constipation

[Guest guest]

Hi W

Thank you for your concern regarding my post about Miralax. I actually have

an extenuating circumstance that I've been meaning to post to this group to

see if anyone can relate to but this is all recent news to me and it's quite

painful to talk about. I'll take this opportunity to ask anyway because

someone here may be able to provide me with some info.

My son was just diagnosed a few weeks ago with Pseudo Obstruction

Syndrome. Basically, none of the nerves & muscles in his colon that are

supposed to work together to move the stool through are working. He has

zero motility in his colon. Because of this, the only way at all to get his

stool to come out is by having it leak out watery. It's a pain to live with

but the alternative is that he gets impacted. I've tried and tried to

adjust the dosage and if it doesn't come out like water, it doesn't come out

at all. My poor son has had every test in the book over the past 3 years in

NJ. In June, we had to move to Massachusetts so I went into a specialist in

Boston who is supposed to be internationally known, well published, etc..

and within one visit, he had it pegged that it was a motility problem. I

have a lot of anger for my old dr. who had put my son through every test in

the world and couldn't figure it out. My last visit with him before he left

ended with him telling me that I had to get a lot of fiber into him and to

get him to sit on the potty more often and that some kids were just

chronically constipated. Meanwhile, my son's stomach is so distended that

he looks about 8 months pregnant. Anyway, that's why I have to keep the

Miralax so strong.

My question to the group is: 1. Has anyone ever heard of or known someone

with Pseudo Obstruction? 2. My son will have to have a Cecostomy for

several years and I'm wondering again if anyone knows anyone with a child

with a cecostomy so I can pick their brains? My surgeon told me it's

basically the same type of port used as a feeding tube. If the cecostomy

doesn't do what we hope, he'll have to have a colostomy. I'm quite freaked

out about the whole thing. Never in my wildest, worst dreams did I imagine

that my son's constipation could be something so serious. I also hesitated

to post this because I don't want to scare anyone out there who has a child

with constipation. My new gastro. told me that the reason my old dr. didn't

catch this is because it is quite rare. If I could suggest one thing

though, it would be that if you have a child who is unresponsive to every

conventional type of constipation remedy as my son is (nothing ever worked),

just ask your dr. if he has ruled out a motility disorder. There are many

different types (as I'm learning) and I wish I had known more before.

Sorry so long but I've got a lot on my plate here. If anyone can share any

info. with me on Pseudo Obstruction or cecostomy's, please let me know.

Thanks in advance!

in MA

kdr2@...