Discussions By Condition: Medical Stories

Hirschsprungs Disease (Rare type)

Posted In: Medical Stories 0 Replies
  • Posted By: Fresky
  • October 28, 2010
  • 03:59 PM

I was born in an English army camp in Germany with both parents in the Army. Withing 48 hours and I had passed solids though me my mum knew something was wrong. Even though my belly was swollen the doctors just said I was constipated. My dear mum and dad had to bend me over for me to pass solids and even this was just something minor acording to the doctors. This went on for 18 months with weekly visits to the doctor in wich they nearly locked up my mother thinking that she was doing me harm or going to. Luckly for me a doctor come visiting the hospital where I was that day and within minutes of seeing me I was diagnosed with Hischsprungs Disease. I was rushed from Germany to Great Ormand street hospital in London where I had a pull through operation and a colostomy, it was found I had a rare form of Hirschsprungs Disease where patches of cells died in the bowel and not the normal ring around the bowel so it was difficult for them to find the infected areas. I had that for 18 months and was put back to normal. I grew to the age of 6 with very little growth and constant toilet trouble so again the dissision was made to put me though another operation. Again I had another pull through and another colostomy but by this time I was very ill so I ended up having the colostomy for four years with constant trips to the hospital. The worst part was going six months with nil by mouth stuck to my bed and the dinner table was by my feet, you won't believe how much you miss food untill this happens. By the age of ten I had my colostomy put back so I was normal again. Nearly instantly I started to grow for what felt like the first time in my life (at this time I was only just over 3 foot tall). I've been told I need another operation but with already missing so much school I decided not to have it. I'm now 35 and 5 foot 7 tall, still having problems, mainly being blocked by trapped wind where I have to do a handstand to get rid of it :o. With having growth issues in the past I've also been diagnosed with arthritis since I was 18 in my hands back and knees and everywhere else is double jointed due to my bones not growing right but my cartilage carried on growing normally. My toilet habbits aren't normal by far with only going once a month. I'm still living life to the max though and always will, I've spent alot of my life in hospital and will rest when I'm dead :D I don't dwell on my past and have never really talked about it untill recently with my mother and now I'm telling my story on the net for all to see. I hope I can ease other people who has gone though simular as I have and are afraid to speak out. I say live your life to the max, with spending so much time in hospital I've seen people suffer worse than me.

Reply Flag this Discussion
Thanks! A moderator will review your post and it will be live within the next 24 hours.