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Reply to "1 year out and not where I want to be"

Hi, Newdad. I joined this site last night just to answer your question. :-) I did pelvic floor pt before my pouch creation. My gyn prescribed it because I could not distinguish uterine cramping from uc cramping, but whichever it was, I needed it to improve. And my gyn and gi docs both thought pelvic floor pt could help. The short answer to whether it will work for you is: it might.

My therapist asked a lot of questions and did a battery of many tests, which surprised me (about a 2-hour appt). One was like biofeedback, where she put a little device (think tampon made of plastic) in my anus, and had me do a bunch of different exercises that were basically kegelling while I watched the strength of my muscles graphing on a screen realtime. Looking online, I think it's called rectal surface electromyography (SEMG)-assisted biofeedback. I'm a person who exercises nightly, but not always kegels. I had pretty good pelvic floor muscles. But, we discovered that when I'm in the relaxed position, I'm not really relaxed. I think with UC and a history very similar to yours, I had gotten to where my resting position was still contracting my sphincter. Which is pretty exhausting for any muscle. For me to relax my sphincter, I would feel almost like I was going to poop a little. She gave me exercises, which are a customized set of kegels for me that include relaxing my sphincter (is it sad that I have to practice relaxing? ha!).

On December 9, I had my jpouch created, which means rectum removed, and since then, my relaxed position is more normal. I'm doing my kegels regularly now that my surgeon cleared me at my jpouch followup. My hope is to have my pelvic floor ready for my closure on March 24 (especially after reading your post). I plan to see my pt specialist again before and after that surgery so I'm as prepared as I can be.

Did it help my pain? I'm not sure. I honestly think that removing my rectum helped my pain the most. I'm still getting moderate cramps, and maybe the kegels are helping those, because they used to be stop-in-your-tracks painful, and now they are just "is it time to take more advil yet?" painful.

So, pelvic floor therapy might help you, especially if there's something unexpected or subtle going on that you could improve with a few exercises. Idk if it will help you toilet less, unless the floor strength helps you retain stool in the pouch for longer. If you try it, I encourage you to find a *specialist* in pelvic floor therapy. Lots of general PTs offer pelvic floor therapy, but even my usual physical therapist told me to find a specialist because she herself saw a therapist for pelvic floor once, and that person just gave her kegel exercises, so not very useful. Look for someone who offers rectal surface electromyography (SEMG)-assisted biofeedback. Mine was at a teaching hospital and took months to get in to see her, but well worth the wait.

Hope this helps you...

...Kelley

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