My name’s Adam and I have UC. But that’s alright, UC is a disease that can be beaten, and life for sure can go on after your diagnosis.
I started iHaveUC.com back in January of 2010 with the hopes of connecting with other UC’ers. If you are new to the website or my e-Books, you’ll learn very quickly why I’m a firm believer that interacting with others is crucial to beating this disease. Many people that I meet believe their lives are over with a UC diagnosis, far too many people. They think their lives are doomed to “being sick forever”. That’s just not true, life for sure goes on, and the painful symptoms can go away no matter how young or old you are.
So what about my colitis?
Actually, I’m more or less the common story. Probably just like you. Before I was diagnosed, I went for months and years struggling with undiagnosed symptoms. Then of course the bleeding came along, and I still didn’t tell anyone. When things got really bad, I eventually got a colonoscopy and received the news: “Ulcerative Colitis”. From there, I started all sorts of medications, and unfortunately I had very limited success. Eventually I had to deeply consider surgery because none of the medications were working well.
Luckily, with a little help from another UC patient, I was able to take control of my colitis with some diet changes(I talk about this in several posts on the site and in full detail in my ebooks). I always thought diet must have something to do with my colitis, but all my doctors disagreed. Well…the rest is history. The overwhelming majority of my post-diagnosis days have been medication free and I never ended up having surgery.
THANK YOU for visiting iHaveUC.com!
There is all sorts of things you can do here to help out with you colitis. It has taken me thousands of hours to put it all together over the years, but it has been well worth it. There is a ton of super valuable information here, written by and for people who have ulcerative colitis. People have let me know over and over again that the website is the most comprehensive ulcerative colitis site ever, and that’s a huge compliment indeed. I hope you feel the same as well once you really get into it. That’s the whole goal. UC definitely doesn’t need to be some big scary disaster that never ends.
Things You’ll Want to Do Next:
- Join the website’s newsletter. Takes about 2 seconds – click here
- Videos. Do you like them? OK, I do too. Watch my videos – click here
- Read. I’ve written over 200 posts on various UC topics. They are ALL FREE – click here
- READ MORE. 1600 other stories from other UC’ers who have contributed over the years – click here
- My eBooks. Read em! (They are well worth your time & investment) – click here
Thank you again for being a part of the website, I hope you enjoy iHaveUC. Most importantly, especially for those of you who are suffering from out of control UC symptoms right now. You have to realize one thing: UC symptoms can be awful, horrible, the worst thing in the world. That is for sure. BUT, active symptoms don’t last forever, and we all have options. So keep your head up. Life does get back to normal and happy days are not far away.
Warm regards and healthy days ahead,
Adam
Hi Adam or Any Fellow UC family,
My 14 year old son was diagnosed with UC 0 July 2012. Was hospitalized for 2 months, has had 4 infusions of remicade and unfortunately there was no great improvement. He has had c-diff twice in the past 4 months. He is up for another dose of remicade and the GI says it now has to be every 4 weeks. We have until Friday to decide if we are moving forward with it. Right now he is on full TPN, full bowel rest and the bleeding is very mild. He does get low grade fevers though. How was your experience to get off the Remicade? PLease help. We are giving him Slippery Elm bark 3 x a day, Probiotics, and Turmeric. Can there be life without the Remicade??
Hey Paula,
I’m sorry your young son is in the middle of getting diagnosed and getting back to a state of normal. Unfortunately, everyone’s got to go through that period, and he will as well.
As for your question with regards to Remicade, I initially responded very well to the first infusion with noticable improvement in less than 2 days, however towards that and right before the second infusion, things started to fall off and symptoms returned for me, and the 2nd and 3rd infusion were of little/no benefit, so we decided to stop.
I’d recommend that you read the Remicade survey results from many other UC’ers. We conducted that survey several months ago, and it may help you out with your research and decision making. Here is the link to that: https://ihaveuc.com/remicade-infliximab-reviews-and-survey-for-ulcerative-colitis/
As for can there be life without Remicade, most certainly there can be. I think I’m proof of that along with thousands of others, so keep your spirits and head up. The tuff times will pass as they always do.
-Adam
Hi Adam ,
This is Vishal ,
My wife was diagnosed with ulcerative pan colitis last year , she was on sterioids for 3 months & now she is taking Sezo 500.
She is feeling ok now.
We are pure vegetarian from india , so can you help me with the VEG SCD Diet chart,
Thanks
Vishal…
Hey Vishal,
What you might want to do is take a look at this website link, there is a list of legal and illegal SCD foods listed and nearly everything you can imagine is shown. You should get some ideas on veggies that work well and others that are more difficult. here’s the link: http://www.breakingtheviciouscycle.info/legal/listing/
-Adam
Thank you for this information. My husband had his first horrible flare up this past Saturday. It was so severe I had to call 911. He was in so much pain. The books and websites you are sharing are awesome. Thank you! I need all the information I can get to help my husband.
