I had a couple complications with my incision after surgery, so it took me four months to heal instead of the normal two. Still, my ileostomy worked perfectly from the beginning so that is all I ever cared about
. I knew incision complications would eventually work themselves out.
I chose a permanent ileostomy, even though I would have been a candidate for the J-pouch. Didn't want to deal with the possible complications or multiple surgeries of the j-pouch option. Also thought an ileostomy would be more compatible with my lifestyle and job... and it has been. There are no frequency or urgency issues with my ileostomy.
I have had no major skin issues, only one appliance leak (right after surgery due to wound drainage getting under the appliance wafter) and my stoma is the perfect length and functions beautifully (I went to a top CR surgeon so I thank him for this). I am so happy with the results. I don't spend any time in the bathroom except to empty about
5-6 times a day... but these trips are faster than any bms I had with UC. Not to mention there is no urgency. Sometimes if I notice the pouch is getting full and the time isn't convenient for emptying, I can still wait an hour. Plus, I can plan trips to the bathroom. For instance, if I know I have to do a two-hour presentation at work, I will just empty beforehand. I still wear all my old clothes including my skinny jeans. No one could tell I have an ileostomy unless I told them. My stoma was marked in the perfect spot.
As far as activities, it took me a little while to get back into things because of the incision complications, but now that I am healed and 5 months post-op, I am getting back into everything. I went snowboarding last weekend, have been hiking like crazy, today I am packing for an overnight backpacking trip. By the end of summer, my surgeon said I can rock climb and trail run again. There will be changes to these activities to deal with the pouch (emptying on long rock climbs for instance) but I am not one to let stuff like that stop me. I figure out a way. I work as a park ranger where I lead 2+ hour hikes and nature programs for the public. I have had no issues dealing with my ileostomy at work.
The one thing with exercise (and always) with an ileostomy is that you have to stay hydrated. That may be the cooling off thing you were referring to. Without the colon, water isn't reabsorbed into one's body (a lot of it ends up lost in their ostomy pouch) so one has to drink more. Eventually the small intestine compensates to some degree, but it never becomes as efficient as the colon so one always has to drink more. This just takes some self-discipline and has not been a big deal for me. I just drink a bunch and always have water in hand.
The main thing is that I feel wonderful. I am no longer sick and anemic, in pain or taking medications and dealing with their side effects... which were very bad for me. I was unlucky in that the joint pain from Remicade was worse than UC for me.
Still, I am thankful everyday that the Remicade, even with its horrible side effects, got me out of the hospital and allowed me to see a top surgeon at a later date when I wasn't in such bad shape. I know that emergency surgeries don't always have spectacular results because the body is so weak and they are often done by general surgeons. The general surgeon that would have done my emergency surgery seemed very knowledgeable and super nice (he checked in with me everyday during my hospital stay just in case I had questions). However, the top CR surgeon that my GI really hoped I could see worked out of a different hospital. Problem was, I was too weak to transfer to that hospital. So fortunately, the Remicade worked to at least buy me some time and allow me to see that surgeon. He turned out to be amazing... one of the best doctors I have ever worked with.
You are doing a great job at researching options ahead of time. I barely had time to do that, though once I found out my predicament, I was on the computer 24/7 researching from my hospital room so I could make educated decisions... I posted on forums, I called people I knew who had this type of surgery, or friends of friends who knew people who had surgery. I called friends who had experiences, both good and bad, with Remicade. I wanted to be as educated as possible and in the end it paid off. I am so happy with all the decisions I made and have no regrets.
I think you are wise to go to Mayo Clinic. They will be able to give you all the support you need. If it did come to surgery... you could be confident that you were working with a great team of doctors and surgeons... or if you have luck with the medications, they could guide you in a good direction with drug options as well.
-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
Post Edited (Blueheron) : 4/10/2011 12:26:23 PM (GMT-6)