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Hi everyone

I have had a perfect jpouch for 15 years due to uc.
2 years ago I developed a stricture  at the outgoing anastomosis. It had been dilated a number if times and with each scope I had ulceration that was getting progressively worse. Until then each scope revealed a healthy pouch with zero inflammation and ulceration.
I had been treated with flagyl and the rifaxamin and my gi told me that the next drug would be biologics. I had been saying this whole time it felt structuaral.
so I get an appointment with dr Bo Shen who suggested  that it was pouch prolapse ( super rare) this happens in 0.3 % of pouches.  Tests confirm his theory and now I know it’s a structural issue that needs to be resolved . He suggests I travel to USA to have him treat it. ( I live in Australia) has anyone experiences this? Has anyone used Dr Shen for procedures?
thanks so much

Last edited by Rachel1
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If you use the search function in the menu on the upper left of this site and enter  "banding" you'll find a number of posts about it from people, including me, who've had this procedure that Dr Shen uses to treat mucosal prolapse, assuming that's what you are describing.  (If you search Dr Shen you'll find lots of posts in general.)

Is banding during the treatment he is suggesting?  

No down time. I was able to travel home (3 hr car ride) same day.  It's done during pouchoscopy in the endoscopy suite. Prep with Metamucil and Gatorade the night before, and clear liquids the day prior. They use propofol to put you to sleep during the procedure. Dr Shen will talk to you before and after to let you know what to expect.

He places tiny multiple bands. These are used to pinch the mucosa to form scar tissue to tighten up the problem area(s). There can be some pain and minor bleeding afterwards, and the bands will fall off themselves - you won't notice. I think of it as a facelift for the pouch.

He did explain in a later conversation that there is some risk that you lose some of the bands before they're able to be effective.

I had no pain after, no noticeable bleeding, and It definitely improved things for me.   I communicated with several people on this site before I had it done and they had good results without any problems.  

Banding can be repeated if the problem recurs or issue is not fully resolved after the first procedure.   At least one person a I spoke with had it done twice, some years apart.  

I need annual screening pouchoscopies.  Dr  Shen will do those for me and band at the same time should I need it.

Thank you for your thorough response.
no one in Australia has done this, but the suggestion to go to Ny sounds scary on my own ( but easier/ cheaper  than bringing my small daughter and husband).
I didn’t realise this could be ongoing which makes me wonder how sustainable this will be.  
I have ulceration at the bottom of the pouch which is pretty bad. I’m not sure if banding will create more issues with whats  already there… it’s taken three years to get this diagnosis. I was diagnosed with Pouchitis for the last few years despite my insistence that it felt structural.
so many in this site have had a bad experience with banding. I’m glad yours was positive

The one member I spoke to who had pain issue afterward was Scallop, though she was not certain of the root cause. You might want to private message to hear more details as I did.   Given your need to travel, as much information as you can get from as many people who will share it on this great forum should help you get settled as to whether it is the right thing for you to try.

Thanks again

Yes, I  did pm her. She has paradoxical muscle issues too which am anal manometry has ruled out for me I believe.
ber story did freak me out.
Has your experience with Shen been good every time? May I ask how long you have had your pouch and if your kale or female?
( dpg imaging shows bladder and vaginal prolapse at the same time in me and is common with pouch prolapse)

@Rachel1 posted:

Hi everyone

I have had a perfect jpouch for 15 years due to uc.
2 years ago I developed a stricture  at the outgoing anastomosis. It had been dilated a number if times and with each scope I had ulceration that was getting progressively worse. Until then each scope revealed a healthy pouch with zero inflammation and ulceration.
I had been treated with flagyl and the rifaxamin and my gi told me that the next drug would be biologics. I had been saying this whole time it felt structuaral.
so I get an appointment with dr Bo Shen who suggested  that it was pouch prolapse ( super rare) this happens in 0.3 % of pouches.  Tests confirm his theory and now I know it’s a structural issue that needs to be resolved . He suggests I travel to USA to have him treat it. ( I live in Australia) has anyone experiences this? Has anyone used Dr Shen for procedures?
thanks so much

Hi Rachel,

I had banding done by Shen for an anterior prolapse several months ago but my story and certainly outcome may not apply as I also had a sinusotomy done at the same time. I developed an ileus during the procedure (it was longer than they anticipated) and woke with terrible abdominal pain. Sent back to my hotel and was vomiting by the time I got to the car. I held off for several hours but couldn’t take it and had to go back to ED. I won’t share all the details but it was 3 days of poor care via the ED. Anyway no improvement in pouch function after the banding but then again I have an only partially treated sinus which may be causing problems. I haven’t given up on them at NYP and will likely go back for another shot at the sinus and banding. Some people required multiple treatments I guess. I imagine the banding itself was relatively painless and quick. My sinus gave them issues. I think the only risk to banding for you traveling so far is it doesn’t work. I wouldn’t worry about the procedure itself….despite my horror sorry. I seem to accumulate them so not a good point of reference! Good luck with your decision and hope you find relief.

I've had 100%! Positive experience with Dr Shen and his team. I also had my surgery at Columbia with Dr. Kiran. Excellent experience all around.

Biofeedback was discussed for me, but I am doing well now and have deferred it. Biofeedback does not address the prolapse, but rather a "functional" issue with how muscles are firing in poor coordination so as to interfere with emptying. This is issue is diagnosed by ano-rectal mammography. It can occur along with prolapse, but they are addressed separately.

Good luck with Dr. Shen. Bring a list of questions. He will answer all of them!

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