he was 10 and still has a gut, I wanted to let you know what has worked for him. Don’t know which did individually, but combined he went from needing surgery January, 2014 to a great squeaky clean colonoscopy in December of 2014. Still doing great even after a bad flu virus hit him in January Still on Entivyo ever 8 weeks and 10 mg pill of methotrexate per week, he probably doesn’t do.
His bloodwork was normal by the time he had his first Entyvio 8/2014, he is still on it, we believe it has less issues than some of the other biologicals. Jan 2014 he was moved from children’s GI MD to an adult. Within 5 minutes of his appt in Jan the GI said “Are you ready for surgery?” We can save your rectum blah blah blah. We said NO! He was put on high dose steroids, and remicade every 4 weeks max dose and methotrexate 25 mg by shot. Live in Colorado, he started med marijuana, high cbd, low thc. Laser by chiropractor, gluten free diet, counseling to start mindful meditation, and about May he stopped methotrexate and remicade, went from prednisone to uceris. Drank protein drink (plant fusion brand with berries, papaya, green and red powders and gingsing and Sovereigns colustrum also VSL#3,) avoided non organic dairy, soy (probably the biggest culprit), ate meat and vegetables mostly.
If is colon was clean, did you think of going off meds?
dawn
I was diagnosed with UC on Friday after 2 weeks of symptoms. My GI told me my colon looks like someone pored scolding hot water down it. I’m on 40 m prednesine and Asacol to start and low residue diet. Just wondering how long it takes for meds to work? My profession is Physical Therapist and cannot work at this time. My first flare 53 years old and could always eat anything..
I’m glad to have found this site.
Take good care.
I am in the same boat as you. I just had my colonoscopy today and was diagnosed with moderate UC. I am still in shock and can’t believe it just hit me all at once at 40. The last few weeks have been hell. I can’t work, because of the bathroom urgency. I can’t even leave my house. My anxiety level is thru the roof. I lived such an active life, always outdoors…shopping, going places with my kids, traveling. And now I feel like my world has ended. I was put on prednisone and lialda. We shall see how this goes. Looking at these internet sights in regards to medication management is highly discouraging. The side-effects are just awful. What about quality of life? What kind of life is this being trapped inside? I will try a few meds, but that’s all. If they don’t work, I hope they give me the choice to do surgery. Take out my colon and give me a stoma and poop bag. At least I can live the life I used to without worrying about crapping my pants all the time. This is NO life.
I have had UC for 10 yrs now . I’m currently in a bad flare . I also have Celiac Disease which is hard to eat anything . I have been in the bathroom 15 times a day . I called my GI he put me on 40 mg of predistone daily , been taking Asacol for years 2 twice a day . I’ve been on a liquid diet , adding jello , fresh fruit , and Gluten Free Cereal slowly for 4 days now . What helped me the most and finally gave me a normal bowl movement not just mush bloody stool size of rabbit droppings is CANASA SUPPOSITORIES . My doctor called the in and finally my flare is fading away . The medicine is inserted directly into the colon so it works the fastest. I hope this helped , because I haven’t read any comments on CANASA Suppositories .
Thank you!!
Hello, I was diagnosis about a year ago, and retested to find out I did not have IC, but now I am having a severe flare up and now I am on Prednisone, the lowest dose til I come back for my cultures, but I too find that Cannas offer fast relieve, so I am glad we both agree this have been some fast relief, but I am going to seek another doctor opinion, because my doc did not put me or any antibiotics and he say I have a severe flare up? Time is of escessence, What do u all suppose I do because I am allergic to alot of antibiotics, and metrodonizole, make me sick is there any other antibodies than Levi quin, sulfur, Cipro, penicillin allergic to them all.
Hello,
My names Sian. I was diagnosed with UC last month at the age of 19. I suffered badly and went to A&E as I couldn’t cope with my symptoms and appointments were taking too long. I’m really glad I’ve found this site as I’m new to this and im still learning about it. I look forward to reading all the information you supply!
Thank you
Hi, my daughter (18yrs) has just been diagnosed with UC/Kroyns not sure yet. Allways healthy and athletic, plays soccer at top level and is a personal trainer. two months ago she started having all of the symptons, severely. But one week prior to colonoscopy symptons started to disappear by themselves(no Meds). Now, she is on meds/edema.. I’m thingking would it have cleared up by itself…does she actually need meds? specialist has said she will probabley need to go on steroids aswell. Can we just forget about meds and focus on diet??or is that dangerous? all seems very confusing!! even the so called colitis diets say different things.
Hi everyone – just found this website – My son, 5, has UC. Began when he was 2.5yrs old. His Dad and I feel us breaking up (was a stressful time for us all) and some dietary factors triggered it. He actually also had colic as a baby – and yet I continued to drink raw dairy milk, not realising he may have been effected etc. etc. many things I could have done differently…IF I had known.
Was a stressful time for my poor little boy. Anyway we have been on a journey of ups and downs. About 4 or 5 major flare ups, one caused by Salmonella poisoning which required two week hospital stint early last year. Anyway he is on a few supplements, mesalazine, paleo diet with restricted sugars (yes apart from raw honey and fruit) and just now we have been guided to try the probiotoc ‘Mutaflor’. Love that the internet makes it possible for people to support one another, share ideas and learn from each others experiences!!!
Tania
I’m so sorry your son has been stuck by UC. It’s a horrible disease but I must point out, an overwelming majority of UC’ers live a happy live and it’s certainly not a death sentence.
It hope it helps to say that there was nothing you and the father could have done differently to stop UC developing so don’t be hard on yourself and certainly don’t break up over it. Your little boy needs a strong family unit to battle UC head on. Talking about raw milk i’ve watched a number of documentaries about raw milk and there are some people that claim drinking raw milk has a protective aspect and could prevent various diseases. The jury is still out but I would say it did not have a part to play at all.
Stay strong.
Tom
I was diagnosed with proctosigmoiditis several weeks ago after several weeks in denial thinking the rectal bleeding was due to hemmorhoids. After the colonoscopy, the results came back with the UC and also c-diff infection. I am now finished with Flagyl to eliminate the c-diff infection and one dose of mesalamine enema eliminated the bleeding and numerous stools during 24 hours. Here is my gripe…the cost of the medications. The enemas co-pay is $240 a month for a daily dose (30). I told my GI physician, this was a prohibited cost for me and he ordered Asacol 360 pills per month initial treatment only to find that will cost me $450 a month. I am finding living in the good ole U.S.A, pharmaceutical companies charge so much more for the medications compared to Canada and/or the U.K.
I have found that sulphalazine (sic) is less than $100 a month. Would appreciate any input.
Hi Virginia,
Thank you for joining the site, and thank you for your questions. I totally agree, medication costs are extremely high for some people depending on insurance and where exactly you live(country etc…), and USA is most definitely one of if not the most expensive spots for meds.
What you might want to ask your doctor or the nurses at that office is if there are any current financial help programs. The doctor or nurses could ask the pharmaceutical representative that they have for the specific meds you are using, and that person should know if any are available to you. There are different programs that run from time to time, and you may be in luck, but that would be my first move to see if there is any financial help available to you regarding this.
My 7 yr old daughter was diagnosed about 1 1/2 years ago with ulcertive colitis. Just looking for some answers and advice to cope with this. So far symptoms have been relativley mild. Currently on 1500mg pentasa and weening off prednisone at the moment. And finishing up a round of flagyl for tge CDIFF she got. GI has to to us about Imuran. Im scared though.
Welcome Gary, and thanks for joining the site. Read through the free ebook, some good ideas in there that might help you out. And, take a look at the medication review pages, lots of great info there from hundreds of other UC’ers on their experiences.
I was diagnosed with Colitis 5 years ago interesting enough 6 months almost to the day after I quit smoking. Had I known I would never trade in the smokes for the pain and suffering I have gone through over the initial diagnosis and 3 rather mild flares and one monster flare in the last 6 weeks. My GI said this is common although not conclusive as a cause. But you know where my opinion lies.
I used prednisone successfully about 15 months ago for a second mild flare and went back on it for this flare unsuccessfully. Went to the hospital for 6 days and took prednisone again intravenously which saw some improvement but shortly after discharge my GI said enough to with the games we were going to Remicade with the first treatment yesterday. Today I feel like a million bucks physically, but only a moderate improvement in the washroom today. Still taking prednisone and Mezavant until the third infusion is the plan. I’m 64 and hoping the Remicade will give me some comfort and enjoyment in my future retirement. I live in Canada just outside of Toronto, Ontario and have read many of the comments about cost and insurance and the lack thereof. I cannot begin to imagine what this nightmare would be like without my company insurance and our provincial medical plan. My heart goes out to anyone in that position, keep talking and bugging your medical associations and politicians for help someone here suggested sending pictures to them. I will keep you posted on my progress and wish you all the very best in the journey.
Murph
Hello again
Round two last week for my Remicade infusion. Not as successful as the first actually terrible almost felt like I was experiencing a mini flare within hours. Terrible few days afterwards but settling down now. Seeing my GI in a couple days for review and look at blood work. Will update after that.
Murph
Thanks for the update Murph, and hoping all goes well and the doc visit was useful. Keep us posted,
Adam
Update
My visit to my GI was informative I am now adding Salofalk Suppositories to my regime nightly. It would appear that my back door is still very sensitive and inflamed from my major flare a few weeks ago. The Salofalk suppository combined with Nefadiprine ointment has and is making some headway albeit slow it is headway for sure. All the medication is playing havoc with my sleep patterns up a 3am for the day exhausted by 7pm in the evening. I still put in a full day at the office or on the road. I seem to need 2 or 3 even 4 visits to the WR to empty myself early in the morning and then again in the evening over a period of up to 30 minutes. In between daily WR visits during the day I am generally OK no problems. Reasonably well formed movements no blood minimal mucous but substantial discomfort, not nessessarily painful but very uncomfortable like a tough strain or stretch during and after for up to an hour. Thing are getting better there is light at the end of the tunnel……
Most of my problems seem to be minimal as compared to many of the contributors comments I’m reading. I wish I had something more positive to offer, what I can tell you is that many of the comments I have read have helped me make decisions and take action with my treatment so stay tuned to this site there are excellent helpful comments and solutions to try and be enthusiastic about. keep reading every day as I have found relief and helpful information from all the contributors. Keep in mind if today was a little better than yesterday look forward to tomorrow.
Murph
Remicade 3rd infusion in 2 weeks
Mezzanine 4 pills per day
Prednisone finished
Salofalk suppositories at night
Nefadiprine ointment as needed
Well kids after almost 5 months on Remicade my GI say it’s not working and my colitas is still active although if I had to adapt to where I am today I could. I am a far cry better than what I was several months ago. So I have now had my initial infusions of Entyvio and my first maintenance and have weened off prednisone down to 1/2 a tablet a day and boom some slight bleeding and a very mild flare so back on Pred and another infusion of Entyvio. GI has me going for Entyvio every 30 days in hopes this works and get off Pred once and for all.
Doc has brought up surgery a few times and frankly I will go back on the smokes, try med pot and anything else before surgery, I just can’t rap my head around surgery, stoma, and everything that goes with that. Since my last infusion things are better and I can adapt to where I am. Stay tuned will keep you advised.
