Intro:
47 year old male living in upstate NY. Diagnosed with UC about 3 years ago. Have been in remission for close to two years now.
Some more about Me:
Always researching the latest meds, probiotics and diet for maintaining my remission.
Symptoms:
No symptoms. In remission for 21 months!!
Fighting My Way to Remission
I’ve been reading stories and questions on this website since I was diagnosed with UC about three years ago. So many people have questions, so I hope I can help someone by sharing my story.
My first year with UC was hell.
The bleeding and diarrhea were awful.
Prednisone helped to keep my symptoms at bay, but it also gave me mood swings and OCD. My doctor tried many different meds to get me off of the prednisone. Asacol exacerbated my symptoms, so I had to stop that after only 3 days. Colazol was very well-tolerated, but did absolutely nothing for me. Next was Lialda which helped to a degree, but I never achieved remission. My doctor then prescribed 6-MP, but that was of no use either.
My doctor started mentioning surgery, but I wasn’t willing to give up the fight. My health insurance approved me for Remicade infusions at 5mg per kg of weight. Unfortunately that didn’t seem to be working either. The dosage was increased to 10 mg per kg and I started to feel better after the first infusion. After the second, even better. Only trouble is that by the end of the eight week cycle, my body would start to rebel again. Then I started to read about probiotics, specifically, saccharomyces boulardii. I experimented with my daily dosage and was finally able to stabilize my condition for the entire eight weeks between infusions. I have been in complete remission for close to two years now.
During my last appointment with my doctor, he explained that he would like to keep me on Remicade for one more year. Sometime next year, he is going to cut my dosage in half. If all goes well, I may be Remicade free at some point after that. I know that the Remicade worked to a degree, but I am also a believer that the probiotic has played a part in my remission. There are even days that I forget I have UC. I’m no longer scared to go out to dinner with friends and family. No longer afraid to get on a two hour flight after a meal. It’s been a long battle, but I feel normal again. To all of those recently diagnosed: Don’t give up the fight! Find a good doctor that will work with you and fight with all of the will you can muster. I know what you’re going through and yes, UC can take it’s toll on you mentally and physically. Keep smiling and keep fighting!
Medications & Supplements that Are Helping My Colitis:
Currently on Remicade infusion therapy: 10 mg per kg
Also take saccharomyces boulardii
written by Steve R
submitted in the colitis venting area
47 year old male living in upstate NY. Diagnosed with UC about 3 years ago. Have been in remission for close to two years now.
Congrats Steve for finding your way and regaining control of your pipes! Love hearing stories like this. Please keep us posted how things go for you in the coming years, and wishing you nothing but the best however you continue to move forward,
-Adam
Wow…I love your story Steve!!
I too am in remission on a probiotic…not the exact one that you are taking, but I think that there is some of that strain in mine as well.
This is the wave of the future for treatment of UC as well as other autoimmune ‘diseases’. Our gut bacteria means EVERYTHING. I foresee diet, fecal transplants, and probiotics becoming the FIRST line of defense in treatment. Not the medications any more.
:)
Hi Steve, my son who is only 12 was diagnosed with UC back in March this year. He is on Apriso and Culturelle. Afew weeks ago he had a real flare wihi h I was scared to death. The doctor put him on Flagyl and a week later on Prednisone, which he is still on, decreasing the dosage every week. Since he has it in the entire colon, his doctor started to talk to us about Remicade, which I really did not wanted him to take, but am really considering it since he had the first flare in March and the second one end of August. Has it given you any side effects so far? How long have you been in it?
I have been reading the posts in Adams site about the different probiotics and L-Glutamine, but am not sure if they are recommended for children. Can anyone please give me some light as to UC in kids and what has been effective besides theseso strong medications?
Thanks
Ana
I have been readind the posts
Hi Ana,
I see no reason at all why a child could not take probiotics and L0glutamine…if anything, I don’t think that children should take the meds like remicade and prednisone.
Thant makes a whole lot of sense, right? The natural stuff that I named cannot hurt a human…the meds…well, they can.
Bev what have you been taking?
I see that many people mention your regimen. Which probiotics do you take?
Are you on any medication?
