understanding pouchitis

I am having these same questions as my recent visit with a new GI doc said to stop pentasa as I believe he said it only works in the small bowel???? The jpouch is the small bowel. I just do not understand this either. If we are dealing with small bowel bacteria overgrowth versus true inflammation, that may be why antibiotics seem to be the most effective. I think most doctors are reluctant to move towards prednisone as it is not a good maintenance drug and most of them have done this surgery to get patients off long term steriods and it would seem very counterproductive to go back to those med after colectomy. I also think in a surgeon's mind that means jpouch surgery was a failure if prednisone is again introduced.

The thing is that pouchitis is not a really return of IBD, at least not in most cases, even though it tends to occur in those with IBD, as opposed to those who had the surgery for other diagnoses. It also is not a single disease, but a spectrum of disorders all affecting the same organ with many possible causes.

In most cases, it is thought of more of an bacterial overgrowth or imbalance (dysbiosis) with an inflammatory response type of thing, and that is why antibiotics work and why for most of us, it generally is a short illness. It is also the rationale for probiotics for maintenance.

Those who get chronic or relapsing pouchitis might have a different type than those with the occasional bouts. Those people may actually have Crohn's, and in that case, all the UC meds might work, might not, just as variable as with a colon. If you had an indeterminate diagnosis, your risk is higher. There is also a theory that chronic pouchitis is yet another sub-type of IBD.

If antibiotics work, then it is appropriate to stick with them. If not, then you need to look at something else, and short term prednisone may be needed. More likely, topical steroids, like HC enemas or oral Entocort would be used. But, yes, it is correct that you do not want to use steroids long term unless it is a last resort.

For further reading (all authored or coauthored by Dr. Shen):
http://www.ncbi.nlm.nih.gov/pubmed/22796796

http://www.ncbi.nlm.nih.gov/pubmed/22508158

http://www.ncbi.nlm.nih.gov/pubmed/22513433

This is a full article-
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3134805/

Jan

Jan, thank you so much of the info. I am also having my 1st pouchitis. My takedown was 8 weeks ago. And it is so hard to be calm and think this too shall pass. I am scared of the antibiotic, I am scared of being a person who gets chronic pouchitis. I am finding this to be more painful then UC. I am finding relief by laying on my belly with a heating pad and just letting flow, I mean blow out of me.

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I am scared of being a person who gets chronic pouchitis

I have had chronic pouchitis for 17 years and I am not scared of me, and you should not be scared of me.

It's been treatable with rotating antibiotics. I learned that staying on one antibiotic for too long leads to problems. Fortunately, I seem to tolerate all antibiotics used to treat pouchitis very well, which is fortunate, because other treatments really do not work for me.

Jan gave a good explanation of what causes pouchitis. It is not really a recurrence of the IBD that led to your surgery but rather a DIFFERENT manifestation of autoimmune disorder, possibly due to the bacterial overgrowth in the pouch.

Strategies for treating pouchitis involve killing the bacteria (antibiotics) and preventing it from accumulating (dietary control of sugar intake to prevent bacterial growth; use of fiber supplements to aid smooth and complete evacuation of the pouch; use of probiotics to create a healthy level of "good bacteria").

In my case I have effectively controlled it for 17 years primarily through antibiotics, through diet and fiber and probiotic supplements. Despite all of this I sometimes get a little shaky when I rotate and when I do good ole Pepto Bismol, up to 16 tabs per day, bails me out.

My quality of life in those 17 years is superior to the 20 prior years I had with UC. I work as a full time attorney and have the same amount of bowel movements as normal pouchers as long as the pouchitis is under control.

I have come to learn that a big wild card in pouchitis treatment is the size, contours and shape of the pouch and how it drains and evacuates based on these factors. Many pouchers devlop prolapsed pouches, and I had 2 surgeries to correct a septum that developed in my pouch which led to uncontrollable pouchitis. Over the course of time it's been noted that there is an evacuation issue at my pouch inlet - stool is pooling above the inlet, causing inflammation above the pouch in my ileum. This has been observed since 2008, with no change, so not a surgical situation YET. As my surgeon said, pouches can be high maintainance "organs."

Overall I am doing OK but admittedly taking a lot of meds to do OK.

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CTBarrister

Thank you CTBarrister! You gave me back some hope. I am just tired. I think I have used up all my patience. The lack of sleep with continuous cramping and messing up my pants has worn on me. I do have a small stricture which could not be dialated in the office without me crying. So, hopefully with the antibiotics (fingers crossed, I am not allergic to these) and the stricture taken care of, this to shall pass.

I normally have the patience of Job. I have handled my near death experience with grace and positivity. I handled my second surgery pretty darn well too. I guess I wanted to believe I would finally get a break with this last surgery. I am not there yet.

New to this site!!Ok this is my third year with this pouch and it is my second bout of pouchitis. Last year I was given antibiotics and it cleared up great. This year they wanted to give me a medication that was a suppository that cost $650. I could not afford that so than they gave me asacol samples. I had an allergic reaction to this medication when I had UC. So the solution was to give it to me in enemas 3x daily. I don't think it helped my colitis. I actually think it made it worse. I do not want to take this medication again, so I am getting a second opinion. One of my biggest problems is that I am allergic to many antibiotics-sulfa, and penisillin. Just reading these posts has helped me feel not so alone and scared. I have been through so much. I can't even begin to describe the mess that happened during reversal surgeries. I'm eating probiotics and drinking fiber solutions hoping that will help the pouchitis.