Hi there! I was diagnoised with UC at 22 and had an emergency colostomy placed at 25. My bowel perforated and i was left with no choice other than death. 6 months later, at 26, I had a Jpouch formed and the rest of colon and rectum removed. That was this past March. Less than 2 weeks ago I had a take down and am now living with my Jpouch. (Quite happily i might add) It took me about
2 months to adjust and be ok with my colostomy. And another 6 weeks before I was happy about
it. What changed from being ok to being happy was I was finally able to live! I actually could go to work for 8 hours without the anemia making it impossible for me to move. I went to a birthday party where I was standing for 6 hours. I went to a cocktail New years eve party, and even wore a tight sexy black dress. No one knew I had an ostomy until I told them. And I wasn't shy about
it. My surgery wasn't a choice, but it was a blessing. I had absolutely no quality of life before hand. I was addicted to Prednisone, so much so that it wasn't really working. I was sick for months at a time, I always felt tired from my anemia. That all disappeared after I adjusted to my new plumbing.
Give yourself some more time to come to terms. It's ok to grieve for your loss. Hell, I cried every day for like 6 weeks! It gets easier. Especially once you have found an appliance system that works for you. My ostomy was located high, near my belly button so discretion was key. I used adhesive coupling Coloplast Sensura, wore camis or tall undies and my bag disappeared! Once you are fully healed you won't even notice its there. all of the sudden you will have a day where you are able to forget about
it and it will all just become less of a burden. Mine was after I found my new system and went a whole week without changing. It came changing day and I went, whoa, its been a whole week. I completely forgot!
Yes the new body image can be a problem, but only if you let it. You are not the same person you were, but you are better! You no longer have this disease holding you back. I was able to talk to my best friend's mom about
her experience with an ileostomy (she had rectal cancer and was reconnected) and I had this forum and a whole bunch of supportive friends. Lean on those close to you. It doesn't matter that they haven't had the same experience as you, just that they care about
it. To find other young people like you visit yodaa.org/
Its for people under 30 with diversions. They area affiliated with uoaa.org which you can also visit to find local support groups. www.meetanostomate.com/
is another way to find people in your area. As a UCer, remember that Jpouch is more than likely an option. As long as they were able to preserve your sphincter muscles you should be a candidate. But even if you can't or don't go that route, you can still have a wonderfully fulfilling life with an ostomy. If i had to go back to it, I would in a heartbeat. You've come to a good place here; I wish you all the best!!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11