Deb's Story

When I had my first flare, it wasn't even recognized. I had severe rectal bleeding, hemorrhoids, fissures, and diarrhea. The general practitioner never even looked into WHY I was getting diarrhea. So I had two rectal surgeries at 19, and then the CD flared up big time. The doctor then accused me of dieting. At that point we switched doctors (there were no gastro docs in the area and we were naive in 1971). The second doctor did the upper GI. He thought I had celiac sprue or something, but at least had the balls to say he didn't know and referred me to the University of Wisconsin Hospital.

There I was diagnosed, but weighed less than 80 pounds and had a fever of 104 upon admission. I was there over a month. I was told the cause of my CD was because of my neurosis and would need psychotherapy. I went home on all kinds of meds. The prednisone caused me to be almost manic depressive. I attempted suicide and almost died. I overdosed many times during the period of three years. The therapy was awful! I had therapists that labeled me as neurotic, etc. Finally, I believed I really was nuts and that it was hopeless. Every summer was spent in the hospital with a flare from '71 - '73. I was the poster girl for CD back home. Some well meaning "friend" or attention seeker, started a campaign. My pic was on the news, in the paper, etc. It made it difficult to resume a "normal" life as a young adult. I would get shit if I went out in the bars, like "Aren't you supposed to be dying?" Geeze, sorry to disappoint them! It was difficult for my parents to go out too without stares of disapproval. There was no other known case of CD in my area, and people were so ignorant about it, including the medical profession.

In '74, I went into remission and got off the damn prednisone. The moon face left, and my hair got thick again. I ended up moving back home in 1977 and found a really good therapist who helped me to modify my behavior and to hell with the past. I will always be greatful for that. I also rededicated my life to the Lord at that time. My faith helped me to overcome my suicidal tendencies as a method of dealing with stress. The following year I met my husband to be.

I was in total remission. It is difficult to explain how bad CD can get when it flares. He never understood till I got one. He married me anyway in sickness and in sickness and in sickness! (very little health). I was infertile from treatment for the CD. Jim didn't care about that and we went for adoption. Ended up with a baby with Cerebral Palsy. My baby is 15 now...and is doing very well. Still, put my life on the back burner to get him to specialists and have the surgeries and therapies he needed. He is completely ambulatory now. He doesn't feel sorry for himself, cause he has seen what I've been thru too.

In '85 my sister, whom I was closest to, got breast cancer. She died after a three year battle and my CD flared up big time. Till then, I was keeping it in check by watching my diet and stress, but Danny's CP, my sister's Cancer and death was all too much for me. I had a 7 year flare... could never reduce the prednisone without getting worse. Missed out on holiday events, was tired, in pain, etc. I ballooned with all the prednisone and gained about 50 pounds: all in my face and mid section. I looked grotesque. This too was difficult as I am not a bad looking woman, so my self image suffered as well.

In '95 I received information about the leading specialist in Crohn's and Colitis in the country. My son was 10 and had made the remark that I never felt good enough to do anything. That really opened my eyes and I saw that if I was going to be any good for others I needed to take care of myself! I requested a referral to Dr. Stephen Hanauer. He did his own tests and was unable to finish the colonoscopy because of my pain. My entire rectum, colon and part of the ileum was affected. I decided to have the surgery asap. Good thing as there were cancer cells in my colon as well.

With the ileostomy, I developed a fistula. Probably because of the crohns.

Basically lived with two shitholes for a year, until I couldn't stand it anymore. Got a revision in '96 and then felt the best I have ever felt in my life! This year the ileum started to work itself up to the stoma and would get blocked so I had another revision. Now my ileum is sewed tight to the muscle wall and has a tendency to narrow... hence my pain. My stoma is also too close to my beltline and that causes discomfort as well. The skin is always sore as the damn thing is hard to get a seal around and is very tipped. So that's my story and I'm sticking to it!

Sincerely,
Deb

PS. Deb has a Yahoo Club for ostomates at http://groups.yahoo.com/group/ostomysupport. Check it out if you get the chance - it's a great way to get to know some fellow ostomates.

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