Hi everyone, I’ve read stories on the site for years but haven’t posted until now. I was diagnosed with UC when I was 20 and it progressed enough that I had a j-pouch formed in 2013. I’ve had chronic pouchitis and difficulty emptying my bowels completely for most of that time. Additionally I feel pain near my rectum when emptying my bowels. In July I finally decided to see Dr. Bo Shen and he diagnosed me with both a prolapsed pouch and what he called a floppy pouch. I went in for biofeedback treatments recently and couldn’t last more than a few seconds because of excruciating pain (the likes of which I hadn’t felt since having UC). Dr. Shen initially said that the treatments are my best hope to get better but I know my body and this level of pain doesn’t feel normal at all. For those who have gone through the biofeedback, was your experience this painful? And is there something I should say to the doctor or his nurse to check for an additional issue?
I had prolapse but no pain other than rectal irritation and incomplete emptying. Please see some of my suggestions to people in other areas of this forum as well. I’m wondering where your pain might be. Is it burning and itching or bending over cramps? I can tell you that if it is pouch irritation rectal burn use Calmoseptine cream on clean skin. Take warm water enemas (get rid of what’s in them and fill with warm water) insert while sitting on toilet to help flush irritants and help help empty pouch. I cant see where biofeedback would work. My guess is it’s part of the prolapse issue and needs addressed by a DIFFERENT gastroenterologist. Stick to GI surgeons or Those that specialize in the condition. Never heard Biofeedback mentioned in all my 20 years. They may suggest you having a follow up sigmoid or defacography to really be able to see what’s causing the pain.
Thank you for the feedback. I actually do use calmoseptine for burning and it helps very much. Unfortunately that’s not the issue. I made a mistake in my initial post - in addition to the prolapse, I have a paradoxical pouch (that’s what Dr. Shen called it) where my rectum squeezes when I have to go to the bathroom so not much comes out. That’s what the biofeedback was for. But the pain is an inch or two inside my pouch and was directly where the biofeedback was targeting. I hope the clarification makes more sense.
Sam, I wonder if you’ve developed a second problem. You might have developed an anal fissure *because* of the excessive sphincter contraction. If that’s the case you’ll probably have to get the fissure healed before you’ll be able to tolerate the biofeedback. If I were in your shoes (and confirmed a fissure) I’d consider Botox injections (in addition to the other measures to comfort a fissure, like sitz baths). They are normally not the first choice for anal fissures, and sometimes it’s hard to get the right amount of Botox (and resulting sphincter relaxation), but Botox *might* temporarily help with both problems (the paradoxical sphincter and the hypothetical fissure). I don’t think the biofeedback would work until the Botox had worn off, though.
All this might be off-target, but if it seems plausible then it might be worth asking Dr. Shen what he thinks. Good luck!
Thanks Scott, I really appreciated it. I’m also assuming there’s a second issue going on but I didn’t have an inkling on what it might be. I’ve had fissures before and it does make sense that this could be one, albeit in a bad spot. Luckily I’m talking to Dr. Shen on Thursday (and even more luckily I live in NYC) so I’ll ask if he thinks that could be it.