Hang on in there. I think that most of us here have been in the position
that you find yourself in. Being confronted with doctors who play down a
patient's symptoms and indicate that most of it is in the patient's head
is
the usual approach for those doctors that have reached the limits of their
competence(s).
I suggest that you start writing a symptoms' diary.
http://www.google.de/search?hl=de&q=Symptoms+diary&meta=
It is very
cathartic and will help you hang on to your sanity. If you let rip, then
it
perhaps wouldn't be a good idea to show it to your docs, but you can
paraphrase it and/or read out sections out to the doctor - not the parts
where you think about doing anything extremely violent to them.
You can also monitor your symptoms using the CDAI
http://www.ibdjohn.com/cdai/
The minimum you should record is here:
http://www.remicade.com/remicade/assets/REM_crohnsdiary.pdf
To describe
bowel movements use the Bristol Stool Scale
http://www.familydoctor.co.uk/htdocs/BOWELS/BOWELS_specimen.html
Doctors like numbers and paper far better than they like patients - so get
some numbers down on paper. This will help to convince them to take you
seriously. I can also suggest that you put together a Health CV and write
down your symptoms/operations/out-patient procedures in chronological
order
in a table with dates. Include all the information they normally ask you
on
admission - name, address, name and contact details of next of kin, health
insurance number, diagnoses, current symptoms, height, weight, blood
group,
family medical history, allergies/intolerances, etc., above.
The statistics on fistulas are approximately 1% of the general population
(the majority women after childbirth), some 5% of UC patients and upwards
of
30-50% Crohn's disease patients have fistulas .
http://www.google.de/search?hl=de&q=fistulas&meta=
Crohn's disease is particularly difficult to diagnose and it can take
several years depending on the location of the disease and the
interest/competence of the doctors. UC is far easier to diagnose because
the
colon is easily accessible.
Crohn's hits anywhere between the mouth and the anus and starts in the
submucosa and works its way into the mucosa and/or the muscle outer layers
of the intestine. The Crohn's prodrome is the time prior to diagnosis
http://www.google.de/search?hl=de&q=Crohn%27s+prodrome+colitis&meta=
This
is
the time where the patient is most likely to think that he/she is going
bonkers. However, this may also happen to Crohn's patients after the
diagnosis depending again on the competence of the doctors.
We have had patients here re****t on Crohn's of the tonsils, oesophagus,
duodenum, jejunem, etc., and one lady who had already been diagnosed was
very ill and felt as though she was in a flare, but the docs. could not
find
any sign of Crohn's. However, she had a gynaecological procedure carried
out
and in the course of the laparoscopy the gynae surgeon found Crohn's on
the
outside of the intestine. Hence, the pathology of internal biopsies was
coming back negative.
I am fairly sure that I have been ill with smouldering Crohn's since I was
in kindergarten. This form of Crohn's flies under the Crohn's radar with
blood tests negative. Extraintestinal symptoms can be the only symptoms
present, which do not alert the docs. to an intestinal problem. I
frequently
suffered from exhaustion as a child and was very belly focused. I had very
low blood pressure (kept on collapsing), had intermittent problems with my
eyes (uveitis?), and had joint problems some 10-20 years prior to the
diagnosis, whereupon I had blood and mucus pouring out of nearly every
orifice and realised that I was going to lose my colon straight away. I
had
spent years going from doc to doc and in the end, like yourself, felt that
I
was going around the bend because no doctor would take me seriously. One
doctor told me I should do more s****t - at the time I was doing about 6
hours s****t each week including scuba diving, swimming, cycling, tennis
and
volley ball and I was on my knees with exhaustion. I subscribe to the
school
that says s****t is good for you, but it wasn't working for me. After I
told
her that she wrote me a prescription for the pill, which I threw in the
bin
when I got home. It was extremely frustrating and I ended up with bad
depression - probably partly due to malnutrition as the diarrhoea got
worse
and worse.
I discussed my current situation (ileum closing most likely at anastomosis
site) with my surgeon the week before last. I don't want a Barium meal
because I have had two - 2002 and 2005 - both of which came up negative
for
Crohn's damage/activity. When they opened me up in 2005 I had severe
Crohn's
damage - conglomerate tumour of the ileum and my intestines were glued
together with adhesions, which caused me pain on eating and walking. The
surgeon said that these tests have a 30-40% failure rate for the detection
of [Crohn's] intestinal damage/inflammation. This is very frustrating for
the patient who ends up thinking that the doctors don't believe him/her
because the doctors don't understand that these tests are not infallable.
I don't know what to suggest except perhaps packing your stuff together,
collating all medical re****ts brown bagging your meds., and getting
yourself
a second or third opinion. What is clear is that you need treatment for
your
current symptoms. Fistulas are not to be taken lightly. I had an
enterovaginal fistula in 2005 and that was no fun, although I was one of
the
lucky ones and it healed up on a liquid diet (Fresubin - similar to
Fortisip
and Ensure) and Enterocort (aka Budesonide) and Ciprofloxacin.
www.drugs.com
www.rxlist.com
I read recently about fistulas in rape victims in Uganda.
http://www.google.de/search?hl=de&q=fistulas+Uganda+rape&meta=
These girls
had gone through such horrendous abuse that they have been physically
damaged.
Vanny
"janetlynnperez" <princessajlp@[EMAIL PROTECTED]
> schrieb im Newsbeitrag
news:72160852dc196429371128ea0c627af3@[EMAIL PROTECTED]
> How do I know if I am suffering from Hypocondrias? There is so much
> crap(no
> pun) One doctor says I have CD, the other says you dont? WTF...OMG, I
just
> want to freaking scream...my stomach hurts, my bones hurt, I have the
> cancur sore, fistulas, so why is it so hard to diagnose what the heck is
> wrong with me? I really wonder if I ve lost my damn marbles, i could be
> feeling really ill. Even the scans show suggestions of ibd? but the
> pathology is what always comes back negative...so anybody have any
> suggestions, I dont mind accepting crazy? I dont know how long it takes
to
> come up with a freakin diagnosis..4 yrs on and off and still no answers?
I
> dont get it? Then I have this dude on my buddy list who has crohns
disease
> and he was like its so easy to diagnose ibd, so obviously you dont have
> it,
> frankly you ask me its all in your head? so is he right? maybe someone
put
> a spell on me? sorry you guys I am rambling? Hope all is well, and
> everyone is feeling healthy and happy!
>
> xoxoxo
> J
>
> --
> Message posted using
> http://www.talkaboutsup****t.com/group/alt.sup****t.crohns-colitis/
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>
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