12-Year Old Son Recently Diagnosed

I had never even heard of colitis until my 12-year-old son was diagnosed with it.

He had lost a tremendous amount of weight over the past 6 months, was refusing to eat or would throw up after eating, and was extremely (what we thought) lazy and irritable. His pediatrician ordered a string of blood tests and he was found to be anemic and his iron levels were “alarmingly low”. We were told he possibly had celiac disease. When we saw the gastroenterologist he said he suspected Crohn’s Disease and we were sent that day over to the hospital for a blood transfusion, endoscopy and colonoscopy. We spent the entire week — the week before Christmas — in the hospital. My son was extremely cooperative and had an uncharacteristically great attitude during the entire stay. After the procedures we looked at the photos and saw his large intestine was inflamed and covered in ulcers. We felt so bad and so guilty about how we had been on his case so much in the prior 6 months about lying around all the time and being lazy.

He’s now in the process of weaning off prednisone and has been on iron and calcium supplements plus a prescription prilosec. The change in him has been unbelievable. He’s back to being a very pleasant and cooperative person now and seems so much happier. He plays hockey and is on his school swim team, and has so much more energy than before. He was a picky eater and I’ve always been a little on the crazy side about nutrition and healthy foods, but now he is much more open minded about trying new foods that are good for him and about giving up foods that are not. He’s back to the wonderful boy he used to be. We felt so confused and alone with the diagnosis — and scared with all the horror stories on the internet. We kept our friends updated during the ordeal and were amazed at how many of them knew people who went through the same thing. I was introduced through friends to other people whose kids had also been diagnosed and it helped give us an idea of what was to come for us — and their stories ended up well. That gave us a lot of hope and reassurance.

Colitis Medications:

We are gearing up for 6MP. I’m hoping that at some point in the future after he goes through puberty, that we’ll be able to control the UC with diet.


written by Hayley

submitted in the Colitis Venting Area

5 thoughts on “12-Year Old Son Recently Diagnosed”

  1. Hi, can you share a little bit more information on what your son’s diet was in the months prior to being diagnosed with colitis?

  2. I couldn’t imagine going through this at age 12. I’m 33 and had UC for 9 yrs. Just last week I started 6MP. And I’m still terrified as to what the side effects will do for me. My heart goes out to you. Does your son have anxiety? Is he a mellow kid or is he hyper? Was just wondering if he internalizes his emotions?

  3. My 7 year old daughter(not colitis diagnosis but other gut issues) did well on the SCD- don’t be afraid to try it. The book is easy to read with good recipes. I use a lot of the recipes for the whole family. Hope all goes well- don’t forget probiotics _ my daughter takes 2 double strength VSL #3 packets a day. Has been great for her and colitis husband.

  4. I was diagnosed with UC at age 13. I am now 52. You have so much information at your beck and call…make use of it! I really think what he eats will be the key to his health. Dairy and gluten seem to be the big triggers. Good luck and I am so glad he is improving.

  5. I’m so sorry to hear your son has developed this disease so young, but on the bright side, I’m sure many of us on this group have had it since we were teenagers and are still fit and well (I was 17 and am 48 now, and my colitis went undiagnosed until I was 44). I don’t really think there would be any problems putting him on the SCD before puberty – it’s a very healthy diet with plenty of calcium for growing bones, etc, and it would enable him to get used to it early. Good luck with the medications – definitely good to wean off the Prednisone if possible.

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