I've had my ileostomy since December 13th of last year. I've not had any major issues with the bag to this point, but now I have to make a decision. My diagnosis came back as UC, meaning I have the option of either getting a j-pouch, or getting the rectal stump removed and staying with the ostomy. I'd like to hear what others have to say, good and bad before I decide, what do you guys think?
Hi! I've had UC, along with a temp ileostomy, j-pouch creation, reversal, and then a permanent ileo. If you have any questions, or need any advice, I'm your girl!
i agree any advice would be greatly appreciated
I'm in the U.K. & in exactly the same position as you & struggling to make a decision! Had emergency colectomy 12 mths ago for UC which I only had for 8 mths. My surgeon said there's a 40% chance reversal will go well & im risk averse at the best of times!
I think if I didn't try the reversal I would always wonder if it would have worked. I'm doing fine with my illeostomy & am fit again back at the gym after losing 3 stone whilst sick. Think my main worries are getting sick again like I was before & also the scarring. I was so lucky last time with keyhole surgery & worry I'll end up with huge scars & that it won't work.
There is NO hurry in your decision. Know that. I have an Ileo due to sudden UC....so they told me AFTER emergency surgery. That was in 2012. I still have my rectal stump and intend to keep it, barring issues. It keeps my options open.:) What they don't always tell you is that removing the rectal stump does NOT erradicate UC. It can pop up elsewhere. So I use my rectal stump to gauge how my level of inflammation is doing. I am drinking a turmeric latte every morning on an empty stomach and that has resulted in a stop to the bloody rectal discharges . I still get some mucus as is normal, but now no bleeding.
Take your time.
What is your recipe for tumeric latte.
Thank you all for the responses. I do intend to take my time, I don't have to decide anything for a year, even then my surgeon told me if I wasn't ready we'd wait longer. I am leaning toward keeping the ostomy, I'm not convinced the J-pouch is the right choice for me.
hi sasquatch i would say that it depends on how much you battled being sick with UC, when i had it i was sick off and on for 4yrs. and it was worse after each bout with it so i decided a permanent ileo was for me and had a total proctocolectomy.
I saw your post. I had a J pouch done in 1993 with a temporary ostomy. After 12 years it failed and i had to go with a permanent ileosotomy. I was told many things about the pouch being hand sewn as opposed to stapled. It was good while i had it before it went bad. If I knew it would only last 12 years i would not have had it done. With newer techniques and meds they may be a lot better. I know a woman who had a transplanted kidney then a j pouch and she had no problems at all. Talk to your doctor about how things have improved. Maybe it was just my bad luck. After the j pouch failed they diagnosed me with crohn's disease instead of UC. That might have been the problem. Good luck on your decision.
I have my ileostomy for 50+ years, since I was a kid of 15. The rectal stump never healed ( UC) so after 4 years, I insisted on having it removed, making my ostomy permanent. My doctors were not in favor of the surgery, thinking that sometime in the future there would be other options....and they're right. But after being sick for 4 years ( and out of school) I never wanted to take the chance of the disease re ocurring. I know quite a few people, who had a temporary ileostomy ( for UC) then had the J pouch, which worked well for them, until it didn't. One friend "leaked" rectally all the time, ( had to wear pads) and another has re occurring issues, and a need to rush to a bathroom. If you have the medical option, then it really does become personal choice. I've never regretted staying with my ileostomy. Best of luck to all of you who have a decision to make. Remember, there's no real rush. Marsha
A vote here for the J-Pouch. I've had mine 8 years and all is well. If in the future it goes wrong and the bag needs to go back on, so be it, but so-far-so-good and I'm making the most of the bit of extra 'freedom' the pouch provides.
Mate send a message if you'd like some more detail.