Second j-pouch

Well, it is a quite individual thing. If you lost a lot of small intestine with the first surgery, it could be an issue. But, ordinarily you should have plenty for a second j-pouch.

There is roughly 20 feet of small intestine. It takes 6-12 inches to make a j-pouch. You can lose several feet without it affecting your ability to absorb adequate nutrition. There can be other obstacles, like a short mesenteric blood supply. So, it all depends on your specific anatomy.

You may want to get a second opinion.

Jan

Thanks, @Jan Dollar. You always have a calm, informative post to cheer me up.

I am actually getting a second opinion next week. It will be over the phone – bit weird – but the surgeon has my scans. I don’t believe I lost any extra small intestine than usual in my first surgery.

I will feel a bit better equipped to ask questions.

I have come to the conclusion that a permanent ileostomy is not for me. I know many people can manage and live with an ileostomy very well, but I am not one of them. I’m 46 years old and know myself pretty well by now. I think I could handle the consequences of a shortened transit much better.

I am going to see my original surgeon again as well, as it has been some years since he gave me the news.

The other complication is that I developed megapouch after 15 years. It could happen again in another 15 years. There are so few cases of megapouch that nobody knows.

It might be possible to do a pouchpexy (pouch repair) as a way to salvage your current pouch. Something to ask about anyway.

Jan

"The other complication is that I developed megapouch after 15 years. It could happen again in another 15 years. There are so few cases of megapouch that nobody knows."

Well, my doctor said it wouldn't happen again because it was so rare. But whatever was different in my body that made it happen the first time made it happen the second time. Being 58 means that if I get a redo or  revision, most likely it will happen again in 10 to 12 years. This surgery at 70 will not be pleasant. But, you do what you can. And... since they don't know what causes this means they really can't say anything definitively.

@Jan Dollar posted:

There can be other obstacles, like a short mesenteric blood supply. So, it all depends on your specific anatomy.

Jan

This was the concern of the surgeon who is not going to treat me. My hope is that Dr Remzi has some tricks up his sleeve because he's seen this many times before. If they find that there is an issue with the blood supply once they are in there, I can wake up with a whole new, much worse life. That's why I'm hoping the most experienced doctor can prevent the worst outcome. That being a perm ileostomy with my skin refusing to hold an appliance because it's ulcering from the adhesive.

@tulsamom posted:

This was the concern of the surgeon who is not going to treat me. My hope is that Dr Remzi has some tricks up his sleeve because he's seen this many times before. If they find that there is an issue with the blood supply once they are in there, I can wake up with a whole new, much worse life. That's why I'm hoping the most experienced doctor can prevent the worst outcome. That being a perm ileostomy with my skin refusing to hold an appliance because it's ulcering from the adhesive.

Let us know how it goes! I hope it goes well

Thank! I will!

@tulsamom posted:

Thank! I will!

I will keep you in my prayers

Thank you!