I’ve had my pouch for 20+ years with no complications. Recently started having frequency, urgency, tenesmus and the “texture” of my pouch contents went from semi formed to appearing like wet sand. Was diagnosed with Anal Stricture and pouchitis. Immediately following scope and stretching of stricture things returned to normal for about a week. Was on an antibiotic following procedure. After a week symptoms began to return. Went in for a second scope still showed pouchitis and stricture. Again immediately after procedure things seemed normal. Put on Cipro. After about a week, mild symptoms started back and now a month later tenesmus is getting bad again. Thoughts?
Replies sorted oldest to newest
You have to be careful that pouchitis does not get chronic. Have you tried probiotics after or better starting at the end of antibiotics procedure? It may help to restore your microbiome.
Budesonide (like Entocort) can calm down inflammation in the pouch area, perhaps it can help you to avoid taking antibiotics every few weeks. It is a topical cortisone.
My husband, whose guts are intact, says he gets tenesmus from gastritis. Just another variable to throw into the mix. I hope probiotics help. The extra special visbiome (advertised on this website) is supposed to make it all the way to the pouch without breaking down. I take normal probiotics all the time with my meals (fermented foods & the occasional supplement) but I take the visbiome when I start feeling like there might be some inflammation or irritation of the pouch. I don't take it all the time because it has dairy, I'm sensitive to cow milk products, and it's outlandishly expensive. I wish they had non-dairy visbiome!
I can’t tell from the description whether symptoms are coming back while still on an antibiotic or if they come back after the antibiotic has been stopped. In any case strictures often require multiple dilations before they stay open for an extended period, and that has to be handled before you can make much sense out of the pouchitis pattern
Symptoms started returning about a week after dilation even when on antibiotics. Now on day 2 of melsamine enemas with no real relief. What’s weird is immediately after dilation things were back to normal… but only for a week or so.
It sure sounds like your stricture may be tightening up pretty quickly after dilation. The good news is that your doctor is being gentle. The bad news is that you’ll probably be visiting that procedure room again.
As bad as it may seem, after a dilation, is there a way to periodically dilate yourself? I asked the gastro doctor which comes first the stricture or the pouchitis. He said pouchitis causes the stricture. I just know after the dilation there are immediate results. I’ve also tried to change my diet, Whole Foods, no sugar, will see if I can stick to it and if it helps! I appreciate your responses. Your experience and opinion have helped a lot of people on this forum!
Lots of people do self dilation, typically to maintain the opening rather than enlarge it. This only works for strictures at the bottom of the pouch (the outlet). Pouch inlet strictures require a medical professional.