Murph
Good day all it’s been 11 months since my last update and honestly not a lot has changed except Entyvio was a bust after almost 8 months of trying. Let me clarity it was a bust in terms of a full remission but I got to a point where my UC is was manageable. I don’t ski any more and golf is limited, but hey in terms of problems and what I read on this site I should not complain at all I have it easy compared to some and I remember that every day rest assured.
In December 2016 we stopped Entyvio and started Humira and Imuron along with Cortiment to replace the Prednisone I was up and down on. Prednisone and I get along very well luckily I have no noticeable side effects at all except that I feel so good and am clear of symptoms I forget that I have UC and get into the beer or the BBQ chips and generally pay the price within 24 hours. As you may know Humira takes between 12 and 16 weeks to take hold and in between you don’t have much helping you and after about 4 weeks my GI called be at home on a Friday night and said no more Imuron based on some blood tests that had come back. So 9 days later I seem to be turning a corner. Last night I slept for 10 hours with one wake up for a pee no sit down just a pee. Normally I could be up 4 or 5 times a night pee and a site down pass some mucous and back to bed. Last night was amazing a full nights sleep wow is all I can say. I have had three quick visits to the WR this morning and I feel empty now and it’s only 9 am this is great really great . I hope some positive changes are finally here an. I can watch the Pheniox Open this afternoon and enjoy it all..
In closing my message to readers in simple keep a positive attitude as best as you can there is always light at the end of the tunnel and always a new path the look into. Even if you have tried something in the past and there is something similar you have not tried go for it. The one thing that is written in stone is that every person with UC is different and no two cases are identical keep looking for solutions and hopefully you will find one for your best result. Stay tuned more to come I’m sure, planning to ski and play great golf again one day….
Murph
Thx Murph for the update and especially BIG thx for your positive outlook,
“FORE” :),
Adam
I also got my uc after quitting smoking.
Thanks for the site, I was diagnosed May 2013. Stayed in Emory for a week. In atlanta. Was subscribed. Laila. Lost all of my hair
Hello! Great site- what a minefield of info.
Five days out of hospital after first big flare since being diagnosed nearly two years ago – was in for nearly three weeks. Can’t fault the care I had there. Was on IV hydrocortisone 400mg to get under control, now on 40mg preds.. Such a moon face! Feel so wired all the time and ready to go back to work but need to remember the steroids are lulling me into a false sense of being well- I need to let my insides mend and try and rest! Alongside 2.4mg octasa twice daily, started azathioprine three weeks ago, and while I wait for that to work, humira for 9 months or so. Oh and salofalk nightly enemas. That’s all!! So grateful for the NHS and my amazing IBD team!! Had a flexisig last week which showed a lot of scarring, ulcers, bleeding and inflammation still but I’m not in any pain and my symptoms are vastly improved now- one or two BM a day as opposed to 20 with very little control and bleeding.
Gradually introducing fibre back into my diet and reducing the bad stuff – have been on low res for a while now… Can’t wait for a salad and some non mushed or peeled fruit and veg! Feel like type two diabetes waiting to happen right now but I know is only temporary! Very interested in the difference modifying my diet will hopefully make when able to.
Again great site and great to have a place to ask questions and vent and know there’s sooo many others out there in the same boat as me… Or much worse…. Helps to get perspective.
Jenny (age 31, Chester, UK)
I was diagnosed with UC a year ago this June. GI started me on Asacol (800mg three x a day) This seemed to help at first but have had a horrible time in the last 4 months. Became very anemic so GI put me on iron supplement (Integra). This has flared me up worse. Caused lots of accidents and running to bathroom. On top of all that, with endoscopy, (to check for possible internal bleeding) I was diagnosed with H-pylori! Went thru 10 day Pylera antibiotic treatment for the H-pylori and that REALLY flared me up. GI is now going to put me on prednisone for a short time and then Remicade. I’m very sceptical about the low immune system side effects. Does anyone have any similar issues? Any helpful ideas? Natural herbs?
I have had colitis since I was twenty & I am now seventy four. I have had many many flares & hospital visits. The doctors wanted to remove my colon at one point but I said no. I haven’t had any real flares for a long time now, but still lots of diarrhea. Recently I came across a book called “And They Said It Wasn’t possible” by Karen R Hurd. This is a great book! Explains everything so clearly & simply. I started following the diet somewhat because I haven’t really had any flares & after only a couple of days the diarrhea stopped. That was two wks ago
& I’ve been normal ever since. Boy what a relief!!! The part of the diet that I have been following is eating 1/2 cup of beans three times a day & this has been very easy for me. Some patients in the book were quite sick with colitis & they seem to be cured. I wish I had known this a long time ago, it would have saved me so much misery. Please check out this book on Amazon if you our suffering, it could really help.
Thanks Bonnie! I was diagnosed in 2013. Mesalamine enemas 2 times a day for 1 1/2 years, then 1 time a day for 1 1/2 years. 2 Asacol once a day. Occasional flare ups now and then. Not sure what causes it but something in my diet for sure. Once after a spicy dish of Chinese food. Either the MSG or peppers got me. Recent flare up could have been either 2 glasses of Moscatto wine, high caffeine and/or chocolate. Ugh! Almost down to nothing fun to look forward to. Will get the book, thanks for the site Adam.
Mari
Hi Bonnie. What type of beans was the book talking about?
I have a 10 year old who is currently in a flare. I need some simple lunch ideas for her. She goes to summer camp which is why it needs to be easy for her to take.
Any thoughts on how to get rid of mucus?
On SCD for about 3 years and about 2 months ago I tried some non-SCD foods and gradually got into a flare. Started the intro over. Stools are not really solid but not runny either but smell toxic.
Blood seems to be lessening but the mucus is still sending me to the bathroom, just to pass gas. I am taking a few supplements, all SCD legal. I backed off of probiotics because they seemed to give me more gas, blood and mucus, but will start again soon, introducing very slowly.
I just can’t seem to get a handle on things this time and they are improving so slowly – I felt I would be showing improvement weeks ago but I almost feel I am at a stand still – down to 103 lbs.
I don’t want to go back to the Dr as they want to do a colonospy once a year, yet the treatment never changes, only their income. I have been off of the drugs for 3 years and don’t want to go back. The drugs gave me nightly fevers.
Any thoughts?
TM,
I wish you the best of luck. The mucus is for sure annoying, but I myself remember that even once sysmptoms seemed to be nearly gone, mucus still remained for some time, myabe a month or so as I recall back in 2009. It did finally leave and go away and I suspect the same will be happening with you. I personally think that mucus if not present with the other symptoms is not nearly as bad as other options/symptoms we all know too well.
best to you,
Adam
Hi I’ve been diagnosed with uc for 7 months now I’m having a flare up this current moment I’m so depressed about it I don’t know what to do anymore . I been in and out of the hospital and they always send me with pain medication and steroids. For the past two weeks I was constapaded. Then I started having sharp pain in my stomach the whole stomach nausea and then fevers a bloody stool. After that I had to wait a whole week to go to the specialist she put me on asacol and nexium as well as dicyclomine she said it was okay to take it together as well as predisone I’m still in a lot of pain and I just don’t know what to do anymore just wondering if anybody is going through this and what to do I’ve been having ugly thoughts like ending this I’m only 21 I’m so sad and devestated I bearly eat . And my family is running out of options they have been my main support please help think you
Start the specific carbohydrate diet. No grains, no dairy. And find some weed high in cbd low in thc. smoke it don’t use the oils unless it’s CO2 derived. IF your state does not have medical marijuana. Find the closest that does. Try uceris instead of prednisone. Another thing that worked for my son was counseling, meditation. Physical Therapist that do functional therapy medicine. Look under Johnson and Johnson in Steamboat Springs they have referrals. call their office 970 879 4558. And also a medical person that does laser healing. My son is on Entyvio every 8 weeks but he was fine before he started. read my reply above to a mother Feb 2015. Good Luck. Do not give up. Find quality weed in a state that allows medical marijuana. Low THC high cbd!
Has anyone had any success with VSL #3?
Marcel L.
Some reviews on that product by site users here:
https://ihaveuc.com/vsl3-probiotics/
I have been on VSL#3 DS and do notice change for the worse when I miss a dose
I have had this disease since 1970 when I was almost 15 yrs old. I’ve been through it all and have just started Entyvio due to flare. Allergic to remicade and also on humira and Simponi both of which worked for less than a year.
I do notice a worsening of symptoms when I miss VSL. Take it twice a day
Just got diagnosed with UC two weeks ago, after 7 months of going to doctors and hospitals. this is very worrysome. one thing i read says dont eat this and the next one says you can? i just need to figure out how to get my strength back, feel so very weak, all i want to do is lay around and be lazy. I have never been sick like this my whole life and i am 53 years old single and work two jobs, help!
Evelyn I’m so sorry .I know this is scary to go through.If you don’t have a GI doctor you need to get one.I would go get a probiotic for colon health over the counter at any drug store. About what to eat ,I’m still trying to figure that out . I’m in a flare up now ,its alot better but not gone .I’ve had 2 flare ups in less than 2 yrs. Before this I had been in remission for 22yrs.and wasn’t on any meds I hope the best for you and let me know how your doing it does get better.May God Bless You
I find that along with medication and having had this disease for 46 yrs when in active flare I stick to protein and carbs. Nothing carbonated. No fruits and vegetables. Eat yogurt and apple sauce daily to take VSL#3 which is supplement for UC requiring a prescription You need to get a GI specialist
My son was just diagnosed with UC 3 months ago and is taking lialda, cortifoam and prednisone. He’s on his second flare now. It’s very frustrating as he has just started college and is very depressed. I’m thinking of starting him in probiotics and l-glutamine. I’ve read that some have had success with this. Can anyone give me any info in theses natural supplements? Any info is appreciated. Thanks for listening.
Hi Linda,
You should give a look at the l-glutamine reviews page where other UC’ers have left their personal reviews of that:
https://ihaveuc.com/l-glutamine/
Also, here are the results from the probiotics survey where 129 participants voiced their opinions:
https://ihaveuc.com/129-person-ulcerative-colitis-and-probiotics-survey-results/
I wish you both the best,
Adam
I’m trying the natural route as well…. It’s not going to get better over night. This have to be routine. I take Dr ohira Probotics, also a probotic digestive enzyme with every meal. I drink moringa tea, and also I get raw Ginger root and make it to a tea as well. I also take colloidal silver for my immune system. Peppermint oil I rub on my abdomen and I also take in a gel form. Rose oil stop with bleeding. I cried the first couple days because the on and off pain i had and as of now I’m going thru a flare but its not as bad. I’m determined to heal my self because the medications side affects aren’t worth it. Glad I have an amazing praying mother. I’m going to start documenting everything so I can have more info
Hi I am a 37 year old female just got diagnosed January 2015 with UC was healthy and active my whole life have not had any relief at all since I started getting symptoms on asacol to manage it and started imuran a month ago with vomitting loss of appetite and very very tired all the time also just started the prednisone today and now I can’t sleep. I can’t eat dairy products at all anymore along with things I ate all the time such as onions mushrooms peppers sugar and any and all processed food. This is the devils disease came on suddenly and no history of this anywhere just hoping I get relief soon. Just found out my baby niece she is 10 may also have this awful disease will find out Tuesday.
