Iron options - anemic for over 3 yrs - what should I do?

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*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 10/8/2008 6:42 PM (GMT -7)   
So to cut a long story short; I’ve been anemic for over three years now. I had a specialist appt yesterday and my hemoglobin is lower than ever before. inflammation up higher than ever before.

The iron supplements my gastro suggests just stuff around with my stomach, to the point that my BM’s are a different color, consistency, and are more ‘disturbing’ then when I don’t take the iron.

I have been told to take two a day of these ferro-gradumet tabs, and just cant handle it. I asked for iron infusions but I don’t have private health cover and therefore they cost $400 a pop which I simply can’t afford.

It’s so tiring mentally and physically feeling like this, on top of crohn’s everyday – I now work full time. Sometimes I have to go and sleep in my car at lunch because I’m simply so exhausted, and 10 hr sleeps at night aren’t enough.



Has anyone had any better luck with the iron tabs which also include folic acid? My specialist recommended these and I will try them, but I don’t see how they’re going to be any better if they include the same ingredients and simply have folic acid added.

My only other option is iron injections from my GP, which I have heard are extremely painful and leave scarring on your skin.

What do you think I should do? Keep on keeping on with the iron tabs and the way they affect my tum, or try the injections?

Thanks guys, hope you’re all well

P

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 10/8/2008 6:45 PM (GMT -7)   
I don't know which iron tablets you are taking but if they are ferrous sulfate think about switching to vitron C which has vitamin C included-your body needs c in order to absorb iron-or gentle iron which you can get at a health food or supplement store. The ferrous sulfate makes almost everyone have GI issues. I don't have problems with the others I mentioned.

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 10/8/2008 6:51 PM (GMT -7)   
i've been dealing with anemia for over a year (i had 2 transfusions in that time). i just may have beat it cos my blood work came back to where my hematologist was happy, but i'll get my iron stores rechecked in 6 mo to make sure.

first, get a hematologist and make sure the doc listens to you and does more than just monitor your blood and prescribe iron pills. it may be the protocol at first, but if things arent getting improving you want a doc to do more. if you are super bad, iron infusions may be the way to go.

most docs recommend taking ferrous sulfate. this is the form of iron found in otc stuff, like slow-fe. it greatly constipates you. dont take it. go to a health food store and get a brand there. talk to the person in the dept as a good store will have knowledgeable people. i used the brand by solgar (i think that is what it was). i was never constipated and i was taking up to 6 pills/day.

your stool will turn dark on iron supplements. my hematologist told me that was a good thing - it indicates that the body is absorbing the iron.

eat iron rich foods: spinach, kale (dark leafy greens, but those 2 are best), red meat (beef/bison/lamb) cooked medium rare at best, liver (stir it fry it quick like shrimp in coconut oil with some garlic and red onion - trust me, it is a mental thing like sushi).

get your b 12 levels checked too.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 10/8/2008 7:29 PM (GMT -7)   
I've been anemic for as long as I can remember. Some years have been far worse than others. Iron shots in my "rear end" were ultimately what helped when I was at my worst. Quite a painful shot that bruises and can stain but worked quickly. These days I take a generic ferrous sulfate. Have tried many brands but the "fillers" often irritate me---look for lactose. In the past, I've made shakes with brewer's yeast which is known to be high in iron, B12, and protein. These days I can't tolerate any leafy greens with the amount of D I am experiencing. . . so I am relying on the pills and my birth control pill which contains iron. Avocados are also good. I've tried to use fresh herbs like parsley, basil, and oregano. . .sometimes I digest 'em and sometimes I don't.
Good luck!!
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa, just started humira


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/8/2008 7:37 PM (GMT -7)   
Sorry to hear this Phoebe :(.
I have had the iron shots from my GP and they do sting a little and a year after my last I still have a mark that looks like a bruise on my bottom cheek, but it was well worth it. I only needed three shots to get me on track (not sure I was quite as anaemic as you though) and my iron levels are up where they should be now. Maybe you should give the GP option a go.
Good luck with your decision.
Jo

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/8/2008 8:00 PM (GMT -7)   
Phoebe, I think your specialist is referring to Fefol. Definitely try it. My specialist told me that it's the tablet pregnant women take *because* it's the only one that's unlikely to upset your innards.

Why aren't iron infusions covered by Medicare? That sounds weird to me.

Yep, I just looked up the PBS database. Iron infusions are on the PBS. Here's a URL for you

PBS.. I don't know if that's the sort of iron that they were thinking of giving you, but at least it looks as if something's available!

I'm sorry you're dealing with this. I'm sure it's hard.
Co-Moderator Crohn's Forum.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 10/8/2008 8:25 PM (GMT -7)   
I've been anemic for a year too. I've tried all sort of different pills and they all kill my stomach, which in turn makes me even more anemic. I had a iron infusion a few months ago but my hemoglobin is already back to where it was. I eat spinach almost every day, I eat chicken livers 3 times a week as well as bison.

I don't know what to tell you. It really sucks that you can't try some infusions.
Dx'ed in 1999. No surgeries.

Current meds: 100 mg 6MP. Just finished prednisone taper. Udo's Choice Probiotics (30 billion).
 
