Arnaud,

I’m sorry to learn of the problems you are having with your J pouch. I am not familiar with medical/surgical services available in France (or the EU) or what insurance is available to you. My experience is all in the USA. That said, my thoughts are to get other medical opinions for your condition and attempt further to keeping your pouch. In the USA, the Cleveland Clinic (Ohio) is very well respected for dealing with J pouch problems, but this may not be an option for you. Perhaps Sharon (also from Paris), a frequent poster on this forum, might have some suggestions.

I would have kept my J pouch (I tolerated frequency and getting up at night, etc.), but the appearance of high grade dysplasia made pouch removal necessary. I definitely did not want a permanent ileostomy with its associated issues. Instead, I opted to get a BCIR, which is very similar to the more widely available K pouch. For either of these procedures, the surgeon creates an internal pouch with a special valve, all formed from a short section of your small intestine. This pouch is emptied an average of 3-5 times a day, at your convenience, using a small catheter. The stoma is button-hole in size, located well below your belt line and covered by a small dressing. There is no leakage of stool or gas for most people, and no external appliance (bag) is needed. I present these two procedures as alternatives to a conventional ileostomy.

My surgery was complicated by the presence of dense adhesions from earlier operations, but my surgeon was able to remove my J pouch and make a BCIR with no complications. I did not require any extra hospital stay and made a full recovery. I can do any activity I want, eat a normal diet and can get a full night’s sleep. I feel that my decision for a BCIR was the best option for me and have no regrets. Please feel free to send me a PM if I can be of further assistance, and good luck!

Bill

P.S. Your English is very good!

Thanks very much for your reply Bill.
I'm glad that BCIR works well for you, but my (French) gastros and surgeons are against it in my case because my pouch is inflamed and there's a high probability that I have Crohn's disease. Do you have UC or Crohn's ?
Otherwise thanks for the suggestion about Cleveland Clinic; it's a possibility, but a quite complicated and expensive one (compared to getting treated in Paris) :-) !
Take care, Arnaud

Arnaud, I have FAP. From what I have read from various web sites and forum posts, having any kind of pouch (J, K or BCIR) with Crohn’s can be a difficult situation, but it is not always a “deal breaker”. I suggest that you have additional testing to confirm or rule out Crohn’s before proceeding with surgery or medical treatments. It is my understanding that Cleveland Clinic offers remote consultations in which the patient or their doctor sends appropriate medical records (they might have to be translated into English). I believe the cost is around $900 for this service, but you should get a quotation from them in advance. Also, one of your doctors might have connections there, since Cleveland Clinic has patients coming from many countries.

Bill

quote:

1. Are there some people who wanted to have their pouch removed but for whom the removal was not possible (for “technical” reasons) ? This would be a disaster for me, as the leakages are my worst problem (and keeping the pouch would likely cause some leakages) …

2. What are the risks associated with the pouch removal surgery (which is supposed to be "major") ?

3. Are there some people who made the decision to have the pouch removed and replaced by a permanent ileostomy and who regretted their decision once the surgery was performed ? And if yes, why ?

1. Possibly but it would likely relate to complications from previous surgery(s) such as massive adhesions or just generally bad health. It is important to have a surgeon that has good familiarity with this surgery, as it can be tricky.

2. Same as any major surgery of course. There is also a fair chance (10 to 20% I was told) of sexual dysfunction and a much smaller chance of urinary dysfunction

3.I have not heard of anyone regretting the decision to remove their pouch though there may be some. It is a surgery of last resort and people have pretty much exhausted their options of making their J pouch function in an acceptable fashion before having it removed.

The key to the ileo is, in my opinion to have a good functioning stoma and that means one that extends an inch or so from the surface of the skin to the opening. This makes pouching easy and will make ones life much simpler. Once the pouching system is figured out leaks should be few if any

Thanks for your detailed answer, chiromancer.

Bill, I've already have my pouch redone once and my gastros and I are afraid that there would be a high probability of problems with another pouch (but much less so for an ileostomy). I've had several scopes/tests which point to the likelihood of Crohn's. And thanks for the info about CC's remote consultations. Am going to think about it, even though I'm seeing the top gastros in France !

Take care, Arnaud

best decision I have ever made in my entire life... was to get rid of that jpouch.

YES its a very massive complicated surgery. And don't even think of having it done unless your surgeon has done it many times before. I was one who suffered with multiple and massive complications from the jpouch removal surgery. But regardless.... I would do it again.. any day. My life is dramatically improved with that mutant jpouch beast gone.

And as another person mentioned in another post... life with an ileostomy is dramatically underated. There is nothing you can't do with any ileostomy.. and you are not strapped to the potty...ever.

I, too, have not one regret about my surgery and only wish i had done it years sooner. As Liz said, it is very important to find an expert surgeon. Other than a few obstructions as I was learning how to manage my individual diet, i did not have complications. Liz had a very challenging recovery and even she has no regrets, so that says a lot.

I hope you feel better soon!

Thanks very much for your messages, Liz and Lynne, they're quite encouraging !
The part that scares me though is about having a surgeon who's done it many times ... I just had this afternoon an appointment with one of the top surgeons for this in France and it seems he does only a few pouch excisions per year (he didn't even know the exact number in fact), just because there's a very small number of patients with failing pouches (and that's a quite large hospital in Paris, specialized in these surgeries).
Do you know how many excisions/removals per year the top surgeons in the US do ?
Also, Liz, was this (the fact that your surgeon wasn't experienced enough ?) the reason why you got many/big complications ?
Cheers, Arnaud