ileostomy vs. j-pouch

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26/Mommy to a baby boy!
Mild 'acute' Colitis Dec 08... Prednisone Dec 08 - Feb 09. No meds until recent diagnosis.
Diagnosed - Mild UC Dec 2010 during 33rd week of pregnancy... Lialda and Prednisone Dec 2010 - Jan 2011. Flared again during labor. Prednisone Jan 2011 - Feb 2011.
Currently have normal bowel movements. Taking Lialda.
Husband had severe UC. Had his colon removed over ten yrs ago.

hi, my own choice to go for a perm end-ileo was to have 20 yrs of UC & the beginnings of colon cancer sorted out in one straight operation. this choice was based 3 items : 1) i was in such a state with UC, practically housebound for a year, the thought of up to 3 surgeries over a 12/18 month period was not at all attractive, 2) the possible remaining bathroom issues & skin issues with a pouch might just swap my existing probs with a different set of probs/restrictions & 3) the favourable outcomes i had read about on web & been told about from local IA people. Overall I am very happy that after a 2/3 month period from the operation date to a good recovery level, that i have left UC behind & the stoma & appliances are working well.

My surgeon, on informing me that surgery was necessary, left it to me to choose but on deciding on the perm ileo, he agreed that if it was a member of his family who was in my position he would consider this the best option to maximise quaity of life - this was a good help in reinforcing that i had made the right decision.

I guess we all make big life decisions from time to time e.g. buying a house , changing jobs, relationships. After research, advice & consideration of implications we have to hope on each occasion that we come to the right conclusion. Im my mind, its been 'so far so good'

Cheers

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UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

i chose a perm ileo because i didn't want to ever go to the bathroom the normal way again!
also, i didn't want the extra surgery (take down) i was already having to leave my kid with my grandma for 6 weeks and i didn't want to put him through anymore. I didn't want the risk of pouch failure, which i know is low but im an if it can go wrong it will kind of girl!
My surgeon said if he was telling his sister what to do, he would tell her a perm ileo too.
and more than anything, i wanted the UC gone, i wanted the surgery over and done, i didn't want to mess with it anymore.

i read your post on the UC forum, and where you thought you might be being shallow, let me tell you i am probably the most vain, shallow person you would ever meet, and i can deal with the body image thing just fine, in almost 4 years nooone has noticed and i have been in all kinds of situations and worn all kinds of clothes.

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UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

and i now realize that last sentence may sound a little wrong, lol thats not how i meant it!

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UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

I also chose a permanent ileo. I am a park ranger (not law enforcement, but the type that leads nature programs for the public) and am often out on the trails with people leading hikes or up on stage leading presentations for for 2+ hours. I didn't want to have to worry about frequency of using the bathroom. I know not all j-pouch recipients deal with this, but some do. I didn't want to take the chance. I can empty my pouch before I head out to lead a program participants and I am good to go with no worries.

One of my other huge passions is rock climbing. Sometimes I can be on a face all day. Peeing up there is no big deal, but pooping is another issue. Again, I worried about possible frequency/urgency issues. With an ileostomy, I know I will be able to swap out a pouch on a two-piece system on a ledge at my convenience and pack it out.

I also liked the more predictable results of the ileostomy surgery. Heck, I have had enough complications with this surgery. My body has not been cooperative with healing my incision and I had to go back to surgery two more times as is. I am finally healing up after four months. I cringe when I think of what might have gone wrong with a j-pouch. I seem to not be lucky that way.

Finally, permanent park ranger jobs are hard to come by, and I had to work many years as a seasonal employee to finally get my dream job. I had already missed numerous weeks of work this year due to a severe UC flare, and then I knew I would be out for about 8 weeks for the ileostomy surgery. I am not sure my employer, as wonderful as they have been through all of this, could have handled me being out for two more surgeries and fairly lengthy recoveries. I would not have wanted to lose the job I loved so much.

My surgeon was great in that he didn't try to sway me either way, but he did say that a permanent ileostomy was a great option for my lifestyle and all the things I loved doing. I am back to work leading programs and dealing with the ostomy pouch has been completely manageable and no problem at all. And it can't be seen at all under my clothes. I am 100% happy with the outcome and am glad I chose this option.

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-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

My surgeon and family made my decision  as well and talked me into a  j-pouch. Quite frankly, i was so sick they could have done anything to me at that point. While when the pouch works fine I love it but...........you are never really cured of UC and as you can see by my signature it can be quite a ride that I don't always want to be on. Plus, I have had so many c-scans that I'll probably die of cancer.

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UC 1996

      susans53....why do you say you will probably die of cancer?  I had three CT scans done since last March.  Also some xrays and MRI's.  My take on this is...if I were still suffering with ulcerative proctitis...the chances of my getting rectal cancer were far greater than then now are.  I had a total colectomy with end ileo, no j-pouch.  I feel terrific!

Hi Christine,
I have been reading a lot about the dangers of c-scans and the increase in cancer. I too had servere UP and was told that within 10 years I most probably would have developed rectal cancer but the whole point of going thru this surgery was to get well, off meds, and for me it's just been an never ending battle to stay healthy. If I would have keeped the end ileo life would have gone on and I would not have been subjected to an additional 8 scans and multiple x-rays, small bowel, over the years for pouch and adhesion complications. I'm in my late 50's so I guess this is the time you start worrying about all these things. Like I said when the pouch works it is great but it is just like having UP all over again. You are never truely free of UC with a pouch, depending on the number of pouch surgereis the formation of adhesions, and I think that is the point here on going with a ileo or a pouch is just how much you want to deal with.

Post Edited (susans53) : 3/3/2011 6:14:20 AM (GMT-7)

Hubby went into surgery along with the surgeon prepared for the j-pouch process but once he was in there operating for a lot of very good valid reasons not meant to be. We knew this going into the surgery but were a bit disappointed that he wasn't going to have a chance to try it. In his case it was a long 7 1/2 hr operation due to some bumps along the way. It is over, he is healing wonderfully, accepted it immediately when we knew the score, no more surgeries facing him (hopefully) and he is out enjoying life and it is so awesome to be back in control now and not having his life controlled by the UC.

Anyone who is a good candidate and wishes to pursue the j-pouch I think should do so...this way there is no woulda, coulda, shoulda thoughts haunting you. Just go into it fully prepared for the multiple surgeries, amount of time you need to devote to each one to heal and know the possibilities that lie ahead. I understand overall it has a high success rate so that should calm some anxiety. Of course the Dr can evaluate your specific case and his professional opinion has a lot of weight in the decision making process too.

Good Luck

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64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.