saw surgeon-suggesting 3 month ostomy w pouch advancement. Questions

Hi everyone, 

I need advice from anyone who has had a problematic jpouch or anal stricture.   I’ve had my pouch 7 years this May with a lot of issues mainly due to a stricture at my anastomoses and chronic cuffitis.  

I went in for a scheduled analplasty due to stricture at anastomoses yesterday. The plan was to excise one side of scar tissue in cuff and drop that side of pouch and hand sew it.  I also have pretty severe anal fissures over the last year or so where creams are not helping heal them.    

The surgeon was unable to do anything but biopsy and dilate yesterday due to the level of inflammation esp posteriorly and due to inflammation/ulceration in cuff. 

He’s recommending a three month ostomy w excising rectal cuff and advancing pouch as well as pulling skin up from lower anal canal at same time.   I’m guessing the latter is to heal the fissures? 

I was so drugged out after the procedure  that I don’t remember  all the conversation but he drew my husband a picture and I also have mild to moderate inflammation in pouch w ulcers in a few spots.    I’m on no antibiotics or meds for this and have not been for a long time. On occasion i suffer from pouchitis symptoms but they often resolve in a day or two or if not I’ll pulse antibiotics for a few days.   

I honestly feel I could live with my pouch ( hell I have been struggling with it for years to hold on to it ) if the surgeon could correct my stricture and fissures,  but I’m very concerned about going through two more surgeries with what appears to be a less than optimal pouch to begin with.   

My prior consult w Remzi resulted in a recommendation for complete pouch redo.   Dr Milsom is the surgeon I had my procedure done with yesterday and he also did my original jpouch surgery.    

I am really struggling with going through another abdominal surgery and ostomy if this procedure might fail and if it does my bigger concern is if am I no longer a candidate for a complete pouch redo? 

I am making my list of questions for my surgeon. I can imagine a surgeon hates to throw in the towel on a surgery they originally did w the recommendation of a pouch redo.

I always have chronic mild to moderate inflammation in my pouch and cuff and last time ulcers were only seen on suture lines in the pouch, but the finding of new ulcers near the pouch   inlet was news to me yesterday.  I also have some ulcers in distal pouch and the cuff is a mess.  The area above pouch always looks good.  

I guess I’m just looking for any advice if anyone has been down this road.  I know only I can only make the final decision to try this but my biggest concern is if it does not work that I’ve lost any opportunity for a pouch redo with possibly a healthier jpouch this time around.

 I’ve been fighting a permanent ostomy for a long time and wonder if at 55 if this is the smartest way to go. I’m tired of drugs, insane medical bills and the rollar coaster of chronic illness.  I know this is a less invasive procedure than a complete pouch redo but I  wonder if I’m just delaying the inevitable with more surgery to eventually create a permanent ostomy.  

I’m sorry for this long post.  Any advice would be appreciated  

 

 

Original Post

I can say that "I feel your pain" with regard to considering a permanent ileostomy; that is where I am now.  I've had my pouch since 1999  ( by Dr. Fazio at Cleveland Clinic) and it doesn't seem to work for me anymore causing a loss of quality of life.  15-20 BMs per day, up several times a night, almost constant cramping alleviated only 1200 -1400 mg of ibuprofen daily, and now moderate incontinence. .  Also lots of butt burn.   I can't walk long distances or hike anymore unless I know there is a bathroom nearby. I don't have pouchitis, take 500 mg of Cipro daily, but it is not getting better.

  I am now seeing a colo-rectal surgeon at University of Pennsylvania , and she feels that doing a loop ileostomy is the way to go to alleviate my symptoms.  She says it is a much simpler procedure than a complete removal which is unnecessary for me.  She says that she has seen this in other patients where the pouch just doesn't work well any more and there is not much else they can do, and the ileostomy greatly improves quality of life.

  I would also like to hear from people who have reached the point where they decided it was better to have the ileostomy than deal with ongoing pouch problems.

I can also relate to the problems you are experiencing with your j pouch.  The presence of recurrent high grade dysplasia in the rectal cuff made removal of my pouch necessary, and I very strongly did not want to get an ileostomy with its associated issues.  Fortunately, I found that the k pouch and closely related BCIR are procedures that do not require having an external bag.  You can get lots of information on the internet about these procedures as well as locate surgeons who perform them. I opted for the BCIR and now have a very good quality of life.  There is no leakage, I can eat almost anything I want, and I empty the internal pouch 4-5 times a day with a small plastic catheter.  Removal of the j pouch is done at the same time the k pouch or BCIR is created. 

Thank you for the replies. I’m very sorry you are experiencing  problems with your pouch Jamie. I think over time the pouch can get burnt out. Dr. Remzi indicated mine was burnt  out over two years ago. I’m surprised my surgeon  is offering to save it and at the same time I’m wirried that maybe I should go w Remzi and get a pouch redo as if the advancement fails w current pouch am i out of luck fior a redo? 

Thank you Billy for offering  an alternative to the jpouch.  Hopefully in NY Remzi may offer this or another surgeon as an alternative?  I’m glad it has helped you and would certainly consider it as well  

 

 

  

 

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