Did he say anything about  getting a defecogram to confirm the prolapse before treating it?

Yes. The day before. What do you know about the procedure?

Thanks

Folks who’ve had defecograms tend to report that its physically no big deal, but they vary in how awkward/uncomfortable they find it to (essentially) poop under observation. It’s probably best to process that before you show up.

I’ve done it many times

Since you do not fully understand, I would definitely recommend asking the doctor all of your concerns in depth. Do not worry about reasking questions, they are there for you

@scallop posted:

I’ve done it many times

Sorry - I thought you were asking about the defecogram. Hopefully some folks who’ve had the banding procedure will be able to share their experiences.

I have not heard of banding for pouch prolapse, but banding of hemorrhoids has been around for ages. I was just not sure how it would apply for prolapse. But, Dr. Shen is the expert when it comes to problem pouches and most treatments for prolapse are fairly major. So, anything that is a simpler outpatient procedure is a good thing. I did a bit of looking and found that Dr. Shen has been doing this for a couple of years. Here is a link that discusses the procedures he can do via endoscopy. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6383159/

Jan

I have had the banding procedure for prolapses done a few times. Unfortunately it has happened numerous times but each time Dr Shen has been able to fix the problem. Let me know if you have any questions!

Yes not many do this procedure and he never trained anyone how to do this either at Cleveland Clinic. I have heard its only about 60% effective. How did he diagnose your prolapse and what are your symptoms? When Remzi first did my redo Shen told me I had a small prolapse, and said treat it as I would a hemrhoid  I don't believe I have ever had an issue with this"prolapse". Dr Remzi said its not a prolapse and my new GI and surgeon who have scoped me since never mentioned it.. Don't get me wrong I love Dr Shen, as I had him for 11 years.

Hmmm -- I have not been diagnosed with the prolapse.  When I did a video appointment with Dr. Shen last year he said he was suspicious of a prolapse.  But i"ve had my pouch 20 years and my symptoms haven't changed much so I'm not sure.  I'm going to NY to see him anyway because I haven't seen him in about 8 years and I don't trust anyone here (in Northern CA) so I'll see what he has to say.  He will do a decography before I agree to the banding in any case.  Do you know of any down sides to the banding?   Do you have any idea how many he has done?  And where did you get the 60% figure? 

Thank you,

Debbie

This is an interesting topic.  I've been wondering if the pouch could prolapse.  What does it feel like?  For me, it feel like my pelvic floor has dropped down, put I can "push" it back up into place.  @scallop  or @CTBarristerr, do my symptoms sound like prolapse?

I don’t have that symptom nor do I know if I actually have a prolapse so I’m not of much help. Where are you located?  Perhaps you should see Dr Shen?

lclassen, I cannot help you with your question. You should see Dr. Shen or some experienced pouch specialist in your area.  The past issue I had with my J Pouch was not a prolapse, but rather a septum that developed within the pouch, which was corrected with a surgical revision of the Pouch performed by my original surgeon, and not any procedure along the lines of what has been discussed in this thread.

@lclassen posted:

This is an interesting topic.  I've been wondering if the pouch could prolapse.  What does it feel like?  For me, it feel like my pelvic floor has dropped down, put I can "push" it back up into place.  @scallop  or @CTBarristerr, do my symptoms sound like prolapse?

I agree with others that if you think you might have a prolapsed pouch a proper physical exam is the next step. There are two kinds of prolapses: mucosal prolapse and full-thickness prolapse. The treatments are very different.

@lclassen posted:

This is an interesting topic.  I've been wondering if the pouch could prolapse.  What does it feel like?  For me, it feel like my pelvic floor has dropped down, put I can "push" it back up into place.  @scallop  or @CTBarristerr, do my symptoms sound like prolapse?

@Jessica.taylor posted:

I have had the banding procedure for prolapses done a few times. Unfortunately it has happened numerous times but each time Dr Shen has been able to fix the problem. Let me know if you have any questions!

Hi Jessica -- I do have questions: 1- Do you have any idea how many patients have had the banding with Dr. Shen? (He hasn't answered me.). 2- Do you know if there are any downsides or adverse events associated with the banding?  3- Did you have any problems or discomfort following the procedures and if yes, how long did they last?

Thank you so much!

Debbie  (UC diagnosis 1997, j-pouch 1998, takedown 1999,  j-pouch redo 2000, takedown 2001)

Thank you @CTBarrister and @Scott F for your input.

Great discussion.

60-80% success rate on the banding, according to Dr. Shen. I just asked this question of him yesterday evening.  I'll gladly report back about the risks, complications, etc after I speak to him next.  I've been diagnosed with prolapse causing 80% occlusion which has caused cuffitis-type symptoms.   I'm managing well on antibiotics but would like to have improved function if the band can accomplish it.  "Looking forward to" defogram and monometry before deciding whether to have the banding procedure. 

I had it and had a very bad reaction.  He claimed no side effects but I’ve been in pain ever since it was done in June.  Private message me if you want more info.  Im considering excision.

debbie.

I also had banding (and sinusotomy) with Shen—no improvement and things have gotten progressively worse. Also had a complication which landed me in the hospital right after. I traveled for the procedure and it was a difficult situation. You do NOT want to be admitted through the ED at NYP. I’m not super happy with the whole experience in general and I’m honestly not really sure where to go from here as he’s considered one of the best. It’s disappointing.

BTW @AMB

I was diagnosed with floppy pouch complex with an anterior prolapse. Symptoms are very difficult emptying, frequent urge and heaviness without being able to go, straining with all the attendant problems, and getting backed up. It’s been fun.  

And the communication with the Columbia group is a nightmare!  What was your complication (if you don't mind sharing)?

Best of luck,

Debbie

Hi Scallop, It was an ileus. Significant pain immediately following then vomiting started by the time I got back to the hotel room.

Thanks for sharing your experience @Pouch 2021. Sorry it was so rough. I've not had the same issue with communication with Columbia that Debbie has. Just the opposite. But I am hesitant to undertake banding if there's an conservative option.  Wondering if your experience of this is that symptoms of prolapse got worse over time?

Hi Pouch2021-- So sorry to hear about the ileus.  Sounds awful!

AMB - I believe that prolapse symptoms do get worse over time.  There is no other option.  Shen and Remzi are doing the banding.  Otherwise I think the only option is to excise depending on how severe the prolapse is. 

Wondering how you got people at Columbia to pick up the phone and answer emails.  Maybe I just ask too many questions!

@AMB posted:

Thanks for sharing your experience @Pouch 2021. Sorry it was so rough. I've not had the same issue with communication with Columbia that Debbie has. Just the opposite. But I am hesitant to undertake banding if there's an conservative option.  Wondering if your experience of this is that symptoms of prolapse got worse over time?

Hi AMB,

The banding is probably as conservative as it gets. They snare the prolapsed mucosa with several tiny rubber bands that fall off within days and hopefully scar the tissue, stiffening it up. Some people have it done multiple times on an as needed basis. It didn’t help me but I have additional pouch issues (sinus tract and others) which I think are contributing. The aftermath of my procedure, which you will hopefully not experience with just the banding alone, was where the s*+t hit the fan. I  think it’s worth a shot particularly if all you’re dealing with is a prolapse. And yes my symptoms have progressed over time since takedown. I wish you luck in whichever way you decide to go.