Had he abstained from iron supplements before the test for occult blood? Iron supplements are reported to cause false positive results. If he hadn't been taking iron before the test then it sure seems like he's bleeding from somewhere, at least a bit. The usual culprit is the colon, but that's not much of a candidate here. Without some sort of bleeding it takes a while to get anemic, though chronic disease can also do it to you. Does the hematologist have an explanation for the occult blood?

Have they checked for upper GI bleeding? The surgeon could have just been looking at the j-pouch maybe? 

 

On the other hand, what does the pediartrician know that the hematologist does not? Usually, the hematologist can differentiate what is going on. What is certain is that there is iron deficiency. What is to be determined is if there is malabsorption or bleeding. Another possibility is "anemia of chronic disease." This is where the bone marrow is suppressed from the presence of chronic disease. If he has not been having symptoms of anything, then it probably is not that. 

 

I would do repeat hemoccult stool tests (no iron for a few days), then look into upper GI causes if it is still positive. Otherwise, look at malabsorption, like celiac disease or any number of things.

 

Jan

I have been thinking about a false positive also, since he is still on iron supplements. Up until 2 weeks ago he was taking Proferrin (made from animal blood and known to cause false positives). But for the last 2 weeks he was taking iron sulfate. Could it be the culprit here? I did not discuss it with the hematologist yet, just got the test done yesterday.

 

The surgeon did not look at the upper GI, only the pouch. But there was never any issues with upper GI, ever. He does not have celiac disease.

 

I was trying to look up his iron numbers, and the way I understand it, it's iron deficiency anemia, not anemia of chronic disease. But I may be wrong, i am not a doctor.

Yes, if both the hemoglobin and ferritin are low, it is iron deficiency. That can be caused by either inadequate absorption or blood loss that is greater than the ability to create new cells. But, if absorbtion is normal, iron will be absorbed at a higher rate in the presence of anemia. There are a great number of things that can interfere with that, such as inadequate stomach acid. 

 

Once you follow up with the hematologist, he should be able to give some ideas on how to proceed. Unfortunately, sometimes it is very difficult, if not impossible to pinpoint the exact issue.

 

Jan

Another thought I had is the possibility of growth spurts adding to the iron demands.

 

Jan

Thank you, Jan.

The pediatrician showed me that his C reactive protein is high 2.5, even though ESR is normal. He said this is more accurate inflammation marker. But there are no symptoms of anything. He away not anemic at the ostomy stage, then why with Jpouch?

 

I would like to hear from other folks with the same issue. What do your doctors think of  anemia causes? Please share your insight.

CRP may be a more accurate measure of inflammation, but it does not tell you where it is. An elevated CRP means you need to look for infection or inflammation. My CRP is always elevated, but my blood counts are consistently good. Mine is tied to inflammatory arthritis. CRP is best used as a way to monitor treatment more than as a diagnostic tool. There are many things that can affect CRP levels. There was even a study showing elevated CRP levels in teens who do not get enough sleep.

http://www.reuters.com/article...dUSKCN0J42DE20141120

 

Jan

I have the same exact situation as your son. I have no visible bleeding but am severely iron deficient. I end up having to get iron infusions every 3 or 4 months as it just dwindles down. I don't absorb iron orally and certainly not from food. It's a mystery for me right now. I am going to follow up with my gi but the latest tests all showed that everything was fine. So right now I'm at a loss and going regularly to my hematologist. I would love to get this straightened out.

21% of j pouch patients have anemia, and, this article, at least , is not sure why it occurs (or the other bloodwork anomalies, that, in me, at least, seem to be permanent) I also cannot take iron (but my primary problem before j pouch was constipation, so...) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3424428/

As others have suggested, iron deficiency is not uncommon with the pouch. I've basically dealt with anemia on and off since my colon was removed, with my hemogloblin sometimes fluctuating in the 8-10 range. Although I struggled with bleeding at the staple line a few years ago that contributed to the problem, other times there really was no rhyme or reason for my deficiency, as all other tests checked out and my diet was not lacking. My anemia has been under very good control for the past year (hemoglobin has remained in the 12-14 range), but my GP has told me that I will in all likelihood always require some form of iron supplementation. Right now I take a lower dose oral iron for maintenance.  It could be that your son may require ongoing supplementation, either through transfusions or orally.

Just as an aside, there's a big difference between men and women in this situation. Women do have an obvious source of bleeding until menopause.