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  • gastrointestinal absorbtion dysfunction & chronic bleeds

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    Old 10-19-2009, 12:07 PM   #1
    GIAD
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    gastrointestinal absorbtion dysfunction & chronic bleeds

    I discovered back in 04 that I had ulcer in sm intestine. Tested at Mayo and Mayo cannot find cause for bleed. I take meds to keep the bleed small and occasional. I also discovered through this testing that I had Gastrointestinal Absorbtion dysfunction GIAD (inability to absorb iron orally from food or supplement) I have had ablation to minimalize blood loss and still have occ. sm intestine bleeds. Coupled with the GIAD i have chronic iron deficiency. I can do Iron infusion when my iron panel levels drop. It is sneaky as my hemoglobin can maintain "ok" levels while my saturation, iron, and ferritan levels drop. So beware...CBC does not tell the story. My oncologist & IV Iron keep me healthy. Are there others out there like me? Are there other treatments that can help? The combination is not common. Any feedback from others like me would be appreciated. Thanks.

     
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    Old 10-22-2009, 09:36 PM   #2
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    Re: gastrointestinal absorbtion dysfunction & chronic bleeds

    This last year my daughter has had 2 intestinal surgeries, and now seems to have also the lack of absorbtion and anemia with low ferritin level, now up to 9, and also has hair loss which is quite upsetting to her. She has been taking the iron pills, but have been constipating, which is taking steps backwards after her operations. So she has been taking a liquid (can't remember the name right now) from the health food store that is not constipating, but the levels are not rising fast enough for her. She is very tired, aand the doctor is trying to find out what the heck is going on but, it is taking along time. Malabsorbtion? or what? we don't quite know. She is in her 30's , fatiqued and getting frustrated. any suggestions?

     
    Old 10-23-2009, 07:29 AM   #3
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    Re: gastrointestinal absorbtion dysfunction & chronic bleeds

    I am sorry that your daughter has these challenges. My suggestion is for your daughter to see a good Oncologist/Hemotologist about the iron levels. This is what saved me. They are the best at dealing with this and perhaps find out if she is having GIAD (Gastrointestinal Absorbtion Dysfunction) as many times surgeries on the intestine can lead to problems with iron absorbtion. (GI doctors don't seem to have a good handle on this) She may be a great candidate for Iron Infusions. (i ususally do one treatment @week for 8-12 weeks to get my levels back up. Note that Iron Infusions take 2-3 months to bring levels back up as the absorbtion process is a slow one but sure and steady. Addressing the constipation and GI health: I am on Citrucel tablets double doses twice a day (please note that Mayo said ONLY Citrucel or its generic as other fiber pills let off a gas that makes the intestine bulge and that is bad for folks like us), Ducosate 250 1 time a day & simethicone 1-2 @ day, and ranitidine for the rest of my life as well as . This keeps the stress in the intestine as low as it can be and keeps constipation from occurring even during iron treatment. This is crucial according to Mayo Clinic. The Ranitidine keeps acid levels low and heals the tiny tears and ulcers that occur in the intestine to reduce chronic blood loss. Talk with an Oncologist to run an Iron Panel- the iron levels and the saturation numbers are very important to watch as well as ferritin. Good Luck to your daughter.

     
    Old 04-15-2011, 10:46 AM   #4
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    Re: gastrointestinal absorbtion dysfunction & chronic bleeds

    hi there

    i know this message was posted some time ago but i too am having issues with retainig iron after IV Iron as it gets depleted within 4 - 8 weeks from infusion and then also my hb dives down. was just wondering if your still having the problems and if you know the cause of the iron loss?

    Thanks in advance!

     
    Old 04-18-2011, 08:12 AM   #5
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    Re: gastrointestinal absorbtion dysfunction & chronic bleeds

    Quote:
    Originally Posted by crohny View Post
    hi there

    i know this message was posted some time ago but i too am having issues with retainig iron after IV Iron as it gets depleted within 4 - 8 weeks from infusion and then also my hb dives down. was just wondering if your still having the problems and if you know the cause of the iron loss?

    Thanks in advance!

