Years of pain, years of strain-can't take much more
From: Mark (Camionette@googlemail.com)
Tue Jul 17 18:59:57 2007
Dear all,
At the age of 11, I fell in the garden and impaled myself upon a hollow
plastic stake that caused severe dameage to my colon. I was given a
temporary colostomy at the time. Since reversal, I have had a
ridiculous number of obstructions, resections and adhesiolyses.
In most cases, the obstructions were treated conservatively. I think in
total I have had 8 laparotomies. I am now 31 and have 2 children.
In the UK, I faced very difficult times as a result of so-called health
professionals treating me as a drug addict (I am not), a hypochondriac
(I am not) and someone whose apparent physical symptoms must surely be
attributable to some sort of psychosomatic phenomenon. From 2002 to
2006, my condition was particularly bad. I had been waiting for some
years to see the so-called expert, only to be told that nothing could be
done, and that he doubted that adhesions were the problem, but rather
non-adhering scars were likely to be the issue. I recieved councelling
for some time via his clinic treating my condition as IBS. I was unable
to work, but also did not qualify for any form of social benefit to
compensate, arising from his refusal to acknowledge the problem. I was
typically admitted with obstruction aroung 12-times per year. The
surgeon in those hospitals in wich I was admitted refused to offer any
treatment other than conservative, as a result of the fact that I had
been seen by the so-called top-man.
Last year we moved to France. Within one week of arriving, I was
admitted to hospital in emmergency and operated on immediately.
Apparently, I had an incredible number of adhesions, and my bowel so
damaged that it was hard to believe that I was able to function at all.
Had I not been acutely obstructed, the surgeon claims that I would have
had around 3-months left to live without surgery.
Since the op last year (March/Aril), I had been much better than for
some time prior. I did not have much pain. I felt strong and gained
weight. I was able to enjoy my family. I was able to work. Work was a
bit tricky though, as living in rural France and needing to find work
urgently, I settled for a very physical position in a charpente (heavy
timber workshop). This was reasonably OK initially, though towards the
end of the summer I started to get quite considerable pain again. I was
forced to quit at Christmas.
Since then, I had a fairly extended period of unemployment - mainly as a
result of increased pain, nausea, loss of strength and appetite and
frequent episodes of severe constipation. I have been hospitalised a
few times also (in January 2007 with partial obstruction, and otherwise
with heavy loading caused by reduced motility owing to th reformation of
adhesions). I am now working as an industrial designer - minimum wage,
but have until now been able to work from home. The company are now,
however putting pressure on me by stating that they are only prepared to
pay me for in-entrepise hours - apparently the secretary has a problem
with me working from home.
I saw the surgeon a few weeks ago, and he very quickly located some
obvious adhesions with palpation - very impressive, but gutting at the
same time. I was given anti-spasmodics, analgesics and mild laxatives
to try to maintain some sort of comfort level, but nothing is working. I
am in constant pain, find it difficult to be around my children most of
the time - I certainly cannot run aroung playing catch. My moods are
rotten. My wife feels as though she has been dealt a bum card - I have
well and truly had enough.
I am tired. I just want to crawl into a hole and never come out. At
times it has seemed as though there may be hope, seems to me now that
hope for a solution for adhesions is little more than a mirrage. It's
the dealing with others, and their time-limited understanding that
compounds the problem for me, and I'm sure many of us. Not only do we
have to live with shitty health, we have to put up with shitty people,
and the guilt associated with our own inability to function as we would
like, even at a personal level.
I just want it to stop...NOW.
Thanks and best wishes to all,
--
Mark
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