My new update
After almost $100K in Remicade infusions my GI has determined it was not doing the job. All be it I could have adapted to the current status as it was manageable. At any rate I have now had 2 Entyvio infusions and a third on Tuesday next and I am happy to say the improvement in my condition is incredible. 1 or 2 visits to the WR in the morning and I’m generally done for the day. Urgency, cramps, mucous bad dumps all gone….touch wood quickly , I did. I am in the best place I’ve been in 5 years and am really optimistic I have found a lasting treatment. Entyvio is a biologic but it is highly focused on the colon area and I have haven’t had any side effects at all. I am down to 3 tabs of prednisone a day and will be off entirely by Christmas I hope. Entyvio like everything else will work for some and not others but it seems to be working for me now and it’s less than 1/2 the cost if Remicade. That’s not a knock on Remicade it’s a great drug and their people are great as well but it wasn’t a winner for me. The best news for me is I can now have a few ice cold Coronas without any negative effects, there is light at the end of the tunnel.
Keep a positive attitude , that’s he second best daily Med you can take .
Merry Christmas and the best of the season to all.
Hi everyone, I have had UC for 30 yrs with some hospital stays included. I am now in a flare of last 10 cm of bowel this time, and have been for 3 months.
Because its not as extensive this time, I feel the ibd nurses etc think you shouldn’t feel as bad,but I am terrible these last few weeks. Had enemas and suppisitories but not working. Was taken off Azathioprine after very successful 15yr remission as they were worried about long term effects,now on pentasa granuals which are not helping. I am now bleeding a lot with clots,and am due to see the consultant today, how do you all cope with work reaction and being off? Thanks in advance .Clare
Hi All, i was just diagnosed with UC two months ago, Have had 3 rounds of Remicade and now my dr has put me on Azathioprine 50mg a day. He said i was a high to severe case. I go for blood work once a month ,,i guess to monitor something? and really didn’t tell me much else…Like what to eat/drink!?? if there is anyone out there that can give me some word of advise i would very much appreciate..this is all new to me!…I am feeling better these days and started eating my normal foods..is that OK??? and i like my beer on the weekends too..is that ok??? i seem to be ok the next day on this…but even if i feel ok..am i damaging my colon ??? appreciate any advise from anyone…thanks !!!!
Hi everyone,
Thank you so much for your comments – i am the only one in my family that suffers from UC and have felt very alone at times. I have had UC for 14 years. After I was diagnosed, the med I was put on had me in remission for 10 years. I thought I was cured! However, the past 4 years I’ve had a flare every year, and am just coming out of a terrible one, but only with the help of prednisone. I have been on several medications that have all failed, and am about to start Humira.
Any comments about Humira from the group? I would love to hear your experiences with it.
Thanks :)
Kari
Hi Kari,
THanks for joining the website and welcome:)
Please take a moment and step over to the Humira Reviews page:
https://ihaveuc.com/humira-reviews
Lots of reviews from different UC’ers about their experiences with humira there.
Lots of other reviews of medications on other pages too that might be helpful for you to see as well on the site.
Best to you,
Adam
Hi I had UC when I was 5years old it went away till now I am going to be 63 but have a lot of stress I take care of my elderly mother not easy but wouldn’t! Haven!t any other way she is all I have no family everyone died So I have Jesus and my mom thank God. Enough about me now about my stomach Ihave been taking Cipro and presidone sometimes the UC has no blood and sometimes there blood.Ihave to take a colonscopy in April .Could be the foods or just stress.?
Hi Tina,
Could really be anything, but stress is for sure a big part of symptoms according to the 151 person UC and Stress survey that was conducted not too long ago. Details to that are here:
https://ihaveuc.com/colitis-and-stress-151-patient-survey-results-part-1/
Hi, I am Rebecca and I was just diagnosed with UC two days ago after dealing with symptoms that lasted approximately 4 months. The ulceration was as far as my transverse colon with inflammation into my ascending colon. I was having upwards of 10 BMs daily as well as having skin manifestations. I was prescribed Apriso but unfortunately my insurance requires a prior authorization so I’m still waiting. Any advise is appreciated.
Hi Rebecca, You have found Adams website, a great place to read similar situations as yours and see that you are not alone and can find what things to try to help you guide your way through some stressful but manageable times. I found for myself that yes, getting depressed can happen and YOU MUST stay strong. If you have to cry, then let it out and as I posted before, YOU CAN AND WILL GET THROUGH THIS as it will take some time. Again I say to you, you are NOT alone. I come back to Adams site on and off and read many peoples posting which I find they help me as to let me know I am not alone. Just recently I read a suggestion from poster BONNIE (May 25th) and want to share with you. Bonnie writes: ” came across a book called “And They Said It Wasn’t possible” by Karen R Hurd. This is a great book! Explains everything so clearly & simply. I started following the diet somewhat because I haven’t really had any flares & after only a couple of days the diarrhea stopped.” Bonnie says book can be found on Amazon. Any how Rebecca, I wish you the best and we are all here for you. My name as you can see is Robert (50yrs young) and look forward to reading your future posts. And if Adam allows it feel free to reach out to me at Job4me@aol.com, I am not a doctor and only will share my path in life of dealing with UC as I post as well here on Adams website. Thanks for your time and Thank you Adam for all you do for us posting.
Hello, everyone my name is Kari, I was diagnosed UC back in 2011, it was difficult when I experienced my first flare up but having support from my fiance kept me focused. Just had a episode maybe a week ago that put me in the hospital only because when I finally found a doctor in 2011 they tapered me down from medications and I no longer took them and I felt great. Then, all of sudden it hit me again and having these same problems, don’t understand why they would take them away when I start feeling better, because now I feel worse then before.
Hey my name is Roach and I’ve had Uc for longer than I can remember. I used to think it was just a normal thing but over the years the pain intensified ten fold. Now everything is my trigger food and the agony don’t stop. I was curious about the steps of surgery and what would happen after I have it. Trying to find out if I can go back to eating things I like such as pizza or maybe even just some mayonnaise on a sandwich if I get my guts cut out. Don’t really wanna go thru with surgery if im just gonna have to stay on this toast rice and chicken diet Cuz these are the only things that don’t cause flare ups.any insight would be most appreciated.
Hey Roach
I was originally planning to have a jpouch but after my 1st operation in 2013 I got on so well with having a stoma and a bag I decided against it. Made my stoma permanent in 2014.
I can eat whatever I want and regularly do! Sometimes if i eat alot of mushrooms or peanuts in 1 go I can get a bit of discomfort the next day when they pop out again! But it doesn’t last that long and certainly hasn’t stopped me eating mushrooms or peanuts.
As far as a jpouch goes, I think it’s the same story. Most jpouchers can eat what they want within reason. There aren’t many people even with functioning colons that get on well with spicy food and that doesn’t stop them :)
I wouldn’t change having a stoma for anything. My only regret is not having it done sooner. I had a rough time in hospital and the meds so it was a relief when I could do/eat whatever I wanted again.
All the best
Hi I’ve recently been diagnosed with ulcerative colitis. I’m struggling to come to terms with it.. In once sense I’m relieved that I now know what is wrong with me and why I’ve had so many toilet issues in the past, but part of me is annoyed that I have to monitor what I eat… I know that this can lead to a healthier me but I’m struggling at how to start. I’m on prescribed medication which is helping but I know I need to change my diet too if I’m going to get this under control. I’m a vegetarian so feel limited in what I should try first with my new diet… Any suggestions on “safe” meals would be greatly appreciated. my husband is trying to be supportive but I just don’t think he understands the full extent of the disease. Sorry for the negativity, but I feel very down about it all. Any words of wisdom from people who have felt the same as me but now feel better would be great!
Hi. Thank you for the add. I came over this site on fb…and felt for adding my self. I am Norwegian and have had UC for more than 30 years. I have had some flare ups past the years, but it have seldom made my life to bad. I have found my type of medicine..that is all natural…I remember my Doc once told me that what I used to take Salazypirin and later Asacol 800 mg is “rat poison” for “normal” ppl, …so I thought…that must be for me as well….so I was lucky enough to come over the natural way …Havent been so fine in many years. Looking forward to read more here . Have a nice evening everyone.
Solveig,
Please tell us what your natural medicine is.
Thank you
I use oils and vitamines from doTERRA. I am an Advocate there …since you ask, I guess it is OK that I write it here? Otherwise just delete this. I met the head Doc at dT and asked what he suggested …so I use those oils (and vitamines) Never felt better :). Have had my pizza and chips now, and wine …I only work 40% week, but now I have the energy to work more, been there today . Feel free to contact me PM if I can be of more help to you . (And forgive my English..lol) And..this is importent: I take D-vitamin D3 5000 IU (these I import from UK)
Regards Solveig
I am also a wellness advocate for DoTerra. I would love to know what oils you are taking from them.
Hi Orla; First thing I first. You know what your dealing with, as you stated. That is and was a relief for me to know and learn what I had, UC. So having said that, I myself remember exactly what you express now and felt: Relief but yet annoyed, struggle, alone, diet, etc… THERE IS AND WILL BE LIGHT AT IS LIFE in our FUTURE. YOU ARE NOT ALONE! Do not get frustrated with trying different things of food, diets etc that you will read here on this website. Adam is a great support for many of us UCers having his website. Stay strong, keep a positive out look, know one solution is not a fit all. We all have and done the process of what works for each of us independently. Takes time, know that. Keep your mental mind strong. Very important. We are all here for you as you can read post after post. Thanks for reading and I send good long happy vibes and prayer for your strength.
Hi Everyone
I have been on Adam’s site for a couple of days and I feel already more cheerful. I have been suffering with a bad flare up for a few months now. I used to be on Humira and Methotrexate as I have Psoriasis, Psoriatic arthritis and UC, but my skin and bone were aggravated by the drugs so I stopped them. My skin and bones are now doing amazingly well but the UC is out of control. I had Asacol increased and also was using Salofalk and Prednisolone Foam enema, but I got consistently worse, so I was given 30mg of Prednisolone for 6 weeks decreasing the dosage by 5mg each week. In terms of supplements I have been taking Probiotics 50 Billion and also Omega 3 Both from RenewLife. The specialist prescribed me Calcium and D3 Vitamin but I think the Calcium Carbonate is giving me more urgencies. I have been having a range of 10-15 urgencies per day and I am scared to eat. I have been eating toasted plain bread, white rice, chicken and seabass. After reading Adam’s book this morning, I am cutting all carbs with immediate effect and see if this is going to make a difference.
I am feeling a little bit low because I feel as though I am slowed down. I am a sociable person and I feel a bit isolated right now, but I fully trust my positivity and I hope it will not let me down :)
I just want to share with you my journey and if any of you have any comments, positive or negative, please let me know, it would mean a lot.
Thank you! Monica
Hello Monica!
