Drs think I'm getting better but I feel worse!!

[Bestfriend91]

Hey,

Don't know what to do!!

I have been feeling so rubbish for the past few months, just always tired, can't sleep, feeling sick always. No energy. Stomach pains beyond belief!!

But the thing is..... I don't think the doctors believe me! All the tests they do show nothing. Apparently my inflammation is the lowest it's been in a while and they couldn't see anything serious when doing MRI scans and colonoscopy.

Currently not taking any medication for my crohns, as had reactions to most of them and am allergic to latest one (inflixamab)

Why do I feel so ****! :/ x

 

[deb123]

Hi Best friend 91,

sorry to hear that you are still feeling ****. I am like you in that i am in limbo. Havent had my MRI, or small bowel study yet, but also dont want them to find anything......................am very anxious about it all.

The only positive thing i can say is that they didnt see anything serious. That has got to be a really positive thing, and i would take some comfort in that.

I am trying to stick to a low residue/liquid diet, to help with stomach pains, as they wont give me any medication at the mo.

You know your own body, perhaps write a list of the things or symptoms that you have endured up to this point. Sometimes putting things in order on paper can help you and your Doctors. Sometimes it might help them to think outside the box.

Definitely listen to your body though, and keep pushing for an answer.

Good luck and best wishes
Deb.

 

[mainekitty]

I'm really sorry you're going through this. This disease really screws with my head, personally, because I find myself almost wishing that tests would find something to justify the fact that I'm feeling crappy! I don't know why I need the tests to validate my own symptoms...probably because it took me so long (almost 10 yrs) to go from "indeterminate IBD" to "Crohn's Disease" with so much testing and guessing, and feeling like crap and being told it's in my head in between.

Like I said - it's screwed up.

The thing is - it's definitely possible that you're dealing with some low-level inflammation (story of my life) that just isn't being picked up, but is still causing you a lot of trouble. Since you seem to have so much trouble with medication, maybe you should try experimenting with different diets to see if any of them help you out (as pp also suggested)? Otherwise, perhaps you could ask if there are any other meds you haven't tried?

I hope that you can get some answers - or at least start feeling better - soon!

Oh - just adding this question. You mentioned that your "stomach" hurt, but that they'd only done an MRI and a colonoscopy. Is it actually higher up in your stomach, or are you like me sometimes and using "stomach" to mean whole abdomen? Just wondering, cause it could be that you've got some gastritis or ulcers that are bugging you, which wouldn't be picked up on these tests, obviously. Just a thought...

 

[skippy111]

Hi BestFriend,
When was the last time you had labwork done?

You should ask to have the following levels checked,

Iron, Calcium, Pottassium, Magnesium, Vitamins A,B,C,D,E, B12
Sodium, Zinc, Copper, and Folic Acid...

a deficiancy in certain ones of the above could indicate a malabsortption problem and could explain why you are still having symptoms.