Soooooo Confused and frustrated

[Civil69]

Saw my GI yesterday again as I have been in a flare for two weeks (second one since April). One Dr says I have ileitis found via iv cat scan (narrowing of the ilieum) and another says I don't after scopes and biopsies. I present with many symptoms:

Deep seated pain on right side (pain comes in waves and is sharp and worse when I eat)
Diarrhea
Intermittent blood in stools
Bad bloating
Extremely painful joints (hips and knees)
Skin assesses
Insomnia
Depression
Night sweats
No fever
No weight loss despite loss of appetite

No relief insight. Grasping at straws for some help. Can a person have ileitis despite scopes and biopsies being normal? Both tests were done at different times. When questioned, Dr dismissed IBD and said the scan may have picked up the narrowing at the exact moment of intestinal contraction hence showing the narrowing.

I have also read that if biopsies are taken when out of flare, that they would come back 'negative' is this true?

Dr is suggesting IBS and PMR yet when googled, I don't have the typical symptoms of PMR. He upped my asacol, dicetel and added amatriptalyn and Constella. I don't need evacuating help and Constella nearly killed me last night.

Sorry, this is so disjointed just doing a brain dump and need help.

 

[scottsma]

Welcome to the forum,but so sorry you have to be here.I'm sorry I can't be of help to you,but I'm sure someone will be along soon who has had similar problems.In the meantime why don't you browse our "undiagnosed" thread,you might find it some help on there........Feel better soon.

 

[baistuff]

1) The colonoscope can only advance into the last several centimeters of the terminal ileum. The ileum extends well beyond that. Inflammation can certainly be present in areas of the ileum that cannot be visualized or biopsied.

2) It is possible, and what really everyone hopes for, that during periods of quiescence that the mucosa grossly and histologically return to normal. It's called mucosal healing and is the goal of treatment

3) You don't say your age, but PMR is mostly seen in those over 50 and cause can pain and muscle inflammation in large muscle areas (thigh/hip area, shoulder area.) There is a strong connection between PMR and temporal arteritis, which also is really only seen in people >50. Very high ESR, though no specific, usually helps to rule those in. PMR is really only responsive to steroids- luckily low dose. Arteritis usually requires long term high dose steroids. PMR can cause night sweats, as can other rheumatologic conditions. I would suggest getting that checked out. Night sweats is not a symptom to ignore.

Good luck.

 

[Civil69]

Thank you so much for your responses.

I am 45 and do not have the shoulder pain, jaw pain or any other pain above the belly that is seen with PMR hence my skepticism.

If the last part of the ilieum cannot be biopsies but can be seen on the scan, is it still possible to have Crohn's?

I see my GP today and will ask about low dose pred or Entocort and see what he thinks as he still believes it is either Crohn's or UC despite the GI test. This is why I am so confused.

 

[baistuff]

Thank you so much for your responses.

I am 45 and do not have the shoulder pain, jaw pain or any other pain above the belly that is seen with PMR hence my skepticism.

If the last part of the ilieum cannot be biopsies but can be seen on the scan, is it still possible to have Crohn's?

I see my GP today and will ask about low dose pred or Entocort and see what he thinks as he still believes it is either Crohn's or UC despite the GI test. This is why I am so confused.

I agree with your PMR skepticism
The last part of ileum can be seen and biopsied. It's the earlier or more proximal part that can't.

It does not seem that anything in particular has been ruled in or out. It can often take a while to confirm these things. Good luck.