Keeping a symptom diary is OK, but a competent gastroenterologist should be
able to diagnose Crohn's on the basis of a colonoscopy, irrespective of
symptom re****ts. That's why this person should seek out the best possible
specialist at a university teaching hospital to take over the case. All
this
conjecture on a newsgroup is just that--conjecture.
"Vanny" <Vannyss2003@[EMAIL PROTECTED]
> wrote in message
news:g4a7q1$8l5$1@[EMAIL PROTECTED]
> 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/
>> More information at http://www.talkaboutsup****t.com/faq.html
>>
>
>
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