I had a permanent ileostomy last November-- a month after having a severe flare that stopped responding to my usual meds. Remicade helped end my flare, but gave me horrendous joint pain that I could not live with. The months after surgery were hard. It took some getting used to the pouch and learning how to change it and take care of my skin etc. I had some incision complications, but they resolved after four months. Now at at about
9 months, I feel completely normal. My appliance doesn't leak and I don't have skin issues. I empty my pouch every 4-5 hours and there is no urgency to do so... I can usually wait an hour or so if I am not in a convenient place to do it. I wear my regular clothes. Other than eating gluten-free due to also having Celiac Disease, I eat a normal diet. I am out living my life and feel better than I have in the six years since being diagnosed. Whether or not one can officially call it a cure, I do not feel like I have UC anymore. I can't tell you when the right time would be. I knew when I was done with UC and wanted to have surgery, but it is going to be different for everyone. It is best to not be in the midst of a bad flare when undergoing surgery though, as it can lead to more complications.
I have no regrets about
surgery. It was one of the best decisions I ever made.
Maybe you have already come across this, but here is a link to my blog which shows my experiences getting back into the activities I love after surgery.
-39 years old
-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 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010
Post Edited (Blueheron) : 8/7/2011 9:25:50 PM (GMT-6)