I am hoping someone on here has had bands for pouch prolapses. I saw Dr Bo Shen two weeks ago and he was great. I had a minor stricture that he removed but he found that I have prolapses at the inlet of my pouch and at the base. It was interesting to find this out because he thinks it explains why I have a fistula but didn't have j pouch inflammation for years. He recommended manometry (came out fine) a defecography barium study and thinks I need bands to treat the prolapses. Has anyone had this procedure? I am trying to schedule it now and I would like to talk to him or the nurse about it but its complicated to talk to his office because of the holidays. I need to travel to NYC to see him and I want to know how long I can expect to be there/what shape I will be in. I need to bring my husband but we both have jobs and a young child. The stricture removal was pretty easy and the bowel prep was far worse than the recovery.
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Sorry I have no information to help you. But I hope your health gets improved this year. Let us know how the procedure and recovery goes.
A friend on the jpouch FB page needs this procedure as well. He was seeing Shen right before he left Cleveland, and nobody knows how to do this procedure.. He was told Dr Shen is the only one that does this procedure.. do the prolapses cause you issues?
Some. They don't cause issues as long as my pouch is happy but I think it causes blockages when I have any inflammation or irritation in my pouch. My other GI couldn't figure out why I was complaining that I literally couldn't empty my pouch when I had a flare up and required prednisone. I think the prolapses cause some sort of feedback loop where a food/illness bothers me and makes me go to the bathroom more/strain some, which causes the prolapse to get inflamed, which causes me to strain more, and on and on until I ended up with a fistula and sometimes bad enough inflammation to require prednisone.
Dr Shen seems to think I have prolapses not Crohns in my pouch that caused the fistula and the pouch inflammation. It explains my lack of symptoms for years and the fact that the rest of my intestines always look really good. That said Remicade works on me too but I want the fistula gone and I would love to not take any medication again!!!
Have you had the band procedure yet? I think I’m having same issues .
Not yet. I am scheduled for the second week of February. I'll update everyone after I hear more about what to expect and go through the procedure I am nervous because I feel mostly OK and I am afraid of messing with that but at the same time it could be a massive long term improvement in my health!
So I haven't had the bands yet but I did get to talk to Dr Shen's nurse who is awesome. She explained the procedure and risks to me. The procedure is fully an endoscopic outpatient procedure with sedation. They inject glucose (?) to lift parts of the prolapsed area and then use use small bands to pinch off patches and deprive them of blood flow. This causes scarring that actually supports the pouch and prevents it from collapsing. Dr Shen determines what areas to target based on a barium defecography study he will order before the procedure. The bands come off hours or at most a day or so later. There should be no pain but you can feel a pulling sensation sometimes if the bands stay in place longer. If they stay in place longer they can also lead to some bleeding and tissue coming out but it should never be severe bleeding that continues. The risks are much lower than for needle knife stricture cutting and you can travel after about a day. You can also eat normally assuming he didn't have to cut any strictures while he was in your pouch Apparently the effects should be noticeable within a few days and they will repeat the procedure to get the level of improvement you need assuming the first procedure helps.
He usually combines it with biofeedback. My manometry looked good (I thought) but apparently it is off and he wants me to do several sessions. Has anyone done it and had it covered by insurance? This seems to be something that may or may not be covered and I am not thrilled at the prospect of not knowing it will be covered UNTIL after the sessions....
I'm hoping to see some updates from the folks who have had the bands and the biofeedback. I'm scheduled for the bands and I'd like to know more of what to expect.
Is the pouchoscopy to put in the bands any different than a regular one in terms of how you feel afterward?
I will be in a car afterward (passenger, of course) for an hour and a half to get home. I'm also so supposed to work (sedentary, from home) the next day.
If the bands work, it sounds like you repeat the whole thing to have it done again. So, I guess I'm looking at a bunch of pouchoscopies (and prep and trips to NYC) -- right? I forgot to ask how many.
Thanks for all the info here. Nice to feel I'm not alone.
I would say the pouchoscopy is similar to a normal one. Maybe even milder because there is less concern about visibility. I had a terrible experience with the emptying study across the city and wasn't able to do ANY prep (other than not eating) before my first banding and Dr Shen didn't care at all. I think you will be fine in a car. You might be uncomfortable and groggy but not miserable.
Depending on your work, you will probably be fine. Don't plan on anything mentally taxing. I felt well enough to spend the day doing touristy stuff with my husband and daughter but I completely forgot my phone number (that I have had for 15 years) when I tried to get my backpack out of a coat check... You don't realize that you are impaired until things like that happen lol.
Thinking back, I think I felt a lot better 2-3 days after each banding and MUCH better 2-3 days after my second procedure. I had two banding procedures. I am not sure how many Dr Shen will do. Maybe 3-4 max. I had constant trouble before the banding and now I never have severe problems. I am very careful to never strain and use a catheter like Dr Shen told me to whenever I am feeling off.
Thank you so much for posting about your experience with banding! That is so helpful and reassuring.
I'm not in bad shape -- it just takes me a little bit of moving around to empty -- but that horrible barium defa-whatever study showed that I wasn't emptying anywhere near as much or as easily as I thought. I guess after having colitis, I really don't mind a little inconvenience.
I could live just fine like this, but Dr. Shen says it's dangerous to leave it because it can lead to ulcers and worse.
Thanks again for your response. I'm going to stop worrying now.