Skip to main content

Hi, I've spent about 10 years trying to convince doctors that I'm not healthy (fatigue, dizziness, apathy, body pains, brain fog). I'm convinced that I am anemic and/or have chronic fatigue due to nutrient deficiencies resulting from my j-pouch (1/2001). But because my blood labs are all within "normal" range, docs tell me to come back in a year (one tried to send me to a psychiatrist).

Thing is, a couple of my markers are normal by < 1... Clearly they'd prefer I wait to pursue health until I'm significantly sick on paper. Per my last sigmoidoscopy my pouch looks good and I've never had pouchitis or bleeding. I'm scheduled to get another peek in late March.

I'd like to find a doctor who is willing/able to look past what's on paper and take my symptoms into consideration. Ultimately I'd like to have an iron infusion but my first step is to find a doctor who will not say "look at this piece of paper which says there's nothing wrong with you! See this paper? You've got to ignore your body and just bow to the authority of the numbers on this paper!"

I'm near Charlottesville, VA, but I'd be willing to work with the right person online/on the phone.

Thanks in advance

Original Post

Replies sorted oldest to newest

Hello,

I have some thoughts on your situation. I have been anemic with low hemoglobin since emergency surgery and I had 3 transfusions.

this past November my levels dropped again and I received 2 iron infusions.

my latest labs show my iron levels to be at the very low end of normal and hemoglobin to be just below normal.

my guess is that your doc(s) are reluctant to put in for iron infusions without a clear diagnosis of anemia as the insurance company might deny coverage.

I have started taking an iron supplement to see if I can avoid future infusions.

UC/IBD is awful and has caused several underlying health issues for me.

please align yourself with a GI doctor who understands all of these manifestations and will treat you holistically.

in addition to iron deficiency/anemia, I have osteoporosis, vitamin d, b12 and folate deficiencies.

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×