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3 YO orginally dx with UC, had a colectomy and dx changed to IC favoring Crohns..

Fri, July 16, 2010 7:22 AM

Hello (sorry if this is a little long)
My 3 year old daughter was dx with UC last July. She was started on pred. immediately for a few weeks. In that time we did start a low fiber/low residue diet however we didn't really push it since her pedi GI said that at this age she needs the nutrition so if she's eating it you should allow her to. After a few weeks her symptoms were calming down. No more pain, and she wasn't going as much diarrhea. We tried the 5 ASA's, which she had an allergic reaction to and made her symptoms unbearable for her. We had to enter the hospital to start IV steriods two weeks later.
After we entered the hospital she never got better..just worse. The steroids were not working so we had to move onto to the Remicade. She had 3 infusions but none of them were bringing into complete remission. She would feel better for 2-3 days but then it would just get bad again.
After the third infusion it was obvious to everyone, she needed the surgery.

After the operation the biopsy came back and her GI changed the dx..she now has Indeterminate Colitis, favoring Crohns.

Has this happened to anyone else and should I try to put my daughter on a special diet, like an SCD (other than for her ostomy). I just don't know how to avoid this turning into Crohns.
She was only sick for 4 months before needing the surgery. Isn't that really quick? I just really wanted to know if there were other parents in the same boat with such a young child.

katiesmommy
Joined Sep 2, 2009

Fri, July 16, 2010 2:13 PM

Reply posted for Katiesmommy.

I do not have a child with Crohn's or UC. I have Crohn's.

Yes, sometimes the original diagnosis is UC and then it is changed to Crohn's. Some people have a theory that it is a progression. I am not so sure about that. I think that it is difficult to diagnose and that is why a doctor can change the diagnosis at a later date.

I do encourage you to look into the Specific Carb Diet. I really do best on a low low carb diet. Sugar is an enemy. Research probiotics. Make sure she gets enough healthy oils like flax, hemp, and olive oil. Encourage her to eat salmon and other finfish. Aloe juice is good but only use George's. George's has the "green" removed and does not cause the big d.

How is she doing with the ostomy? .

Breezy

breezy
Joined Jan 5, 2009

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