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Gerry .....(contd)

Gradually I improved and except for my own purposes of manipulation I to all intent and purpose forgot that I had HD. I remember that as I was growing up I was always treated as a sick child so that is what I was. If it helped me get my own way then fine. I hated games so I was 'too ill' to take them. My brothers and sisters just used to think that I was a completely spoilt brat which I was. I was spoilt new it and played it to my own advantage. At the ages of 11, 15 18 and 21 I did have to return to hospital as I was serverly constipated but that was only for a few days. It was thought that at 11 I may of had to have another operation to widen that part of the bowel but they decided not to. teen For the greater part of my life so far, I have just got on with things and the HD has never really stood in my way.

By this time we had moved up to the Highlands and to advance my education at 16, I had to leave home and go into Aberdeen. So from 16 onwards I was independent and having a great time. As I say, I started to forget I had HD, it was always in the background as during this time I had my last big blockage that meant I had to go into hospital for a couple of days.

Anyway, I passed my exams at school and then went to college got a diploma in computing. Now I am now a senior manager in a computer company providing a large software package to insurance brokers. I have 4 kids/ adults. Kristian, Emma, Michelle & Claire. None of my children have HD and the girls now have children of their won, again HD free.

In 1997 things were not great that is why I found the Guardian group or HMDSN as it is now called. It was run by a several mum's but mainly Kim. For the past few years I had been having bowel problems and at first it was diagnosed as a colitis type bowel inflammation as I was going frequently and had other symptoms. Recently my consultant had a change of mind and rediagnosed it as Megacolon, and so I was referred to a consultant in London at a specialist hospital, St. Marks. I saw him at the beginning of October and he give me a couple of tests, Anorectal Physiology and a Barium Enema.. Over the past few months I had become run down with it and had to stop working for a long while, about 6 months in total.

In November '97adult  it was diagnosed as Lower short segment HD. It seems that when I was a little one and had my operations not enough of the bowel was removed. The upper part was but not the lower. This was most likely because this was the early 50's and the techniques were pretty new. It was because of this part being left that I have had to take laxatives for most of my life. While waiting for the operation I was starting to feel my nerves and muscles in the lower area going strange. Trying to do things that they can not and that is making the rest of me edgy. This was affecting my walking at times and these times are getting more frequent. I tend to shuffle around like an old man. Previously I would be striding out ahead of everyone else now I am asking them to slow down. On the upside my consultant has told me that after the operation and the period of recovery I should be back to normal.

In January '98, I had the operation and they removed the rectum and lower part of the colon, around a foot in total. After the operation I started feeling better than I have done for a long time. I had been given an ileostomy until the colon was healed. This worked fine despite the accidents that I had with it, mainly overnight. It is funny, when I first had the ileostomy it was my worst nightmare visited upon me, this thing sticking out of me looking at me, all nasty and messy. As time went by I grew to accept it, learning to handle it and the journay into work. Emptying it while out, sometimes after having maybe a beer or two. Cursing at it when I want to change the bag and it wants to 'do' things. Then the time came for the reversal and me to be hooked back up. I lay in bed that night and thought should I go though with this. Here I am working, traveling to football matches, driving long distances, etc etc etc. WHAT will I be like after I am joined???? Will I have control? Will I be able to eat normally, lots and lots of other questions and no answers.

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