My daughter who is a little over a year post TD is having issues with low hemoglobin/hematocrit. (8 and 22 to be specific). Her primary care as well as this info from this site suggested that I contact her surgeon as these numbers could indicate a problem with her pouch.

Surgeon suggested a pouchoscopy which I am happy to report was very normal, and told me not to worry about her anemia. My daughter and I were very happy with that report----we left the surgical center, had lunch and then went shopping.

We had a follow-up with her primary care to recheck her blood levels, and I informed her of what the surgeon had said, and just my luck, primary care doc is not in agreement at all. She says that these levels are low enough to be of concern, and wants to refer her to a hematologist.

I know that in addition to a CBC a couple of other tests were performed to determine if the anemia was a specific type, and that seems to be where the primary care physician's concerns stem from. However, the surgeon also had those same results, and he does not appear to be the least be concerned.

I do not know whose advice to take. Any suggestions?

Thanks,

ConnieDenise

Chris was told his h and h was low last week, surgeon was not too concerned and said re check in 1 week.
labs do make errors as we are well aware. cc ohio was so concerned with chris having high white cell count, no infection to be found and next test showed white cell count normal after d/c antibiotics

primamry care is too unfamiliar with surgery and what colonless people deal with,
maybe re check and ask to use a different lab

It couldn't hurt to see a hematologist just for peace of mind. Your primary care doc is probably much better for managing these things, but getting checked for pouchitis was a smart thing. Chronic inflammation can cause anemia.

It has been my experience that some surgeons don't worry themselves with what they can't cut and fix. I was sent home from CC in Florida with low h and h, and didn't even bother to tell me. I started chewing ice(always a BIG clue for me) and went to my primary doc. He ordered bloodwork, and then ordered my CC records just to compare....and darned if they didn't just ignore that little bit of health info. It didn't respond to oral therapy. I didn't know it was as bad as it was, and I didn't get it re-checked (my neglect or avoidance of doctors). I just got out of the hospital because my numbers were 5.5 and I think 22 (whatever it was it was critical, it just came on gradually and my body adapted, and I went to my Primary Care doc when I started having what I thought were heart issues. Turns out it was from being so anemic. I had 4 units of blood and a unit of IV iron before they let me go (that got me up to the upper level of the "low" range). The hematologist ran more tests and concluded it was low ferritin, and said I just need to keep on top of it with iron supplements and infusions if needed. They didn't do a bone marrow test. I suppose if my levels keep dropping at some point they might check that (I think that's painful, so that's not a problem for me!!). I've put links to 2 articles about anemia and pouchitis. Kind of interesting:

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=...&itool=pubmed_docsum

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=...&itool=pubmed_docsum

Lori

Holly, thanks for the reply----her levels have definitely been going down since early March---it is my understanding that the values have been rechecked, but I will definitely address that with primary care----

Lori, thanks for the links regarding anemia and the pouch---interesting reading---my daughter CRAVES ice---she is always chewing it----and she eats salt like there is no tomorrow----i worry about the affect it may have on her kidneys.

Thanks again,

ConnieDenise