I’m sure a lot of us can say that we know exactly what you’re going through. I was recently diagnosed with UC in April after going through my first flare, which is still not under control. I am on Lialda 3 pills in the morning. And, after 2 stool sample tests, it was also found that I
have C-diff on top of the colitis, so Metronidazole 3X/day. I get so down sometimes, not being able to go out somewhere unless I am certain that I have immediate access to a restroom. I also have to be hyper vigilant about cleaning to make sure no one else in my household gets it.
(the C-diff). Very distressed after I found out that I had C-diff, too. Makes it super difficult to figure out if my colitis is getting better or not. I have had bleeding for the past 2 months off and on. My regular m.d. suspected C-diff in the beginning, put me on Cipro and Metronidazole. A few days later, I went to the GI and he had me stop the meds, after the first stool sample test came back negative for C-diff. Then I had a colonoscopy and was diagnosed with UC, then last week after a second stool sample, I was diagnosed with C-Diff by my GI doc. My head is spinning. I lost 20 lbs in the 1st 2 weeks. I stay away from dairy, fried foods, limit beef to 1x/every 2 weeks. I do ok with fish and chicken(no skin). White rice is ok, toast, boiled eggs. The other day I tried Honey-Nut Cheerios, and that was really not a smart move. I am drinking Almond milk for my calcium right now, doing ok with that. Pretty much the old B_R_A_T diet – (banana,rice, applesauce, toast) I was really in a bad way at the beginning of all this, my md had me on a saltine cracker and water diet. I finally got some Gatorade, and I actually got much better very quickly. I have only had 1 “normal” day. I’m sure you know what that means. I have been having groceries delivered and my husband was a bit frustrated with the cost and all, but I told him that unless he wanted to do the shopping that was how it had to be sometimes. I can’t be at the back of the store in the meat section and have it hit me and make it in time, just not happening. Thank goodness I haven’t had that happen in public. Yet. I hope you are doing better. The funniest thing that has happened was, when I got back last week from my GI doc and told my husband I had C-diff, he was like, that’s good??? , at least they can cure that. Then I had to tell him, no, this is on top of the UC, not in place of the UC. Wishful thinking on his part, I guess. I guess I had a few symptoms for a while –
not handling greasy foods well, salad dressings, etc., but didn’t have any idea that it would be something so life-changing. I’m still not able to see the humor in it, but I have learned one thing- DON”T EVER TRUST A FART!
Hi Adam and hi everyone! Thank you for sharing your experiences I have found strengths in all you have to say. I am currently in hospital as in the last 4 months I have been having a bad flare up of UC. I have had UC for 8 years but a flare up came 3 years ago and now. Unfortunately this time it’s been tough. I have had to stop Humira as it was flaring up my psoriasis. I just finished a course of cortisone which had not helped at all. I have been following the SCD with very little results as I still have a lot of urgencies, bleeding and severe cramps. But I will persevere as I know food can be a trigger. Now at the hospital I will do a colonoscopy and they are also doing cortisone infusions to attack the inflammation. I hope I will start having some relief, then I will have to discuss with the Doctor the best medications moving forward. wish me luck. I feel I am slowed down in any aspects of my life but I try to keep strong.
Thanks for listening everyone and if you have any comments I’d love to hear from you.
Monica
Hey Adam and everyone,
I’m 18. Got diagnosed 2 months ago. Been feeling the symptoms for most of my childhood and no one believed me so I took it all as normal. I’m still so worried and frustrated about all of this, heck it could just be the prednisone talking though haha.
I’ve only recently found your videos/site and can honestly say this has been the best thing to happen since finding out I had UC. No one will really understand it or want to like the people on this site, and for that I’m really grateful.
Just saying hello really but I’d also like to ask, if there was anything you wish you’d known earlier regarding UC what would it have been?
I feel like thats a good enough place to start as any.
Hey Jay,
Thanks for joining the website bud!
One thing I wish I’d known/did right after getting diagnosed…
Great question BTW.
I wish I had done more research into the potential side effects of the medications I was prescribed. Also, I wish I had put as a top priority to find and meet IN PERSON another UC’er. I waited a year before I met someone else with UC, and would have been nice to meet another earlier.
Thanks for Joining!!
–Adam
Hi Adam,
I just want to say thank you for putting this site together. I just joined now, but so far it looks like it will be fantastic. I just went through several weeks of digestive hell, while my doctor played the diagnosis guessing game from the bottom-up. It’s funny, because I mentioned wondering about Crohn’s (hadn’t heard of the lesser-evil twin, UC), though I never had the usually-included fever, and she said we’ll work up to that, knocking off the minor stuff first. Ugh. So by the time she worked up to putting me on two different antibiotics to see if a stomach infection was the problem, it had gotten so bad, that I was losing a lot of blood, and couldn’t regain anything due to the sudden severe acid-reflux. After a wonderful three-hour wait in the ER (despite my GP’s office assuring my immediate admittance), the ER doc informed me that I was about to go into renal failure, which was followed by about 3 days on a delicious IV Saline diet and a UC diagnosis.
Now that I’ve been out for a week, and finally have my strength back enough to walk around the grocery store and whatnot, I find myself extremely confused. Everything I have read about suggested UC diets contradicts the others, and I have no idea what brought this on to begin with. I did realize that I was on sort of a red meat binge, so I’m starting with cutting that out for now, along with eating as little fiber as possible. The Attending Physician was of no help at all, telling me to eat absolutely anything, and my GI appointment isn’t for another 10 days. I’m really at a loss here, so I hope to find out a lot of great information on this site. I did find out that a 21year old guy I worked with, and my wife still works with has had it for a few years, but his advice is eat anything, take the big red pill (which his parents pay for), and smoke a lot of weed. It might work for him, but this 33 year old is in a different position in life for that advice. haha.
Well I guess I’m off to read the ebook. Thanks again.
Hi, thanks for adding me. I was diagnosed in 2013 and the mesalazine helped, since then I had a healthy pregnancy and have a lovely 2 year old boy, but unfortunately have been flaring on and off for over a year now and it’s getting to me :-( x
I do renember that I had what I can only call hormonally related bouts when I was in my child bearing years. No literature or studies to confirm this but especially active disease when I had my kids. Having UC since age 14 and now 60 I’ve been through it all and had difficulty during my second pregnancy. It’s only in retrospect that I see the whole picture. Good luck.
Thank you Adam for creating this site, I suddenly realise that I am not alone in dealing with UC. I was diagnosed in June 2015 following a colonoscopy after 4 years of problems and the Dr sending off samples and telling me there was nothing wrong.
I was hospitalised in January after a really severe flare up, I lost 10 kg in a week. There was a discussion if they were unable to get the colitis under control then they would remove the colon. It was a dark time and I felt really low and had so many questions, Why me? Etc.
After 4 days of nothing working for me I was given Inflectra by infusion over 2 hrs and within an hour the pain in my stomach disappeared and no blood or mucous appeared in my stools, it was like a miracle drug and gave me my life back.
I was discharged on Prednisolone, Azathioprine, Pentasa & Adcal. I had a further 2 infusions of Inflectra, 2 weeks after discharge and then 2 months. The Prednislone caused me a lot of side effects mentally but put up with this as I knew it was doing me good. I was happy when I got off them but had a serious side effect from Azathioprine which damaged my liver. I had a terrible time for 3 weeks, I was taken off it once they realised the problem from a blood test. This was meant to be taking over from the Inflectra but thankfully I have started back on it.
Thankfully the NHS in the UK supports this and I pay £100 per year for the prescriptions. It seems very unfair how much you have to pay in the States and how much the pharmaceutical companies make on people’s illness.
A brilliant site and I look forward to getting as much information as possible. Together we can beat this by remaining positive and supporting each other.
thx for Joining Peter!
Hi everyone :-)
I was diagnosed last year and have had a couple of flare ups. I take Asacol suppositories when it’s bad – it’s pretty bad at the minute :(
I know I shouldn’t drink coffee or wine and eat certain foods but I just get lazy and have them. Does anyone have any diet advise? Just read someone recommending dates so I’ll get some of them today but any other advise would be brilliant. Has anyone had a colonic – are we even allowed them?! I thought it might be a good way of getting rid of all the bad stuff. Any advise would be great and thank you all Lou x
Hi Louise,
Dates are good, if you have never had them before they can take abit of getting use to but stick with them as they do grow on you. Dates in our household when Inwas a kid would come out at Christmas but who wants those when Quality Street chocolate is available.
Turmeric, the spice has very good anti inflammatory properties, use it when you cook in sauces or coating meat, please note though that it does stain everything yellow especially wooden boards and wooden spoons etc.
Eggs are superb,mInalso buy ones with omega 3.
Oily fish like salmon, tuna, mackerel etc are really good.
Live natural yoghurt is a great pudding, mix anything you like with it, fruit, granola, natural honey etc.
I hope these help and you get a lot from the forum, it is a great support network and everyone is supportive, nice and totally understands what you are going through.
Keep positive and keep a sense of humour as laughter is definitely the best medicine.
RE: GINGER ROOT update. So, I have posted previously about following the Ginger root regiment. And to add my follow up, I must say, it is working for me very well as Adam shared Ginger Root story of another UCer that posted. I take ginger root w/ water like a medicine. 2x a day. Chopped into little 3mm by 3mm or smaller pieces (in the search bar of Adam site just type Ginger Root, should take you to original post). I just wanted to update everyone, and to make sure it was not a placebo effect on me before I continue to post. Remember everyone system response is different, but hey, worth a go to try new things to help deal with our UC. Wish everyone a great day, keep strong and positive. Thanks for reading. And Thank you Adam. :-)
Waaaaay cool to hear Robertoooo!!!
Congratulace! !%\/;:#!
I think I will give this a try, thanks Robert!
I just joined today, but it seems that there are quite a few of us that also have other auto immune related problems, (RA, psoriasis) on top of UC/Chrohns. Is that pretty common?
Hi Laura, Glad and happy you joined. As far as auto immune related problems, (RA, psoriasis) on top of UC/Chrohns. Is that pretty common? I have read many posts here which I see that they mention of other auto immune along w/ UC / Chrohns. Not sure if I myself am able to say if its common or not. I can assure you this would be a great question for Adam. I hope the best to you and I like to remind or mention at end of my posts is that we are all here for you in many ways. (heart). :-)
Truly, Robert M. (Orange County, California).
Hi Robert & Laura,
Anecdotally speaking, there seems to be a pretty decent proportion of UC folks who mention other autoimmune diseases as well (skin issues such as psoriasis) as well as some other things. You can also google PSC (primary sclerosing cholangitis… https://en.wikipedia.org/wiki/Primary_sclerosing_cholangitis ) as well. Thx you Robert for your kind words to Laura, and Laura, you might like to do some searching on the PUbmed website where you can read up on all sorts of studies…it is really easy to use and will certainly be a great resource for you and anybody else for that matter in the coming years:)
best to all of you,
Adam
Adam, thanks so much for having this site. I am trying to learn as much as I can about UC right now.the c-diff is pretty scary, too. I was able to find Clorox wipes – not the kind at the grocery store- this is a bleach wipe -on Amazon, so that makes things a little easier. I bought the SCD book, hope this helps. I don’t work outside the home, thankfully, but I am afraid to go out very much. I am grateful for living in Houston now, home to one of the biggest and best medical centers in the world , so I do know I will be able to get whatever care I need , but the whole situation is more than just a little frightening especially since it came on so fast . I’m also taking vsl#3 and sometimes it seems like my symptoms get worse , IE very watery not sure how long it takes before I start seeing some kind of relief from this, and freaking out because I don’t want anyone else to get C-diff.
