Good luck with the op. Tony. If you need any tips I had a
panproctocolectomy
in 1993. My quality of life rocketed and I went back to work (new job),
scuba diving (after bringing up my fitness to the required level in the
gym
and on the badmington court) and travelling around the world for work and
leisure.
However, I do think that a definite diagnosis of either Crohn's or UC is
necessary prior to the operation. With UC one has the option of a J-Pouch
www.j-pouch.org.
Vanny
"Tony" <mrwreckit@[EMAIL PROTECTED]
> schrieb im Newsbeitrag
news:07ac9f26-36de-4441-adc6-63de3ee53a8a@[EMAIL PROTECTED]
Jun 29, 11:34 am, Tony <mrwrec...@[EMAIL PROTECTED]
> wrote:
> On Jun 27, 1:28 pm, "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
> > it.
> > 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
> > like
> > it's really going to happen this time - I got the letter about
> > instigating
> > the procedure this week. I had a major flare-up about 18 months ago
and
> > haven't been quite right ever since. At the time of the flare, they
> > quadrupled my mesalazine (the medication I'd been on since being
> > diagnosed
> > after they realized I couldn't handle the sulfer based ones), and
added
> > prednisone, remicade infusions and immuran. Then for the following 12
> > months they fiddled about with the dosages, dropping some off and
added
> > iron
> > 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. I also take
> > folate,
> > 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
> > working
> > hours I could work around. However since this last flare that hasn't
> > happened. It 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. Also I've had a couple of bad bouts of illness:
a
> > gastro infection and later on a respitory infection where the
illnesses
> > and
> > treating antibiotics really played havoc with my bowel habits. Then
for
> > a
> > month my heart went berko on me resulting in blood tests, ECGs and a
> > halter
> > monitor. All of which could find no problem luckily, the consensus
> > seemed
> > to be it was triggered by the infection and eventually it settled down
> > on
> > it's own. But boy did it throw my already wonkey body rhythm out of
> > whack
> > even more. I don't fall asleep before 4am no matter what I do, and
> > believe
> > me I've tried everything. So I'm exausted only getting a couple of
hours
> > sleep a night. Then 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
> > past
> > 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. Obviously work doesn't want to wait though,
> > they
> > sent me off to the Government Medical Officer to get his opinion,
which
> > came
> > back last week and wasn't very positive. So here I am looking down the
> > barrel of retirement on a superannuation illness pension at 39. All of
> > which is incredibly stressful and consequently, I've had a dreadful
week
> > this week. I'm beginning to think, bugger it, just let it happen -
> > surely
> > 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- Hide quoted text -
>
> - Show quoted text -
Right then.
Occ Health were very good, no sign of pu****ng or jumping. Quite the
reverse.
Surgeon also set date for end of August for stage 1.
Tony
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