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Original poster

Permanent ileostomy vs J pouch, any experience

4 replies

BoarBrush · 25/01/2025 22:34

Dh got his ileostomy in september. Has massive inflammation in his rectal stump. Had a phone consult with the surgeon yesterday and from his words it sounds like he would lean more towards a j pouch over a "ken" bum.

DH obviously wants my input but it's not my arsehole and I dunno what the hell to say. It makes no odds to me really. He just wants the immmediate easiest thing which results in less hospital stay vs not necessarily the long term easiest thing.

Ya know that barron Trump video "I like my suitcase", he literally walked up to me a couple months ago with a different coloured bag and said "you like my bag", it cracks me up everytime I think of it.

OP posts:
JC03745 · 25/01/2025 22:45

I'm afraid I can't advise, but would suggest you or your DH join one of the many online groups for his condition. They will have far more first hand knowledge. Surely a J pouch and being able to use a regular toilet would be far preferable to use a colostomy bag though???

My brother had an ostomy formed at 28, after years of suffering with ulcerative colitis. He said it basically moved his issues elsewhere! He doesn't like to talk about it, but I gather its not a 'cure' for bowel problems and not a return to a 'normal' life.

Original poster
BoarBrush · 25/01/2025 22:51

JC03745 · 25/01/2025 22:45

I'm afraid I can't advise, but would suggest you or your DH join one of the many online groups for his condition. They will have far more first hand knowledge. Surely a J pouch and being able to use a regular toilet would be far preferable to use a colostomy bag though???

My brother had an ostomy formed at 28, after years of suffering with ulcerative colitis. He said it basically moved his issues elsewhere! He doesn't like to talk about it, but I gather its not a 'cure' for bowel problems and not a return to a 'normal' life.

Oh we are members of every bowel forum known to man but I think sometimes it's nice to get a slightly different view from a different crowd iykwim.

J pouches themselves can mean going to the toilet 10 times a day/night so nothing like the ostomy.

Like your brother, Dhs is caused by UC too. He was told the ostomy may solve his uc induced arthritis and now it's the total Ken butt and permanent ostomy that'll solve it.

OP posts:
JC03745 · 25/01/2025 23:13

J pouches themselves can mean going to the toilet 10 times a day/night so nothing like the ostomy.

I had no idea. I recall at the time asking if that would be an option for my brother, but his entire large intestine was so ulcerated and he was told if they left any- he would be more susceptible to cancer. As said, my brother was very reluctant to talk about any details with me. I do know his entire large intestine was removed and I think has what you called a 'Ken' bum, although I've never heard it referred to as this!

I'm sorry that I can't help, but a hopeful bump to someone that can xxx

Original poster
BoarBrush · 26/01/2025 00:28

JC03745 · 25/01/2025 23:13

J pouches themselves can mean going to the toilet 10 times a day/night so nothing like the ostomy.

I had no idea. I recall at the time asking if that would be an option for my brother, but his entire large intestine was so ulcerated and he was told if they left any- he would be more susceptible to cancer. As said, my brother was very reluctant to talk about any details with me. I do know his entire large intestine was removed and I think has what you called a 'Ken' bum, although I've never heard it referred to as this!

I'm sorry that I can't help, but a hopeful bump to someone that can xxx

I suspect your brother was the same as dh, large intestine so ulcerated the risk of failure of the large intestine being so ready to burst that the big hospital just went right in?!I

I really respect your not digging deeper with your db.

A Ken bum as in Barbie and Ken, refers to everything being taken out and stitched up. No more anus.

My husband's doubts are totally centred on me strangely, I couldn't give a shit if he had a bag for life hanging off him.

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