I take one ULTIMATE FLORA CRITICAL CARE probiotic capsule by RENEWLIFE (50 billion strain) first thing in the morning on an empty stomach and then no eating or drinking anything other than water for half an hour afterward. I take one scoop (included in the tub) of powdered fermented unflavored L-glutamine by North Coast Naturals in a bit of unsweetened juice, again on an empty stomach about 11 am…an hour before lunch.
With lunch, I take one 4mg astaxanthin capsule and 2-1000unit vitamin D tablets….both of these I take for inflammation, as they are natural anti inflammatories.
No, I am not on any meds!!
:)
Thank tou Bev. I just bought the probiotics. I am now on the search for l-glutamine.
You go girl!
Give these things time to work. UC does not develop overnight, however, it is not uncommon to see these natural good for the body things work quite quickly. They did for me…within a week! It can take longer, however.
I’ll be sending you good vibes!!
:)
Dear Ana,
My 13 year old daughter has been suffering with UC since she is a toddler. Her gastro was recommending stronger and stronger meds, all of which gave her very serious side effects, and failed to alleviate her symptoms. It was on this very website that I recall seeing something about “SCD”. In fact, I think it was a poll of some sort, and out of curiosity, I googled “SCD”. I bought the book, “Breaking the Vicious Cycle”, and jumped in head first within a few days. My daughter’s health has steadily improved since the very beginning of the diet and she is off all harsh UC meds that must wreak havoc on young children’s bodies. It has not been easy, and she is still not in what I would consider full remission after 10 months, but she went from extreme pain, nausea and diarrhea, 24/7 to very occasional abdominal pain and diarrhea, and we can almost always trace it back to a particular food. We have actually transitioned to a paleo, autoimmune protocol for her, as SCD allows dairy and legumes, and she does not tolerate either. She is also on probiotics and several other supplements based on deficiencies brought to light by her labs. We also did a stool test and discovered she had a systemic fungal infection, which once treated, has yielded even better healing. Try the diet. It is so worth it. I wish you and your son the best of luck.
Thank you Nancy for you reply. Which probiotics and supplement does she take?Pls help. Thanks
Dear Ana,
She takes ProbioMax Daily DF by Xymogen and Prescript-Assist Pro by Researched Nutritionals. If you’d like more info on other protocols she is following, feel free to write again. I know all too well a mother’s desperation in searching for help for her sick child.
Nancy
I just went today and found the ultimate flora 30 billion. I would appreciatenif you could tell me what else does she take. I am really desperate because the dr. Wants to put him on remicade. My appointment is tomorrow, and i really would like to know more before then. Thanks a million.
She also takes Vitamin D drops, pancreatic enzymes to aid digestion, several other supplements b/c she has the MTHFR genetic mutation (homozygous), and Diflucan for her fungal problems (determined by stool testing). My best advice to you is to get the BTVC book right away. Go to amazon.com and read the reviews. You’ll be convinced that the diet can help tremendously! It is worth all the cooking and hard work.
I just went today and found the ultimate flora 30 billion. What elsedoes she take?. My appointment is tomorrow, and i really would like to know more before then. Thanks a million.
Nancy, i am almost set up with all the foods and snacks for the diet. Although my son is not in a flare, and has no symptoms at all, do i still need to start with the introductory diet?
Thanks
I have tolerated Remicade very well. I also know a few people on Remicade and they also have had good experiences with it. There is a slight risk for cancer, but from what I’ve seen and heard from my doctor those risks are very small. The higher risks occur when you are treated with Remicade and another immune suppressor such as 6-MP.
Concerning the probiotics, talk to your son’s doctor. I believe the right doctor is critical to the treatment of UC. Some doctor’s have their patients on a dozen medications and never listen to their patient. My doctor has always worked with me and listened to me when it comes to medications and how I feel.
Hi Bev, i have a question for you:
I am getting prepares to put my son on the SCD Diet. Right niw i am shoppingnfor appropriate foods and snacks, and we almost set up. The question is: Right now he is not on a flare. Do I stillhave ti start him with the foodsnof the introductory diet?
Pls let me know. Thanks.