Hi Adam
I am new to this site. My husband was diagnosed with uc In 2014. He is having flare up as soon as we skip Prednisone enemas for 4 day. Then he gets flare. Have to go toilet just after food. We did not start and scd or gaps. Hus feels he will lose more weight with these.
His blood platelets also goes down .
Dr said he has only mild colitis. Dr also can’t understand y he is losing weight. He as asked for another colonoscopy.
Ur site has given me a positive outlook towards uc. Thank you.
Medications:
Pentasa 500mg(2*2times a day). Prednisone Enema. Iron tabs.
{Before he was taking Asacol but it was not digesting(it came out with stool) though dr didn’t believe.}
Wen he took Immuran for 1 week his blood count dropped down to 3.
Give me some suggestions on how to improve his health. Pls.
In Scd grains means rice also?
Hi Nas,
I am sorry to hear he is not doing well, but maybe some things have turned around with his ulcerative colitis since you posted.
One thing I always highly recommend to everyone who are in the middle of a flare up that doesn’t seem to get better is to have a C-Diff test done. This is done via a fecal stool sample. A slight chance, but always something that is good to rule out or take care of as I have had it twice, and many other UC’ers as well. There are studies out that people with UC are more prone to coming down with C-diff, and the symptoms are very similar and often hard to distinguish.
As for diet, I have had great success with diet changes. I have done that for many years now, and if I would recommend one thing more than any other which may not be too difficult for your husband to stop/consider, it would be to remove milk products temporarily. Then, removing grains as well to see if he can get some relief.
I hope he is doing better, as colitis flare ups are very difficult both physically and mentally, but he will not be like this forever.
Best to you and thank you for using the site,
Adam
I’m on my second day of a med new to me Uceris. Just wondering if others have taken this med & how they’ve responded.
Hi Linda,
Here is a great page with other UC’ers reviews from taking UCeris. You just need to scroll down the link, and there are many reviews to read:
https://ihaveuc.com/uceris-reviews-a-new-colitis-medication/
Best to you,
Adam
Hi Linda
I know this is way after the fact but I took Uceris for almost a year!
I was in such a bad flare it seemed no matter what I did, or didn’t do food wise didnt matter at all.
At the time I was taking mesalamine anti inflamatories and then my body just resisted them.
I started getting better within a week of taking Uceris.
There were indeed side effects.
I always felt like my head was on fire, some double vision, anxiety,
disorientation, etc but Uceris DID get me out of the flare.
I watch what I eat, take probiotics, follow tge SCD diet but there are times, for no apparent reason, the colon wants to pick a fight with you!
My doctor took me off Uceris and told me I had depended on it way too long.
I take Apriso, alternate it with Lialda every few months and my colon seems to accept that for now
Adam,
I hope you read this post and respond. I have been fighting this UC disease for 23 years now and I am about to lose. I have tried many diets including the SCD with no real results. My latest flare has lasted nearly three years non-stop and has resulted in an emergency appendectomy and then the removal of my gall bladder and due to fears of a performation a trip to the Cleveland Clinic for removal. I have tried all the meds with no results, I have actually gotten worse and my entire colon is now a rotten looking useless piece of I don’t know what. I think something we need to look into is that once your gall bladder is removed your UC will probably get worse due to the violent nature of bowel movements due the uncontrolled amount of bile getting into your system (bile reducers do not work). I have now lost 45 pounds in the last 4 months and have the debilitating joint pain as well with no relief in sight. For some reason I am the proof that not everyone can fight this disease and overcome. I am being told by many in my support group and on this website that after the surgery I should feel like a new person again. Please do not get me wrong, nobody wants to live life without a colon but in my case I have no life with a colon. I am also being told by some that have had the surgery that the joint pain will go away once the colon is removed. Do you know of or has anyone ever commented on this? Wish me luck and for anyone facing the surgery please read the “one month after colon removal” on this site by Blake. It does help and also read the book Great Comebacks from Ostomy Surgery by Rolf Benirschk.
Hey There Mike,
First of all, I am terribly sorry to learn that times are/have been so horrible for you, and I’m sure you are extremely frustrated with little/no progress after all your hard work in trying to get past the symptoms.
You’ve got some really great questions, both in terms of the gall bladder removal and as well with what to expect in terms of the joint pain issues post surgery.
A moment ago, I posted on the http://www.facebook.com/ihaveuc group page your question with regards to the joint pains, and I’m hoping shortly there will be some resopnses from others who have already had colon surgery. About two years ago this question came up and I vaguely remember a girl named Ashley who has posted about her surgery talking about this, and unfortunately I believe she mentioned that she still dealt with some joint issues from time to time (but I’m not certain) and I’m hoping to see some more recent responses. So if you use facebook, you should check out the group(which you may already be a part of) and I think that is going to be the best place for followup on this.
