I've popped in here a couple of times from the Crohn's forum, but I think it's time for me to get more involved on this side of the situation. I've now officially failed every single drug approved for Crohn's, except oral steroids (but I have osteoporosis, so...). My doc had me on methotrexate for 6 months and today we did a colonoscopy to check progress. My sed rate was staying around 70-78, so he wanted to go in and see if that was actually what the inflammation was. Sure enough... Starting at the middle of my left side and then all the way down to the rectum is one big gigantic solid ulcer. I have a few ulcers scattered here and there further up toward the ileum, but mostly it's in the rectal area. i've relied on pain meds to get me through years of this. I lost Remicade in November of '06 and have not stopped flaring since. Even after a week in the hospital last summer with mega doses of methylprednisolone, this is about the best I get.
I have low grade temps - hovering around 100 by the end of every day. I am a single mom to a 12 (almost 13) year old. I guess I figure it's time for me to go back to *living* life.
I'm not ready to do a permanent, so I'd go with a temp ostomy. I guess I'm just wanting to introduce myself, get words of advice and read about others who have found life after ostomy! ;-)
So, if any of you had a temp ostomy, I'm curious how it was after the surgery? Since I'm so ulcerated, I can't believe that the pain from those ulcers would disappear right after surgery. about how long would it take to heal the colon after the stool is diverted into the ostomy?
Any other words of wisdom? Part of me is completely and utterly terrified. Terrified of how it will impact my life in ways like dating, which clothes I can still wear... The other side of me is just ready to not have to worry about incontinence, pain, potential side effects from medications. Plus, I was super active before Crohn's took control. I miss running, camping, hiking, skiing, etc.
Thanks in advance!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09