Robert, thanks so much, and God bless you.
Hi everyone. Hello Adam. First of all thanks for this site. I have suffered from bloody diarrhea on May 19th. I went and saw a doctor; he told me to see a GI. I did and visited GI on June 16th. The GI recommended to have a colonoscopy on June 19th but I asked her to postpone it to July 3rd. Now I am suffering too much: cramps, gases even little blood(dots) in my hard stool and constipation since 4 days. According to the symptoms I read about in the net I have a UC. The problem is that my GI prescribed me a rectal laxative as a colonoscopy preparation; the laxative is called Regulax Docusate Sodium. The notice of this medication warns people with UC, Chron’s disease, anal fissures, Bowel obstruction, hard constipation, hemorrhoids, or any bowl cramps not to take the med. In addition, my GI prescribed an overdose and thi is also dangerous according to the med notice. I am afraid because using this med can lead to a dangerous situation like holes in the colon. What shall I do please?
Call your GI and speak directly to her. If pain worsens go to an ER. I’ve had this disease for over 40 yrs and you could be missing something serious by thinking its UC
Hi Adam
It is so wonderful to have found your group. I was diagnosed with UC 3 years ago and this is my third flare. I started the paleo diet and it has helped about 50% but it is still a daily struggle. Found out 2 months ago my 17-year-old nephew was diagnosed with severe UC and I cried when I heard, knowing what a long road he has ahead. It turns out he had to get his entire colon removed so at least he is on the road to recovery. I am from Canada and apparently we have the highest presence of UC in the world. I wonder why? I definitely think it is partially genetic as my father, brother, nephew and myself are all diagnosed. It’s great to feel like I am part of a group of people who understand.
Hi just been diagnosed with UC, awaiting appointment to see Gastro so no meds as yet. Previously, around 3 years ago, was diagnosed with Psoriac Arthritis, it seems these two villans go hand in hand as they are both autoimmune diseases. I am quite shocked at the diagnosis, wasn’t expecting it at all. My arthritis only affects one of my middle fingers so still quite mild. The UC however, well one day I was fine, the next all hell broke loose and the symptoms began, just like that! Has anyone else got both of these, any advice would be welcome.
I just recently got diagnosed with Ulcer Colitis I thought to myself my world has ended because it comes with being Lactose free and No red meat. I’m a Texan we love our blue bell ice cream and BBQ’S and sweet teas. But then I thought to myself I have to do everything that I can to get myself better for my kids!! It’s will power! Now I’m struggling which butter to use which milk can I drink.
Use real butter (I just use Land o’ Lakes) , but in moderation. Anything processed/rransfats does not sit well. I had to laugh when I read your post. I’m in the same boat, just diagnosed 4/2016, Texan, Blue Bell lover and BBQ. Yup, I can’t even have ground hamburger meat. Baked chicken with the skin removed afterwards, grilled chicken, no sauce, salmon, halibut and cod, as well as grilled/boiled shrimp are my go-tos. Chicken Progresso soup sits well, as the vegetables are so mushy they can’t hurt you, I usually choose noodles over rice. As far as veggies, yellow squash has become my favorite, since no beans or legumes (peas) – (gas). Also, no carbonated drinks or caffeine, aspertame/Equal/articicial sweeteners/chocolate. Milk just about turned me inside out one day, and I don’t recommend trying any cereals that have ANY added sugar. You’re going to laugh, but I have actually bought Gerber banana baby food by the case – (no added sugar, each little container is equal to 1/2 banana) on Amazon and unsweetened applesauce at HEB. Thank goodness for HEB. I live in Katy, near Houston, and they have have Instacart available to shop and deliver groceries when I’m not able to get out. I pick up their rotisserrie chickens and also the fresh roasted turkey breast. Just be sure to remove the skin before eating. No Yolk noodles are good, grits and Uncle Bens white rice, no brown or wild rice. Absolutely NOTHING spicy. So, of course that removes a lot of choices for Tex-Mex restaurants. I am drinking Unsweetened Vanilla Almond milk, which is not as bad as it sounds. Anything really sweet has an immediate laxative effect on me. I see a GI at Methodist in SugarLand, he’s been great.
As for meds, right now I’m on the max dose of Lialda – (2) 1.2 mg tabs twice a day, prednisone (just began 2 weeks go), now down to 20mg/day, and VSL#3, which is an OTC probiotic, one of the strongest you can get. I’ve lost 30 lbs in the past 3 months, and I’m OK with that, just not the way I wanted to lose it. I try to make lunchtime my larger meal of the day, and try to drink plenty, but not too much, water. I was really very sick in the beginning and had c-diff in June which was not only scary, but really jacked with my kidneys, due to the dehydration. Not to mention making me borderline OCD with keeping everything as sterile as possible, so as not to pass it to my husband. Scary stuff, but I’m negative for it now, thank goodness. It does require a lot of willpower, but I know if I can do it, anyone can. You just have to tell yourself that that piece of fried chicken/ grilled steak/fried shrimp or chips and hot sauce is not worth the pain and trouble and just be done with it. Because it will come around and bite you in the backside. You don’t need to learn the hard way. My husband acts as my taster when we go out, and if I’m unfamiliar with the food, he tastes it first. It can not be the LEAST bit spicy, or it’s a no-go. Not worth it, and don’t think, oh this isn’t that hot……Hope this helps some, and remember, you’re never alone in this!
Take care!
I forgot to add, when cooking yellow squash, you have to peel it first.
So far, I have been in remission from UC for about a year. I only take 1 Lialda a day, plus turmeric, probiotics and boswellia. I have stopped eating anything that has wheat or gluten. I try not to eat a lot of sugar or any white flour,which has an agrediant in it that is put in yoga matts and plastics.
Also, I never eat anything that has carrageenan in it which is a lot of products like ice cream, cottage cheese etc. Carrageenan is an inflammatory, which is very bad for the intestines.
Oh i take Lialda too! But I take two pills in the AM and two at dinner time. Ugh I just really hope my dosages changes because they are thick to swallow. I’m so trying on this new diet it’s so hard! It’s a struggle for me. I completely cut caffeine and sodas and now lactose free. But red meat is so hard to give up. I’ve heard about turmeric I have it but I was scared to take it what if it interacts with the medication, probably not right?? I’ve heard Aloe Vera is good was well for the inflammation. I really dont want to depend on medications my whole life what if I get kidney or liver failure. That’s my biggest concern.
Hi Melissa! Red meat is hard to give up, especially with the endless barrage of restaurant ads and Facebook recipe posts. But, you can get through it. Just tell yourself that you’re eating to live, not living to eat. It’s really a small trade off for not having the bleeding and getting your insides to heal. The more you can keep the symptoms at bay, the better off you’ll be. You want to do whatever you can to avoid reactions to food, since the damage from it can lead to the ulcers. Anything that is crunchy, hard, spicy, has gristle, skin, is fatty, cane sugar, corn syrup, really chewy is harder to digest, takes longer to digest and is not doing your colon any favors when you have UC. It’s just not worth it. I do enjoy cooking for others more than ever, now. It is difficult. But you can do it! The less time I spend in the bathroom or in bed is more time I have with my loved ones. And that helps make it a little more bearable.
Melissa, I haven’t tried the turmeric; do you use it to season stuff, or like a rub? I have heard good things though. I also like ginger root. You need to keep it refrigerated, otherwise it will go bad fairly fast. Just slice a small chunk off, scrape the peeling off, cut it up in small pieces. Then, use a mortar and pestle to crush it (like you would for the mint leaves in the mojito neither one of us can have!) Boil enough water for a large coffee cup, but the crushed ginger in (about 2 tablespoons), add about 2 Tablespoons reg honey – (NOT RAW HONEY) and add the boiling water. Let it steep about 5 minutes, giving it a good stir. Sip slowly – things that are too hot can cause problems too. It seems to help calm things down a bit, and is a nice change from just drinking plain water. I especially like it in the afternoon or later in the evening, after dinner.
I have had UC about 5 years. In the hospital now with a pretty severe flare up and also have c-diff. Have tried many meds that only work for 6-10 months and then stop. Anyone have info on juicing? Found several blogs about cabbage/carrot juice working or juicing marijuana leaves. Any natural success stories would be great or how someone has responded to having their colon removed. Thanks.
Hey Nicholas,
Hoping you can get the cdiff taken care of soon, that is really hard to get ahold of UC symptoms when that is going off at the same time.
You might want to do a quick search on the search bar at the top of the site for “juicing” or “cabbage Juice” there for sure are some stories that will come back as it has been discussed previously. (I myself would stay away from sweet juices and fruits if your symptoms are bad, lots of sugars in there that can be hard to digest and deal with when symptoms are present. Better to wait until things are more under control in my opinion on that). Best to you, Adam!!:) (things gonna turn around bud, keep your head up and thanks for joinng the site:)
I am just starting to get better after almost 7 mos with severe flare. Have had disease for 46 yrs. Ginger, fennel and digestive bitters along with Entyvio, 6-mp and Lialda. Don’t think you can do it without. Combination of both but am convinced the combination of both help. I have also been through Remicade allergic to it, humira and Simponi. Each flare takes longer to heal. Hang I there
Please help! Need advice on medications….well I’m taking right now Lialda in all honesty it hasn’t been working for me ive been taking it for 2 weeks and I told the PA the prescribed it that I’m still getting bloody diarrhea, cramping, and nausea. She said to still continue it 2pills in the AM and 2pills at dinner time and plus taking Prednisone twice a day. Nothing has worked I’m still getting diarrhea and my left side hurts when bowel movement. I need to opt-out from the Lialda and it’s an NSAID anti-flammatory medication…I’m not suppose to take any NSAIDS. Which medication has worked on everyone?? My I’ll ask my actual Dr to switch me. Please help
Absolutely talk to your GI doc but I know it takes longer than 2wks
Ask about 6-mp or possibly something rectally or infusion like Remicade or injectable Humira. Theirs is a lot out there.
Hi Melissa! The meds take a while to really kick in. We both take the same dose of Lialda, i’m on my 3 rd week of 6 with prednisone., finally getting close to normal, just this past week. I’ve been on Lialda since April. Ask your doc about taking a probiotic like vsl#3. Also, I tried the date thing, and about 4 a day after lunch seems to wrk well.oh, and I had read somewhere that aged cheddar was good, NO Bueno! No dairy means no dairy. At all. Cheese caused bleeding with me, when I stopped, the bleeding stopped
Hi Melissa
Lialda is a 5ASA drug not an NSAID like ibuprofen. I would speak to your GI as although I have alot of experience with UC and 3 operations under my belt, I and others on this site are not Drs and cannot give you a definitive answer.
One more question what kind jucies can you drink with ulcer colitis?? I miss drinking orange juice but I don’t know I’m scared I might get a flare up. I drink apple juice and it’s been okay I drink it in the mornings only and rest of the day water. I’m just tired drive king only water. Is there anything else to drink??