With regards to Gall Bladder removal, I am no expert by any means with this, however, there as well have been at least one story posted by another UC who mentioned this I recall from either earlier this year or late 2011. You can search “Gall Bladder” in the search bar on the top right hand of the site and then you should get a listing of “gall bladder” mentions from within the site.
But, I did just complete a quick PUBMED search, and there was an article that caught my attention that you might be interested in reading on this topic. It’s titled:
“Cancer of the bile ducts associated with ulcerative colitis.”
here is the link, and you can even download the full study there and read it if you like:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1343853/
Mike, I wish you the very best moving forward, and I most definitely hope that 2013 brings you some normal living which you for sure deserve.
-Adam
I just want to share a little about my recent experiences and how every one with UC should be aware of this. I thought I had a bad flare for the last 10 months (and I possibly had some what of a flare but this was not the problem). After losing 30 pounds and becoming so weak that I could no longer care for my toddler, running to the bathroom every 5-10 minutes day and night, not getting any sleep, constently having accidents, not being able to leave my house, basically living a nightmare. My husband finally forced me to go to the ER, it turns out, the problem was that I had an infection called “Clostridium Difficile Infection”. I had never heard of it but it is supposed to be very common with people who have UC or Crohns. We still don’t know what caused it because it usually happens when a person with UC takes antibiotics, which I did not take. But i just want to let everyone know that in this case diet did not fix the problem because it was a different problem which could have caused me a lot of harm if I wouldnt have checked in to the 1 week long and intense hospital stay. Good luck to all!
Hi Apple,
Thanks for sharing your experience, and yes indeed C-diff is something that we all should be aware of. One of the messages I send to everyone who joins the newsletter is about c-diff because often GI doctors don’t mention this to UC’ers when they are diagnosed and as you’ve experienced yourself (me too) we as a UC group of folks are at a higher risk/more prone to coming down with it.
Glad you’re feeling better and thx for sharing,
Adam
I joined this list as someone who did not have UC, but lived without colon use for the past six years. My problem was endometriosis stage four, gripping my rectum. The pain was something dull but nagging and chronic. So my deepest empathy to all. During that time I had constant joint pain, when my colon would would block up back would be lower back and joint pain in the back of my legs behind the knees. My empathy to all. I have a j-pouch and love life without an ostomy!
Hi Adam,
I just found your site. I’m so glad you made this site and to share your story! I’m only 24 and I was diagnosed over 10 years ago and when I was diagnosed the only support site was a chat board hosted at John Hopkins. I’m glad this site was realized and that you can help people!
I also just wanted to share my story to help give people you are early in their diagnosis some hope! I was also diagnosed in 2001 with severe pan colitis as well as Autoimmune Hepatitis (my immune system also attacks my liver but luckily that went into remission in 2002). I made it through a toxic reaction to 6MP, being on 20 mg a day of prednisone for 3 years (subsequently becoming prednisone dependent) and not having methotrexate work by itself. I finally made the decision at in 2004 to start Remicade (it wasn’t even approved for UC yet!) I was able within a year to get off prednisone and with 4 to get off methotrezate. And I have been on it for 8 years at 5 week intervals and this past year finally went in to remission! Since I hit the 10 year mark of an active disease I have started cancer screenings which I feel everyone hitting this milestone should discuss with their doctor!
Despite all of this I played varisty in two sports in high school, went to the college of my dreams and graduated with a degree in architecture. Studied abroad for a year in London and Florence and Japan! And actually received my remicade infusions at hospitals there! I’m now in grad school and will actually be making it to present at a conference in Greece. I am also an avid scuba diver and an hiker. I’ve hiked in the Adirondack Mountains, Ireland, and Mt. Fuji.
What I hope other UC suffers will take from this is that you can still live your life to the fullest with UC. You can’t look at anything as a limitation. THIS WILL MAKE YOU STRONGER! And give you the drive to get out and enjoy life. You can’t be afraid of what the future might bring or what if something stops working because it will only limit you. I don’t know how much longer I can stay on remicade but there are always “if’s”. Do what you love no matter what! Also, stay on top of research being done about UC. Being informed will make everything less scary and will allow you have really productive conversations with your doctor.
And for all those pasta lovers like me, try Dream Fields Pasta! Tastes like the regular pasta except that it has a low glycemic index as it was made for diabetics. It doesn’t affect my colon. My other diet recommendations that have worked for me…stay away from artificial food dyes (especially red and blue), anything with lots of preservatives (I cook fresh daily), I avoid beer and alcohol although do occasionally enjoy it maybe once a month, stay away from nuts, and really just find what works for you.
