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I feel like I've brought this a few times to this forum as I don't have a clear understanding of what pouchitis actually looks like/feels like.

  • I have no change in stool consistency,
  • I don't feel unwell,
  • no fever,
  • no change in cramping.

But there's definitely an increase in frequency as well as pain when the stool is hitting the anus. It's relieved when I empty. There is no pain during the movement (eg fissure). Also, there is discomfort just above the anus at times. Not pain but just noticeably different . (No abscess)

I'm not keen on trying antibiotics if it's not the issue. It's been about a week like this. Any thoughts would be appreciated.

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There’s a bit of a chicken/egg puzzle to untangle here. One key question is exactly where the pain is. I think no two people on this site use the word “anus” in the same way. If your pain is at or near the anal verge (the point at which stool exits) then it could 1) be caused by increased frequency and wiping, or 2) cause you to stop before you’ve emptied fully, resulting in increased frequency. If I’ve located the pain incorrectly perhaps you could clarify.

Just in case you mean a feeling of slight pressure or dumb pain from inside when the pouch is not empty - that might be cuffitits, an inflammation of the rectum cuff. For me the feeling that I have to go to the toilet starts much earlier than usual with cuffitis and it is more urgent, thus increasing frequency. Antibiotics or budesonide may help in that case, or you have a proctoscopy done to clarify.

You would have to visit a proctologist (or a GI doctor) to confirm cuffitis. For me with chronic pouchitis there was always a sharp border between normal skin of the anal canal and inflammation starting at the anastomosis of the rectum cuff.

As Scott said, mesalamine suppositories are also an option, especially if you had positive results with mesalamine in the past.

Oral budesonide (like Entocort) takes effect in the pouch region, it can soothe inflammation there. I've been taking it for many years.

I was diagnosed with cuffititis at my first pouchoscopy. First visually, then confirmed with the biopsies taken.

I am currently taking Canasa suppositories daily.

I no longer have urgency nor any blood.  I do not know yet what the long term plan is.

I always thought I had early onset of pouchitis, but I never figured that the rectal cuff could cause my issues.

Like jhendrix  I still don’t have a clear picture of what pouchitis feels like as opposed to cuffitis or IPS.

what I will say is that 1 year post takedown, I have  settled down into a my new normal routine with pretty much  only good days now.

Last edited by New577

The frequency and urgency have continued as has the discomfort (sometimes big pain) when there is stool in the pouch although there often isn't much  when I empty. It reminds me of colitis but the stool is not watery.  I'm have difficulty describing it, but there's a sense of swelling towards the tailbone but not as high. (I can't palpate anything from the outside) Just an odd feeling.

I have hydrocortisone suppositories that I've decided to try although it may be a dumb idea. So far they just burn but it's only been one day.  If there is inflammation in the rectal cuff, I'm hoping the suppository might help(?!)

I'm hesitant to call my doctor as it's very difficult to get in to see him and I'm not sure I'd any much sense if I did. I know my description is a not very helpful. Bordering on loopy!

In working though the differential diagnosis another consideration in addition to cuffitis and pouchitis is mucosal prolapse. It can occur at different parts of the pouch and can interfere with evacuation, causing more frequency, incomplete emptying, painful evacuation, spasm, etc.  It is said to be more common in tall, thin people without much abdominal wall fat.  Diagnosed with barium defecogram and can be treated by specialists with endoscopic procedures.

Interesting. Something else to consider. I had a diverting ileostomy for about a year and a half and, just prior to getting that, I had a small mucosal prolapse. I was very concerned that it would still be there once the j pouch was reattached but it wasn't, thankfully. I guess I'd better make that doctor's appointment. (I am not really considered 'tall and thin' but I don't have much belly fat!)

Thanks for all of the input to help me sort this out.

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