Oj is too acidic. I drank apple juice diluted with water. Too much sugar of any kind can cause problems, esp. during a flare. I’m not crazy about it either, but plain water is best.
I was diagnosed with UCI July 28 2016 and I started taking Lialda Aug 5 2016 and Prednisone Aug 12 2016. I restarted taking the steroid because my ulcer flared up again I didn’t know I wasnt suppose to eat salads, melon, and mango yet. The PA put me on a carbohydrates diet no fiber, no diary, no grassy, spicy foods. Which I don’t know if I can eat white rice or should I eat noodles?? It’s so confusing. I’m trying to be patient It’s just frustrating going to the ladies room constantly you basically live in the ladies room. Lately I’ve been going 6 to 7 times a go. I’m drained and tired emotionally and physically.
White rice is fine. Personally, I like the packets of Uncle Bens that you microwave for 90 seconds. Just plain white rice, not the one with seasonings. As far as noodles, the No Yolks noodles are good, and easy to cook. No raw fruits or veggies during a flare. Even after, they must be peeled first. I have tried watermelon, unsweetened applesauce. No legumes – peas, beans, etc. No lettuce, okra, corn. Silk Almond Milk Vanilla unsweetened is good. No red meat – chicken or fish only. Baked sweet potatoes are good. Baked chicken – just remove the skin afterwards. No nuts. I have tried plain hummus and have done ok with that. No processed meats or cheeses. Pretty much just whole foods. No citrus fruits, no popcorn. Nothing crunchy or chewy. Kind of limited, and it does take some getting used to, and seems boring, but when you are good and past your flare, you can try things, but very gradually. I’m on my 4th week with the Prednisone. Began with 30mg for 2 weeks, now 20, next week 10, and so on. Kind of nervous what will happen when I’m off them. I have found that I feel better and my day goes better if I am taking my probiotic, at least 2-3 capsules of the VSL#3 at lunch, which is also when I take my Prednisone. Mornings are still a little rough, but thats something I’m dealing with. It will take a while, still, to heal from the initial flare. Feeling better every day, though, and I feel like there’s hope for remission. It is difficult. It’s not like smoking or drinking. You have to eat. It’s hard to give up the foods you love so much, but it is not worth the heavy price with the bathroom visits and bleeding. I’ve been dealing with this since April, and the prednisone is really helping. It will get better, I promise, please be patient. Baby Steps.
You can try cranberry or grape juice. But everyone is different so only try one thing new to see if you react well or not. Patience is very difficult I know but hang in there
Thank you for everyone’s advice it’s been helpful and comforting that I’m not the only one that faces struggles. I also have a question…..with UC what can you eat in the mornings?? I’ve been struggling alot in the mornings that’s when I do get small pains. Well because my stomach is empty with hunger of course lol. Any suggestions about breakfast?? Please thank you!!
Well, since oatmeal is out for me, I may have a hard boiled egg. Def not sugary cereals. No breakfast tacos, either. No sausage, for sure. Ever.I know it sounds crazy but a lot of times I’ll have something that’s not even something that you would normally eat for breakfast, like Progresso soup. I have had grits, though. And scrambled egg, with white toast. For whatever reason, mornings are usually pretty rough for me anyway and I’m really not much in the mood for eating anything. Sometimes just a glass of cold water is enough to set me off . ButI am getting better, way better than I was a couple of months ago, and I am thankful for that. I did ok with a warmed flour tortilla and scrambled egg, no cheese or hot sauce, no sausage.
Oh i miss having oatmeal in the mornings too. Hard boiled eggs umm that’s an idea. What about almond butter? I bought organic almond butter and organic jelly spread…..but since it’s thick what if it’s not good idea. Gotta give it a whirl.
Hard boiled eggs work well, because it gets something a little more solid in you and I have found that it really helps with the prednisone that I am taking, gets it in my system fast and alleviates the problems earlier in the day. Before, I was waiting until lunch, but that meant that I was still making bathroom trips all morning. So, the earlier I can get the prednisone in me, the better. I learned this weekend that, sadly, watermelon is a no-go. Dates weren’t much help either. Nicotine patches mad me nauseated. I’m currently searching for another GI doc, one in the medical center in Houston. I live about 40 miles out, so just the anxiety of a car trip in traffic does not thrill me. I know I will be getting the best care available to me in this area, though. My other doctor sent me to a “specialist”, who , right off the bat, wanted to put me on biologics. Not ready for that. I know it’s ok for some, but I just can’t do it. My husband travels a lot, and that alone could make me vulnerable to infections. Not to mention the cost. $3500+/treatment? My insurance would not pay for it, they won’t even pay for Asacol.
Right now I’m attempting to go with Lialda, my doc upped my prednisone after trying to wean me off of it, went down gradually from 30 to 5mg, when I got to 5, it really hit the fan. No Bueno. SO, I’m at 20mg now. I have yet to have a “normal” day, save for one day in May.
My brother thinks I should have been started out with a much higher dose of prednisone and then taken down. (like 90mg). He had symptoms similar to mine many years ago, and this is what worked for him. Knowing the side effect with steroids does not make me want to take them long term. But I can’t seem to get off of them. I am still eating bland foods, no sweets, no dairy, no beef. Really trying to get to normal. Down, but not out. I guess the hardest part is that I’m such a control freak, and right now I am lacking in the control department. I’m still holding out hope that I will be able to find something that works, without adding extra risks to my health.
I have a twin sister who had UC for many years. Now I also have it.. Wondering if it runs in families? She told me about your newsletter Adam and I am so happy I found you. Hearing about others having UC helps a lot. Unfortunately, my sister now has an ileostomy. She is doing well and not in pain anymore. Let’s hope I don’t follow the same path. Thanks again Adam.
Hi Kathy,
Thanks for joining, and yes, there are definitely some strong thoughts in the scientific (and patient) communities that UC “runs in families” or has a genetic component or pre-disposition..
Wishing you well,
Adam
Has anyone tried wheat grass juice? Has it affect anyone? I’ve been thinking about it i see my doctor tomorrow hopefully he says I can drink wheat grass.
Hi everyone!
I was diagnosed three years ago. Three colonoscopies and many doctors later, I have been diagnosed with “idiopathic colitis with ulcerative tendencies”. I tend to be IBSC, not IBSD – specialist said he thinks the many antibiotics and ibuprofen I took for years for chronic sinusitis are the original cause. I was tested several times for c diff – all negative so far. I see an OM now and follow a Low FODMAP diet – within three weeks after starting the diet I was doing great! Recently, major family issues and unexpected sudden travel, along with difficulty following my diet have set me into a flare. Bleeding, cramping, bloating, gas. I am two months into a new job and trying to get my act together enough every day in order to go to work. Really bummed out. Glad to have found you all. Any advice is greatly appreciated.Thank you.
Hi,
I’m new to this site. Thanks. Do any of you experience knee and hip pain along w your UC? As well as fatigue and sweats?
Thank you, Bruce
Hey Bruce,
Thanks for joining!
Here’s the joint pain survey details that might be interesting for you:
https://ihaveuc.com/99-person-colitis-joint-pains-survey/
And, there is some talk on the night sweats…here:
https://ihaveuc.com/now-what-night-sweats/
(not sure if you meant night sweats, but they are common when symptoms are active).
Wishing you the best, you can use the search box for the word: “Fatigue” and you’ll see some stuff come back for sure.
Wishing you the best, and good health soon,
Adam
Thanks, Adam. Esp annoying flare up while on vacation.
Diagnosed in April 2016. After 2 months, I had swelling and pain in my knee, really disturbing, then it went away. Fatigue, yes. Obviously, not getting enough nutrients since nothing stays in me long enough. I now need to take a nap during the day. Doesn’t help that I make a bathroom trip every night around 4 AM. Also, awake with sweats around 3 AM. Right now, I have NO pain in my joints, I would guess it’s because of the prednisone that I’m on right now.
Hello all. My son was diagnosed with ulcerative colitis at age 7. He is now nine and in the midst of his 3rd flare-up. He’s been on prednisone (30mg) for 6 weeks now with little change other than a moon face and just feeling crappy. His GI specialist wants to put him on 6-mp. That scares me. He’s so young and has so much growing left to do. We are also seeing a Naturopathic doctor who is looking at other angles such as allergies. (He flares every spring) I am at my wits end. I hate seeing him suffer. Anyways, thanks for this website and any words of encouragement or advice are appreciated.
Going to GI tomorrow. Totally lost.
Great idea, nothing wrong with seeing a GI, good decision Michelle!
I do have a question. How soon after you eat something that doesn’t agree withyou do you usually realize it/ feel the effects? Immediately? Within a few hours? Next day? Several days later?
Thanks for your help!
Hi Laura – I’m in a flare right now, and it’s pretty immediate. When I’m not flaring, it’s usually longer.
Hi everyone – so – been prescribed Apriso – I start tomorrow. Anyone else used this? It’s my first med – I’ve been trying to maintain with a special diet, but I failed.
Michelle, don’t feel as if YOU’VE failed. There’s still a lot the doctors themselves don’t understand about this disease. Try to be optimistic that answers will be found and you will get some relief. I’ve been working on remission for the past 5-1/2 months now, I’m willing to try just about anything, just not ready for biologics (Humira) or chemo meds though. Hoping to find something else before I have to resort to that. Just a personal decision, everyone needs to make their own choices. Please don’t be so hard on yourself. It will get better.
Hi Michelle Ulcer Colitis is very tricky condition. It’s really all about your body and how your body responses to foods and medications. I’ve heard I haven’t tried it yet that Cabbage juice helps heal UC supposedly you have to take it up to 7 days about 5 or 6 times a day (cabbage juice) and take a probiotic. There’s many probiotic out there take the one that has the most potent. Such as culterrell or VSL#3. Speak to your Dr about probiotic. Everybody responses to medication differently. I’ve tried Aloe Vera juice I didn’t like it at all. It did help calm down my UC but I couldn’t drink it anymore I started to gag. I’m taking Sulfasalizin and a probiotic. I eat mostly fruits, sea foods, chicken only broiled or grilled, steam veggies, salads, soups, sea salt crackers and alot of water. I don’t drink sodas at all. I drink juices with no citrus acids or corn syrup but I dilute it with water. In the mornings I have toast, eggs, gluten free cereal, or crisp cakes with lactose cream cheese. There is hope trust me i thought I would never ever be okay. Trust me it takes time. Everyone goes through UC differently. I’m 30 years old and ive had UC since I was 15. I had a flare up in Feb I ignored it until it got really seriously. I was a big coffee drinker that’s how my flare up started. No caffeine no coffee. I wish you the best! God knows what we can handle he puts us through because he knows how strong we are. God bless
Thank you Laura and Melissa!
I was diagnosed three years ago, and this will be the first time I have actually agreed to try medication. I try to follow a Low FODMAP diet. I do take a probiotic. Recently, major family issues and unexpected sudden travel, appear to have sent me into a flare. It was been over a month of bleeding ANYTIME I use the bathroom, both when I need to move my bowels or just void – lots of bloody mucus, ( sorry to be so graphic), cramping, bloating, gas. I am two months into a new job and trying to get my act together enough every day in order to go to work. Really bummed out. Glad to have found you all. Any advice is greatly appreciated.Thank you.
