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3 yr old recently diagnosed with colitis

Sun, August 31, 2014 9:49 PM

My son is 3. He has been sick for 3 months. We just got a diagnosis of colitis. The doctor never said it was UC...just said colitis affecting 3/4 of his large bowel/colon per biopsy results from colonoscopy. Dr prescribed mesalamine and said to follow up in 3 months. Is that normal? Take this med and come back in 3 mo? My son is also FTT, and GI doctor said completely malnourished. Do they normally do any kind of nutritional support for patients with colitis? Weve spoken to a nutritionalist, but she just gave us tips on how to add fat to his diet. He's lost 6 lbs since July 2nd, and I'm afraid he's not absorbing much from food. I feel like he's not getting better, and dr's are acting like there isn't much they can do. I don't even know how I feel at this point. I think we are all exhausted.

mamahaze
Joined Aug 31, 2014

Mon, September 01, 2014 2:30 PM

Reply posted for mamahaze.

I can relate to having a young one w/IBD. My daughter had been sick from infancy, misdiagnosed and hospitalized a couple of times and finally dx w/CD @4. She too had suffered from "failure to thrive" and initially we were terribly overwhelmed. It did take some time to figure her little self out. We worked with a nutritionist who helped us begin using a food diary. It helped us pinpoint the foods that agreed/didn't w/her. The nutritionist also helped add calories to each meal as well. What works best for Liz is smaller / more frequent meals. We used to have to encourage her to chew really, really well this helps various enzymes and breaks the food down better inside the mouth and easier on their gi system.

I hear your caution of 3 month follow-up I think that is standard procedure. Of course if there are vast changes and /or you have a question don't hesitate to call. I had our nurse's direct dial programmed into my cell and can't tell you how many times I've used it. We developed a great friendship as she has helped us through our most trying times. We now visit gi every 4 months for standard blood work, exam and to check in. All of this will become routine for you.

It has been 10 years since Lizzie was diagnosed and am happy to let you know she is doing great! Starting high school on Wednesday.

lizzies mom
Joined Sep 9, 2009

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