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A story of a Bloke with Hirschsprung

 

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 was 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 a 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 I had to have daily enemas and very frequent visits to outpatients. In those days the enema's were soap & water variety, 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.


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 going 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. 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 am married to June, with 4 kids/young adults. Kristian he is 18, Emma is 16 and Michelle and Claire 14. They are mostly healthy and no signs of my problems.


In 1997 things were not great that is why I found the Guardian group or HMDSN as it is now called. 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 '97 it was diagnosed as Lower short segment HD. It seems that when I was 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.


In April I had the reversal and I am now having to teach my muscles their new job in life.  It is not easy but I am getting there, with a few mishaps along the way.  A month after the reversal I am now ready to go back to work and ready to restart my life again after this 'little' hiccup.

Well a year has gone by and how am I. Great, I think that I am back to 80-90% normal, what ever normal is but so much better than I had been a couple of years ago or even longer back. Going back to work has gone well, a few minor mishaps but that has to be expected. I am living the life that I want to again, enjoying it and my kids. I do not live the idilic life that only happens in Disney films but I am living the life that most of us live and enjoy. That is all I want to do.


I hope that this has given you some idea of what you kids are feeling, that has been my aim in writing  these pages.


One thing that HD give kids is a great desire to get on, we have to. Everyone thought that because of all of my problems, missed school, the stammer that developed etc. that I would not get on but here I am with a good job and great family. There is life with HD if you want it. To get on we have to learn how to battle and we do.


Now in 2010, I am living in Caithness in my late 50's and still living a good life. I do have some problems, the main one is that after eating control can be a problem, Especially in the evenings as dinner I go 2 or 3 times, with some urgency. To stop I need to take immodium once or twice. This can then be a problem in the mornings when I do need to go, can't win can you. I am booked into to see a consultant about this soon.

 

If you wish to learn more abou how I felt during my lst operations, I have accumulated the emails that I posted to The Guradian Society during this time. To read them or to download the word document that {short description of image}