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.