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DB
Hi everybody! Long time lurker, first time posting.

I had my takedown about 10 years ago and other than a few bumps in the road, have been fortunate with my J pouch. Until the last year that is. Have had recurring pouchitis, and during a recent scope, inflammation was found in my pouch as well as in my small intestine.  The spot in my small intestine was indeterminate, but could be indicative of Chron's.

My GI dr.  didn't explain what could be causing the inflammation there, other than Chron's and said I would need further testing. In the meantime, my mind is going crazy worrying that I have Chron's now. 

Also, during a recent gynecological surgery (which wasn't successful because of adhesions blocking everything), my surgeon said my pouch, and small intestine were extremely enflamed.  My GI dr could not explain this either!

Just wondering if anybody has experienced like this or has any advice on what else could be causing the inflammation?  TIA!

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Scott FScott FMember

If the inflammation is immediately before the pouch entrance it could easily be caused by backwash from the J-pouch. One simple way to assess this might be to try treating it as pouchitis (e.g. Cipro or Flagyl) and see if it gets better. Have you ever been treated for pouchitis? In any case, even if it seems to be Crohn's there are plenty of medications available to treat it, and things could be just fine anyway. A diagnosis isn't worth worrying about. Save your energy for any actual symptoms that have to be managed (or prevented).

Scott F
CTBarristerCTBarristerMember

I have had inflammation in my lower ileum since about 2007, and a J Pouch since 1992.  The inflammation could be Crohn's or it could be inflammation from backwash stool/SIBO since there is no valve at the J Pouch inlet that prevents backwash.  I have been living since 2007 with this situation and NOT worrying about Crohn's.  You have what you have, don't worry about naming it, worry about treating it.  My treatment has been rotating antibiotics and a low carb/low sugar diet and guess what? It works.  So I don't care if you call it Crohn's, Pouchitis North, Reddish Irregularly Ulcerated Neoterminal Ileum, lower ileumitis, SIBOitis, backwashitis, fecal stasisitis, or New IBD or Alien IBD.  Truthfully, it could be ANY of these things, but names don't matter, treatment does, and the treatment I have used works.  So I don't care any more about what it is, and my doctors don't either.  Because they are focused on proper treatment- as they should be.

 

Also, I have seen dozens of threads started basically saying the same thing as you: "they think I have Crohn's and the sky is falling."  It's actually become a pet peeve of mine because I don't think a lot of people are seeing good specialists if they are not being told about backwash stool and SIBO and the lack of valve at the pouch inlet.  If your Doc did not discuss the role of these factors in your condition, find a new specialist.  If you are in the NYC area I will tell you who you should see if you PM me.

CTBarrister
Last edited by CTBarrister
CTBarristerCTBarristerMember

Regarding the further testing, they will likely send you for an MRI Enterography although the capsule endoscopy and CT Enterography are also possibilities.  These tests are likely inconclusive as to diagnosis but they will enable your Docs to nail down where the inflammation is and what amount of swelling is being caused in the bowel walls.  The closer to the J Pouch inlet, the more likely SIBO and/or backwash stool are the culprits here; the further up the pipeline, the more it gravitates towards a conclusion of Crohn's.  If there is a narrowing or stricture at the J Pouch inlet (as in my case), that can also cause fecal stasis which will exacerbate the previously mentioned conditions.  But any time inflammation is seen above the pouch Docs will mention Crohn's being a possibility, probably for liability reasons more than for actually being accurate as to what you actually have. 

 

How far above the J Pouch is the inflammation, what is the length of the swath and does it look similar to ulcerations (if any) in the Pouch?

CTBarrister
Last edited by CTBarrister
DB Dawn BMember
Thank you for your responses! 

@CTBarrister  I  do not know many details on the biopsy location or size.   I found this out the day after I had surgery and to be honest, I was not very clear headed yet and did not ask a lot questions. I did ask what could be causing it besides  Chron's and he didn't give me an answer. I have never even heard of backwash or  SIBO.   He is a new Dr for me as my old one retired last year.  I was already thinking of trying somebody else, but I think this confirms it for me.  

I have tried  a couple rounds of Flagyl/cipro with canasa  to treat the pouchitis with varying degrees of success.   I feel better after reading this though. Thanks for talking me off the ledge gentlemen! ��
DB
B BlueFlameMember

Oh my, I can NOT begin to tell you how relieved I am to come across this post. I've not been around for a few years as after I discovered pouchitis, again through this forum, I responded beautifully to antibiotic treatment and the same diet as CTBarrister. I've only needed antibiotics a few times. 

I went in for a check after feeling symptoms, fully expecting to walk out with the usual minor pouchitis diagnosis and an Rx for antibiotics. Nope. I could have written Dawn B's original post here.

Going in Monday for the capsule endoscopy. However, with my doctor not telling me anything other than it's not pouchitis and wants to rule out Crohn's, I had no intention of "doing nothing" before Monday.

I've been off the diet for ages, high stress and no VSL3. Yeah, I know......

So, back on the diet and cutting out the stress. I also discovered a specific formulation of boswellia for various types of IBD. I've never been about alternatives or supplements, but I DO care if it's labeled Crohn's or shititis. I've been to battle enough and will not allow the doctor to try and put me on any new meds without us taking a step back. I really think I just need to get things back on track.

Soooooo, before my profile was approved, I had a lingering question. I am seeing very good results rapidly with the boswellia, diet and stress reduction, but still had that hot pepper sensation in the rectum. Sorry folks, but you get it.  My plumbing still isn't "my normal," but I'm going in the right direction. 

It may be I was just having ongoing irritation in the rectum from leakage. But this had me concerned as the doctor was only talking inflammation leading into the pouch and said it's not pouchitis......leaving the question, what do I do about the rectum? What is going on at the rectum? I finally took the anti diarrheal I also used to be religious about and I don't feel the burning anymore. The leakage has stopped.

My output is vastly reduced and mostly like water. But I do not feel dehydrated, nor backed up. In fact, the nausea I was feeling, despite good hydration, has ceased since starting the boswellia.

Maybe at this point there are no new answers until after the endoscopy, but if anyone has suggestions or thoughts, I'd love to hear them.

This board has been a life saver! Thanks in advance.

B
B BlueFlameMember

Well, I'll just add an update in case it's helpful to someone else. I was told I was having a camera endoscopy. Wrong. It was a barium small bowel serial X-ray. Anyway......Many days before the exam, I returned to my very strict NO carb NO sugar diet and added boswellia (new for me). All symptoms virtually vanished before Xray day. Five days later I went to my GI for results and got a completely clean bill of health. All symptoms were gone by then. I think the GI doctor was relieved. She probably thought I'd push for antibiotics because I was certain I needed them when I saw her about two weeks prior. 

The whole ball of wax was a pouch exam with biopsy after complaints of pouchitis like symptoms. No irregular cells were found in the biopsies. Only minor ulceration in the pouch with no mucus/not impressive to her/not pouchitis, and inflammation right above the pouch. The subsequent small intestine Xray showed nothing of particular interest by the time I had changed my diet. No Crohns. My GI was thrilled and said come back in a year for a pouch exam check up, unless I have repeat issues. YAY!

For what it's worth.....on the boswellia....two friends of mine are finding great success with it. One with IBS. The other with Crohns where she hasn't been able to get off injections she hates. If you look into this, be sure to get the formulation that is anti-inflammatory as apparently some forms are pro inflammatory. I think I mentioned previously that I've never been into alternative treatments and supplements. I always just took the pills I was told to take. But I'm looking at things differently after success. And I'll save the antibiotics for when and if needed to avoid building a resistance to them (as confirmed by GI).

 

B

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