Your pouchitis sounds similar to what I've been going through since February.Doctor is talking about Remicaid maybe in the near future.The last medication I tried before the colectomy was Imuran.I took it for 6 months,and I caught the flu bug twice in one month.It did nothing for my colitis. I noticed you are also from Colorado.Are you going to the University Hospital doc's in Denver? I am going to their G.I. clinic for the first time for my pouchitis,and would like to learn more about their G.I. program and doctors.

Hi- Thanks for writing back. I do live in Colorado, but I actually go to South Denver GI. I love my doctor! I did go to University for a consult. I thought the doctor I met with there was also great and he was on the same page as my GI. I saw Dr. Fennimore. I called and asked who does the most with J-Pouches at their clinic and they told me him and one other doctor (I can't remember his name). He took a lot of time with me and answered a lot of questions. At the end of the day, I didn't feel like his approach was any different than my doctor's, so I am still with South Denver GI.

So it sounds like you didn't notice any positive results from Imuran. I'm a little nervous about that. I work with a generally unhealthy population for my job and I am worried about getting sick all of the time. It sounds like that's what you experienced.

Good luck to you!! Keep me posted on how it goes at University.

Imuran is definitely contraindicated in pregnancy. They just shouldn't be mixed.

Amy, I can't tell from what you've written exactly what you mean by "struggled with pouchitis." It's clear that you get sick when you taper the antibiotics, but are you well when on them? Plenty of us have learned that we must stay on antibiotics, either rotating them every 2-3 weeks, or staying on one and "running it into the ground" over a couple of years. If antibiotics (even in combination) have stopped working for you then it makes sense to look for more aggressive alternatives (e.g. Imuran, pouch removal, whatever).

Also (just to make sure): are you using a strong probiotic (like VSL #3 DS)? Have you reduced all carbs in your diet?

I was prescribed Imuran back in the early 1990s to treat UC. This drug is an immunosuppressant and can effect your liver enzymes and chemistries. I had to be taken off Imuran after a month because blood tests (which you will have to take) showed that the drug made my liver chemistries go haywire.

Since the 1990s, my understanding is that 6MP has become the designer immunosuppressant that has largely replaced Imuran. If I were you I would ask your Doc why is he trying Imuran and not 6MP which to my understanding is a more designer version of Imuran with less side effects.

Mercaptopurine is also problematic in pregnancy: It's categorized as "Positive evidence of human fetal risk." It would only be warranted during pregnancy in serious or life-threatening situations.

Amy1 -Dr.Gerich is who I have the appointment with.I understand he and Dr. Fennimore are the two doc's. that see pouch patients. I'm over on the other side of the state 3 hours west of Denver,and my doctor is knowledgeable,I just don't have confidence because they don't do j pouch surgerys here.I used to go to Mayo in Arizona,but can't afford it right now.
CTBarrister -I too was on Imuran in the late 90's, but I don't recall having liver function checked.Maybe a good thing I didn't take it very long ! Never heard of 6MP. Good information to research,thanks.

I've also been wondering if it's possible to go back to a temporary diverting ileostomy for 3 or 4 months to give the pouch a chance to heal ? Has this been done,or is it not feasible ?

Techwrench,

As Scott F already alluded to, 6 MP is also known as Mercaptopurine. Basic info here:

http://en.wikipedia.org/wiki/Mercaptopurine

It used to be that when I got pouchitis I would feel better really quickly after a round of Cipro. As time has gone on, I've needed steroids to help too. What we've noticed is that if I try to taper the steroid even the smallest amount, I immediately get sick again. Also, I had been on Abx for about a month and when my doc did a pouchoscopy, I still had pretty bad pouchitis. The steroids are really helping but I can't be on them long term. There is concern with the long term side effects and if they will continue to work. I've been on them for six months and just tried to taper again a week ago. I started feeling really sick almost right away. I'm on VSL#3DS twice a day. I've been on that for several years. I have not cut carbs but I've heard some about that. I tend to eat a pretty structured diet anyway but cutting the carbs is something I could try!

Amy1,

Cutting carbs made a difference for me. Not a curative difference, but the inflammation went down in the scope I had the year after instituting the low carb diet. I was also able to reduce, although not eliminate, my antibiotic dosages.

I hope this is redundant, but be sure that a C. difficile infection has been ruled out. Also CMV. I get VERY suspicious when antibiotics seem to make pouchitis worse. I would want to be 100% sure before taking even more immune modulating/suppressing drugs. Immune suppression can be like throwing gasoline on a fire in those cases.

Jan

Jan, thank you for the post. I have recently had stool tests- Those were negative for c-diff. However, I had never heard of CMV so I just looked it up. I saw that pneumonia is sometimes a symptom. In April, I was hospitalized with complications from pneumonia. I completed one course of Abx and then it started to come back and I had to do another round of Abx. That may be something I bring up to my doctors. Also, just to clarify, I don't think the antibiotics are making it worse. It's just not solving the inflammation.

Good to hear C. diff was ruled out. CMV is not common, but is a known cause of antibiotic resistant pouchitis, especially in the immune compromised (budesonide).

Jan

Amy, I was in almost the exact same situation- wasn't responding to antibiotics and budesonide. My Gi suggested 6-mp (mercaptopurine, Immuran's close relative). I hesitated for months because of the pregnancy thing. But then I did some research on the topic and talked to my GI about it... And it turns out that the most recent data on these meds in pregnancy is pretty good. Here's a link to one recent meta-analysis:
http://www.ncbi.nlm.nih.gov/m/...inflammatory%20bowel
So, I started it about 6 months ago and wow, what a difference! I have my life back. I'm not sure if we'll be having more kids, but if we do I feel comfortable staying on the 6-MP. I haven't had major side effects. One thing, though, I never needed anything as strong as 6-mp when I had UC, so this is a first for me. (Colectomy was for an unrelated colon cancer; my UC was not nearly as bad as my pouchitis!)
Hope this helps.

