Feeling tired of the symptoms

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 ❤️