I had my takedown at the Cleveland Clinic in November, so I’ve had a functioning j-pouch for about 3 months now. Here’s what’s up -- I’ve been experiencing some bleeding, some pain and an inability to empty in one sitting. I called my surgeon and made the journey back to Cleveland this week. She did an exam, then ordered a pouchoscopy and a more advanced sphincter test. The pouchoscopy showed mild, but “normal” inflammation of the transition area (reason for the occasional bleeding), but the sphincter test showed I may have some pelvic floor issues. I’ve now got an appointment next week to see their top therapist. I did a search on this site and found some info on pelvic floor dysfunction and therapy, but it’s mostly (if not all) from a woman’s perspective. Any guys been through this? Actually, if anyone has had success with it, I’d like to know. It’s a long way to Cleveland for me but there’s no one in my area who specializes the way they do.
I am male, 55 years of old, had my J Pouch surgery early August , 2017. I had 9 sessions of "Pelvic Floor Therapy" at Probility during the months of October through December, I did not get much benefit from this.
Thanks, Gold. I’m only doing the one session in Cleveland and really don’t know what will follow. It concerns me that the therapy was of little benefit to you. Were the therapists at Probility knowledgeable about a j-pouch and potential issues with the pelvic floor muscles? I doubt I’ll find anyone close to where I live in SW VA.
Yes, both the therapists were knowledgeable regarding J Pouch, they put me through series of exercises, did routine rectal exams, but, ultimately I did not see any benefits for me to continue.
Ask about receiving pelvic floor therapy from a local Physical Therapist. I was referred to a local PT who helped. I could be wrong but believe the therapy is for all kinds of pelvic floor dysfunction not just the j-pouch.
Will do, Te Marie, thanks for the advice!
I am seeing pelvic floor specialist in 2 weeks at Northwestern in Chicago, not any closer for you. Hoping she can help/ address my leakage issues- was referred by my surgeon who was at CC, recruited to Chicago, though he was not certain it would help,
I have heard from couple other people about PT that do help, and one even specializes in pelvic floor exercises for incontinence issues, and has been successful with it for many years. I’ll probably seek her out following dr. visit.
Good luck to you!
Thanks LJZ, just finished my therapy session at CC. Very interesting. I get it now that for over a year I didn’t use those muscles and I need to learn how to relax—both the pelvic floor muscles as well as overall! I’m going back to the gym next month and the therapist thinks that will be very beneficial— especially stretching legs, lower back and abdominals. Oh, and deep breathing exercises. I’ll try all this on my own back home and then figure out if I need to find a therapist locally. Hoping I can do on my own going forward.
Good to hear your visit at CC was positive! I too am thinking that getting back to gym/ classes to build core muscles may help as well as specific pelvic floor exercises. Maybe I’ll be motivated now, hearing specialist thinks may be beneficial. Good luck in your strengthening!
I saw a psychical therapist with exclusively works with the pelvic floor in Chicago until I moved away in 2016. She was great. Let me know if you want her info.
I am on my second jpouch for 2 years now, I experience some minor leakage sometimes. I always have a folded up square of tp shoved up against the hole to be safe. I occasionally have a small spot of leakage on the paper. I never feel it happening, and I have never had a full on accident, only at night sleeping if I eat right before bed. I was told it could be nerve damage from the many surgeries I have had or from the mucousectomy itself. Would pelvic floor therapy even help me? I had the mannometry test once I was hooked up and was told I have great function from those muscles, so that's why I am thinking its a nerve issue?
I still have my first pouch, but had the mucousectomy 1.5 years ago along with pouch advancement in a surgery where I expected he was going to redo the pouch, but didn’t think it was needed. Sphincter muscle also still appears to be fine. Will ask Pelvic Floor Disorder Dr. at appointment Monday if she thinks nerve damage is possibility. Sounds like your leakage not as bad as mine, but surgeon doesn’t think new pouch wouldn’t be any different, or any better because structurally mine is fine. Not feeling that way lately, even though I’m taking Xifaxin 3x a day. Gastro thought Xifaxin might help strengthen pouch and initially it did help. He’s also willing to try Cipro as a regular med, with hopes it might help. Not sure about that one.
I would appreciate that, it was a risk that was discussed with a pouch redo with mucousectomy. Like I said its minimal, I think some of the issue is my diet too though, but when I had my first pouch I didn't have a great diet and had zero leakage so that's why I think it may be nerve damage maybe. But like I said I can hold it as long as I have to and have never full out crapped myself, but get a small spot of leakage. I was scared during sex that I would have an accident , so always self conscious of it. I only had it a few times and been single for several months so no sex going on.. I know tmi