     
    Old 04-18-2011, 08:25 AM   #6
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    Re: gastrointestinal absorbtion dysfunction & chronic bleeds

    Dear Crohny,
    Yes, I still have to get IV Iron, in fact I just got done with a 10 week run of treatment in March. My oncologist told me that as long as I lose blood, I will have to go back into treatment every once in awhile the rest of my life to restore my iron levels in my "iron warehouses". In your case, I would search for blood loss. If you are female- take a look at your monthly periods. Those are a huge source of loss each month. Gastrointestinal bleeds are another constant source of blood loss that is sneaky. Stomach, small intestine & large intestinal bleeds can occur without much knowledge or fanfare. I had a uteran ablation to stop the larger source of blood loss monthly and that has cut way back on how often I have to do Iron treatment. If you are GIAD like me, there is no absorbtion from any oral source (food or supplement) for iron to replenish your iron stores. The only way is through IV iron. Just remember, one can be iron deficient without it showing on regular CBC. Hemoglobin can stay floating within regular levels while your iron stores depleat. It is the last thing to show and when it does- you are in poor shape and you have to take twice as long to get it back. Talk to your doctor about pulling iron panels and watch your ferritin, Iron, UIBC, TIBC, and Saturation %. These are the really important numbers to watch. Good luck to you.

     
    Old 04-18-2011, 04:55 PM   #7
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    Re: gastrointestinal absorbtion dysfunction & chronic bleeds

    Thanks GIAD

    I am a 31yo male. so far ive been having infusions every 6 - 10 weeks for last year, as well as blood transfusions for the low hb. had a colonoscopy and gastroscopy done, plenty of inflammation due to the crohns disease but no obvious source of bleeding. getting a pill cam done in the next week or so to see if it can provide a better picture of whats going on in the GI tract.

    Thanks for your help!

     
    Old 04-19-2011, 07:41 AM   #8
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    Re: gastrointestinal absorbtion dysfunction & chronic bleeds

    Quote:
    Originally Posted by crohny View Post
    Thanks GIAD

    I am a 31yo male. so far ive been having infusions every 6 - 10 weeks for last year, as well as blood transfusions for the low hb. had a colonoscopy and gastroscopy done, plenty of inflammation due to the crohns disease but no obvious source of bleeding. getting a pill cam done in the next week or so to see if it can provide a better picture of whats going on in the GI tract.

    Thanks for your help!

     
    Old 04-19-2011, 08:08 AM   #9
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    Re: gastrointestinal absorbtion dysfunction & chronic bleeds

    Quote:
    Originally Posted by crohny View Post
    Thanks GIAD

    I am a 31yo male. so far ive been having infusions every 6 - 10 weeks for last year, as well as blood transfusions for the low hb. had a colonoscopy and gastroscopy done, plenty of inflammation due to the crohns disease but no obvious source of bleeding. getting a pill cam done in the next week or so to see if it can provide a better picture of whats going on in the GI tract.

    Thanks for your help!
    Dear Crohny,
    I did several of both of those too and we did not find the bleed until I did the pill cam too. It is in my small intestine in the middle of the 20 feet, of course, where no one can get to it. I just have to stay on "hole repair" meds (such as prilosec,previcid,zantac etc.) and digestive health meds & supplements for the rest of my life as the alternative is surgery to remove that section of the small intestine and that is life threatening. So as long as I can keep my iron levels with the meds and control blood loss, then I maintain. It took awhile to get the bleed down to a trickle. The pill cam is quite wonderful. Saved me from having more transfusions and hospital stays because I was able to get diagnosed. But seriously- See an oncologist/hematologist and they can help you maintain. Good Luck with the cam. GIAD

     
    Old 04-20-2011, 08:10 PM   #10
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    Re: gastrointestinal absorbtion dysfunction & chronic bleeds

    I have gastroenteric arteriovenous malformations and have been hospitalized several times for transfusions while determining the source of the bleeding. After the diagnosis I went weekly for iron infusions but they weren't working and I developed an allergy. My hemoglobin dropped to 7 and my Ferritin was 3 every month until I was transfused with blood. The iron never brought it up much and it fell back down quickly.

    Today was my second treatment with a new type of iron infusion called Feraheme and I don't need to go back weekly. It's only two infusions total. They'll test me in a few weeks and decide if I need to do it again. I feel better than I've felt since this all began and hope it holds for awhile. Plus it only takes 20 minutes!!

    I did the camera too and mine is also in an area that's inoperable. I agree with seeing an oncologist/hematologist. But that happened for me after I was diagnosed and other things were ruled out.

     
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