My  10 yr old son is awaiting ileostomy reversal. His primary surgeon who did his ileostomy says it will be better to do a pull through procedure, to straight connect the small bowel to his rectum and no need for jpouch.  Children will adapt better as they grow, he says. I'm not sure, because no pouch may mean nothing to hold the output, so he may have to be next to the rest room all day??

 

Please advice. Any one with experience having a straight connection? How to manage incontinence? Does it get better with time? 

Original Post

You really do need a second opinion, IMO. Make sure it’s with a *board-certified colorectal surgeon* with plenty of J-pouch experience. The advice you’re getting sounds like what a general surgeon might suggest.

The rectum does have some reservoir capacity, but there’s a reason the J-pouch is much more common than the IRA. If the initial problem was UC then the IRA is simply a mistake, because of the downstream cancer risk. The J-pouch is a more technically challenging procedure, though, so the surgeon should be chosen carefully.

My former ostomy nurse told me she had a patient, an adult man, who had this procedure done a long time ago. His life is very difficult because his small intestine was joined directly to his anus. He now has short bowel syndrome (I think that's what it's called) and anything he eats goes right through him. He is constantly Searching for toilets, and he suffers constant leakage. If it were my son, I would search for a top notch surgeon who has the skill to give a 10 year old a relatively normal life, not lifelong incontinence. Your boy has a long life ahead. Maybe this direct-connect procedure is the only one your surgeon knows how to perform. Maybe anything more complicated is beyond his skill set right now. It's not an insult to your surgeon (or any surgeon) if you get a second or third opinion. Search the world over to give your child the best outcome. He is too young to make the decision, so you have to do everything you can. 

My first surgery in 1982 involved a direct connection of the ilium to the anus.  A  pouch did not develop as expected and an S pouch (j pouch with an extra loop) was later created and gave fairly good results.  I would suggest that you get a second opinion.

Scott F posted:

You really do need a second opinion, IMO. Make sure it’s with a *board-certified colorectal surgeon* with plenty of J-pouch experience. The advice you’re getting sounds like what a general surgeon might suggest.

The rectum does have some reservoir capacity, but there’s a reason the J-pouch is much more common than the IRA. If the initial problem was UC then the IRA is simply a mistake, because of the downstream cancer risk. The J-pouch is a more technically challenging procedure, though, so the surgeon should be chosen carefully.

Thanks Scott, will look for second opinion. Yes, my son was diagnosed with UC, and then had a colectomy on emergency basis. 

 

 

Winterberry posted:

My former ostomy nurse told me she had a patient, an adult man, who had this procedure done a long time ago. His life is very difficult because his small intestine was joined directly to his anus. He now has short bowel syndrome (I think that's what it's called) and anything he eats goes right through him. He is constantly Searching for toilets, and he suffers constant leakage. If it were my son, I would search for a top notch surgeon who has the skill to give a 10 year old a relatively normal life, not lifelong incontinence. Your boy has a long life ahead. Maybe this direct-connect procedure is the only one your surgeon knows how to perform. Maybe anything more complicated is beyond his skill set right now. It's not an insult to your surgeon (or any surgeon) if you get a second or third opinion. Search the world over to give your child the best outcome. He is too young to make the decision, so you have to do everything you can. 

Thanks so much for your input. Yes, im trying my best to find out what may work better for my son. Thanks again for your kind words. 

I had all but 8" of my colon removed when I was 15 - straight connection. This was before j-pouch or any pouch surgery had come about. I still had some colitis in the 8" but no bleeding. I am so thankful I had the resection-felt so much better! The resection worked for 16 years but I ended up having to have j-pouch surgery and still  have it 25 years later. After the resection I still had to be on a good bit of medicine. I'm allergic to sulfa drugs so a lot of times I had to use cortisone enemas for weeks at a time or be on prednisone. During the 16 years after the resection I HAD TO KNOW where the bathroom was and what the fastest route to it was wherever I went. I was careful about what I ate but if the food was rich, Italian or salad (all of which I was able to eat), I stayed very close to the bathroom.

To sum it up, my only choices at 15 were colostomy, ileostomy or resection. (My resection surgeon was ahead of his time. I was blessed and am soooooo thankful my grandmother worked for him and he figured out the resection just for me so I would not have to have a colostomy or ileostomy during my teen years. HOWEVER, if j-pouch surgery had been available at the time, I would have chosen the j-pouch surgery, without a doubt! The j-pouch has given me a lot more of a normal life!

 

P.S. In case you opt for j-pouch surgery for your son: I had my j-pouch surgery done at Cleveland Clinic by Dr. Victor Fazio who was the head of the gastroenterology department at the time. I don't know if he is still doing surgery, but he is AWESOME! I would have HUGE confidence in any gastroenterologist who has worked with him or studied under him!

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