Hi Bev, i have a question for you:
I am getting prepared to put my son on the SCD Diet. Right now i am shopping for appropriate foods and snacks, and we are almost set up. The question is: Right now he is not on a flare. No symptoms at all. Do i still have to start with the introductory diet?
Thanks
Ana Paula
Hi Ana
I don’t know anything about the duet…can anyone help Ana with this question please?
Thank you. I thought you were on it.
No, I have never been on a colitis friendly diet…I wish I could help more in this regard!!
I too, am a believer of pro-biotics. SO many to chose from! Dosage? refrigerated? Not? Love to have some advise on this! Also, I’m a fan of sourkraut, Vit C, Aloe GEL (not juice)
I am about to order some of that probiotic as I have tried a generic one in the past but never looked for specific strains. I am currently on Colazol which might as well be a sugar pill. Just got done with a round of Canasa which seemed to help but every six days or so it seemed like it gave me a fit that resembled a stomach bug. Kind of at a cross roads of having to try a higher level medicine but would rather give the probiotic thing a try first. Thanks for your post.
Tim
I, too, was diagnosed with UC 3 years ago. I was first put on Asacol and then Lialda. After reading the many stories at this website and taking the advice of Bev, I had weaned myself off the meds and started taking a probiotic. I take Ultimate Flora 15 billion strain. I have been in remission since. I thank God (and, of course, Bev) for feeling NORMAL again!!! May you have continued good health Steve. God bless!
Natalie
Natalie how long have you been in remission?
Besides the probiotics(which one?) What else do you take?
Ana
You take 15 probiotic pills a day?
One capsule….15 billion strength…
Right Natalie?
Or 5 caplets 5x a day ?
There are soooo many of the probiotic you mentioned . Can you tell us the brand you use ?
I use Jarrow Formulas saccharomyces boulardii with MOS.
Why is Mesalomine not mentioned? I have had it put out the fire twice. I gave it a lot of help this time like 200 billion Ultimate Flora Probiotics for a week I think . I have tapered to 30 billion daily when I remember. I also used the the Saccharomyces Boulardi+MOS and Intestinew (mostly glutamine). The fire is out for about 2 months and I tapered off the Mesalomine.
I have poor records for eating, but I suspect eating too much Cruciferous veggies, a lot of fiber, 4-5 cups of coffee and 3-5 alcoholic drinks a day did me in. I am now capped at 3 coffees and 2 drinks. I am also eating Kimchi and Sauerkraut. Dr.Mercola (Mercola.com) says fermented Veggies are 100s to 1000s of times stronger than probiotic pills. So I will find out if that will keep me in remission. I am also planning a bit of Bromelain and glutamine daily.
Good luck to you all!
I am really glad that you are in remission, and have found something that works. My son was on Remicade and for a short period, it worked; until his body developed antibodies to it. He was on prednisone for quite a while, and was able to get off after several tries, now is just using Lialda. It is my understanding that if you stop taking remicade, you can’t go back on because your body develops an immunity to it. I completely understand your wanting to be off Remicade – it’s got some nasty long term side effects, but you should look into the possible consequences if you find that you need it again…
Hi Bev and Thomas!
I take 15 billion live cultures per capsule and take it once a day. So you are 100% correct Bev.
Thomas,
There are different strains of probiotics. You have to try out the different strains to see which one will agree with you. Once you find the one that agrees with you, take only 1 per day!!
BTW Thomas –
I do believe some people take 2 probiotics a day, but the majority of people take one a day.
Yes…every so often over the past few years I have taken one in the am and another in the pm, if I start to notice UC symptoms.
I have never heard of taking 15 probiotic pills per day though…:)
I was diagnosed with UC March 2014, I have been in remission since Mid July 2014. My advice for everyone is to forget all the posions the doctors are trying to force on you. My doctor gave me Uceris which caused me so much more discomfort and pain (like I wasn’t suffering enough) after only 1 dose I stopped taking it. Tried to talk to him about natural suppliments and probiotics; he said none of that stuff would work and he would end up taking my colon. Long story short, I take VSL#3, L-glutimine, licorice root and serrapeptase twice a day and am now wondering if I actually ever had Ulcerative Colitis????????? I did a lot of research to put together the combination I am taking. Seems like I was very lucky to gain remission so quickly.