You’re not eating any dairy are you? At one point I had read somewhere else where it was OK to have hard cheeses, like cheddar. It took about three or four days to really set me off into a downward spiral with lots of bleeding . When I went to see my G.I. doc and I started going over everything I had eaten in the past three months – really not so hard since my diet is pretty limited and very repetitive as far as choices go – when I got to the cheese, THAT was the cause. I immediately stopped, and the bleeding stopped. I had not made the connection myself because it was never immediate it was always a few days later. About the same time the bleeding would begin I would also start to have pains around my stomach area , not cramps just a really doll ache but it would wake me up at night . I have not had that since I stopped eating cheese . Live and learn I guess . In the very beginning before I was diagnosed the bleeding was what brought me to my G.I. doctor . I had seen my regular doctor first and he suspected that I had C-diff, which at that time I did not but he put me on a water and saltine cracker diet- yuck! and I immediately lost 14 pounds. I had to wait about a week and a half to get in to see the G.I. doc to have my colonoscopy. That’s when I was able to get answers . VSL #3 is absolutely the strongest probiotic available if you take it by capsule it has 112.5 billion bacteria. It costs about $.80 a pill or $50 for a bottle of 60 and it’s over-the-counter but has to be refrigerated. But it works really well for me. Stress is also a factor in flares sometimes, so the less the better. Hope this helps!
Laura, thanks so much for responding. I have been tested for C Diff several times – always negative. I am allowed a tiny amount of hard cheese on the diet, but will absolutely stop it! Thank you!
Michelle, I know it’s hard giving up tasty foods. I tested negative for c- diff in the beginning, then, when I was at my worst, tested positive. Certainly not an expert but I think you will know this or at least suspect something is up if you happen to get it . I hope you don’t- I wouldn’t wish it on my worst enemy . The smell is unlike anything you’ve ever smelled before -really really bad-. So, look out for this, esp. if your bleeding continues. I’ve been tested 3 times since and came up negative. I felt like telling my doctor not to bother testing because I knew I didn’t have it again -the smell is something you will never forget . Take your probiotics religiously. Oh- I also take the turmeric capsules- but the ones without the bio-perrine.
So, I ordered Breaking the Vicious Cycle book, with the SCD diet, and found out that I’m not supposed to be eating rice or potatoes. Also, no bread and no sugar. As soon as I stopped, I had the first normal day in nearly 6 months. Wow. Hope it continues, but at least I know I’m doing everything I can. Lots of good recipes, too. Highly recommend it for those with Chrohns, UC, celiac disease, cystic fibrosis. Anything that helps is definitely a good thing. And certainly worth a try.
Laura, I am already off everything, including Gluten, dairy (except for home-made thin buttermilk, with low-fat milk, taken several times a day), meat, poultry, sugar, processed foods, junk food, restaurant food, fried food, high-fiber food, most nuts and lintels, high-fiber vegetables, white salt. I will now add potatoes and rice also to the list. My only question remains, what is it that we really are allowed to eat? Luckily, I do not have much appetite, even though I am still on 10 mg of Steroids, so it is okay for now to just live on liquid diet with some lintel soups, but if/when my condition improves and I do get back my appetite, it will be really helpful if I know which foods we are actually allowed to eat? Please do elaborate and help me out here. I am at my wits’ end. Thanks in anticipation!
Connie, I too am off of dairy, beef,and all the other foods you listed, with the exception of poultry and white salt. I eat a lot more fish – baked, grilled or broiled – cod, halibut or salmon, along with turkey. I can eat restaurant food, but I order without any seasoning, and it has to be on the list. I REALLY suggest you get the book I mentioned above,by Elaine Gottschall. There are simple sugars and complex sugars. It’s all about the chemistry of the foods. There are lots of recipes, along with explanations why you should not eat certain foods. There are recipes that contain almond flour, coconut flour and honey. There are recipes that you can try a little further down the road when you are not in a “flare”. I’m the type of person that wants to know WHY can’t I do something, then It makes more sense to me. Kind of hard-headed that way. There may be some ingredients that are harder to find, don’t expect to be able to run to your nearest grocer and pick it up, especially if you are in a rural location. Lots of products can be ordered through Amazon or the companies themselves, though, so don’t get discouraged. The list is pretty extensive as far as allowed foods, too long to list here, but it can be like trying to navigate a minefield without a map if you don’t do some research. I’m sure your local library would probably have the book.
One example I could use would be juices. Orange juice can be ok, but NOT from concentrate and NOT in the morning. Who would have guessed that?
Thanks Laura. I will get the book you mentioned. I have now moved to India, and eating in restaurants here is not the same as back home, in the US. Hard to trust The quality of food, and hygiene of their chefs and servers is always questionable, even in the best of joints. And being sick for a long time, my immunity is low to begin with, nor do I feel much appetite — probably fear of having to go to the bathroom, especially many times at night, and then not being able to go back to sleep, having all kinds of negative thoughts, depression and anxiety attacks. Do not have much interest in food, or anything else, to be honest! So I prefer to cook at home, or just juice at home, from scratch, rather than eating out. Once I get better, and attain remission, I may feel bolder to experiment and start enjoying a larger variety of food. Based on my experiments with food, my tolerance has dropped down to only freshly squeezed pomegranate juice, home-made buttermilk, steamed and peeled apples, bananas, soaked and peeled almonds, a few cooked vegetables. May be my Ayurvedic medicines has done this, because in the past even during flare ups I was okay with a much larger variety of food items including hard boiled eggs, some chicken, most vegetables, most fruits, most nuts, gluten free bread, white rice, fish, etc. etc. So just biding my time to see if I can once again attain remission. Beginning next month I am moving to another town, and expect drastic changes in my living situation. Will also be changing my Homeopath and my Ayurveda doctors. Moving into a Retirement Resort where I hope to find more company, and a lot more activities to keep me positively engaged — which is a sure plus for anyone’s health and most health conditions. I have been too lonely and alone here, for the last six months, while also trying to adjust to a new life outside US. Your input is really helpful, and so is this support group. Thanks Laura and I hope you never have a flare up ever again. Wishing you the best of life and all the joys in the world. Hugs and more hugs… :D
http://www.breakingtheviciouscycle.info/legal/listing/T/
Connie, this should not be used as a 100% definitive list – if there is something you can not handle well right now, don’t eat it. For instance, cheddar cheese is legal, but should only be eaten occasionally, and only if there are no repercussions. Myself, I don’t eat it dairy at all. Hope this helps some!
Thanks Laura. Right now I am mostly on liquid diet with buttermilk, pomegranate juice, lintel soup, steamed apples, bananas and some almonds. Any time I add anything more, my symptoms are aggravated. I am taking Ayurvedic and Homeopathic medicines, in addition to Lialda and steroids — cannot wait to get off those steroids, do not know when this will happen though! The less I eat, the better I seem to get. It is not easy to keep drinking the same stuff over and over again, especially when you are hungry and have food cravings, but I am really sick of being sick and am doing all I can to attain remission — this time it has to be long term since I intend to make permanent changes to my life. Re Cheddar Cheese, I cannot even dream of eating cheese, or any dairy, poultry, fish, meat, oil, milk, etc etc. I will start adding more foods to my menu only after I attain remission. Also, next month, I am moving into an area where I will have access to a lot more activities that I really enjoy. I am sure that will help. In that area I will find new doctors and also try Nature Cure. I have found a Nature Cure specialist with in-patient facility. I will try him out, stay at his place for as many days as it takes and see how that works for me. I know my condition is more emotional than physical and making all those changes in my life is sure to help. And then this support group is also extremely helpful. Hope you get better and better, and then can eat everything you really want to enjoy. Have a wonderful day!
I know how you feel about restaurants. Really a roll of the dice sometimes, I don’t try new places often. I’m not in remission yet, just had one good day. But I am hopeful. I actually lost another 6 pounds over the weekend. Kind of shocked, but it happens fairly often. I’ve just gotten to the point where I can venture from the house a little, since starting on Uceris, Canasa and Lialda. The Uceris has really helped. I also quit all bread and sugar. I can’t say I’ve missed the 35 pounds I’ve lost in the past 6 months, but I could sure think of an easier way to lose the weight.
Hello everyone,
My husband has ulcerative colitis, and we struggle with it for 11 years. Until end of 2014 Prednisone was working for him, but not any longer. Past year was a nightmare that never ended. He was hospitalized in December 2015 on every possible medication but non of them worked. He was going around 10 tmes to the bathroom at that time, bowel movements have decreased to about 3 in the morning but his bleeding stopped for couple days and came back again. Doctor said that he needs a surgery but we don’t want to do it unless we forced to. We are trying every possible solution to get him better. Until 2 weeks ago he had blood but it was little. One night he started going to the bathroom like 6 – 10 times with much more blood. He is on very strict diet pretty much rice with turmeric and chicken, no salt at all. I’m so glad that I found this website, please let me know if you have any ideas. Also, I’d love to hear from you if you have done the surgery. Thanks!
IMMEDIATELY Stop feeding him solids altogether. Let him be on IV for a few days, and then on liquid diet only, consisting of 1. clear fruit juice (non-citrus only); 2. home-made buttermilk from low fat milk; warm water, Alkaline water if possible. His condition will improve within a couple of days. Continue liquid diet for many weeks and see how much he will improve. It is all about letting his colon heal naturally. Doctors are killing us patients and Medical Mafia has taken over our lives. UC can only be fixed with diet, medicines are not going to heal us. I too was relying on these doctors for many, many years. Now I have moved to India and getting all kinds of knowledge, primarily about natural healing and Nature Cure, that is helping me a lot. I am still far from recovery, but at least I am on the right path. Many people here have CURED their UC with water fast, liquid diet and herbal treatments. Even Homeopathy is very helpful. Do online research about natural healing, water fast, etc. Or contact me directly and I can give you more information. I hate people suffering, the way I have been suffering, for so many years, just because they rely on their doctors and trust their doctors. Doctors want to keep us sick so they can keep making money for themselves as well as for the drug companies — the biggest Don of Medical Mafia. Hope your husband feels better soon. Please do let me know if this works for him — I am sure it will work for him!
Thanks Connie. Over the weekend things got worst and we had to go to ER Monday morning. Doctors said that there is no more medications he can take, only surgery will cure him. I don’t know what we are going to do now. Let me ask you how long did it take you to get better and how serious was your condition? I appreciate your input.
Very sorry about your husband my dear! Colon needs rest. Doctors only care about making money. Surgery gives them money. If you stop feeding him altogether, except for Glucose IV, and water, his colon can rest. His medicines can also continue through IV — only doctors can monitor it. But eating ANYTHING at all, causes poop, and colon does not get any rest. How much time it takes him to heal, is individual, and depends upon how bad his condition is. I wish he had stopped eating and tried water fast (under supervision) much earlier. If Surgery is his only option now, what can I say! May be get another opinion, if possible!
