Skip to main content

Hello,  I posted the other day, but have not received any feedback.  I thought perhaps if I posted under "Need Help Now", I may have better luck. I'm very anxious about having a 3-step pouch redo.  My pouch is 30 years old.  I developed 2 fistula in August 2023 and have had setons in since then.  I had a tele-health appointment with Dr. Remzi and his team on Monday.  He seemed very knowledgeable and thorough.  He explained that my issues are mechanical and that the best course of action would be to have a redo.  I would really appreciate any information about the process and Dr. Remzi.  I'm really, really scared.  Thank you..

Original Post

Replies sorted oldest to newest

This may be a bit complicated, I will just shorten it, my first pouch did well, till it didn’t, got a second, no complications .        
Unfortunately , my body decided it would act up and I had to make a decision to go for a Kpouch or ilieoscopy.  Went for the continent for 4 years. My body just didn’t want to deal with that any longer.  I once again had a decision to make and now have an ostomy. This sounds like failure, maybe, but don’t take it that way please, this spanned many years and I wouldn’t have the life I have it I didnt have a great surgeon.  One who put my QOL in the mix also.    
Depending on what your medical issues are , things are what they are.
BTW, I had a tremendous Dr that did the Kpouch also , it just didn’t want to be in my body ! Hope this makes a bit of sense to you.

,

I needed to have my 30 year J pouch removed due to the risk of recurrent cancer in the anal canal. I opted to get a BCIR instead of a conventional ileostomy. I was regarded as a high surgical risk due to the presence of major adhesions that had developed over the years.  Removal of the adhesions added 3 hours to the operation's time, but all went well and I have had a well functioning BCIR for 11 years.  Since your surgeon may find conditions while he is operating that would preclude a J pouch redo, you should discuss options that might be available.  I published an article entitled, "Researching My Options" that might be helpful for you.  It is located in the Quality Life Association's web site (www.qla-ostomy.org) under the Ostomy Options and Education tab.

Thank you, Bill.  I know that adhesions will be a major issue.  I had a major abscess in 2004 and a laparotomy to lysis the adhesions and drain the mess. I had another in 2012.  I almost died with that one. I will definitely discuss the BCIR with Dr. Remzi.  I wish I had a way to stop being scared out of my wits.  I guess knowing what’s coming is not always a good thing!  Take care.

@Momof2 Your worries so understandable. Especially given your recent challenges. It can seem overwhelming to be faced with surgical decisions. I've  thought a lot about how I'd approach more surgery, though I am doing well now with a very young pouch.

Years ago I facilitated an IBD support group (before anyone talked about bowel conditions publicly!)  The rule of thumb was to get multiple surgical opinions for elective procedures.   We used to say that we'd get a few opinions to repair or replace a roof, why not our gut?    Later I became an attorney and practiced in the healthcare field. So I added a rule to research the hospital itself. The best known J-pouch surgeons, including mine, have changed hospital affiliations.  An established surgical team and quality in-patient care are as important as the surgeon's skills.

I had an excellent surgical experience following 3 consultations.  I have tremendous faith in my surgeon.  But if I had to undergo major bowel surgery in future, I'd again seek multiple opinions and look hard at the hospital.   One outcome of second opinions can that the first opinion is confirmed. This can bring down anxiety levels heading into the surgery. Lower stress is the best starting point for healing.

Best of luck to you, whatever you decide.  

Thank you so much.  Dr. Remzi is my 3rd opinion.  I saw a surgeon at Cleveland Clinic in Weston, FL and didn’t like him at all.  I live in S.Florida (originally from Central N.Y.) so I have to travel to Long Island.  I wish that I could tour the hospital before surgery, but I don’t think that would be possible.

Wishing you many GOOD times!

Hi  I had a pouch re-do with Dr  Remzi 12 years ago when he was at the Cleveland clinic.  Mine was due to a mechanical issue as well.  I have since followed Dr Shen to NYC for my yearly scopes and if I ever do have another issue (hoping never) I wouldn't hesitate to have Dr. Remzi do another surgery.  Dr Shen recommend him as he did all the "problem pouches, more difficult cases" as he was deemed the best of the best.

Best of luck



Sandy

Mom of 2, just wondering  if you’ve had your redo and how it went if you’re willing to share. I’m looking at possible redo if prolapse cannot be fixed. Getting multiple  opinions from surgeons too but good point out looking at hospital and surgical care team. AMB- any suggestions on how to go about that? I will be having surgery outside of my local area so it’s bit overwhelming. And yes, there’s been a lot of movement of both surgeons and gastros it seems!

Thanks DanniO for weighing in! Was your surgery considered a redo? How long ago did you have surgery? Dr Remzi thinks some of my JPouch will be salvaged but 1/2 will be replaced. Obviously he’s not sure until he does EUA and MRI of pelvic area but I do feel good that I’ve decided to have Dr Remzi do this. Hoping this reduces straining I’m having without me losing my continence. So scary to go through this again!

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×