UC - ileostomy

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Regular Member

Date Joined Aug 2007
Total Posts : 277
   Posted 3/7/2008 11:47 AM (GMT -6)   
I have had UC for 17 yrs..This last year has been one big flare!  In hospital 2 times.  I dont ever want to go back.  I have been reading these boards and mentioned to my Dr I want to talk to  a surgeon and be prepared.  Can any of you who had UC and an illeostomy tell me you are glad you did it?  Was the surgery awful? recovery?  Is life better now?  Is it better or worse than you thought it was going to be?  Thanks
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 20m, Azathioprine 100m (started 1/9/08) levsin

Regular Member

Date Joined Jul 2007
Total Posts : 280
   Posted 3/7/2008 10:07 PM (GMT -6)   
I had UC for 16 years and was in the hospital 3 times total, mine was located mainly in the rectum. I Had more remission than flares, but the last one really did me in and my entire colon was inflamed. My surgery was an emergency as I had dropped 30 lbs and was passing out and no meds worked anymore. I always said I would never have the surgery, but I really didn't have a choice. After they removed my colon in August, I really didn't have a lot of pain (thank God for the pump) and I was in the hospital for about 5 days after the surgery. I was just so weak from all the weight I had lost that it took me about 4 months to feel stronger. My stoma never gave me any problems although it was difficult at first to look at, but after about a month, I felt like I was a pro.

I recently had a second surgery to form the Jpouch and that surgery was more painful for me I think due to opening up the original incision (I had an up & down c-section scar and they did both surgeries across). The stoma is closer to the skin now and constantly going so the skin is more irritated and it's a lot harder when I have to change my wafer. Before my output was thicker and I could eat anything, and I now have to take Imodium to try and keep things thicker so I don't dehydrate.most

With both of these surgeries I have also lost a lot of my hair and had to cut it short which upset me a lot at first, but I am trying to look at all of this and say that it's only temporary.

I am due to have the take-down surgery in April and I know there are issues with frequent bathroom visits and butt burn, so I think that with every step there are issues to face. I know that it will never be the same as when I was in remission, but from other posts and websites I have visited, most go on to lead very normal and active lives.

I hope that if you do have the surgery all goes well for you and you recover quickly. I think that the healthier you go into it, the better off you will be and if you have any other questions, feel free to ask. It sounds like you have suffered for such a long time and I hope that you can get some relief as soon as possible.


Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 3/8/2008 12:00 AM (GMT -6)   
i had UC for 8 years and I wish that i would have had the surgery the first day i saw blood! it's been great. Surgery is not fun, nor is the recovery, but you get nice drugs, morphine is your friend, lol. And the surgeyr pain only lasts for a few weeks, versus the UC pain that lasts a life time. I am sooo glad i did it, life is sooo much better!
it's been almost a year since my surgery and i still find things everyday that I am thankful for finally being able to do. Like, we are going to the mountains, and i can go do things with my son, without worrying about finding a bathroom. My main problem, i can finally eat whatever and i can't stop eating, lol.
it's better than i thought it would be, because there are so many things that i didn't realize i was missing out on before i got the surgery.
good luck!

Veteran Member

Date Joined Feb 2003
Total Posts : 1251
   Posted 3/8/2008 1:37 AM (GMT -6)   
I had UC for 5 years before my op. There is not enough money in the world that you can give me to make me go back to those pre-op days! I had mine done when I was 10 years old so my recovery was a bit quicker than an adult's would be (kids are more resiliant after surgery usually) but I was back in the pool swimming 4 weeks after my op.

I can do anything I like, eat anything I want without pain, no more meds, no more running to the loo and hoping I make it on time. My only regret is that I have no excuse to get any reading done while in the loo - 2 minutes and I've emptied my bag and I'm out of there!

My parents' biggest worry was that one day I would turn around and say to them 'Why did you let them do this to me?' I never have - it was the best decision they ever made for me :)
I have had an ileostomy for 32 years now due to UC.
Moderator of the Ostomy Forum
I'm not a complete idiot - some parts of me are missing!

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 3/8/2008 5:26 AM (GMT -6)   
I had Crohn's in the colon and rectum for 7 years before having surgery. I tried every medicine and diet to try to save my colon, but it was just too diseased.

I have no regrets about having surgery, because I feel so much better now. I can eat whatever I want and don't have to run to the bathroom anymore. I can sleep through the night without having to get up every hour to go. I don't have to take any medicines, which also means there are no weird side effects to deal with either.

I wish I would have talked to someone who had an ileostomy years ago, so I wouldn't have been so scared. That's what's so great about this forum! You can meet people who have gone through what you're going through and can tell you that life is so much better now.

I had my surgeries done in two steps. First, we did the ileostomy. Then, eight months later, we did the proctocolectomy (colon and rectum removal). The only reason why we waited was because I was still hoping that my colon would heal during those eight months, but it didn't.

Another thing to consider is the increased cancer risk that happens the longer you keep your colon. When it's gone, it eliminates that risk. Plus, surgery is a cure for UC.

Good luck with your decision, and please ask us any questions you may have. If you want to see pictures of us, you can visit our web page at www.photobucket.com user name: crohnsdisease and password: 6mp3asa.

Take care,
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)

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