Discussions By Condition: Medical Stories

My life with Hirschsprungs

Posted In: Medical Stories 1 Replies
  • Posted By: Fresky
  • November 6, 2010
  • 01:41 PM

I was born with Hirschsprung's disease (HD) but I wasn's diagnosed with it untill I was 18 months old. I had a rare form of HD where the disease attacked in patches on different parts of my bowel insted of rings arond the bowel.
I could pass solids but only with bending me over or by sqeezing me like a toothpaste tube, this puzzled the Doctors and blames my mum for not feeding me right. My mum knowing something was wrong took me to hospital on a regular basis but nothing wrong could be found untill a visiting doctor diagnosed me and gave me two weeks to live. At the time I was in Germany where my mum and dad was serving in the Army and I was rushed to Great Ormand street hospital in London where I had my first colostomy and pull though operation.
I spent 18 months in hospital untill they thought I was strong enough to have my colostomy reversed. I started to recover well but my growth was very slow, my arms and legs didn't grow very well and I was cursed with a pot belly, basicly I looked like a starving child. I was having regular visits to the hospital and spent many months there mainly to get nutriants inside me. By the age of 5 I was back in hospital full time as I was so weak I couldn't hold my own weight. I was moved to Booth Hall hospital in Manchester as it was closer to home. The go-ahead was given for me to have another operation. I had yet another colostomy and another pull though operation and then spent two years of ***l in hospital being treated as a lab rat.
I got strong by the age of 7 and started to teach myself to read and write, I got so strong minded and also in body so I was let home. I still wasn't growing well and still had my colostomy but i was fit to try to have a normal life, I started school and was happy to do so. I loved learning but the other kid's and some teachers was horrible, I soon was given the name of Sh*t Bag. My body wasn't growing right as my bones was growing slower than my cartilage so I became very bendy so i became a bit of a star in gymnastics.
By the age of 10 it was time for my colostomy to be reversed so back in hospital I went. I spent 6 months nill by mouth before the operation wich wasn't nice because at the end of my bed was the dinner table. I had the operation and all went well untill a trainee nures put a t-shirt on me when I woke up, when it got time to take the shirt off again my stiches had stuck to it and I couldn't remove it myself. The trainee nurse grabbed my shirt and ripped it off me in a temper this ripped out my stitches and my bowels was visible, I was used to seeing this by now but the nurse panniced and I was back in the operating room being restiched up, they never told my mum or dad that this happened.
As soon as my health started to get better I started to grow.... hurray!!!! I shot up so fast my mucles couldn't keep up and the doctor gave me a perscription of steriods, these didn't help much at all.
By the age ot 16 I was 5 foot 7 inches yet was only 7 stone in weight, home life went bad and had to move in with my Grandmother. She force fed me night and day and in 3 years I put on 3 stone. I moved out and got my own place and ever since then I've been doing well.
I'm now 35 years old, still having bowel problems as I can only go to the toilet once a month and I'm now up to 11 stone, also with my bones not growing right I've had arthritis in my knees, back and wrists since I was 18.
Life still goes on and i'm still living life to the full, and will never let this beat me.
Please remember I had a rare form what is hard to detect so if your child has it I'm sure with todays treatments they'll do better than I did.

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  • Oh. My. Gosh. I am getting the shivers from reading your story. My son is 2 years old and was diagnosed with H.D. at 10 weeks. His entire left colon has been taken out, and he too had to have a colostomy. We have been having lots of problems lately, and I have often wondered what life would have been like for someone diagnosed with this 20,30, or more years back. Technology has come such a long way, I thank God everyday. As I said , we have had problems lately and been trying different treatments. What has worked for you? Is there anything special that you do to help yourself feel better? Any thing you can offer would be great! Please write me, and let me just tell you how reading your story has offered hope. I have always said, "No matter how bad this is, there is always worse." You had it worse. Thank God that wasn't my child, but I am also sorry anyone had to go through that. Thank you for your time!
    TiffSpa 2 Replies Flag this Response
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