Hi all.
I am new to the group and need some advice from those who have gone through the J pouch surgeries.
I just recently had the ileostomy take down surgery for the second time with similar results. I am unable to eat or drink anything at all. If I do, I become extremely bloated and vomit for hours on end unless I get one of those lovely NG tubes inserted.
Even on TPN without eating, gas builds up in my j pouch and is extremely painful. I get some relief by self inserting a rectal tube to move my bowels a bit and release some gas. I have very small bowel movements on my own and need to use the rectal tube multiple times per day. It does not fully get rid of the pain either.
My doctors did not find any strictures or obstructions and think the root cause of my issues are my pelvic floor muscles. They also injected Botox into my sphincter muscles to see if that would help me move my bowels. The doctors are trying to get me to get my ileostomy back, but I've been through so much already I wanted to give my muscles a chance to work. If I get a 7th surgery, I am afraid it might be my last since this whole process is quite draining. I'm only 30 though and the bag is not ideal for me. My skin is very sensitive, and I need to have a Hickman line with the bag to remain hydrated.
I am uncomfortable at home, but seeing if anyone else had any similar experiences and/or advice. As I mentioned, the bag wasn't ideal, but at least I was pain free.
Thanks for your input in advance.
I am new to the group and need some advice from those who have gone through the J pouch surgeries.
I just recently had the ileostomy take down surgery for the second time with similar results. I am unable to eat or drink anything at all. If I do, I become extremely bloated and vomit for hours on end unless I get one of those lovely NG tubes inserted.
Even on TPN without eating, gas builds up in my j pouch and is extremely painful. I get some relief by self inserting a rectal tube to move my bowels a bit and release some gas. I have very small bowel movements on my own and need to use the rectal tube multiple times per day. It does not fully get rid of the pain either.
My doctors did not find any strictures or obstructions and think the root cause of my issues are my pelvic floor muscles. They also injected Botox into my sphincter muscles to see if that would help me move my bowels. The doctors are trying to get me to get my ileostomy back, but I've been through so much already I wanted to give my muscles a chance to work. If I get a 7th surgery, I am afraid it might be my last since this whole process is quite draining. I'm only 30 though and the bag is not ideal for me. My skin is very sensitive, and I need to have a Hickman line with the bag to remain hydrated.
I am uncomfortable at home, but seeing if anyone else had any similar experiences and/or advice. As I mentioned, the bag wasn't ideal, but at least I was pain free.
Thanks for your input in advance.