Also, a tip for the women (guys can ignore)try birth control. There are new studies that are trying to establish a connection between the hormone changes during your periods and flare ups. Limiting the amount you have can dramatically help your flare ups. I made this switch about a year before I went into remission. I can’t definitively say that’s what made the difference but I do believe it helped. Talk to your OBGYNs.
Here’s the article: “The menstrual cycle and its effect on inflammatory bowel disease and irritable bowel syndrome: a prevalence study.”
http://www.ncbi.nlm.nih.gov/pubmed/9772046
I hope somebody finds something that can help them in this! I wish you all the best health and happiness!
-Angela
Thanks Angela for all the great info, and super cool to hear/see how you’re still rocking it hard with your UC! keep it up!!!
–Adam
quote: “Hi Apple,
Thanks for sharing your experience, and yes indeed C-diff is something that we all should be aware of. One of the messages I send to everyone who joins the newsletter is about c-diff because often GI doctors don’t mention this to UC’ers when they are diagnosed and as you’ve experienced yourself (me too) we as a UC group of folks are at a higher risk/more prone to coming down with it.”
You are right there, Adam – I live in the UK and no-one (GP or consultant) has ever mentioned C-Diff to me, but last year when I had a flare and had to do a stool sample, I noticed the test sheet I had to hand in with the sample said ‘C-Diff’ – and I knew what that was, because it was a contributing factor in my mother’s death in 2007 (she had COPD and diverticulitis). If it hadn’t been for your site I would still not know that UC-ers are prone to it, but obviously my GP knew, and probably ordered the test because as it happens at the time I had been on anti-biotics for something unrelated. I will be extremely wary of taking antibiotics in future!
Hi Adam,
Just a quick question…I seem to remember reading a post from you mentioning bifido bacteria in probiotics and that it should be avoided. I have tried to find the post again but haven’t had any luck. There seem to be mixed reviews on this and I’m a little confused about bifido versus bifidus etc. Can you shed any light on this? Thanks so, so much for your time. Have a fantastic week!! Yvonne
Hey Yvonne,
Bifidus is a strain of bacteria that people often avoid, especially in terms of making homemade yogurt, and if you are following the SCD diet. What’s crazy about Bifidus is how it comes in a bunch of different varieties. For example there’s Bifidobacterium Bifidum, and there’s also one called Lactobacillus Bifidus, and even Bifidobacterium Longum.
Also, like everything, you’re for sure going to see mixed reviews. But again, if your leaning more on the SCD diet side of things, then this is pretty much why you would avoid Bifidus, the SCD’ers of the world feel it can lead to a harmful bacterial overgrowth within the gut.
best of luck!
-Adam
Dear Dr Adam. I really do hope to get an answer from u as soon as possible. I am 49 and 7 months.(Muslim) during Ramadan month I did not eat food for about 5 nights and become very thin with conspitation and a little blood from anal fissure(hemorroeid operation was about 21 years ago)A doctor prescribed some medcine for that problem but after a while I felt my stomach pumps acid and I’m reluctant to eat food( nervous condition affected me too).Andescopy showed multiple erosions and I took some medcines and I looked better after a while .But a couple of weeks after cutting the drugs I noticed my stool alternates to normal or daiherra or sometimes mucus only( stool test showed no Bacteria or blood) I can only eat boiled chicken or red meet an Fish(salmon) in fer sometimes with boiled potatoes and carrots. Another doc said you should prepare for Colonoscopy test but I am too weak to take this test with special syrups and pills like Bisacodils that make my bellies soften with force. Please show a better and easier way and is it dangerous to post pone the test? It’s about 5 months starting the problem. I am really terrified.
Hi Alireza,
Please realize, I am NOT a doctor, but rather an ulcerative colitis patient. That said, it is almost always a good idea to move on with a colonoscopy when it is being recommended, especially if you do not know what is currently wrong. Ulcerative colitis for example is almost always diagnosed via colonoscopy or sigmoidoscopy. The prep is no fun, that is for sure, but a necessary evil.
I wish you the very best no matter what decisions you make moving forward,
Adam
Dr. Adam
I am a mother of a 17 yr old boy who was resently diagoned with uc. His first flare was in oct 2014 and he was hospitalized for 2 wks. He had lost almost 40 pds. He was all better and this wk he started with another flare and hasnt been to school. Can you please tell me how we can get the nauseas attacks away. He also has bad gastritis and he hardly can eat with pain. Please help.
