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Hi all 

I am currently having various issues without being clear what exactly is causing mh symptoms and not getting anywhere with my doctor  I am hoping someone might have experienced something similar and be able to shed some light. 

In case its relevant, I have had a J pouch for 3 years after having an illostomy for 5 years following a severe UC flare. During my reversal I had a bad time of it with an emergency reversal of my ilostomy because of repeated bowl obstructions behing the closed stoma site(after stage 2 of the J pouch surgery). I had severe pouchitis straight after the 2nd Jpouch op. Over past 3 years I had pouchitis that would return every few months and was treated with Cipro on and off. 

Now i have chronic pouchitis it comes back every 3 weeks after coming off cioro and i go back on. My surgeon put me on the steroid Budesonide 3 weeks ago. When i asked why steroids and not continuous antibiotics he said that was the algorythm for resitstant poucitis. Is it just me or do I have antibiotic dependant pouchitis rather than resistant? Is anyone treated with steroids  for this?

On top of this my surgeon suspects mucosal prolapse. Mainly because as soon as I dont have pouchitis i get the opposite problem where I feel like i cant go/ empty my pouch properly and I am trying not to strain. I always feel like i need to go again. I also get lower andominal pain like i may be partially blocked. 

This week i have had abdominal pain that got worse and worse. I have no other pouchitis symptoms. So no diarrhea or urgency (which i normally do) and thick output. I also feel like my poch isnt filling or i cant feel it filling.My lower abdomen is swollen, sore to touch and hurts when i walk or move too much. I am having really trouble going to the toilet and it hurts in my abdomen when i do. I have been prescribed Cipro, does this sound like pouchitis? Or something else? I have been taking it for 3 days so far with no effect. 

Sorry for the essay I am lost as to what may be going on and hoping someone might have some ideas. Thanks very much. 









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I treated antibiotic dependent pouchitis for over 20 years before going on biologics (Remicade).  During those 20 years, I was on a rotating cadre of antibiotics that included cipro, flagyl, levacquin, keflex, augmentin, xifaxin, and some others.  Towards the end of those 20 years, I gradually worsened and with a strictured area at the J Pouch inlet due to backsplash stool. Because the stricture was concerning, I was put on Entocort (Budesonide) as well as the antibiotics.  in your case, it's my guess they want to try Budesonide in isolation first to see how it works on its own; depending on efficacy, antibiotics can be added back.  They attempted VSL#3 in isolation with me as well, without any benefit whatsoever.  By the time Entocort was tried, it was at a stage of "we ain't fooling around with this no more."

Although your pouchitis may be antibiotic-dependent, these other treatments could conceivably work on their own, and nothing ventured, nothing gained.  If they do not, or they don't completely improve the situation, antibiotics can be added back.

In my case, these treatments were never completely effective in clearing up the pouchitis I had.  They alleviated some of the symptoms, but my annual scopes showed very persistent chronic inflammation in the pouch.

In 2015 I went on Remicade, and it cleared up my pouchitis and eventually I was able to wean completely OFF antibiotics for the first time in almost 25 years.  Although the Remicade has greatly improved the inflammation in the pouch, it did not completely clear up the inflammation due to backsplash stool at the J Pouch inlet.  Since being on Remicade, I have had almost no flares except very occasionally towards the end of a Remicade cycle. For this reason my cycle of infusions was reduced from 8 to 6 weeks and since then no flares at all.

I think you are eventually headed towards biologics as well.  You are not there yet though.  Good luck.

Last edited by CTBarrister

Lorna, my understanding of (antibiotic) resistant pouchitis is that it means that the pouchitis doesn’t improve with antibiotic treatment. That might indeed be treated with budesonide, though I’d probably choose to try a biologic medication over long-term steroid use. You have, however, described, I think, the opposite of that: pouchitis that improves with antibiotic treatment, but returns when the antibiotics are discontinued. That’s normally called chronic pouchitis, or more specifically antibiotic-dependent pouchitis. That’s normally treated with long-term antibiotics, rotating among several different ones, if possible. You might need to look for a different doctor, unless you can have the right conversation with this one.

If your backups and pain are associated with thicker stool then there are simpler explanations than prolapse to consider first. Perhaps the thicker stool gets backed up behind a narrowed part of your gut. The key question is whether thinning the stool fixes the problem. Since antibiotics tend to thicken the stool, this can take some patience. If you treat this pain as though it’s a partial blockage (which it may be), you could try varying degrees of things like increasing water intake and limiting solid foods until the stool consistency loosens up. Even soluble fiber (like psyllium) can help maintain a softer stool consistency, though I’d be careful with it in the middle of what might be a blockage.

Hi both, that is really helpful.

Scott that is pretty much the conversation I have had woth my doctor and what worries me is he didn't even seem to be aware there is a difference so i think i do need to get another opinion. 

I think the bit i am confused about is when i have the pain low in my abdomen could this still be pouchitis? Or is it maybe caused by the thinkened stool/ a partial blockage etc so a separate issue to the pouchitis? If i no longer have frequent bowel movements and urgency but still paincould it still be pouchitis. 

CT barrister what made you eventually go to biologics, was that when the antibiotics stopped working? 

Over the last 4 months I have felt stuck back in my UC days which is scary, but the big difference being that I dont feel like my doctor has a great understanding this time round! 


Thanks again! 




@lorna posted:

Hi CT barrister what made you eventually go to biologics, was that when the antibiotics stopped working? 

