hey a few years ago i was diagnosed with Neural Intestinal Dysplaysia (a genetis disease) and as i hit puberty it has started to well clear up give me more control over my bowels so i was wondering if anyone has/had this genetic disease and if there in puberty has it started to get better or gone? i know one other kid with this and the hospital introduced us but that was YEARS ago and we lost contact so i have had no one else to ask
I haven’t heard of anyone here with that type of problem. Tell me a little bit about your experience with it. I read over the pages in the link you supplied but thought it would be better hearing it from you.
How old were you when they diagnosed it and how old are you now? Did the doctors say it would get better with age or will you have to deal with this the rest of your life?
i was about 13 and im 16 now and since i was one of the oldest people with it there wasnt that much info they could give me about what would happen as i got older but it affected my life GREATLY even before i was diagnosed because you could either not control it coming out or it wouldnt come out so i would have accidents at school and stuff like that cause i couldnt control my bowels and the only thing they could give you was laxatives just to clear you out but when you took them the first night it would hurt like hell even with some asprin so if you forgot to take the tablets one night well you had to go through it again so i stoped taking the tablets then i found out if my bowels got really full they could break and kill me from poisening my blood so i had to take them but as i got older i become used to the tablets so they would have to give me more powerful stuff and i would get used to that so to start every school holidays was a trip to the hospital to clean me out with some of there really fucking powerful stuff but also as i got older i needed the tablets less and less and i got more controll in my bowels and well now i havnt used any medicine for about 1 year and i was wantong to know if anyone else that has/had it is getting better
I really don't know anyone who suffers from that. You're the first.. How trying and difficult it must have been for you. You are a solider!
It looks like there is a support group in Victoria. . You might want to give them a call. I'm sure they have several options for you there.. I’m sure they would be able to put you in contact with others who suffer from the same thing as you.
Good luck dude and keep us informed... Okay?
Check this out…
I don't know much about your illness, and I'm glad that you're having an easier time, and not needing laxatives as often, but if you do, rather than taking laxatives all the time, would an enema be easier on your system? (I'm not sure that it would be compatible with NIDS though, so it would be a question for the doctor.)
<i>Our lives begin to end the day we become silent about things that matter.</i> -- MLK