Hello ~
I know there have been discussions about low iron on here, and I've read those, but I do have a couple questions. I had my takedown almost a year ago, and in between my two surgeries, I had some unusual complications with bleeding in my pouch; still, my hemoglobin hung around a 13 (the best for me in years!). But then in late summer after an incisional hernia surgery, we noticed my iron was dropping, as was my hemoglobin, though that was a slow decrease.
But now the numbers have gotten much worse:
In November, my hemoglobin was 11.4 and my total iron was 27. As of last week, my hemoglobin has dropped to a 9.8; hematocrit is 31.7; iron total is 16 and iron saturation is a dismal 4. The hemoglobin has me worried because when I was bleeding a lot with UC, it would hang around 8 to 9 (other than the times it dropped critically low and transfusions were needed). Iron supplements haven't worked and complicated other problems I'm having, so I have to go back to iron infusions, which I had before my colectomy in 2011.
My GI, who I saw today, seems to be saying that inflammation and bleeding would be causing my drops, not poor absorption, but I am not "seeing" blood, other than some from bleeding hemorrhoids.
I am having a pouchoscopy, small bowel biopsy and upper endoscopy in a couple weeks. I have been having some problems with my pouch, so I guess I'm a little worried -- given the unusual problems I had between first surgery and takedown last year.
What are people's experiences with low iron; is it often linked to pouchitis?
I am also having some problems with some large uterine fibroids, which have grown a lot in the last year and are likely causing pressure/congestion with my pouch. However, the fibroids are not causing unusually heavy periods, so I don't think that is factor in anemia.
Also, I am struggling with depression and anxiety that is getting worse, and I'm wondering also about my vitamin D levels. Do many j-pouchers seem to have problem with vitamin d levels, and can that affect mood? I'm thinking I should get it checked. I've also been having bad leg and foot cramps, which I used to have during UC flareups. Low potassium? Dehydration?
I am going on a trip (airline travel involved) in a few weeks, and I certainly want to feel better than I am now. The scope may provide some answers...I hope. And I'm not sure how quickly I can get in to see my hematologist, and I know iron infusions take a while to help. This trip is one I was supposed to go on two years ago but had been hospitalized recently and was too ill with c. diff and uc flare, on too much prednisone, to go....After all the surgeries, etc., I wasn't expecting to be worried about traveling at this point. It's not so much about me, but my kids....
I'm going to post separately on flying and pouch ... and gas, which is a big problem for me on terra firma, so I wonder about on airplanes (though trip is only a few hours).
Thanks for reading and for any feedback. I don't post often but very much appreciate the wealth of information and experience on this site.
Take care,
Laurie
I know there have been discussions about low iron on here, and I've read those, but I do have a couple questions. I had my takedown almost a year ago, and in between my two surgeries, I had some unusual complications with bleeding in my pouch; still, my hemoglobin hung around a 13 (the best for me in years!). But then in late summer after an incisional hernia surgery, we noticed my iron was dropping, as was my hemoglobin, though that was a slow decrease.
But now the numbers have gotten much worse:
In November, my hemoglobin was 11.4 and my total iron was 27. As of last week, my hemoglobin has dropped to a 9.8; hematocrit is 31.7; iron total is 16 and iron saturation is a dismal 4. The hemoglobin has me worried because when I was bleeding a lot with UC, it would hang around 8 to 9 (other than the times it dropped critically low and transfusions were needed). Iron supplements haven't worked and complicated other problems I'm having, so I have to go back to iron infusions, which I had before my colectomy in 2011.
My GI, who I saw today, seems to be saying that inflammation and bleeding would be causing my drops, not poor absorption, but I am not "seeing" blood, other than some from bleeding hemorrhoids.
I am having a pouchoscopy, small bowel biopsy and upper endoscopy in a couple weeks. I have been having some problems with my pouch, so I guess I'm a little worried -- given the unusual problems I had between first surgery and takedown last year.
What are people's experiences with low iron; is it often linked to pouchitis?
I am also having some problems with some large uterine fibroids, which have grown a lot in the last year and are likely causing pressure/congestion with my pouch. However, the fibroids are not causing unusually heavy periods, so I don't think that is factor in anemia.
Also, I am struggling with depression and anxiety that is getting worse, and I'm wondering also about my vitamin D levels. Do many j-pouchers seem to have problem with vitamin d levels, and can that affect mood? I'm thinking I should get it checked. I've also been having bad leg and foot cramps, which I used to have during UC flareups. Low potassium? Dehydration?
I am going on a trip (airline travel involved) in a few weeks, and I certainly want to feel better than I am now. The scope may provide some answers...I hope. And I'm not sure how quickly I can get in to see my hematologist, and I know iron infusions take a while to help. This trip is one I was supposed to go on two years ago but had been hospitalized recently and was too ill with c. diff and uc flare, on too much prednisone, to go....After all the surgeries, etc., I wasn't expecting to be worried about traveling at this point. It's not so much about me, but my kids....
I'm going to post separately on flying and pouch ... and gas, which is a big problem for me on terra firma, so I wonder about on airplanes (though trip is only a few hours).
Thanks for reading and for any feedback. I don't post often but very much appreciate the wealth of information and experience on this site.
Take care,
Laurie