FANTASTIC post Ann!!
This is proof positive that probiotics, diet, and other natural supplements actually work….and the meds DO NOT!!
Keep spreading the word. All of the upcoming newly diagnosed need not go through what us old time UCers have been thorough!!
@Bev is there an amount of strains you would recommend starting with? I see everything from 1 Billion to 50 billion. Thanks for your help and insight.
Not really, Tim. I never even thought about it….I started straight with the 50 billion strength and didn’t have any problems.
Hi Tim!
My GI doctor had given me some samples of VSL#3 while I was still taking Lialda. It had 112.5 live cultures in it and I had to disconitnue taking it. It is a high potency probiotic and I was experiencing stomach pains and bloating. That is when I tried Ultimate Flora….15 billion cultures and it works just fine. So, you just have to see which strain is good for you.
Okay…I know why this is…the Renewlife probiotics do not dissolve until they reack the colon as they are enteric coated…I believe that the probiotics that release in the stomach can cause upset and discomfort.
Always make sure that you take the enteric coated ones and/or the probiotics that do not dissolve until they reach the colon. I don’t think it’s how many billions strength wise the probiotic is, but rather, when and where it dissolves.
There’s the answer!
Hey Bev!
I guess Thomas is unfamiliar with probiotics. When I said I took the 15 billion strain, he just misundertood what I meant and thought I took 15 capsules per day! I think he understands now what I meant. I thank you for responding to his message as I wasn’t home at the time to answer. :-)
:)
Hi Bev!
The Ultimate FLora probiotic I take is not enteric coated and works just fine for me. Everyone’s systems are different, so people need to experiment to see what’s the best strain for them. What you say sounds logical though Bev! I will check with the Vitamin store I go to the next time I am in there.
I think that’s correct Natalie. Some people have no problems at all with the non enteric coated probiotics. You just have to find out if you are one of them!
:)
My daughter who is 13 has had uc since she was 8.she has been very sick lately. This past june she had a c-diff infection without taking antibiotics beforehand. Then around the first of july she was in the hospital with a severe flare up.She was in so much pain that she couldn, t walk at times.Now she has been in school for about 4 weeks and she is in pain all day at school. I don, t know what to do for her.She takes APRISO and Imuran, iron and vitamins. I worry every day for her. There has to be something that can help her to not be in so much pain. She sometimes is in the bathroom 8 times aday. We have a hard time going places because she never knows when she needs a bathroom , and also she can be in pain at any given moment. The dr told us that the next step for her would be surgery.
This is all so incredibly sad. Shirley…and it angers me as well.
We go into all this not knowing anything and trusting and believing in what the doctors tell us. It’s apparent that these HARSH drugs that have been prescribed to your daughter are not working. They actually don’t work on anyone at all, or not for long at least, if they work at all. I’ve been there, and it took me 15 long years to figure out that not only were the meds not helping, but were actually making me even more ill! The reason is because meds are not the way to treat UC. People with UC have over sensitive colons for whatever reason…too much antibiotic use, from taking other drugs like Accutane, from an intestinal illness…whatever the cause of the individual’s UC. Therefore, we all have to figure out (and let me say that…it ain’t easy) what triggers the flare ups and also what alleviates the symptoms. Regardless…it has to be treated the natural way…whether it be diet, probiotics, other supplements, olive oil, fecal transplants. Unfortunately every single one of us is different. It’s a lot easier to turn to doctors to help us, but alas, doctors have no good treatments for this condition.
THERE ARE NO KNOWN OR GOOD TREATMENTS FOR UC WITH CONVENTIONAL MEDICATIONS.
We really have to tackle it ourselves. I do not believe that surgery HAS to be the final result. Boy, that p***es me right off that doctors even go down that road at such a young patient’s age. I have also heard from people on this site, who have had their colons removed, that it often does not solve everything! Imagine that?! You have the surgery and you can STILL have problems. Ridiculous!
My advice…no more meds. Try diet, try probiotics, try fecal transplants. You will not be sorry…but you may be sorry if your daughter has her colon removed. There is no going back after that.
Just my two cents. I feel like there is going to be new more natural treatments coming in the near future. How can there not be, when the medical community can see what is happening…that the medications do not help and that they can cause other, more serious health issues. Some of them permanent.