Hi Candy,
I’m sorry to hear your son is in the middle of UC symptoms. If your son is taking medications to treat his UC, I would consult with your GI doctor about the medications he is taking to find out if nausea is a common side effect. If so, I would hope your GI could advise you on either some alternative medications which may improve or eliminate the nausea. I myself don’t take any medications and treat my UC with dietary changes, and it has been quite successful for over 5 years now. Details are on my diet page: http://www.ihaveuc.com/the-diet
I make “tea” from brewing slice up ginger root. Let it simmer on the stove for a few minutes. Helps with the inflammation and the nausea. Learned this while working for an integrative cancer doctor. That’s one of the things they did for nauseated chemo patients. Doesn’t taste great, but works like crazy.
Hello Adam, my name is lucas and i´m from brazil, i was diagnosed with colitis about 6 months back, today I take my med 2 times a day and I live pretty well, the thing is I play soccer and was offered a scholarship from a university in the U.S. but I am affraid of going because I dont know what will happen if I have a flare. I´m already going to college here in Brazil so if I go and loose the scholarship because of the colitis I would have to start college all over again here in Brazil. at this moment I am in a medium form and practice only 3 times a week. do you think I should take this oportunity ? is it possible to be a competetive high level athlete with u.c ? practice every day and have the proper nutrition for that type of activity ?
Hey Lucas,
That is a difficult question for me to answer. Yes, there are athletes with UC, so yes of course it is possible. But at the same time, the recovery process from a flare up typically takes longer for UC’ers to get back to their pre-flare physical level when compared to people without UC. I guess my question that I wonder is if you have ever trained hard (100% high level training) since being diagnosed? Also, have you ever noticed your symptoms (maybe even pre-diagnosis) get worse under extreme physical activity?
hi adam, answering your question, yes i have trained 100% since being diagnosed, and it did not sim to affect me. the only thing i´m afraid is if i have a bad flair how long it would take me to get back to playing again, because having a scholarship that cant be to long. what i mean is, i did not have a when training at 100% level, so in case o having one while playing at a high level i dont know how long it would take me to get back on a field. every night i sit back and thing what i should do, it would really be sad if i lost this oportunity, i dont thing i would get it again.
Hi Adam, thanks so much for creating this space where all of us UCers can voice our concerns and triumphs. My heart goes out to everyone out there who may be suffering right now, especially the young kids. I guess I’m lucky, didn’t have my first UC symptoms until I was in my mid fifties. As a clinical provider I knew what was happening to me but fear made me avoid the Dr for 4 months. That was 5 years ago and I’m lucky to respond to llialda 4 grams. I did have one hell of a flare last month that led to a minor lower GI bleed and my GI wanted to start me on Uceris. Luckily I was able to get better without that, do not want to become steroid dependent if I can help it. Having a flare is a real quality of life thing, couldn’t even walk my dog cause I had to turn back to go to the bathroom. It helped a lot to read everyone’s stories when I was really sick. Like I said I’m better now. It does seem my symptoms are much worse in the morning. It’s not the men’s wearing off either since I take these in the am and again at bedtime. Anyone else have worse symptoms in the am?
Hi Adam
Just to thank you for putting up the UC Biologics Comparative Study on the website.
I’ve never had to go down this road in my UC treatment aving made a pretty good recovery after a month in hospital in 2011 (when it got close to bowel removal). I know that Infliximab would now be available to me as a last resort treatment.
Good thing your website has informs of such a treatment because when it got close to having the op in 2011 no one gave the option of the treatment and I didn’t know it existed.
Thanks for all the work you do for us UC’ers
Best wishes
Tim Carrington
Big thanks Tim for your message, and best of luck to you in the future and continued success and recovery:)!!!!
keep us posted on how things go:)
take care,
adam
Hi Adam
I found your site just a couple of weeks ago, and let me say I love your work. You are giving people with UC an amazing platform to talk and share information and I thankyou for that. Its an amazing thing!
I was diagnosed with UC 7 years ago and was first put on steroids and asacol tablets then slowly moved onto mercaptopurine 50mg. I was on mercaptopurine for about 5 years until recently just two weeks ago I had to come off them because doctors thought it was effecting my white blood cell count. Around the start of this year I had stay in hospital because of this. Doctors moved me off all medication and my white blood cell count is now back to normal. I have now been off all meds for two weeks and everything was going well until today when I had my worst flare up for a long time.
I see that you are off all medication now and are doing well and this gives me hope.
I would like to ask how it was for you when you moved off medication?
I have been on SCD diet for one week now, although I do still eat white potato’s sometimes because I am very new to this diet so am in need of recipes.
I am going to give your book a read, and I’m sure you have some cool recipes in there to try :)
All the best, Darren :)
Hi Darren,
Thanks for writing in and letting me know how you’re doing.
As for your question about moving off medications and how that went, well, great questions. When I started treating my UC with diet changes as I wrote about in my ebooks, I was actually in the middle of a prednisone taper at the time. I had been moving down from a high dose to getting off them and that is when I introduced the massive diet changes. That combination wasn’t by any plan, however I was very near to getting surgery as it was not clear by any means how my symptoms would react once off the prednisone as I’d had major problems previously in the preceding year.