I am still not well, but am on the road to recovery for sure. I am expecting another year before I get off all my medicines, including Lialda, but only time will tell. I am in the middle of a move and moving to a new place, where I will need to find a new Homeopathic doctor, etc. Homeopathy has a cure for this devil. California sure has a Homeopathic center. I do not know if all this is of any use to your husband at this stage, but I am just putting in my 2 cents’ worth in. Food is our biggest enemy. I am only drinking buttermilk, pomegranate juice and water. Also eating ripe banana and steamed apple, but in moderation. No salt, no sugar, no solid foods. It is extremely hard and depressing, suffer from anxiety and many other issues, do not have any family to love and support, so my situation is even worse, but doing the best I can….. Hope he gets better and can avoid surgery. He is in my prayers. …
I have found that Avocado is super easy on the colon. I live on avocado and fruit juices (not citrus) during the beginning of a flare. I add eggs in next when the spasming has passed. But you are right, at its worst only liquids will do, and some days only water. Even juices from juicing are not well tolerated at the worst stage but are good after the severity has lessened, I do make vegetable soups very well cooked and then just drink the broth.
I find bosweellia, rehmania, turmeric, quercitin, proteolyytic enzymes, echinacea, probiotics, and ginger help. But I still have needed uceris and lialda and on occasion canasa suppositories. I seem to mannage with these. I also do homeopathy which helps a lot.
I would like to correct my spellung on the following… boswellia, proteolytic, manage. I should have read it before submitting.
Barb, has he tried the SCD diet? Specific Carbohydrate Diet? How is the chicken prepared? Skin removed before eating? Different starches/sugars affect the gut in different ways. On this diet, rice is not allowed. As far as steroids, has he taken Uceris? I have found great relief with this drug, which has been around just a few years. Also, you said his diet is pretty much rice, chicken and turmeric. Pretty much, or all? ANYTHING else- even mints – as silly as that sounds? Certain starches/sugars feed the bacteria in the gut. Does he take a probiotic? Just trying to help.
Hi Laura, how is pomegranate juice? Home made buttermilk? Coconut water?
Barb
Sorry to hear about your husband. I’ve been through all the meds and ended up choosing surgery (feel awesome now). UC can be life threatening if it’s at the stage of needing surgery so please take advice you are getting with a pinch of salt as fasting with severe UC is a recipe for disaster. Get another opinion but it’s not about money.
All the best
We decided to proceed with the surgery, tomorrow is the day. We tried so many diets, this and that throughout the years, and I think that his colitis is really bad. There was time when he was doing really good and doctor said that he can stop his meds so he did and just like a year later everything turned around even though he was still watching his diet and so on. Maybe if he didn’t end up having the CMV things will be different today, but that’s what happen and there is nothing we can do. I guess that was God’s plan for him. Everyone is taking this monster differently. I wish you best ladies. Thank you for everything….
Barb, not as bad as it seems, as he will definitely get relief and will probably be wishing he had done it earlier. Didn’t know that he had had CMV. This disease is so unpredictable, short of surgery. Hopefully, one day, that won’t be the only “cure”. Wish you all the best, and prayers for your husband and your family. It will get better!
Take care.
Hello everyone.
I’m 28years old and professional athlete.
I was just diagnosed with UC last money. As im new to all of this,I have few questions:
• How long it takes for the steroids to kick in?
– im on the steroids about 10 days now. I definitely feel better for sure,I did lost some waight,my stool is formed probably becouse of the gluten free diet and low fiber diet. So,I noce that some days there is a very small amount of blood/Mucus in my stool. And another bowl movements there is no blood. Is that normal considering that it’s been a little over a week?
I can free some days my rectum is swollen still? Any suggestions?
• Now:)))) ..
As I’m 28:))),I have question about(sex lol) and masturbation
Can masturbation worsend your symptoms? And sex as well? Question for all the guys out there?
Thank you,
Stephan.
Hi. Just was diagnosed july this year 2016.
Sex seems to help my symptoms as far as not being constipated and hurting. This is not all the time though. Im currently on 4 pills of lialda and 30mg of prednisone. This whole experienence has been so depressing as i has to stop breastfeeding my baby due to being on meds and i have to live with a sickness at 26 years old. Some days are good and some make me cry because i just want to do right by my body. I dont want to be on long term meds as i see big pharma for the money hungry jerks they are. They push drugs to make money off of you. And i for 1 want to do things naturally somehow. My regimine inclueds tumeric 2 pills with breakfast: its a anti inflammatory
1 pill ashwaganda: anti inflammatory
Licorice root extract liquid 1 full dropper to 8 oz glass of water.: immuno response regulator
1 pill milk thistle: liver protaction from pharma drugs
And 1 pill prime rose for immuno response
Was doiing greaf and going potty everyday till i over indulged to many days in a row in coffee.
Someone somewhere some culture some secret to getting better…..
Caffeine is a stimulant, and it can cause a flare. Unfortunately, some people just can not resist the lure……. How are you doing with going the homeopathic way? I take meds – (Lialda, Uceris, vsl#3, Omeprazole) along with turmeric and am doing well, but I want to get off the Uceris soon due to blood pressure problems (high) I know the cost of the RX meds are incredibly high, really sad. I wish it could be “fixed” by diet alone.
I was diagnosed in 2013 with UC and was having positice results while taking Lialda, but my insurance stopped paying for it and so I stopped taking it, then I had a flare up which has lasted several months, during that time I moved to a different state and found a new doctor who yesterday recommended I start taking Humira. That recommendation led me here as I was doing research and I am horrified by the side effects of humira and I am not going to take it.
So thanks for putting this site together, I am guessing I have to get much more serious about my diet.
Hey James,
Thanks for joining the site.
There’s a pretty sweet page that has reviews specifically about humira. You might want to check it out. There are of course both positive and negative reviews, but best to be informed.
wishing you the best,
Adam
(here the link to that specific page:)
https://ihaveuc.com/humira-reviews
Hi, if you go to the Lialda website, you can get help paying for your prescription and can print out a temporary card while you’re waiting to get one in the mail
Yes, Thank you, I had done that for a while, but then I did not qualify anymore. So now I have been switched to Apriso.
Hello Fellow UC sufferers,
My name is Jennifer, was diagnosed with UC about 13 years ago.
Last 3 years have been literally hell.
2 yrs ago , 14 hospital stats, 12 blood transfusions, several different meds, basically living on prednisone, my body formed antiboies to remicaide , also on Apriso, probiotics , my doctor at wits end discussed a colostomy, I decided time for a 2nd opinion.
My current doctor started me on Mp6, (mercaptopurine) 50 mg 2x
Humira, which was working wonderful for the last 6 months, longest. I have been out of hospital, even gained weight, but now my stomach is no longer cooperating again .
My diets very good despite my UC.
But I’m losing a tremendous amount of hair since on MP6, has anyone else had this problem since on MP6???
Hi Jennifer,
Here are two pages you can check out regarding 6-MP:
https://ihaveuc.com/6-mp-reviews/
https://ihaveuc.com/medications-side-effects/
Lots of good information on 6-MP there for you, and wishing you the very best:)
Adam
Jennifer, I have UC since 2004. Did not know anything about diet changes for many, many years and kept having more and more medicines, including 6MP. I then came to India, started Homeopathic treatments and also found out a lot about diet changes. I am now on Gluten free, non-dairy diet with a lot of other restrictions, including fast food, food with preservatives, etc. Only eat fresh food, cooked at home, mostly vegetarian, with some poultry and fish. I am off 6MP, have been off this monster of a medicine for over one year. Do not take steroids any more — at least not until I have a serious flare-up again (God forbid!), but still taking Lialda (Mesacol in India); 1.2 gms x 4 per day. Hoping that some day I can even get off this medicine as well. The last flare up was when I tried to taper off Lialda. So will not try to get off this medicine some time soon! Will use much more patience and caution this time! I hate taking any allopaethic meds but no way around it! If you have alraedy made dietary changes to your life style, great! Otherwise please consider serious changes to your diet, before taking more and more meds. In my experience, the US doctors never tell us anything about diet and keep us sick. I am a living proof of this. I now take only buttermilk — home made, with all the probiotics my body can handle, no other dairy, plus low fiber foods, and no gluten at all. Not only I am in remission, but also feel that some day I could be free of this monster of a disease — if I can stay in remission for a very long time. Homeopathy helps, especially since I have found a great Homeopath, who sends me medicines by courier, even if I move to another area where his personal consultation is no longer available. May be I am blessed, but I do feel that some day I will be able to beat this monster — primarily with diet, with Homeopathic medicines, with meditation, with yoga, with the right supplements including raw and pure Turmeric, Ashwagandha, etc. And please do try to eliminate stressors from your life — I know it is easier said than done, but we still have to keep trying, for our own sakes!
Please do feel free to contact me directly at kanwal1001@yahoo.com. I will be happy to share as much information with you as I possibly can. With best wishes… –Connie.
My daughter was diagnosed with UC, she’s only 5 years old. Will the diets work for her too?
Absolutely no gaurantees with any treatments for UC, but defintely has shown improvements for many in all age groups.
Hi Everyone.
I have been suffering from UC since 2008 but got recovered in 2009 from an acute UC after taken a heavy medicine package for one year. In 2014 again I start feeling some problems and diagnosed UC again in lower sigmiod colon, since then I am taking “Mesalezine” but not recovered yet. Currently my UC is exaggerated and in upcoming week i will go for colonoscopy in order to check internal conditions of my UC. I am really fed-up of these medicine, leaving all the time some side effects. I want to have normal life. I need your help Mr. Adam in this regard…..?
My name is Simla residing in Mauritius. I was diagnosed UC In June 2011 six months back after having suffered a lot from abdominal cramps. I had asacol and other tablet containing cortisone. But when I completed my first dose of medication the pain started again. The frequent stool did not stop. Then I learnt from websites that it is a longlife disease. I continued medicines like prednisone, salazopirine out of which I got skin rashes and felt other side effects of medicines with lots of fats deposited in all parts of body. Diarrhea never stop. The Doctor advised to consume only Asacol tablets everyday. It costs a lot but still it did not improve.
Finally in 2014 I got an ayurvedic doctor which did purification with my body. Since 2016, I started taking Foreverliving Products namely the forever Aloe vera Juice and Forever Active Probiotics every and all the other supplements. Now I am completely relieved. Not any single medicine at last.
Now I enjoy the pleasures of life.
Feel free I can advise as a Forever Business Owner.
So far for a year I am free of ulcerated colitis.
I stopped eating wheat, sugar, processed foods and anything with carreegenan in it (cottage cheese, most ice creams, etc)
I was in the hospital for 3 days, lost 20lbs,
was on prednisone and Lialda.
My doctor does not know that I am off of Lialda nor did he ever mention to change my diet.
Hi, I am diagnosed with UC in 2010, so since 8 years I am suffering from UC, in these years Many times the UC stopped and started again, there are many ups and downs in my situation. Now since a year continuely suffring from UC, pills like omnacotail stopes blooding for some time but it starts again, don’t know what to do.
Just told I have uc and scared and always in pain when I eat and have diarrhea. I have not eaten in a week and have lost 30 lbs. what should I do ?