I haven't been on these boards for awhile, but when I was on rotating antibiotics and Entocort and flaring every time I tried to wean the entocort, I ended up going on (well, adding) Immuran. I never took this with UC, because I had UC back in the 80s when it wasn't around. It takes a couple months to ramp up in your system, and I have been doing AMAZING on it. I got labs checked every month for the first year, now every 3 months. I am not trying to have kids so can't speak to that, but as to giving me my life back, it absolutely has. I don't know for how long it will keep working, but I like that if/when it quits, I still have the biologics in my back pocket as an option.

I hope you have found relief!

JJA-

I am interested in knowing why they put you on Imuran rather than 6MP, it's supposed designer replacement. Do you know why? The reason I ask is that I too am on the rotating antibiotics regimen and have been put on a course of Entocort which really helped, and my GIs have mentioned that biologics are the last line if the current treatment fails, without discussing which biologic would be best.

All information I have collected from others suggests that people with J Pouches needing to go to biologics due to the failure of antibiotics/Entocort (and other first line treatments) would be tried on 6MP or Remicade before Imuran, so I am wondering why Imuran first? I am also a proven fail on Imuran, going back to my days with UC as previously mentioned, but it failed due to my liver chemistries going nuts within weeks.

I don't really know. I see the Chair at Mayo Rochester, and that is what he suggested. Actually, he suggested I go right to Immuran PLUS a biologic, but I hated the idea of being "LOCKED IN" to a biologic if I didn't really need it. He said BOTH would be the best way to know if I had a chance of keeping my pouch. He thought the chances of Immuran working alone was slim, but said it was a reasonable, more conservative approach, and although it had less of a chance of working, if I felt more comfortable adding it alone, we could. I fully expected it NOT to work and that we would have to add a biologic, but then, for the first time in a couple years, my luck finally changed and it indeed DID work.

If we went the biologic route, he said it was really my choice if I wanted to try Remicade or Humira first.

I kind of thought Immuran and 6MP pretty much worked the same way. Like 1 was the straight up drug and the other was a precursor to the drug, but after it was metabolized by the body it looked like/worked like the other? I never asked why 1 and not the other. I was a little tired when I first started it, but I really have not had any side effects from it. SO far, so good...

Doc for sure wants me to ALSO stay on the antibiotics, too, and I guess since I have had no issues with them, who knows. I don't know to what level they are helping anything, to be honest, but eventually I would probably try to further wean the entocort. That was the plan, but after I dropped to 2/day the doc hasn't said to further wean, and since I am doing well I've been a little afraid to rock the boat. I probably miss taking the 2nd ENtocort a couple days per week as it is, so maybe a slow wean would be worth trying, but for now I am hesitant to mess with a good thing.

I was not aware that Imuran and a biologic can or should be taken together. All these drugs work by suppressing your immune system, and at some point it seems like it can be over-suppressed. My understanding is that 6MP was designed to replace Imuran and is supposedly a "designer" version of it with less potential side effects. A friend of mine who is taking 6MP for UC says it works well but he occasionally has fatigue. I heard the same from another friend taking Humira for RA and Crohn's.

My CCFA support group contains a number of younger people, in their 20s and 30s, taking Remicade for UC or Crohn's. They all seem to be doing well with it.

I think he said that the Immuran helped prevent you from building up antibodies to the biologic so that it would likely be more effective for longer?

I was worried about immunosuppression when I started it because if anyone got any kind of virus in my house, I would always guaranteed get it. Since I started Immuran 1.5 years ago I have not had a cold or caught a "bug" of any kind. And I shared a bed with my husband who had a doozy last year and have 2 kids who definitely don't wash their hands as often as they should! In my experience it is almost like before, when I when in constant pouchitis flare it was like my immune system was worn out from all that work attacking my own pouch, but on the Immuran it is like my immune system has been tamped down to "normal" and therefore I seem better able to fight off viruses, etc.

Just my experience and theory, but it seems to be working well for me, for now.

what are biologics you are talking about?

Biologics would be things like Remicade (IV) or Humira (injection), or maybe even simponi or cimzia (these are newer).

Stay away from Imuran it is a nasty drug. I was one it and it caused a lot of problems

JJA,
Not sure who the Dept Chair is now, but I saw Dr William Tremaine, who at the time was Dept Chair, and also Chair of the IBD Clinic at Mayo in Rochester, MN. I literally put my life in his hands. I was on Imuran and Remicade (neither had any good effect for me; had to have colectomy and j-pouch for my UC). The entire staff in Gastro at Mayo is very highly regarded. They will give you good advice, but as always you need to have a solid relationship with whomever you are seeing. best of Luck to you in seeing an improvement.

Mark

I had to take 6MP for the first time when I was diagnosed with having the CMV virus to get rid of it. Dr Shen at the Cleveland Clinic found it after a scope and I was told the cause of the CMV virus was because I was on Cimzia. From my what I know about CMV, it is a very bad virus to have. Fortunately for me, it had not entered my blood stream or there would have been some very serious consequences. Therefore, I am not a candidate for any Biologics type medications.
Jan, have you heard of any cases like this?