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I just got a call from my GP. My hemoglobin is low again - after being a lot better in April. I thought things were settling down. I did have my period when I went for the blood draw so maybe it wasn't the best time to have bloodwork done, but still. The results have been faxed to my GI and I'm just waiting now for his office call me back to advise what the next step is. Clearly this has been going on too long and I just want some answers so I can move on with my life. I am seeing my surgeon for a follow up next week (at the request of his office), but he hasn't been involved in any of this, since I the last time I saw him was in 2009. But I will certainly try to pick his brain for ideas.

Anyway, "perfect" pouchoscopy in January, negative MRI enterography in February. But I am still having intermittent bleeding. No other symptoms, pouch function itself is fine.

I however, remain frustrated.
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I have been dealing with anemia for what seems like forever now even with my well functioning j pouch. However, I don't have any visible signs of bleeding. It's just a complete mystery and yes, very frustrating.

I see a hematologist now since my GP, GI and surgeon had no answers for me. He has gotten me to a much better point now although at my last follow up I dropped again. I have had some iron infusions and they helped immensely. It was the only thing that helped....oral iron did nothing. I was really depleted though and now I am hoping the infusions got me over the hump and the oral iron will help going forward. Only time will tell. It's still aggravating since I don't know why.

Hope you can get some answers from your surgeon. Mine was the least helpful on the subject.
Yeah, it's frustrating to have to deal with these things, especially when the element of the unknown is involved. I struggled with anemia in the past, but until I started having this bleeding issue late last year, my hemoglobin had finally been pretty stable. I was severely anemic with UC, to the point I required 2 blood transfusions just to get me out of the danger zone. It was low for the next 2 years but gradually got better with oral supplementation. It's been "good" since my takedown.

However for me, anemia is a secondary problem. The primary problem is this on and off bleeding, the source of which nobody has been able to pinpoint yet. It's baffling because the pouch itself is fine. Like I said, I just really want some answers because it's high time I moved on. 6+ months of this nonsense is 6+ months too long. We're all baffled because my tests are otherwise fine. Nobody can figure out where this bleeding is originating from.
I would definitely advise being referred to a hemotologist. I don't believe there is much the surgeon or GI Dr is going to do for you at this point. It seems you have some type of deficiency and those 2 drs aren't the ones that are going to order the proper blood test that you need to get the info you're looking for. I saw a hematologist on the 23rd which was great. She order a bunch of test and even gave me a B12 shot before I left. I was a little nervous when the lady taking my blood came over with 10 viles and set them down. I asked her " are all those for me ? " and she said yeah we do test here that nobody has ever heard of before which gave me a piece of mind knowing I was going to get tested for a variety of things. I have also been riding the anemia train for a long time which is what led me there. Luckily after I got the results my hemoglobin was higher than what it has been. I'm taking oral supplements right now ferrous sulfate twice a day 325mg. This seems to be contributing on top of my diet. I feel this is the next best thing for you if you haven't seen one yet. Good luck hope all works out.
Thanks for the replies.

At this point, I don't feel that a hemotologist can really be of much help, as that would just be a "bandaid" solution. The problem is that I am bleeding somewhere in the GI tract, and the source has not yet been identified. I can pop iron pills all I want, but until we find out why I'm bleeding we won't get to the root of the problem.

At this point, my hemogloblin is not excessively low (it was 139 in December, 113 in March, 120 in April, but now we are down to 109), but it's below normal and has recently dropped again. I was much lower in the past when I had UC (literally I was at 52 and needed several blood transfusions).

Basically, I'm frustrated because I never imagined it would take so long to get this sorted out. I generally enjoy an active lifestyle and while I am keeping up with activities, I've cut back on certain things, like the intensity of my workouts. The point is, I was doing great for about 4 years until I hit this kink. Now I really just want to get on with my life.

UCWarrior: 8.5 is low. You should probably be on an iron supplement if you are not already.
Spooky,

I'm sorry to hear you are still struggling with your anemia.

I have the same issue. It has been happening since the onset of my UC, through the j-pouch and I now have been Dx with CD. I was told by my doctor that anyone who has a shortened gut is never going to retain the amount of nutrients, iron, folate, etc that a person with a colon will through food.

I have also been told that unless you dose yourself with alot of Vitamin C at the same time as you take iron, have it infused or transfused, it will not be nearly as successful.

I am currently working with a team of doctors, for a variety of reasons, but also for my extreme anemia. The Vitamin C injections they do simultaneously have definitely helped my levels. My current level has rose 5 points within one month from 86 to 91.

~Tammy

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