Pouch revision ANYBODY???

@tulsamom posted:

Hi. I had my Jpouch in 1999/2000. It got really enlarged and became problematic around 2011 and I had a revision in 2012. Luckily my doctor chose to leave the bottom part connected and just took off the excess from the top of the pouch and reattached the small intestine to the smaller revised pouch. It went better than I expected and I only stayed in the hospital 3 nights. They expected me to be there 4-6. But everything was working and I was doing a lot of walking so they let me out on the forth day.

I was so worried going into it, but it was much easier than either of my other surgeries and my pouch works better than ever. And I haven't had any obstructions from it kinking anymore. I wish you the best. Let me know if I can help.

I realise this is an old post, but I also have an enlarged pouch and it’s hard to find any info about it. My enlarged pouch has been called megapouch, and apparently the muscles in the bowel wall have just stopped working.

Can I ask what your situation was? I really want to leep my pouch and am seeking a second opinion but it’s hard waiting and I would love to hear from anyone else in a similar situation who found help.

Hi Kushami,

It’s weird, the doctor said it rarely happens and they don’t know why it does but my pouch kept growing. It was about the size of a basketball when the y went in there. It stayed on the right side of my body, so just sort of climbed up out of the pelvis toward my ribs on the front of my body.  I was having lots of obstructions and partial obstructions, from it twisting. It took me a while to make the decision because I was scared. But the surgery went well and I had a lot of years with it seeming normal. To me, I feel like it’s growing again up the right side. Just puffier on that side again. And I have been having a few partial obstructions for no reason. Meaning I didn’t eat anything that would cause it. I’ve been blaming stress. But, it’s been about 10 years. And that’s how long it took to get big the first time. The doctor assured me it would not grow back. But whatever weirdness in my body made it grow the first time must still be with me. I haven’t checked it out because I have a lot less money now. And it hasn’t gotten so bad. But yours sounds ready to go.

One thing I would say was a negative from the surgery is that the place where they reattached the top of the pouch to the small intestine must have gotten some scar tissue or lost the ability to stretch, because I have to eat very soft or very well chewed things or something will get stuck. One of the worst is al dente vegetables. Cauliflower, mushrooms, anything like that which might have made it down in the old days gets stuck. So I’m really careful and it has affected what I can eat out in the world. People don’t usually cook veggies to mush in restaurants. No one likes that.

The doctor never said anything to me about nerves or blood flow, so I can’t speak to that. But perhaps they are looking at revising the bottom, and if they did the top, like mine, it wouldn’t be an issue. If I can be of any more help, let me know. Wishing you a swift and complete healing!

@tulsamom posted:

Hi Kushami,

It’s weird, the doctor said it rarely happens and they don’t know why it does but my pouch kept growing. It was about the size of a basketball when the y went in there. It stayed on the right side of my body, so just sort of climbed up out of the pelvis toward my ribs on the front of my body.  I was having lots of obstructions and partial obstructions, from it twisting. It took me a while to make the decision because I was scared. But the surgery went well and I had a lot of years with it seeming normal. To me, I feel like it’s growing again up the right side. Just puffier on that side again. And I have been having a few partial obstructions for no reason. Meaning I didn’t eat anything that would cause it. I’ve been blaming stress. But, it’s been about 10 years. And that’s how long it took to get big the first time. The doctor assured me it would not grow back. But whatever weirdness in my body made it grow the first time must still be with me. I haven’t checked it out because I have a lot less money now. And it hasn’t gotten so bad. But yours sounds ready to go.

One thing I would say was a negative from the surgery is that the place where they reattached the top of the pouch to the small intestine must have gotten some scar tissue or lost the ability to stretch, because I have to eat very soft or very well chewed things or something will get stuck. One of the worst is al dente vegetables. Cauliflower, mushrooms, anything like that which might have made it down in the old days gets stuck. So I’m really careful and it has affected what I can eat out in the world. People don’t usually cook veggies to mush in restaurants. No one likes that.

The doctor never said anything to me about nerves or blood flow, so I can’t speak to that. But perhaps they are looking at revising the bottom, and if they did the top, like mine, it wouldn’t be an issue. If I can be of any more help, let me know. Wishing you a swift and complete healing!

Thank you so much for all this information. It is so hard to find out anything about this “enlargement” situation.

I would be very happy to have the size reduced, but my original surgeon was not having it. I don’t blame him – I think he is a good surgeon – but we just don’t have the volume of patients here in Australia to build up knowledge on rare failures and revisions.

I am going to get a couple of second opinions if I can. Found one surgeon who did a stint at Mayo. Maybe he has colleagues he can network with on unusual cases like mine.

May I ask where you got your revision done? Was it the Cleveland Clinic?

I live in Tulsa, Oklahoma. I had the surgery here with the original doctor who did my pouch in 1999. Wishing you the best!