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Maintaining iron levels became a problem within two years of my j-pouch surgery. I am aware from previous posts on the forum that it is not an uncommon complication.

Cooking with iron skillets, eating spinach, eating red meat, chicken livers, copious amounts of eggs and adding ascorbic acid (vitamin c) Oral supplements have only caused pain and discomfort. The only thing that has worked are iron infusions however these are not without side-effects.

After listening to haematologists say that I may have had too much bowel resected to absorb iron and gastroenterologists finding that all my inflammatory markers are within 'normal' ranges I became frustrated with my inability to absorb iron.

From reading I have learned that it is the duodenum that is responsible for the uptake of iron in food. I still have that part of gut.

Hepcidin is a hormone that was only discovered in 2000 that is excreted by the liver that controls the amount of iron absorbed in the gut. It turns out that Hepcidin is excreted during chronic disease which can lead to Anemia of Chronic Disease (ACD) but it is also referred to as anemia of inflammatory response.

Even having mild inflammation in your pouch (or anywhere else in your body for that matter) will disrupt your iron metabolism as Hepcidin is produced.

Given this knowledge I insisted on being scoped and sure enough inflammation in the j-pouch was seen and also elsewhere in my ileum. The endoscopist was not surprised about the j-pouch having inflammation and commented 'oh we expect to see some inflammation in the pouch, that is normal'.

Chronic iron deficiency will likely damage your immune system and lead to further inflammation.

Here are some references so you can do your own reading:
Hepcidin is a key mediator of anemia of inflammation in Crohn's disease.

Iron, anaemia, and inflammatory bowel diseases

Hepcidin and iron regulation, 10 years later.
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Thank you so much for posting this info!!! I am going to carefully read through it. My anemia issues have not yet been resolved since my surgeries. I see a hematologist and get iron infusions but I am SO sick of the never ending cycle. Plus, because of my insurance, I have to pay out of pocket for the iron infusions. Just tired of being tired AND its so bad for all your organs to be chronically anemic.
Interesting stuff Dan! I was aware of anemia of chronic disease for quite some time, but had not read about hepciden as the primary mediator. It all makes sense now, as I never really understood why chronic disease caused iron deficiency, since the inflammation could be anywhere, not just the GI system.

So, it is important for all who suffer with chronic iron deficiency anemia to get properly diagnosed, or they will forever be looking for bleeding or taking supplements that won't work. You have to go to a hematologist for that.

Marianne, it is unclear to me why your iron infusions are not covered by insurance. Perhaps your hematologist is not putting the order in correctly, reflecting that oral supplements are not effective. It is like telling a hemophiliac that clotting factors are not covered!

Thanks again for the links.

Jan Smiler
My husband has his own business therefore we supply our own insurance. And in order to keep our rates from killing us, our plan isn't the greatest. I pay out of pocket the first $5000 for anything that comes up. Then after the 5 grand, I'm covered. A series of 8 iron infusions runs around $3000 which I paid for this past summer. And for us it only will get worse with obamacare. Ugh.
Marianne, i suggest besides getting your inflammatory markers tested insist that your serum hepcidin is also tested then get scoped and resolve the inflammation. I am on Humira as my gastroenterologist suspects my crohns has been bubbling away for a couple if years. The iron has mediated the inflammation but my energy levels have ebbed and flowed. It's surprising to me that it was my surgeon that referred me to the haematologist 2 years ago and no one has suggested that I might have active inflammation until now. Let us know how you get on.
OK, I understand now. It is not that iron infusions are not covered, but that you have a high deductible. We also have a high deductible HSA plan, so everything is 100% out of pocket until the deductible is satisfied. Easy to do when the pharmacy bill comes to about $3K per month. When we retire we will have to pay the entire premium in addition, so I understand the challenges. You either pay in premiums or in copays/deductibles. We live in a high premium cost county too. But, it seems that the rising costs are lower percentages than they used to be.

I think that Dan has the right idea though, to get your underlying inflammation under control, rather than chasing the losing battle of anemia. But, it would not save you money. Humira runs about $2500-3000 per month, depending on how often you need to take it, so you'd still be spending the deductible.

Jan Smiler
Pouch could be fine. Perhaps there is inflammation elsewhere on/in your body. Both eczema, dental inflammation (gingivitis/periodontitis) and exercise have all been shown to trigger hepciden release. in addition to having hepcidin tested you could also get you calprotectin tested to rule out intestinal involvement.

The patent for adulimumab (humira) expires in 2016 so hopefully competition wil bring the price down and make it more viable. I am in the very fortunate position of living in the UK where my consultant virtually gave me a menu of treatments to choose from. We have no concept of factoring cost in to these choices.
Oh, there is always a cost. What we'd pay in premiums, deductibles and copays, you pay in taxes. There is no free lunch! Anyone who thinks so, is kidding themselves.

No easy answers...

But, back to the point; yes, the chronic inflammation/disease does not have to be in the pouch or even the GI tract to affect blood cell formation. We tend to focus our attention on our pouches and sometimes that blinds us and our doctors to other issues. Having a j-pouch does not make us immune to other problems, particularly autoimmune. Many of us have developed other autoimmune diseases.

Jan Smiler
I'd suggest a collaborative approach with the doctor. It's hard to get where you want to get to if you "insist" on a test that the doctor has no idea how to interpret (or that no one has a very good idea how to interpret). You might be better off with a referral to somone who at least reads that literature than a test that will lead nowhere regardless of what it shows.
SED rate and CRP levels are nonspecific, and you can have significant inflammation without these being elevated. Plus, being nonspecific, they do not help you target treatment. They are more useful for monitoring treatment.

I would suggest discussing or showing the article to your hematologist to develop an action plan.

Jan Smiler

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