Just had another accident in a public place. Of course, no one knew but me. Why is this happening? I went to doctor on Monday and he tried to do scope but it hurt too much....I couldn't do it. My butthole, literally, has felt swollen for a month and tender. The doctor said the skin around my butthole was super irriated.....I'm sure from constant bowel movements. Just so frustrated. My scope with anesthesia is on April 11th.....I just can't help to wonder if this happens to anyone else. Are accidents after having a jpouch for 17 years usually....pouchitis (I've never had), cuffitis, crohns, cancer. I'm sick of it. I'm in the parking lot, now headed home, to wash my clothes and take another shower.
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I’m sorry this happened to you. It’s a horrifying experience, and most of us here have lived through some version of it.
If it were me I’d try to persuade the doc to start a course of Cipro without delay. If he thinks there’s any chance this is infectious (e.g. C. diff, Giardia, whatever) then get a stool sample before starting the antibiotic. It’s important for you to get some relief promptly, if possible. It might not be pouchitis, but that’s my best guess.
When I have untreated pouchitis it feels like the pouch is twitchy and gets active when even a small amount of stool enters it. For me the hallmarks are incontinence (first at night, and later during the day, too), as well as cramping, frequency, and urgency.
I've had a pretty quiet jpouch so I don't have an actual gastro doctor.....just my surgeon guy that I just met on Monday. Do surgeons like him typically prescribe for anything or do I need a gastro doctor?
Surgeons vary a lot in terms of how much medical pouch care they provide - some are great, some are worthless, and many are in between. Most of the positive stories of surgeons providing care seem to involve patients they actually operated on. A surgeon is the doctor you have right now, so maybe that’s who to call first. Ask him if he’d prefer you see a gastroenterologist, and (if so) who he’d recommend. In most cases you’d be better off with a pouch-knowledgeable gastroenterologist. These can be scarce in some places, and there can be significant waits for an appointment. For example, my GI retired in December, and I scheduled a visit with the GI he recommended. The new doc was very nice, but didn’t feel comfortable managing my pouch (once I mentioned that I might need to switch to a biologic drug if my antibiotics fail). I’m now scheduled to see yet another GI next month.
IMO all J-pouchers should try to maintain an ongoing relationship with an appropriate gastroenterologist. Some of the toughest stories to read here involve people who unexpectedly need a doctor but don’t have one and can’t seem to get one in reasonable time.
Excellent advice @scottf.
i think surgeons are appropriate for post surgical care (several months at most)
then my GI from the crohns and colitis center at my university hospital took over. Since they have a large jpouch cohort in addition to whatever other GI stuff they handle I am receiving excellent care the last three years post surgery. I see them 3x year in the clinic/telehealth plus pouchoscopy. They are literally a email message away for help when something goes wrong with my pouch.
I feel it’s important to have an ongoing relationship with a GI you trust. Glad to hear you have a quiet pouch. Most of us here, and the reason we are here, our pouch’s seem to have ongoing issues.
I absolutely agree with everything you said.....100%. I definitely need a relationship with a gastro doctor, for sure. I will work on that tomorrow, for sure. And we are so lucky to have this support group to help us......so greatful to have you and others respond. Helps more than I can say ❤️