But, it went well. The slow taper finally ended and then I was on the diet full time and have been for the most part ever since with a few times where I’ve fallen off the wagon and started eating all sorts of things that were known to be problematic…(but heck, we’re all human right) and bread sure tastes good when you haven’t had any for five years as I found out in 2013…but that’s a different story.
I will say that my doctors were opposed to me not moving forward with a new medication to try (6-MP was what they had thought should be my next move before surgery) but I wasn’t willing to go there as the side effects from the other biologics and the lack of results were just not worth it to me anymore back then. And I’m happy to have moved forward how I did.
I wish you the best with however you decide to move forward, and if you download my ebooks, I hope you enjoy reading them as well and gain something from them that helps you too.
Best,
Adam
Hey my name is Kasey..
So I got diagnosed with Ulcerative Colitis back when I was 11 and I’m 15 now. I struggled for a very very long time. I was on lots of meds you’ve heard all about but nothing worked. So I had my colon removed. I have the j-Pouch now and have had it since Christmas of 2012. Well lately I’ve been getting lots of infections in my small intestine. Mainly because I haven’t been taking care of my body the way I should.. I eat foods I’m not supposed to and struggle with remembering to take my probiotics and vitamins every night. It was a recent doctor appointment that made me realize that I will get worse as I get older. I’m going to get really sick and possibly overweight. I could even get my colostomy bag back and I don’t want that. In all honesty I need help. I’m going to be starting my Junior year of high school next year and I’m super super involved in school. But I can’t be involved in the things I love if I’m not taking care of myself. So basically I am writing this for tips on motivation and no colon diets. If you could help me that would be awesome but if you can’t I would really appreciate it if you could direct me to someone who can… I really appreciate it..
Hi Kasey,
Here is a link from a pretty amazing person who has had his colon removed. If you go to this story, there is a link in there to his own website, where he shares lots of great info: https://ihaveuc.com/hello-there-ihaveucers-collin-jarvis-the-runner-is-back/
How were you able to get off medication? I currently on 1 Lialda per day but would like to be able to be medication free. I have been in remission since September
Hi Karen,
I went from a very slow taper of prednisone to starting the SCD diet. So I think the best answer to your question from my perspective was that I transitioned away from a diet that previously was filled with alot of carbohydrates to one with much less. Best to you:)
Adam
Adam
I just realized that I have not been getting many updates or emails from the site over the last couple of months. I also note that the individual stories seem to be out of date order in other words I looking a readers questions and comment from 2015 versus current 2016. Articles seem to be posted randomly versus current. It there something wrong with my reader or is thee anything I can do to fix this?
Murph
Hi Murph,
I’m not quite sure, sounds strange. The stories on the homepage are listed for the most part in chronological order. Every once in a while, a particularly important story might be posted on the homepage longer than others.
As for comments, nothing has changed with the commenting system for 6 years now. There are over 25,000 comments on the site, and for sure some of them are not from the past few months. What might be happening is if you are subsbribed to older stories, you might every once in a while receive a comment to an old story which has a recent comment…maybe that is the case for you.
As for email updates, there have not been very many that I have written in the past few months (I have been tied up with a very big website project that will be getting announced very very shortly, so if you are still on the newsletter, you will for sure get the update when I have it all drafted properly).
Thank you for your message, always great to hear from you. I hope I’ve answered some of your questions,
best,
Adam
Adam,
My 22-year-old son who has been on SCD for 2 years and is currently in remission with UC went to see a nutritionist who put him on two supplements: Chlorophyll and Noni. However,we checked them out on the SCD legal/illegal App and the Noni is listed as illegal and we could not find chlorophyll, but we found something called clorychlorophyll and it was listed as illegal. Do you know anything about these two supplements and/or would you recommend them?
Hey Adam hope you’re having a great day. I’ve had UC now for 5 months, lost 40 lbs and am in the midst of yet another flare. I’ve only had 1 normal day the entire time. Last week I couldn’t make it from point A to point B without having an accident. Not cheating on anything! Right now just on hard-boiled eggs and bananas with my VSL#3, prednisone 10 mg Lialda and omzeprazole. My flare kicked in when I was tapering off the prednisone.
After reading what people have said about quitting smoking and having symptoms flareup I decided to check something out on my own. I only smoked for a brief time when I was a teenager and I haven’t smoked since but when I saw a commercial the other day for nicotine patches it gave me pause . I certainly didn’t want to smoke but could this actually help? I found my answer! There have been studies done in the UK that show promise so I’m going to give it a whirl -got my patch on now -14 mg one patch a day. I’ll let you know how it goes, still sticking to my meds right now but trying to pull out of this tale span of a flare that I’m in wish me luck! I’ll be trying it for 6 weeks. If it truly makes a difference, I will probably stay on it.
