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Seeking Parents of Young Children With Ulcerative Colitis

Megan from KC fI live in KC and am mom to an amazing toddler recently diagnosed with ulcerative colitis. Even though I have a brother with severe UC and have decent knowledge about the disease, it is another thing entirely when it is your child and such a young one at that. I am devoted to finding the answers and doing all I can to help my sweet boy thrive. I am also a self-employed attorney in my free time.

Hello! I am writing for help for my young son who has Ulcerative Colitis.

Recently, following a long multi-hospital stay, my 12 month old son Colin was diagnosed with ulcerative colitis (technically called very early onset inflammatory bowel disease (VEO-IBD)). We were originally admitted in our hometown of Kansas City (Children’s Mercy Hospital). We had spent the previous two weeks going to urgent care, the pediatrician and the ER. The initial diagnosis was a milk protein allergy. When Colin did not improve, and taking into account that he has both an aunt and uncle with UC, it turned to inflammatory bowel disease (pathology from the colonoscopy was indeterminate). We were at the hospital in KC for almost a month and, after a heavy dose of steroid, total bowel rest with TPN feeding and a blood transfusion, his initial flare-up got under control. We were then sent to Boston Children’s Hospital to confirm the diagnosis and experiment with treatment. He had another upper and lower scope and lots of bloodwork esp genetic testing. They started to taper his steroid and try a maintenance medication to which he has responded. We were sent home where Colin is currently on a maintenance therapy of sulfasalazine, rowasa enemas, vitamin D and folic acid. I also give him a probiotic recommended by our Boston doctor.

He is much improved and seems to be in remission but we are still having some issues. In particular, he is constantly gassy and seems to be in pain from it at night. I don’t know whether it is diet related or something else. Unfortunately, because the disease is so rare at his age as well as so individualized, I am not getting a lot of answers and can’t find much online. I feel very alone trying to figure this all out and it is so difficult because my sweet babe can’t talk and tell me how he feels. I am seeking out other parents who have had very young children with this disease for support and information. Thank you

written by Megan

submitted in the colitis venting area




child

8 Responses to Seeking Parents of Young Children With Ulcerative Colitis

  1. Ravi S Pandey February 20, 2016 at 4:57 pm #

    For excess gas formation ,you can try chewing fennel ( or fennel tea).Your son will like the taste of fennel and its fatty acids will relieve flatulence.

  2. Adam
    Adam February 21, 2016 at 12:55 pm #

    Megan,

    thank you for sharing your story about your son.

    I wanted to point out that there are many “parents” stories on this link here from the site:

    http://www.ihaveuc.com/category/parents-with-colitis-kids/

    Best,

    Adam

  3. Andy February 22, 2016 at 5:59 pm #

    I guess at 2 years old he would be eating quite a few solids. What I do when I have gas is cut back on anything with fermentable fiber. That means basically meat/eggs/fish and rice. Be careful not to use reheated rice as it form resistant starches which also cause gas.

  4. Amy March 3, 2016 at 6:23 am #

    Hi Megan,

    I can feel your pain because I too lived through what you are going through. My son was diagnosed with UC at 22 months of age…he is now 15. There are a large group (too large) of mom’s in my area that I met through the CCFA that support one another. I highly recommend looking into this so you do not feel alone. The thing that has frustrated me the most over the years is that there are no clear cut answers. Everyone with the disease seems to have different triggers and experiences. Gas has been a constant from time to time and I have tried keeping a food journal to see if there is anything specific that causes it. Probiotics are supposed to help with gas, but doesn’t always work. Good luck….you are not alone xo

  5. Shannon March 30, 2016 at 6:38 am #

    Megan…

    My daughter just turned 1 last week. She was diagnosied in January. We are in the middle of a terrible flare and starting steroids this week. I also feel alone and so scared. I live in the Omaha area.

  6. Megan from KC
    Megan March 31, 2016 at 11:03 am #

    Shannon – I am so sorry to hear it. I have lots of questions and some info for you if you want to email me: megan@mharringtonlaw.com

  7. Christiana May 12, 2016 at 7:36 pm #

    Hi, my son was born with UC but not officially diagnosed until 6 months old. He will be 2 years next month and I totally feel your pain. Our stories are pretty much identical! I live in Boston now and he is now being seen at Children’s. If you want to connect let me know.

    • Megan from KC
      Megan May 18, 2016 at 7:13 pm #

      Christiana: I would love to connect! Who are your doctors in Boston?? My email is megan@mharringtonlaw.com or I can give you my cell number

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