On Jun 27, 1:28=A0pm, "neetac" <nee...@[EMAIL PROTECTED]
> wrote:
> Hi All,
>
> Haven't been here for a while but looks like I'm in for a major change
of
> life.
>
> I've had CD for about 10 years now and would be due to have my 20th
> anniverary with my employer this september, but I don't think I'll make
i=
t.
> There's been talk a number of times about retiring me out on ill-health
> grounds, more frequently in the last couple of years, and now it looks
li=
ke
> it's really going to happen this time - I got the letter about
instigatin=
g
> the procedure this week. =A0I had a major flare-up about 18 months ago
an=
d
> haven't been quite right ever since. =A0At the time of the flare, they
> quadrupled my mesalazine (the medication I'd been on since being
diagnose=
d
> after they realized I couldn't handle the sulfer based ones), and added
> prednisone, remicade infusions and immuran. =A0Then for the following 12
> months they fiddled about with the dosages, dropping some off and added
i=
ron
> infusions until finally as of december last year I was down to only the
> immuran (250mg per day) which I've been on since then. =A0I also take
fol=
ate,
> zinc and have B12 injections (all of which I've had for years due to
> malabsorbtion issues).
>
> I've always had extremely urgent diarrhea but it's always settled into
> reasonable predictable "clusters" during the day that with flexible
worki=
ng
> hours I could work around. =A0However since this last flare that hasn't
> happened. =A0It may only be a half dozen times a day on a good day, but
> they're all over the place and considering I still suffer at least 1
> "accident" a week in my tiny little flat where I'm close to a loo that I
> don't have to take my chances competing with anyone else for, I've been
> missing a lot of work. =A0Also I've had a couple of bad bouts of
illness:=
a
> gastro infection and later on a respitory infection where the illnesses
a=
nd
> treating antibiotics really played havoc with my =A0bowel habits.
=A0Then=
for a
> month my heart went berko on me resulting in blood tests, ECGs and a
halt=
er
> monitor. =A0All of which could find no problem luckily, the consensus
see=
med
> to be it was triggered by the infection and eventually it settled down
on
> it's own. =A0But boy did it throw my already wonkey body rhythm out of
wh=
ack
> even more. =A0I don't fall asleep before 4am no matter what I do, and
bel=
ieve
> me I've tried everything. =A0So I'm exausted only getting a couple of
hou=
rs
> sleep a night. =A0Then my body seems to revolt and I'll have a day where
=
sleep
> for 12 hours straight even through alarms, neighbourhood noise etc.
>
> The specialist told me that if my body has settled into a rhythm in the
p=
ast
> it probably will again, I just need to get used the new medication (and
a
> steady dosage of it) and require a period of stress free good health for
> everything to settle down. =A0Obviously work doesn't want to wait
though,=
they
> sent me off to the Government Medical Officer to get his opinion, which
c=
ame
> back last week and wasn't very positive. =A0So here I am looking down
the
> barrel of retirement on a superannuation illness pension at 39. =A0All
of
> which is incredibly stressful and consequently, I've had a dreadful week
> this week. =A0I'm beginning to think, bugger it, just let it happen -
sur=
ely
> the once it's done, the stress of continually fighting keep my job
(which
> I'm really getting sick of) being gone maybe something will improve.
>
> So I was wondering how may of you out there have given up working
(either
> forced or voluntarily) and does it make any difference to your health?
>
> Thanks for "listening" to a long post.
> Any advice or comments would be appreciated.
>
> Neeta.
I think I have UC (docs not sure if UC or Crohns) & have been off sick
since Jan this year. I am due to have ileostomy sometime soon as drugs
can no longer control things. I have an appt to see docs on Monday
(tomorrow) to discuss which operation & when. Work are sending Occ
Health round on Wed, all they will say is that it is to 'explore
future options'! So I think they are going to give me the push. Or
maybe give me the chance to jump?
I will let you know what they say. Not too sure yet of how I stand if
they try to push me, as soon as I can get the energy, I will find out!
The extra stress of not knowing is not helping matters.
All that seems to settle me down is high doses of pred. I have tried
all of the other drugs & am currently on Pentasa & Cellcept. Pentasa
is new to me & Cellcept is very new to me. Neither are working & I am
having side effects from the cellcept, a nasty drug, worse than pred.
I think I am going to jump. The not knowing is adding stress when I do
not need it. It is possible to get another job once I'm well again.
Jobs can be replaced or done without, you only get one life.
I am in England btw.
Thanks & good luck
Tony
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