Blueflame,
How is that she thinks backwash is not possible? Did your J Pouch come with a backwash valve? Or does she think that it's not what is causing the ulcerated areas inside the pouch? Which would make sense because backwash only creates problems above the pouch.
Also, how far above the J Pouch inlet are/was the ulcerated and granulated areas?
CT,
I’m not clear why she says SIBO isn’t possible and she did not say I have a valve. I need to understand that better when I see her. The affected area was right above the pouch last year and this year. Inside the pouch is new this year and she says she’s certain the small bowel series will show more inflammation further up.
What you are describing is indicative of inflammation from backwash stool. If they find no inflammation further up, just right above the J Pouch inlet, there is pretty much no other explanation for it.
What you have described sounds exactly like what I have, with one difference: the inflammation inside the J Pouch has disappeared since I started taking Remicade.
Are you the only J Pouch patient of your doctor?
CT, no she’s quite experienced from what I can tell. She’s exceptionally resolute in her diagnoses and communications which is a bit of a challenge.
It sounds like the treatment she’s suggesting is the same as you are taking. She’s very brief so I don’t yet know if she would intend to include antibiotics with the biologic. I just know she’s saying this needs more than just antibiotics.
I’m to meet with her IBD team next week to discuss options. I’ve gone from not wanting meds because this just can’t be, to being willing to start with the Imuran route. I’d like to see how that and diet goes before biologics.
Imuran is a very different drug and my body rejected it almost immediately. It made my liver chemistries go haywire. I was tried on it back in the 1990s.
BlueFlame, good luck in the meeting with your IBD team next week and hope that you are equally resolute in asking questions and advocating a course of treatment for yourself. Hopefully this discussion armed you with some questions to ask.
Yes, very helpful CT. Thank you.
I am doing great with Imuran, including liver functions, and I even have fatty liver disease. Actually, I was on a variety of biologics for my arthritis until pouchitis became chronic. My GI suggested the combo of Imuran and Remicade as the one with the most data for pouchitis treatment. Of note, Imuran used with Remicade is a lower dose than when used alone. It helps prevent antibody formation against the Remicade.
Jan 
Interesting, Jan. Thank you. So complex. I’m glad you’ve found what works for you.
The status is clear as mud. Small bowel series results are now in and say chronic pouchitis. Does not say crohns, which is the new concern. I’ve left a message asking the doctor to clarify as her notes say to follow up as planned for IBD treatment. It’s not clear if Crohns is ruled out or not.
Received a reply. Crohns isn’t evident in bowel, but is in pouch. They’ll explain more when I go in Monday. That’s a big difference from chronic pouchitis in her first message. Really frustrated.
Well, you can either make yourself crazy trying prove or disprove a diagnosis and never get a clear answer, or you can accept chronic pouchitis as a diagnosis and just take it from there. Go with what works. Treatment is essentially the same based on signs and symptoms, regardless.
I know it does not seem very scientific, but sometimes there simply is no clear cut answer. Remember, you cannot completely rule out Crohn’s, as diagnostic certainties are often not present, at least not with today’s diagnostics. This is where the skill and knowledge base of your doctor comes into play. There is such a thing as Crohn's of the pouch, without other involvement.
Personally, I’d be pleased that my disease is confined to this small area (for now). Perhaps with effective treatment, it can stay that way.
Jan
Jan, are you saying chronic pouchitis may also be treated with biologics? I understand what you’re saying, but wouldn’t it make sense to take this in steps? I have had no treatment in years. Not even antibiotics. Why not start there, then go to imuran, then biologics if needed?
I’m not looking to take risks or be in denial. But I feel well, especially after getting back on my diet. Why not start with antibiotics, recheck and see how things are looking?
I agree in the take one step at a time approach. However, you need to be aggressive in treating chronic inflammation, and not dawdle if you are stagnating or regressing with any one treatment. If the antibiotics are not achieving success (and the proof will come in your scopes), you should go to the next step sooner rather than later.
I also agree with Jan on not getting caught up in diagnostic slowdowns. The diagnosis, as between pouchitis and Crohn's, does not matter for reasons that have already been stated. It's chronic inflammation, whatever you have is whatever you have, and it needs to be treated regardless of what it is called.
Blueflame, as I already mentioned, Remicade is a treatment for chronic pouchitis whether it's diagnosed as Chrohn's or not. It is a proven treatment of pouch inflammation. It eviscerated my pouch inflammation but not my neoterminal ileum inflammation. You gotta forget the words "pouchitis" and "Chrohn's" and instead use the words "chronic inflammation." What you call it beyond that simply does not matter.
I also do not understand when you say Crohn's in the pouch is a "big difference" from chronic pouchitis. It isn't. Both are treated the same. Both are species of chronic inflammation and cannot be allowed to go untreated. If you think chronic pouchitis left untreated cannot lead to something bad happening, you would be badly mistaken. The Cleveland Clinic study on rectal cuff cancer patients showed that many had severe pouchitis, some cases of which had not been properly treated.