Hello Bev, I love reading your comments and must say I agree with you 100%!! I was diagnosed with UC April 2012 and learned the hard way that meds help for a little. I have tried Pentasa, predisone and currently told to take imuran. My symptoms got worse when I stopped the predisone. In August I decided to be my own doctor and stopped taking imuran and lowered my dose of pentasa. Taking l-glutamin, same probiotic as you and also sacchromycee. I also have heavy Candida albicans found in my stool and have been treating that with candi gone by renew life and ever since my symptoms have improved drastically!! I truly now believe that diet and gut bacteria play a big role in UC and hope to be med free one day as well!!
Thanks for all the advice :)
Rose (Toronto, Canada)
Hi Shirley, my son is 11,and was diagnosed March this year. He is also on Apriso, 4 pills in the morning. He is on a round o Presnisone (almost done 5 mg for the next ten days) now. I started him on Ultimate Flora Probiotics 30 billion from Renewlife, i am also starting the Specific Carbohydrate Diet this weekend and about to start him on L-Glutamine. So far so good. Try a good
probiotics. This site has had many good reviews
on Ultimate Flora. Diet cant hurt. Buy the book
Breaking the Vicious Cycle, the information on it
makes so much sense. Good luck!
Bev, started reading and taking the supplements you have suggested. UC got me 34 years ago. I have tried 2 different times to go off Asacol. With no success. It must do something. I am noticing the side effects of it though. That is why I have been reading what other people are doing. I need to get a stronger probiotic I think . The one I am taking is only 7 billion. I read you take 2 with symptoms. I just started that. Thank you for sharing. Adam thank you for your site.
No problem! I want all of us to just be done with UC…and meds are NOT the way.
Remember…empty stomach and then nothing to eat or drink except good old H2o for at least half an hour after.
I love to hear all of that Rose!
May I please ask you,,,how did you find out about the candida…and were there symptoms? Like, did you have itchiness or anything? That may be something that I could add to my regimen. That Renewlife Candi Gone sounds great. I didn’t even know about that.
Cheers and thank you in advance.
:)
Thank you everyone for the insight on this post. I just placed an order for the following
Probiotic 25 Billion strains
Vitamin D
L Glutamine
Saccharomyces Boulardii
I’ll keep you posted on progress.
Tim
Go Tim!
Please remember to give it some time. The probiotic on an empty stomach…and no eating or drinking for half an hour afterward…except water of course!
Tim where did u find these products?
Hi Ana,
I am so sorry about your child and all that you are going through.
I agree with the others that you find an open minded GI doctor. I walked out of a first time appt with one GI and I am l gad I did. I wanted someone who is smart, open-minded and will to do some research. I don’t need friendly!
Please find someone who will do a fecal transplant – there is some good research on this if you look at the National Institiute of Health. I know it is exhausting to do your own reasearch and to be prepared to be your child’s best advocate.
I never go to a GI appointment alone anymore – I bring someone to take notes, and also give them a copy of questions I have so they can write down everything the doctor is saying. I have learned by reading all of my medical records since my first flare 3 years ago that some things were charted wrong, sometimes they did not give me all my test results, etc.
I have put together a notebook ( very large 3 ring binder) with every single test etc. in it. I dragged it into the ER last week ( terrible flare after a 20 days hospitalization just 16 days before) and prevented another chest x-ray, etc. There were the results in Black and White – no waiting on electronic records that they could not access quickly. I never leave the hospital without all of my records on paper ( they don”t like it but just call the Patient advocate – that person has the power to say yes).
Me: I am on way too many drugs right now . I got C. Dif and CMV in the hospital ( never tested positive for either before this).
As prescribed by my GI:
Vitamin D 50000
Ensure complete nutrition shake ( I know that there is some junk in it that I would never eat- but my GI told me that my colon looks like raw hamburger and that it will take 6 months to really heal. He said he really did not want me eating food at all- just the shakes. So – for the past several days I do 2 meals of shakes – but alas I am human – so I eat one small SCD meal per day with my family.) If anyone has a healthy alternative to Ensure PLEASE let me know.
