Well- I am three weeks post permanent ileostomy surgery (and one week post-surgery to have my incision redone when it
opened down through the muscle layer due to Prednisone) and have some random thoughts...
-It is hard to not be worried about every little pain. I wish I had a camera inside me so I could see what was going on:)
-I am changing bags fine and have not had any major leakage issues (other than a few caused by incision drainage weakening the seal). However, I can't help but worry about what is going on underneath the wafer in the three days I have between changes. Did I get my barrier ring on correctly? Did I cut the opening perfectly around my stoma? Every time I peel off a bag I hope I don't fine a huge sore because I made a mistake. So far so good, but still. When do you get confindent with all of this?
-Sometimes when I eat I think, "do I really want to eat this because it is going to make my appliance fill up." I am finding I have to empty my appliance a lot, but then again, I am eating quite a bit. I lost weight during surgery and my surgeon also told me my protein reserves are quite low so I have been eating more tender meats, eggs and protein drinks than usual to aid in healing. I also realize that output changes as the body adjusts to the surgery. I still wonder though if someday I will just be able to eat normally without analyzing it so much. Of course- I know I won't have to think about what I eat as much as when I had UC!
-I can't believe how much output changes in appearance throughout the day. One minute it is liquid and one color, the next moment it is like toothpaste and a completely different color. I had no idea it would vary so much. It is very strange getting so up-close-and personal with your wastes:)
-I felt I was completely ready for this surgery psychologically... even excited since I was so tired of feeling so sick from Ulcerative Colitis and medication side effects. I researched extensively and really wanted the permanent ileostomy. I am still completely satisfied with my decision and have no regrets. Still, I have found myself getting a little depressed and teary-eyed which has caught me by surprised since I am normally a really positive and happy person. Mornings are the hardest. I wake up and realize my appliance is permanent and that I am going to have to deal with this the rest of my life. I am hoping as time goes on and I see I can do everything I did before that this feeling will go away. Right now though it seems like life revolves around pain medication schedules, dressing changes, appliance changes, eating and emptying. I can't wait until I can get back to my normal routines.
-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