Tricia,
I may not be a doctor but I'm sure you have CD by the symptoms you
mention in your story. Since you mention that you are getting care
at a hospital near Toronto, Ontario (Canada), you may want to
consider "crossing the border" and see some of the fine doctors in
the Colorectal department of the Cleveland Clinic Foundation in
Cleveland, Ohio (USA); if your medical insurance plan permits it. If
not, visit their website for other info about IBD.
HERMIT



--- In crohns_n_colitis@yahoogroups.com, "Tricia" <dragon@i...>
wrote:
>
> Hi Everyone:
>
> I've been reading your messages for the last two weeks or so and
> they are very informative. I've been suffering with the symptoms
of
> crohn's for about 13 years but while dr's have thought at times
that
> it's definitely crohn's they haven't had a positive biopsy to prove
> it. So I've been in limbo and mostly NOT on meds for a long
time. :(
>
> My latest bout started in July 2004 with a few days of pain here
in
> the right lower quadrant. I'm a nurse in a busy emerg so at that
time
> I was worried that it might be a flare starting but when it went
away
> within a week or so each time (at least twice- July and Aug) I put
it
> down to exposure to germs that bothered my "sensitive" areas.
>
> By October I was having a lot of upper G.I. pain especially in
the
> upper right quad. Seemed like gallbladder pain- severe indigestion
> and pain in the stomach area after eating a meal or even at time
> swallowing water, then steady pain in upper right quad and through
my
> middle back and right shoulder blade. I had a normal ultrasound in
> early Nov and my family dr tried me on prevacid and then pantaloc
to
> reduce acid but neither medication worked. We also tried dicietil
in
> case it was spasms causing the pain but that did nothing. During
that
> time period I had to stop working. I couldn't eat much- and not
> without pain and I was losing weight. The dr in our Occupation
health
> office decided to try me on Pariet another acid reducer ... this
one
> worked when the dose was upped to twice the recommended dosage.
The
> pain decreased quite a bit but was still there, but it did decrease
> enough that I started back to work by mid december on modified
hours-
> 4, then 6, and now 8 hour shifts. (I usually do 12 hour shifts in a
> busy busy busy emerg dept).
>
> I also saw my regular GI dr in December and he didn't even
examine
> me ... he just said that since a gastroscopy that was done in 2003
> (during last flare- first time put on pentasa and flagyl) only
showed
> one small area of granulation in my stomach (that was put down at
the
> time to advil use) that I must be suffering from IBS now and
having
> viseral pain. He prescribe elavil and liberax. I tried to elavil
and
> it didn't do anything ... I didn't try the liberax because it
sounded
> like it would make me very dopey and since I was just starting to
get
> back to work and due to the nature of my work I didn't want to be
out
> of it at work. My family dr and the occ. health dr were astounded
> that the g.i. did nothing since I was in obvious pain. I asked if
I
> could see one of the GI dr's from my hospital and was refered to
the
> one of my choice. In the meantime my pain became worse again near
> early January.
>
> I saw the new GI dr on January 20th and he thinks I've got
crohn's.
> I have a fistula (perianal) that emerged in Aug 2000, treated Dec
2000
> (opened and drained with stent, it was a complicated loop fistula
that
> connects to my colon, and it's a permanent draining hole now), I
have
> had loose stool and or D since all of this started many years ago-
> haven't had a normal stool in years and years, and things get loser
> when I'm "flaring", fistula reactivates when flaring, I have low
grade
> fevers and weight lose when my symptoms are occuring and of course
> abdo pain. The new G.I. thinks I have an abscess somewhere in the
> small bowel or on the messentry, and that the crohn's might not be
on
> the inside of the bowel but perhaps on the outside of it or in the
> mesentry itself. He put me on 1000 mg Pentasa twice a day, and
flagyl
> 250 mg 3 x a day.
>
> He referred me to a surgeon that works out of Mt. Sinai hospital
in
> Toronto- in the IBD center. He wants to start at the beginning
again
> and he's sending me to the people that specialize only in
inflamatory
> bowel disease. I'm still waiting for my appt with the surgeon
though.