Wishing you all the best, this website is a godsend for answers and reassurance thank you so much for all your hard work. Plus your a pretty funny guy. Bless you.
Update: I was not able to stay on the nicotine patches long enough to see any results. My body did not accept the nicotine very well, made me nauseous after 3 days, had to quit. In remission now with Lialda and Uceris, weaning off Uceris now.
Hi! I have UC. Had since 2012. I love peanuts! Are they bad? I know Almonds, Chestnuts, & Cashews are good (high in alkaline content) Which category does peanuts fall under?
Also I love my sandwiches. I know white bread is a no -no. What about whole grain, gluten free, vegetarian safe breads?
And what about corn?
I’ve been incorporating the blueberry, strawberry, banana, carrot, spinach, organic peanut butter & honey smoothies for dinner at nights 3-4 times a week. Love it!
Currently having a stupid flare up. Was in remission for 2 yrs. Always took Lialda on daily basis since 2014. Now 30mg Prednisone for almost 2 weeks. Sucks
Hey Diana,
Thanks for writing and your questions.
Peanuts are typically not easy for UC’ers, and are more on the advanced(when symptoms are NOT present) list. I would stay away from them if you were experiencing any symptoms and then try then in small amounts once symptoms are gone and see how things go. I would never go very hardcore and eat tons of peanuts even if symptoms are gone as again, they are often difficult to digest even for non-IBD people.
As for corn, this is not something that people following the Specific Carbohydrate Diet feel is a good idea. Now, that said, I have started incorporating corn into my diet about 3 years ago after about 4-5 years of not having it at all. By corn, I mean pretty much exclusively tortilla chips that are made from corn or tortillas themselves (as I love mexican food/restaurants…)
I don’t eat any corn on the cob, and don’t plan to. And, for the most part, my body seems to be doing pretty good with the (maybe once a week) corn intake. Again, I would not go overboard with corn, and would not eat corn if symptoms were present.
I wish you the best with the prednisone and getting the flare under control. Have you checked out my flare video:? here is the link to that:
https://ihaveuc.com/the-colitis-flare-beat-down-party-getting-out-of-my-flare/
Best to you,
Adam
Anyone out there have a problem with getting a colonoscopy? I found that the day after i had bleeding is this normal? i had biospies taken and am wondering how long it takes for the bowel to get back to normal. I was a bit anxious as it did state on a leaflet in the hospital that you wold have to contact your Doctor if beeding occured? i think with all the examination involved and biopsies taken it might be normal I would apreciate any views on this. Rita
Hi Rita,
Thank you for writing.
I believe what you are describing is relatively common, especially for people with UC who are prone to irritation/inflammation within the colon. I myself have noticed that bleeding has appeared shortly after a colonscopy (or the sigmoidoscopy) and it was a bit of a downer, especially when prior to the procedure all seemed normal. I have always chalked it up to the very “out of normal” things that take place during the colonoscopy. Our colons are simply not used to the snake going up there, taking a few bites and blowing us up like a balloon. It would be interesting to know about some studies on this, but at the moment I am not aware of any.
For sure, I would let your doctor know, he/she may have some other ideas for you.
Best to you and wishing you well,
Adam
Adam is the pro I don’t think there is more honest and straight forward advice out there. I would add that in my case and I’ve had 13 in two years the prep for a “C” is rougher on the back door than most people think in my case I take almost two weeks to fully settle down and recover. However your body is your best informer if the bleeding seems or looks excessive call your GI….. always air on the side of caution like an eye once these colons are shot they don’t grow back.
Murph
Adam is the pro I don’t think there is more honest and straight forward advice out there. I would add that in my case and I’ve had 13 in two years the prep for a “C” is rougher on the back door than most people think in my case I take almost two weeks to fully settle down and recover. However your body is your best informer if the bleeding seems or looks excessive call your GI….. always air on the side of caution like an eye once these colons are shot they don’t grow
Murph
Hi, I live in the UK and was diagnosed with UC in 2003, been many ups and downs, at the moment all good on a maintenance level of mezavant – 2 x 1200mg tablets each a day. (This is mesalazine in a gastro-resistant, prolonged release coating). In a flare my bm change – smelly wind, diarrhoea, mucus blood, frequent trips to the toilet, tired but luckily no pain. My mum also had UC and experienced similar symptoms.
My friend has just told me that her daughter has been diagnosed with UC, when I enquired further how she was, the only symptom she seems to have is terrible stomach pains. This is probably a stupid question but can UC present with the only symptom of stomach pain?
Janet
Hi Janet, I think it is definitely possible. Seems after hearing from so many UCers, that in some ways we are all a bit different and sometimes the same or similar with regards to symptoms.
