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The Rare Disease That Doesn’t Give a Crap

Ben has Hirschsprung’s Disease.  That means his colon didn’t form right which gave him severe constipation as an infant.

Hirschsprung’s is a rare disease which is more common in individuals with Down syndrome. It’s normally detected in the first week of life, but that wasn’t the case for Ben. He lived 15 months undiagnosed, and by the time we got an accurate diagnosis he qualified for a Failure to Thrive diagnosis at just 15 pounds he was under the first percentile for weight for his age.

He had an endorectal pull-through surgery when he was 15 months and we were under the impression that the surgery would fix the problem and he would be good to go.

Ten years later that hasn’t been the case. He has bowel incontinence and has to have his large intestine flushed out daily to keep him from having accidents. The accidents he had made for many diaper changes daily and frequent, painful skin breakdown on his bottom.  He had another surgery in 2014 called a MACE, so that we could do his bowel flushes through his belly button. The flushes take about an hour a day.

This post is fact heavy, with links to clarify all the technical terms, but this is also about what Hirschsprung’s means to Ben as a child and us all as a family.

Ben is a ten year old boy who has to sit on the potty for an hour a day, every day. He does this whether we’re camping, on vacation or at Grandma’s house. Even after two major surgeries for the disease he has to live with daily discomfort and stress from the disease.  If he has certain symptoms he has to go the emergency room to rule out serious complications, and this will continue for life.  Hirschsprung’s is a beast of a disease which steals quality of life and health. Many families affected by the disease face the same challenges we do. It’s not something that’s made an awareness issue because of the sensitivity of a disease that causes bowel incontinence, but even with the delicate nature of the disease it’s important to share, to understand, because this is Ben’s life, all of our lives, and the lives of others like us.

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