Pouch removal

Hi Mark01,

I don't have an answer for you but I am in a similar situation. I am currently diverted with a temp ileostomy and intact J pouch b/c stricture at pouch inlet and peri-rectal fistula. I am not sure if I am going to have my J pouch re-done at Cleveland Clinic or just get a permanent ileo. It sounds like the surgery to remove the pouch and "sew up" the rectum is quite intense. That being said, I don't think leaving the pouch in long term is always a good idea b/c of the mucus and possibility of diversion colitis. Who wants butt problems when they have an ostomy?!? I think some people are diverted and have no problems whatsoever with an intact J pouch so it probably depends on each person's body. 

Best of luck!!

Lori

I had mine removed five months ago.  I only had it just short of 2 and a half years.  

No problems.  

My surgeon... Who created the pouch.... Said she would not give me an ileo without removing the pouch.  

Just for that reason.  It's gonna continue to cause problems. 

It was a tough decision but the right one. 

Richard. 

• Curious as to how many pouch removals  are out there... I know some have had pouch removed and have reverted back to ostomies, and some to have pouch redo.  I may have to have redo, due to prolapsed pouch, and am wondering if my surgeon can do it. Am considering Cleveland Clinic, except that I'd have to change insurance from HMO to PPO and there's a lot if issues with that, as well as travel, and who handles follow up if complications. My surgeon is excellent, part of large teaching university, but not sure of his experience on this or how many pouch removals makes him a good bet. Any information on navigating this process greatly appreciated!
• ljz

have you considered a k pouch?  got it at cleveland clinic 5 months ago and absolutely no regrets.  the j had failed and i wanted something other than the ostomy.  check out posts on the k pouch korner.  

Ljz, I had to have my j pouch removed because of recurrent high grade dysplasia in the anal canal and I opted for a BCIR because I strongly did not want an ileostomy with its associated issues.  Cleveland Clinic has an excellent reputation for dealing with problem j pouches and would be an excellent choice for determining if your current pouch could be fixed. They also do the k pouch procedure, which is similar to the BCIR.  Both of those procedures do not require havinf an external bag. If you are considering CC, I would suggest that you petition your HMO for out-of-network coverage providing your current doctor could provide convincing documentation that the medical care you require could not be provided by an in-network provider.  I live in northern Wisconsin and had my surgery in St. Petersburg, FL.  Travel there was no problem and my local doctors have furnished whatever care I need and I can always go back to St. Petersburg if I develop complications that cannot be handled locally.

Bill

I strongly did not want an ileostomy either.  Nobody does.  But I have one and I have no issues.  I would have had issues if I had converted  my pouch to anything. 

The thing in all these discussions that bothers me the most I guess.... And I am guilty of it too.... Is the all out avoidance of wearing an appliance.  No matter what we do we are altering our bodies to do something it's not supposed to do.  But the big thing is finding what is right for each individual.  I don't regret trying a j Pouch.  Would have regretted not trying it.  But I paid a big price for it with my health and mental state.  Now that all is gone I can see it clearly now.  

Wearing an appliance is not a disability. 

It's a badge of honor showing what I went through to get healthy and back on my feet.  And it is also an option to all the misery people suffer that come to this board.  I know.  I came to this board looking for advice.  While suffering greatly.  But... I found my way out.  An ileostomy.  And I am proud of it.  Not ashamed.  And I certainly do not have any issues with it.  I had alot of issues with a pouch.  

Richard. 

P. S. 

As of now.  I don't see any issues of importance coming up with my new way of pooping.  I don't even have to go to a Dr anymore.  I am done with them. 

I have an internal staple coming out.  But that's no big deal.  I can pull it when it gets a little further out.  But as for issues of my stoma or appliance.  I'm done.  No Dr's.. Meds.. Tests... Scans... I have moved on quite nicely in the past five months.  And that even surprises me.... Every day! 

I am embracing it after avoiding it.