Thanks for the reply. I was hoping it could be something less.
Hi everyone,
I am just wondering what are the blood group of major UCers. Research suggests taking diet based on your blood groups.
https://www.webmd.com/diet/a-z/blood-type-diet
For example, if you are type A then it suggests for a meat-free diet. I am blood group type A and I am thinking to change my diet to SCD.
But if you want to follow SCD diet then the meat is the major part of the diet.
Do you think this blood group type really matters?
Whom of you have success with SCD, no matter of blood group?
Best wishes,
Mukesh
Hey guys, I don’t know how I found this website but I’m so glad I did!
My 15 year old son was diagnosed with UC nearly a year ago and was placed on a plethora of medications. His last attempt at Remicade concurrent with the weaning of Pred made it obvious that the Pred’s were holding it together. We’re now weaning of Pred’s and the Dr has recommended surgery as the next step.
I don’t believe that as a parent I have covered enough treatments for him prior to him going under the knife.
Since last week he has been experiencing a blood/ diarrhoea flare up.
We immediately adopted the SCD plan, began with probiotics and omega 3 caps, used Blackmore’s ginger tablets (the travel sickness one) when nausea struck (instead of using Ondansetron). He takes sips of electrolyte solution after diarrhea bouts. He is also on the homoeopathic medicine called ‘Aloe’ and he just began taking small amounts of the ‘black seed oil – cumin’. He has a good amount of raw honey and we recently began the aloe vera gel consumptions. I make him have a cup of bone broth daily, as well as peppermint and ginger tea occasionally (cold version). We alternante between stomach massages of almond oil and black seed oil every day.
The blood from the diarrhoea began to gradually get less with each bathroom trip until it got to a few drops here and there, not with every bout. He then decided to eat out of the SCD and boom! he had a relapse. Now we’re back on track again trying to tame the flare.
My problem is that I can’t find big aloe vera leaves anywhere? I called up a few nurseries and they didn’t have any in stock and the other ones had small plants. I keep on going to Bunnings to buy the small pots which last a day’s worth! Does anyone know where I can purchase a large plant from? Im based in Brisbane.
Thank you so much and I am confident that we will all find the cure that fits best for us.
Shak
Hi Adam,
Felt I had to share my story, as my UC has taken some twists this year that have blown my mind.
Firstly the back story; it’s actually Ulcerative Proctitis I’ve got (the country cousin of UC) but been a painful 7-and-a-half years anyhow. Â I don’t seem to have remission, it’s always on. Â Thick blood and constipation mostly, an everyday occurrence at times.
I’m a stubborn soul though, and when an IBD nurse told me years ago that there was no cure and I’d be on medication for the rest of my life, I dug my heels in. Â My medication wasn’t doing that great anyway, but i read sites like Adam’s that gave me hope (and I really mean that, it helped in some tough times).
I tried everything – Paleo, SCD, Probiotics, No Caffeine/Alcohol and every food combo known to man. I took up smoking, daily Cider Vinegarl, loaded up on vitamins & supplements (the health food store guy is a good mate now), caught some rays, boosted my stomach acid, tried yoga, slept on my other side in a new bed, avoided copper piping and tap water, replaced my non-stick pans, washing powder and liquid. I’ve used Chinese Medicine, kinesiology etc. You get the picture, not many stones unturned.
…and some of it worked. SCD was great, cutting out histamine and dosing with DAO really worked. It didn’t get rid of it though, and slowly it was getting worse…
…until in January this year I’d hit bottom. Blood everyday and all day. Work was a nightmare. I’d tried everything. But I knew that there was hope. When I was away in some particular places it suddenly improved. The further from civilisation the better. Up a mountain, in the open, the difference was obvious. Â
Then I caught myself saying ‘I was fine last Christmas, and it was nice being away in a cottage with no Wifi…’
So one weekend I turned off my Wifi and my mobile, what the hell. Next day, no blood.
A few weeks of experiments, no bluetooth devices, a wired connection on laptop (this one), sitting away from routers at work. Every time my symptoms improved.
Well it’s now 231 days later, and I know for sure now that my proctitis is triggered by radiation. Not just maybe, it works like clockwork. I expose myself to high levels and I bleed.
It’s both a great revelation and has scared the living bejeesus out of me. I can’t be near mobile masts, have my phone on in my pocket or have wifi at home. I work in tech (it’s a problem) and I’m only just hanging on at work, but I know the reason now.
So am I a weird case? Maybe. Radiation Proctitis is a thing it seems, but not from domestic levels of radiation (as far as i can see). My IBD doctor has just shrugged. There’s nothing they can do apparently, it’s not recognised.
So i’d thought I’d put it out there. That’s my story (so far).