The answer to this question is somewhat complicated.  Back in 2008, my then GI doctor, Dr. Oikonnomou at Yale, a Cleveland Clinic trained and mentored protege of the world famous pouch specialist Dr. Bo Shen, conducted a series of tests on me because my scopes revealed that I had significant inflammation at the J Pouch inlet and also in the neoterminal ileum.  The purposes of the testing which included CT Enterography, MRI Enterography and Prometheus, was to determine if I was a Crohn's diagnosis because the pattern of inflammation in the neoterminal ileum was not readily identifiable as being due to backsplash stool, and to identify the specific areas of inflammation in the ileum. All testing was inconclusive; the Prometheus came back negative for Crohn's and UC despite obvious inflammation in the rectal cuff, the pouch and neoterminal ileum.

At that time- maybe 2009- Dr. O had strongly suggested I consider biologics.  I resisted this, and the chief reason I resisted this is that my scopes were worse than my symptoms actually were.  My symptoms were actually manageable with antibiotics, but he did not like my scopes.

Fast forward to 2015.  In the intervening 6 years, Dr. O- who was great, BTW, one of 3 great GI docs I was blessed to have- continued to recommend I go on biologics.  I continued to resist for the above mentioned reasons.  In early 2015, Dr. O sent me a letter advising that he had accepted a position at Mount Sinai and would be leaving Yale.  I then switched to a new GI, Dr. Myron Brand, a seasoned and excellent GI doc who was no stranger to pouches and he came highly recommended by people in my CCFA support group at the time.

Dr. Brand did one scope on me and strongly recommended that in his view, antibiotics, while addressing my symptoms satisfactorily, was not getting the job done on the inflammation.  At this point, after looking at the scope pics, hearing his reasoning, and his articulation of the results of Remicade on pouch patients from clinical trials, I agreed to go on Remicade.

Right at this time, however, in June 2015, I was diagnosed with thyroid cancer and had to have surgery for it.  This delayed me going on Remicade by 6 months, because of the surgery/radiation I had to have to treat the cancer, which was ultimately successful.  You can't do that stuff and take biologics.

In November 2015, I finally went on Remicade, and by the time of my next scope in June or July of 2016, I was showing significant improvement in terms of the inflammation in the pouch.  After that I have not looked back, and I was eventually able to wean off antibiotics completely.  

So that is basically the story.

Last edited by CTBarrister

Hello Lorna

I have had my J pouch for 2 1/2 years now.  For the last 6 weeks, I am experiencing exactly what you are experiencing.  I could have written the same account.  I have had pouchitis and this is not it.  I can corroborate that by stating that 3 weeks ago I had a pouchoscopy by my surgeon and he said there was no problem; no inflammation etc.  My symptoms are more like what you said ie. Heavy feeling very low as though something is prolapsing.  I have low abdominal pain and cramping, but almost more like menstrual cramps.  (I am 64 and do not have that anymore).  My BMs are good bulkier semi formed; in fact fewer than my normal of 5 to 9.  Today was 3.  (Certainly cuts down on anal burning).

To me, a pouchoscopy is not reflective of gravity or bearing down. I feel the doctors should do a secondary exam with the patient standing to determine position of J pouch or, for a woman, even uterus to assess for prolapse. I hate the feeling every day. Different than anything prior and worse by the end of each day. 

Anyways, my 2 cents Lorna.  Best of luck.

I am sorry to hear about your suffering!! I think you should seek another gastro's help and go from there. I think you should also suggest biologic treamtent to the doctor as well. In your case, I think biologics will help you tremendously! Never be afraid to suggest stuff to doctors, I have suggested many things to doctors in my 28 years of living on this Earth and I have accomplished quite a bit medically. I hope everything will be well with you and I hope you get better

Not to worry Lauren.  I am very pushy for my medical care. I worked for a doctor for 35 years and am well versed in medical lingo, and, in particular, my personal medical journey.  I worked for a rheumatologist who had patients with a variety of autoimmune disease on biologics.  I was adamant and still am that I will not risk the side effect profile (lymphoma and other).  My opinion is largely colored by others experiences and my own research. If the time comes where my quality of life becomes unbearable, I will look at that again. Thanks Lauren.

Hi GEB56

I don't know if I can help shed some light for you too but I underwent a proctogram where you mimic going to the bathroom under xray and it showed an obstructive evacuation of the pouch with a small rectocoele and intrapouch intussuseption. I have an appointment with a new surgeon at the end of the month to discuss. What I can gather from a brief conversation is my pouch is tilting and my intestine is bearing down and squashing the pouch and I have a small prolapse into the vaginal wall... I think.

All very uncommon supposedly which doesnt make me feel too much better. It does explain my symptoms and in hindsight I think I get 2 sets of symptoms, those related to the obstructive evacuation and I think I get low grade pouchitis also - the more normal urgency symptoms!

Hopefully I will get some idea of treatment on the 29th!

Hope that helps shed some light.

Thank you Lorna.  I hope everything goes well with the new surgeon.  If you would like to share further, I would certainly be interested in your final diagnosis(es) and proposed treatment protocol.  I wish you all the best with your out of the ordinary issues.  I guess we all have unique happenings.  I now have a pelvic ultrasound booked to evaluate possible prolapse of the uterus which could be affecting the J pouch. Your situation does sound similar, as I mentioned.  All the best Lorna.

@GEB56 posted:

Not to worry Lauren.  I am very pushy for my medical care. I worked for a doctor for 35 years and am well versed in medical lingo, and, in particular, my personal medical journey.  I worked for a rheumatologist who had patients with a variety of autoimmune disease on biologics.  I was adamant and still am that I will not risk the side effect profile (lymphoma and other).  My opinion is largely colored by others experiences and my own research. If the time comes where my quality of life becomes unbearable, I will look at that again. Thanks Lauren.

Oh good, I see you are pretty experienced at being very adamant, a lot of people need more of that nowadays. I am glad you are well taken care of! And you are entirely welcome!

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