Hi Marianne,
Just a quick question...what are your origins? Not a political question here but certain people from certain origins have a syndrome called favism...a chronic anemeia often related to people with origins in the Mediterranian basin...favism comes from 'Fava beans' and the fact that they aggravate the syndrom...seems that it has something to do with an enzyme in the red blood cells (glucose 6 phosphate deshydrogenase) and the shape of them....
Hubby had been having chronic low hymaglobin and the doctors couldn't figure it out...iron wasn't helping and in the end they sent him to a hymatologist who took one look at him and asked him where he was born...They said not to worry, it is chronic but not dangerous but to stop eating fava beans!
No other bright ideas other than maybe the type of iron that you are taking is not biodisponible and therefore not helping or you are a tea drinker...
Hope they find what is wrong with you and please tell them that taking blood out of you is Not helping!
Sharon

Hi Sharon,
I'm mostly Italian with a little Swiss in me. Funny you bring this up. My surgeon told me about people of Mediterranean descent being notoriously anemic. However, I never had any issues prior to being diagnosed with UC. Interesting about the Fava beans. I don't think I have ever had them. Crazy stuff. No, I'm a coffee drinker not a tea drinker.

I'm sure I will get to the bottom of this. This guy is really good that I am seeing....very thorough. Thanks!

Hi mgmnt. I have the exact same problem. I have been anemic for years and also required iron infusions recently. My iron was also lower after jpoich surgery than with UC. My gi always said it was low iron related to chronic illness and disease. I'm not sure why we still have it now that the diseased colon is out. It is so frustrating. I am always fatigued snd the infusions only seem to be a band aid. Sorry about your situation. The iron should help even if temporarily. Also do you have a heavy menses if you still get your period. My fibroids also contributed to my issue.

marianne-
you will feel so much better about with your iron infusions. I had a series of 9 last year and didn't notice a difference until #5 and then wow.. I was a new person. I had no idea how bad I really had been. Dr.Shen at CC once told me that it is not unusual for jpouchers to become anemic. But they do not know why and he also said there is not enough research being done in that area.

Anemia of chronic disease is very different than regular anemia and I think is treated differently. I'm seeing a doc tomorrow myself as my iron stores are completely depleted again but the last doc didn't do anything cause my hemoglobin was ok. But I have all the symptoms of iron deficieny and I just have to make them do something.

If you are truly Anemic supplements aren't going to help. I laugh when someone told me to try them. I have been getting infusions for over a year now. Iron infusions can stop working for some people. Maybe a blood transfusion would help you. I hate getting them but..

Yeah the oral iron hasn't done squat for me. Hopefully the infusions will help. Thanks for the replies everyone.

Yes, iron supplements are useless if you have completely depleted iron stores. Problem is some docs fail to regularly check the iron stores. And they wait til the hemoglobin drops until they think about doing anything.

I'm over 10 years out and the beginning of this year my iron count dropped and I had to have some infusions. No pouchitis, no bleeding, who knows. The last blood test was good. Maybe not eating enough iron rich foods.

I'm 12 years out and every so often my iron count goes down. In fact the beginning of the year it was down and I had to indure iron infusions, which give me migraines. No pouchitis, no bleeding, low sed rage, who knows, maybe not eating enough food with iron? Last blood test came back fine.

Do you guys find that if it's just your iron stores that are depleted (but hemoglobin, RBC, etc. ok) that you can still feel awful? Everything I find on the web says that you shouldn't notice until you are actually anemic, but then I read some other things that say low iron stores actually affect athletic performance. To me, then it stands to reason that it could effect normal life too.

Have your doctors ever said that even low iron stores can cause problems (despite ok blood counts) or have you subjectively felt bad with just low iron stores?

Mgmt,

Let me know what you find out with your iron...

I was put on daily iron last summer with anemia and I'm still taking it. I felt better once I started taking the iron but I honestly think I had more energy/stamina before my surgery.

Hope you get to feeling better mgmt...

Thanks...I will post back. I have my first iron infusion this Friday and hopefully they will have all my lab results back too to go over with me.

Mgmt - i'm curious about what type of iron infusions you are getting. My daughter used to get one particular kind of iron infusion from the gastrologist, but when she started going to the hemotologist she a ferritin (hope that is the right word) and then a second type of iron infusion. I think the infusion she got from the hemotology was better and they also gave her shots of B12. She has not had that happen so far with her jpouch (of course her takedown has only been 3 weeks). Hopefully your hemotologist is doing something similar with the ferritin, etc. It definitely made a difference.

Bethie,
The only thing it says here on my sheet is Ferrlicit infusion. Glad to know it helped your daughter.

Marianne,
I had the same situation...4 1/2 years out, I take Iron supplements that work for me, for the most part. I NEVER had issues before surgery, but required 2 infusions within a couple of years after. They could never say why exactly...didnt matter...it worked and that's all I cared about. Now I take the supplements (Feosol) and it's all good. I know it will work for you. Good luck!

Thanks Laurie K

Marianne,
How did you make out? Well I hope. what infusion did you get?

Hi beckysmom,
Thanks for asking. I go tomorrow for my first one. On the sheet they gave me it says I am getting Ferrlicit.

I thought I would update this since there may be some people dealing with the same thing.

I had my 3rd iron infusion today and I have noticed a difference already that they are helping. I have 5 more to go. I still haven't seen the doctor again to go over my blood work results but the nurse giving me the infusion said that if they didn't call right away then nothing alarming came up in the blood work. Whew! This is definately working better than taking oral iron 2x a day and getting nowhere. I get my levels checked in two weeks and see the doctor then.