Please let others know about us

Follow us on Tweeter & Facebook Follow Hirschsprungs Support on Twitter  Follow HMDSN on Facebook

 

Gerry's Story

My history. Well, some of it is difficult because I don't know a great deal about it. I have learned more about Hirschsprung Disease (HD) in the past few months than I learned in the rest of my time. I don't know if you saw one of my early mails but it is the importance of parents keeping there child medical history. I did not have mine until recently and then it was not fully complete. As all of the important things happen to us when we are young then our knowledge of it depends on you the parents. So when your kids get older they may find it useful to have them to refer to and to pass on their doctor at that time.

Here goes and forgive me if I ramble, you may of noticed it by now.

I wasPotty Time born in 1952 in the UK at a place called Sunderland in the N.E. of England, the youngest of 5 kids. From birth I had a problem with my bowels but in '52 HD was not well known. My mum struggled along giving me Milk of Magnesium and manually evacuating me. It seems that she had to take me to the hospital twice a week for my wash out. They did not know what it was just that I could not go to the loo. In January 1953 I was diagnosed as having Hirschsprung Disease and was given a colostomy on the transverse colon. Within a short time my abdomen brokedown and I had to go back to theatre. . In the UK we only had 2 surgeons who could perform the operation, luckily I got one of them, I was his second patient.

Until I had my Rectosimoidectomy in July 1955 I had to have the bowel washed out from both ends and had to return to hospital on many occasions. In the colon removed they did not find any ganglion cells and therefore were unsure as to if all if the affect bowel had been removed. In November it was noticed that my lower bowel was obstructed and so a second Rectosimoidectomy was performed. Two pieces of colon was removed then, I don't know how much was removed the first time. This time ganglion cells were found in the upper area removed and so they thought the prognosis was good. The lower segment had to be irrigated twice a week. A few months later a stricture was found near the anus and so dilations were started. In February '56 my colostomy was closed 4 years after I first had it. The dilations continued on for aon the moors number of months with a number of washouts.

During this period I remember very little. I have the odd remembrance like blood transfusions and being fed by drips into my arms and legs but nothing really of the treatment that I had to have.

When I came out of hospital,I had to have daily enemas and very frequent visits to outpatients. In those days the enema's were soap & water variety (Lux or Fairy Flakes), I remember the big break through when other less violent types came in. The enemas went on until I was about 8 and I was left on Agarol and Senokot tablets. The Senokots I continued on until my early twenties. Early on I had did not have full control of my bowels at night especially but that did come except that I grew to enjoy the special attention and so was not dry until quite late on, about 8.

Next Page > >