[...]Jpouch Life: Stories of Colitis, Crohn’s, IBD, Ostomy, Ileostomy & J-Pouch Surgery from around the world[...]…

Elise

Burberry is just bigger than an inch right now. 1 1/8th inch was the last measurement. She is quite beautiful according to her many admirers. I wonder how much smaller she will get?? I can’t believe I missed the circus! I love the circus and on the moon! Dern!! My diet is pretty regular, I just can’t eat as much as I used to. I am still on prednisone, so I want everything. I can’t wait to be off of that, I have been on pred since January! I go for my post-op visit at UVA on Wednesday.

Elise

To answer some questions: I was diagnosed with Crohn’s disease in 1996 at Yale University Hosptial, I moved around and had different doctors in NJ, CA and finally Virginia, my symptoms were always in the large intestine. One time in 1998 I had a fistula and it came through my belly button. It was quickly closed without surgery (Flagyl), and I was on my way. I was well controlled on medicine, mostly Asacol and 6mP for most of my time with IBD. It wasn’t until 2 years ago that things really ramped up. My GI physician here was just positive that I had Ulcerative Colitis, even the promethieus test favored UC with its markers and so have all of my numerous colonoscopy biopsies and cat scans. So, I trusted the docs, I always brought up the fistula and they said it could have been something else. The surgeon said if he found a mass just under my belly button then he would believe it was a fistula. He did not find a mass, he just felt that my colon once it was out had really thick walls, and it was in horrible condition. The thick walls is what concerned him and stopped him from creating my J-pouch, because UC only affects that inner layer of the intestine and Crohn’s goes through many layers. So that is my path to my diagnosis. I had what they called Indeterminate Colitis.

The most frustrating thing right now is I think my stoma might be too low, it is level with my belly button and the bag is right where my bend is. I want to roll it up – oh I hate it!! I have been told it can be moved, but what the world!! Haven’t I been through enough???? Dern (southern for darn), I also think my home nurse cut my flange too small yesterday, Burberry is upset. But other than that I have been doing quite well. I hope I keep adjusting and figuring out how to feel ok with this and not be self conscious. I really love all of you so much, thank you for caring about me like you have. Happy 4th of July!!!!

Elise

I read your story and thanks for sharing it. I have had UC for 7 years and going in the surgery in 30 days. Did you have UC first and then it developed in Chrohn’s?? Is that why they removed the colon? It appears that way. I am surprised they didn’t do a CT scan in Radiology to test it first. I had a colonoscopy done by the Mayo clinic and my lower part of the small intestine was inflammed along with my whole large intestine. I need to do the scan in a couple of weeks to make sure I don’t have chrohns also. What were your symptoms? I am being told if I have Chrohns, they won’t do the surgery???? Looks like you had your’s done. Where did you go? Enough questions, I am sure you will get used to the bag, if I end up having to live with one the rest of my life I will be ok with it at this point, I am sick of feeling sick all the time, my life has been horrible for the last 8 mos. with 2 flare up’s, haven’t been able to work or do ANYTHING hardly. The important thing is feeling good enough to live your life, if you do, that’s worth a million, hang in there, look forward to your response. My email address is dalesko3790@gmail.com, thanks.