Xarelto 15 mg ( anti cloting- because I had a PIC line for TPN ( nutrition ) while hospitalized…which caused a clot- so this med is for 3 months to prevent more clots and to “disolve” this one. Lovely!
AzaTHIOprine- 150 mg daily ( immuno supressant – nasty stuff)
Prednisone- 40 mg- on a long tapering schedule
Vancomycin 50mg- for the infections (stonger than Flagyl- the two teams of doctors could not agree on this – my GI won this battle.)
I recently started the SCDiet and VSL#3 probiotic ( thanks to Adam and all who have posted here).
So – I am taking meds that are fighting with each other. I was very close to losing my colon in the hospital – but asked the doctors to give me 24 more hours on their medication regimen – it worked. I know the meds are awful – but I needed it at that time. Now my job is to get as healthy as possible and find a way to reduce or get off the meds. For me it may be a combo.
My brother had colon cancer 17 years ago and has been “bagged” (his words) since. He is happy, healthy, got married and is scared for me . He told me to just get rid of the colon and live !
I am going to Mayo Clinic on Monday for another opinion and hoping to meet a forward thinking Doctor. They found that a person I know had a rare kidney problem. Once treated she was abe to use only one med to control her UC along with diet changes and probiotics! She hopes to get off that one med in the future.
My GI wants me on Remicade infusions (once the infections have cleared) with the AzaTHIOprine because I have neer been in remission in 3 years without steroids. This FREAKS me out.
Thanks to all who post for giving us hope, and special love to all the parents who are loving and supporting their children with UC and C. Go get a massage!
Joanne
Joanne, hos are you doing with the SCD diet. I staryed my son on it a few weeks ago, but i have had difficulties with breakfast and the lunch he needs to tKe to school. Have you made yoghurt? Pls let me know. I wish we all lived nearby. I bet one day would not be enough to talk.
Hi – I am making my own SCD yogurt. I bought Yogomet freeze dried starter and followed the SCD yogurt recipe. I put it in my oven which has a pilot light and is the perfect temp to make yogurt in a casserole dish.
I also used cheese cloth to make it thicker for certain dishes.
The hardest part is having family members join in with my diet. They think it is “weird” although I often eat chicken and certain veggies, along with some canned fruit. My doctor asked me to include a daily fresh banana and nutritional drinks ( two meals daily instead of food). I am still healing and weaning off Prednisone. but he thinks I will do better if I skip food two meals and just use Ensure Complete .
I have made SCD banana muffins with Almond flour ( I like it better than almond meal). The muffins look and taste like regular muffins – so your son could take that to school along with chicken and canned fruit.
I hope you have found things for your son to take to school- that could be very difficult. I would love to be in a support group in my town. i am thankful Adam put up this website!!
Hi Steve,
We’re in Upstate NY as well.
Have you posted a review about your Gastroenterologist/Gastro Group? My daughter is seen by two different practices– one local to us and the other several hours away, close to her college.
I’m always eager to hear what other patients are saying about the medical expertise of their practitioners!
I use Horizon Medical Group – Gastro Division. My doctor is Michael Finck. Fantastic doctor. Wouldn’t see anyone else.
I experienced my first flare 2 1/2 years ago, right after my son was born. Nothing could stop it–not Prednisone, not Asacol, not probiotics, not SCD–nothing. Remicade has been the only thing that has worked for me: I regained 35 pounds and am symptom-free, though I do have some minor unpleasant side effects (and worry a good deal about long-term effects). I hate taking it, but I believe that one day I’ll be able to get off it again (fingers crossed for FMT in the US for something other than c. diff.). On the other hand, I do think it’s a reasonable option when nothing else works. I have been on SCD for 2 years and have been 100% dedicated, but I really have no way of knowing whether it helps…it’s just one more tool in the kit. My sense is that, until we have a better and deeper understanding of the complex nature of these illnesses, holistic and sometimes contradictory approaches may sometimes achieve the best results. I’m all for folks finding whatever works best for them.
Regarding your diet, you can slowly introduce things back to judge effectiveness. Diet definitely helps moderate my symptoms while flaring, but I don’t think it is a cure. Level of symptoms probably determines what level of medicine makes sense.