[General
]
31 October, 2009 16:25
Living with Hirschsprung s disease
It's been a few months since Nathanial has come home from his reversal
surgery and he is doing fantastic.
The largest difference between him and his brother is mainly the frequency of bowel movements. Since he is missing two thirds of his large colon, most of the liquid remains in his stool, so it is much softer.... okay... okay - it's more like wet cat food. Also, since things pass through him so much quicker, the enzymes that normally die off in the large intestines, are still active when expelled.
This has increased the number of diaper rashes the poor guy has had. Since he is digesting is own flesh, we don't like him to sit with a dirty diaper on. We have also taken to coating him with a layer of diaper cream on each change to give him an additional layer of protection. If we miss once, he gets a nasty sore.
As for distension and pain, he seems to be getting a lot better. Every now and then he gets stomach pains, but nothing like they were. Obviously, it is hard for us to be certain, the little guy is only one year old - so he doesn't tell us - we have to guess based on his reactions. I think the most pain is from the speed of things moving around inside. You can hear it all the time. Stomach noises galore with this kid! If a gas bubble is moving through and hits solid food, he will get a pain, because there is a lot of pressure at that one point in his intestines. Again, only guessing.
We are concerned that he doesn't get enough nutrition from the food he consumes, but we are still looking into that. We have a dietitian appointment coming up, so we are going to go over things with her.
I think toilet training may be interesting with this one. Since he will figure out that sitting in it is no good, he may be more inclined to train, but on the other hand, with the speed that things move, he may not get as much warning that he should be on the toilet.
Only time will tell.
The largest difference between him and his brother is mainly the frequency of bowel movements. Since he is missing two thirds of his large colon, most of the liquid remains in his stool, so it is much softer.... okay... okay - it's more like wet cat food. Also, since things pass through him so much quicker, the enzymes that normally die off in the large intestines, are still active when expelled.
This has increased the number of diaper rashes the poor guy has had. Since he is digesting is own flesh, we don't like him to sit with a dirty diaper on. We have also taken to coating him with a layer of diaper cream on each change to give him an additional layer of protection. If we miss once, he gets a nasty sore.
As for distension and pain, he seems to be getting a lot better. Every now and then he gets stomach pains, but nothing like they were. Obviously, it is hard for us to be certain, the little guy is only one year old - so he doesn't tell us - we have to guess based on his reactions. I think the most pain is from the speed of things moving around inside. You can hear it all the time. Stomach noises galore with this kid! If a gas bubble is moving through and hits solid food, he will get a pain, because there is a lot of pressure at that one point in his intestines. Again, only guessing.
We are concerned that he doesn't get enough nutrition from the food he consumes, but we are still looking into that. We have a dietitian appointment coming up, so we are going to go over things with her.
I think toilet training may be interesting with this one. Since he will figure out that sitting in it is no good, he may be more inclined to train, but on the other hand, with the speed that things move, he may not get as much warning that he should be on the toilet.
Only time will tell.
