For those who do not know me, I run a support group for parents whose kids have Hirschsprung's. For those wanting to know what this disease is read this. Briefly it is a disease where the bowel cannot contract and so bowel motions cannot pass out of the body. No it does not just mean severe constipation, children can die from it. The only help is to remove the effected bowel from the rectum upwards until you find good bowel. In the most severe cases this could mean the whole bowel & intestines or 99.9% of it. Those so badly affected it means either a transplant, where the outcome is improving but still not very high or TPN feeding, feeding by a tube directly into to stomach or heart.

Luckily those cases prove to be a very small percentage. After having the pullthrough operation most children go on in time to have a full life but Hirschsprung's will always be there in the background. One of the most common problems is the bottom. Not because of operation directly or the almost constant inference with for very valid medical reasons. No, it is because the child can have so many bowel motions, in the early days usually uncontrollable. These motions are not like yours, fully formed but these are watery some striaght out of the illeum which means they burn the bottom. Think of having the hottest curry and multiply it  by say 10, and this happening 20, 30 times a day, even in their sleep. Welcome to post pullthrough Hirschsprung's in very bad cases but this does happen to varying degrees in most cases of Hirschsprung's. The operation can happen  at a very early age, 2 or 3 days old, the oldest person who had the operation that I know of was 56. Most have the operation pre-teen.

Over the years that I have run the group various preparation have been recommended some work until the motions calm down and normal service resumes, others work for a while and then something else has to be found. Some of the receipes are Lard & cornstarch,  Metanium,Orababse and vaseline, Orabase. The best seems to Illex but it is very hard to get in the UK and chemist have to import it and so getting it on the NHS is hard.

What has caused me to write this blog. Well I know a young lad who is 4, spent a good bit of time in hospital, one spell was about 6 months last year. This year, in and out of hospital. Just as you think things are improving he has another crisis. Yesterday was in reality a small one for him. He was screaming his head off for hours because his bottom was so sore. All of the usually potions did not work. Eventually he went off to sleep by sheer exhaustion. Apart for the child what does this do to the parents? Your child is screaming and nothing you do helps, you see his bottom bleeding because of the burning motions. Such normal things as Imodium does nothing either, it is not even a plaster on the problem.

Another parent even though her child has a stoma (where the bowel comes out and goes into a bag to collect the waste) still has motions coming out that is burning the bottom. Again trying to find something to stop the child crying.

As I said at the beginning, this is just a minor problem of children with hirschsprung's but a heart breaking one for the parents, the children  and yes me. We all feel so helpless.

I know their pain as I too have Hirschsprung's. I have had for 59 years and at times over those years have had those bottoms too.

No, Hirschsprung's is not just constipation.