> :( He thinks I need to be scoped again but he believes that they
will
> want to do that at Mt. Sinai (Toronto, Ont) so he doesn't want me
to
> go through it twice so he's not doing it. I did have an abdominal
> xray and another ultrasound though.
>
> I just saw the GI dr again today for a follow up. My flagyl
ended
> on Thursday and I've been lying on the couch since Friday having
> fevers and chills and pain the right lower quad. My ultrasound
showed
> nodules in the bowel ... not sure where though. My upper GI pain
> started to get better maybe a week or so after starting the pentasa
> and flagyl, and by last week was all but gone ... it only talks to
me
> about once a day now and quietly. :) But ... the right lower quad
pain
> started up about a week and a half ago and it's driving me nuts-
it's
> pretty bad. Dr thinks this is probably crohn's causing the pain
too.
> I'm back on flagyl and continuing with the pentasa and hoping for
the
> surgeon appt soon.
>
> I've had a lot of trouble getting back to work and since I felt
so
> bad the last 4 days I actually had to miss shifts again. I feel
very
> bad when I have to call in sick. When I'm at work it's busy and
> sometimes it's so crazy we don't even get our proper breaks- let
alone
> try to eat or take meds etc, or visit washroom. I'm pretty hyper
when
> I'm there too ... there are times when I could sit down and do some
> charting or chat with fellow co-workers but I guess I have the
> attitude that I'm there to work and I don't relax when I can ... I
> just keep going. I pay for it when I get home though, I'm
exhausted
> and often in more pain then when I started. But I do find that if
I
> keep myself busy (not hard to do there) it does take my mind off of
> how I'm feeling and helps me get through the shift. Most of the
> people I work with know I've been sick but because I don't act or
look
> sick when I'm there they don't realize how bad I'm feeling at
times.
> This is frustrating when I really feel ill, but I guess that's my
own
> doing.
>
> The Dr said today that he definitely thinks something is going
on-
> that's when he told me about the nodules showing up on the
ultrasound.
> Since I'm still waiting to see the surgeon and see what tests
she'll
> have me do (she does her own scopes apparently), he decided that
we'll
> do a sbft and a ct scan to get things started. My last sbft showed
> thickening of the mucosal folds of the duodenum and jejunum
(another
> reason he thinks something is going on), and previous sbft have
shown
> narrowing of the terminal ilium and nodules in the terminal ilium-
> although on last sbft the ti was normal.
>
> My left eye also started acting up a week and a half ago. It
became
> very sore and felt like I'd been punched in the eye. I went to
emerg
> and saw one of the drs that I work with last Monday and he thought
he
> was inflamation the iris and diagnosed iritis, put a steriod drop
in
> my eye, and got me an emerg appt with an opthomologist the next
day.
> Well by the next day my eye was feeling better and the
opthomologist
> thought I just had "dry eye". My eye is still sore but not as
bad.
> If it gets really bad again I'll go to emerg again. I've also had
an
> achy left knee and and a sore right foot ... just occasionally-
> several times a day. And for some reason I've had hives several
times
> in the last few weeks ... could be the meds making me more
sensitive
> to the foods I eat.
>
> I don't want to have crohn's but I don't want to be in limbo
anymore
> either. The meds seem to be helping to some degree. So far my
blood
> work hasn't shown any really abnormalities. I have been very
feverish
> in the last few days though and I've felt weak and shakey all day
> today. The dr had me get bloodwork done today ... perhaps todays
> blood work will show something.
>
> Anyway, sorry this is so long. and I only told half my story!
(if
> that! LOL). It's just frustrating- I feel like I've taken two
steps
> forward in the last month but then one step back again with the
extra
> symtoms that have started up. I'm just glad my new GI really
seems to
> want to work with me and believes something is going on. I think
he's
> the 5th gi that I've seen over the years and he's the first that
has
> really seemed to believe that I have crohn's. Now we just have to
> find it. My family dr is also very good and very supportive and
she
> has always believed that something is going on and she
says "someday
> we'll find something". My husband has also been very supportive
> during this whole on again off again illness.
>
> Ok long enough intro! Does this sound similar to anyone elses
> symptoms? Am I on the right track? Does anyone else work in a
very
> demanding high energy job that has trouble working when they are
in a
> flare?
>
> Thanks! Tricia