Betaine, digestive enzymes, Candicin (oil of oregano capsules), Beta Sitosterol.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 10/8/2008 9:31 PM (GMT -7)   
Firstly, thank you all so much for the generous replies! You’re all so lovely; I don’t know what I’d do without this place sometimes!

I have been taking the tabs with Ribena juice to up the vitamin C, and will continue to do that.

Thanks for the link, Ivy, will definitely look into it!! My specialist doesn’t seem completely sure on these types of things, he gets this confused/unsure look on his face, which isn’t exactly the most reassuring thing for me! Don’t get me wrong, I’m sure he knows his stuff when it comes to crohn’s and my insides, I just don’t think he’s too clued-up on the iron side of things, after telling me for three yrs to take iron supplements, when they’re obviously not working!

I will definitely try the Fefol. Do you know if it’s as ‘strong’ as the other iron tabs? Is it used for iron deficiency or just to keep levels up?

I have another appointment with my gastro in a month, he’s sent me off for a CAT scan of my abdomen/pelvis to see if it’s spread, so I wil take the fefol and see if things improve iron-wise after that. Late-night shopping tonight so I am off after work to buy myself some fefol!

Its very frustrating feeling like this all the time, the only time I really feel energized is if I’m on pred! Then I feel amazing and it makes me sad, because I constantly wonder what day-to-day life would ‘feel’ like without crohn’s. Sad when I’m only 22!

Oh well! Can’t get down on myself!

eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 10/8/2008 9:47 PM (GMT -7)   
carbynol iron myte be better i tried every type of iron too had to resort to iron infusion which is free here,cant believe you have to pay!
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 10/8/2008 9:52 PM (GMT -7)   
The cause of low iron in Crohn's is the endotoxins that are released from killed gut bacteria as a result of immune system or antibiotic action. They enter the blood and bind iron. The best way to help this is to reduce gut permeability: a probiotic (Lactobacillus reuterii may be easier to find, and less likely to be confused with another species with a similar name); Glutamine (reduces permeability and helps healing of gut tissue - the body's store of glutamine is depleted by inflammation); zinc (50 mg - take separately from iron as they interfere with each other's absorption) Zinc citrate is preferable for rapid absorption.
You also need a reliable iron supplement. The iron - vitamin C combination sounds reasonable, or you could look for ferrous citrate or ferrous ascorbate. Take the iron just before eating and at a meal where you are not also taking zinc or your multivitamin or vitamin E. Drink a glass or two of water a few minutes before taking the iron.

Osprey101
Regular Member


Date Joined Apr 2008
Total Posts : 227
   Posted 10/8/2008 10:12 PM (GMT -7)   
An interesting note on Crohn's and iron levels: this may be a sign of infection by MAP. This may be one reason why supplementation with iron can cause such distress. From "Biology of the Mycobacteria" by Ratledge and Stanford in 1983:

"The pathogenic mycobacteria are among those organisms for which there is compelling evidence that the availability of iron as a microbiological nutrient plays a critical role in infection. Further, A normal host response to infection is a depletion of iron availability with an increase in the amount of unsaturated serum transferrin, which can render the serum bacteriostatic.This property includes extracellular as well as intracellular growth of mycobacteria."

In other words, the body "hides" iron away from the mycobacteria after infection. Whether this is true with MAP or not is a matter of conjecture; the only study on the subject is maybe 20 years old, done in cattle, and there was no effect noted when iron was withheld.

The information from Elaine on iron supplementation in "Breaking the Vicious Cycle" may be of interest.

http://www.breakingtheviciouscycle.info/knowledge_base/kb/iron_supplements.htm

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/9/2008 2:11 AM (GMT -7)   
Just a word of warning about the Ribena: I'm not sure if it contains much Vitamin C. I seem to remember a minor scandal and a court case. Weren't they prosecuted for misrepresenting the Vit C content in the drink? I could be wrong; it's just a vague memory; but either way, I think you might be better off drinking some OJ, as at least pure juice doesn't have added sugar and colouring.

I think the Fefol helps with deficiency. My gastro put me on it when I had anaemia. It didn't really help me, but I was pretty badly malnourished by that stage. I hope it helps you.

Ivy.
Co-Moderator Crohn's Forum.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/9/2008 7:25 AM (GMT -7)   
I am anemic too, so I feel your pain. I luckily with my insurance, just had a iron infusion this past Monday. I am not feeling any benefits from it yet, but my GI told me it takes a few weeks for the iron to be absorbed by your bone marrow and start making new blood. My anemia to my and my GI's knowledge is not from loss of blood, but because of the diet I eat (low residue) to keep my Crohns in check. I was told you would have to eat 15 lbs of chicken liver a day to equal the amount of iron you get in one iron tablet.

Can you appeal the insurance decision not to cover the iron infusion? I think that would be the best way to get your iron stores up.

Good luck,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 10/9/2008 11:18 AM (GMT -7)   
Calcium carbonate in the form of an antacid or as a calcium supplement interferes with iron absorption. You might try eating blood sausage as well as taking an iron supplement, since the heme iron in it is absorbed by a separate pathway.

about the B12 levels - if you are B12 deficient, fixing that deficiency will make the iron levels drop initially. It might pay to ask your GI about polymixin B which is an antibiotic which binds to endotoxins. You may be able to increase your iron levels more easily if the endotoxins are reduced.
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