I agree, it makes sense to opt for antibiotic treatment as a first option. But, if you are not symptomatic while having chronic inflammation, it is a little more tricky. Also, if your doctor is quite convinced this is more likely to be Crohn’s of the pouch, and not the ordinary run-of-the-mill pouchitis, a more aggressive approach may be considered. Hopefully, when you are at your next appointment, you will get the full details about your doctor’s plans. Make sure to ask all the questions you asked us. Protocols are changing all the time.
And yes, I am on biologics for chronic pouchitis. But, I did try antibiotics first. I became antibiotic dependant and was rotating three different antibiotics. Bottom line, my GI felt that the long term risks of chronic antibiotic use were worse than the risks of biologics. Plus, understand, I had already been on biologics for years for enteropathic arthritis. The main change was to Remicade and adding Imuran.
Jan
My doc explained and I am of the belief that there are different "causes" of "pouchitis" or inflammation of the pouch, and there are no easy diagnostic test to determine what the "cause" is. This is why docs will often cycle through the treatments in the pouchitis article I posted earlier in this thread first (and then biologics, which came along after the article was written), to see if you can get a good response. If chronic rotating antibiotics stop symptoms and clear up inflammation on scope, great-and probably not "IBD of the pouch or Crohns of the pouch" If it takes immuran and/or biologics to successfully treat, it is probably some ityoe of IBD-related root cause.
I was adamant when I started hearing "it may be crohns" because I was mainly worried that it might mean I was now susaceptibke to disease throughout my digestive system, and in 30 years there had never been signs of that. Any inflamation i have now is restricted to the pouch.i like to think of it as "IBD of the pouch". If someone asks, I say I have an inflammatory bowel disease. I don't say UC, and I don't say Crohns, and frankly, if you don't have a pouch "pouchitis" just prompts more questions. But ultimately what I call it doesn't matter because I have found a treatment that works (immuran plus rotating antibiotics) and if/when that stops working, I will start on one of the biologics.
If it is not clear cut crohns diagnosis, I see no reason why you couldn't start with rotating antibiotic treatment (maybe with budesonide-a designer, non-systemic steroid to jump start healing of inflammation), then if it doesn't work try something else or or if you start to feel uncomfortable with long term antibiotics and more comfortable with another treatment, go that route. BIOLOGICS as a first line treatment is not an unreasonable choice if it is what YOU want, but if you'd rather wait on that treatment and try other things first, there is no reason not to.
Thank you everyone, as always.
Met with the IBD team today and definitely taking steps back to sort this out more. More tests, etc.
One interesting thing is the doctor has been telling me there’s more inflammation this year compared to last. Today the IBD tesm told me less was seen this year and the inflammation leading into the pouch last year was not present this year.
Update and wondering thoughts before my next appointment:
Blood work shows folate and B12 in low normal range. CRP elevated. Prometheus result: pattern not consistent with IBD. Small bowel series indicates chronic pouchitis, less inflammation than last year and no inflammation just above the pouch this year (had some last year). Endoscopy showed a crohns like cobblestone patch with ulcer. Biopsy showed no granuloma or abnormal cells.
Original diagnosis of UC 32 years ago. J pouch for 27 years. Treated a few times for pouchitis.
With this possible crohns scare two months ago, I went hard core on bowel rest, followed by all organic and Whole Foods, alternative supplements, lots of water, no caffeine/alcohol/sugar/carbs and switched to some alternative foods to get rid of possible triggers. I’ve just added in B12 and folate by supplement and veggies; I had completely excluded this from my diet so I’m not inclined to think it’s an absorption issue.
I feel so much better physically. The symptoms I could “feel” before dietary changes felt like pouchitis. I don’t feel symptoms now. The fatigue is lifting and I think will continue to improve when I get back to exercise and the B12 and folate build up.
Sooooo, I’m wondering thoughts before this appointment as I think about questions to ask.
My thought is to continue my current course and ask to repeat tests in 6 months or so.
I’m also aware of the issues with the promethius test and find the results curious.....though I’m grateful for the overall picture.
My Prometheus test produced the exact same result. My GI didn’t believe it and told me he didn’t think the test was reliable at all. What would be more reliable is an MRI Enterography. As I mentioned my diagnosis is likely Crohn’s notwithstanding the above. But the correct diagnosis is actually irrelevant because it all boils down to whether you have a condition that needs to be treated. If so then the only important question is your response to the treatment.
I am with CT on this. You have plenty of info to point toward chronic pouchitis. The chronic inflammation likely led to the deficiencies. Prometheus results are a red herring and essentially meaningless. Diet may well keep you on track, but don’t rule out treatment in the future, or beat yourself up if diet does not work long term.
My B12 was also low and I responded very well to supllements. I only take it twice a week now and my numbers are quite high. My folate was always within range, though. My B1 and Vitamin D were also low. I always have eaten wide variety of foods.
Jan
