Well I did the endoscopy and colonoscopy last week. Am happy that they found nothing new just a suggestion for another in 10 years…Yea So the Gastroenterologist suggested Cholestyramine. I think it may be contradicted in kidney patients and people whom have had intestinal blockages. Wow… now to see if primary care Dr and Kidney Dr agree to it. I think I am having what they call bile acid malabsorption? Anybody have any experience with it? Still nothing to say what is causing the anemia ( unless they take my own opinion of anemia of a chronic disease) He suggested a med for the anemia since my body doesn’t absorb iron well but I can’t recall the name .
Anyone else have iron infusions before? My daughter has been suggesting it.
Thanks everyone for being here and listening
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Chimama
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I’ve had iron transfusions and it wasn’t too bad. It didn’t really help me, but my insurance kept trying to avoid paying. But it paid! I had it for a week. I’m still anemic. I felt like I had a little energy.
Hi Chimama, am glad to hear they found nothing on your endoscopy and colonoscopy. Could I please ask you about Cholestyramine bring contraindicated in CKD? I have just started taking it since November after endoscopy and colonoscopy as the surgeon prescribed it for bile induced diarrhea which I have as a result of having gall bladder removed a few years ago. I did not realise that the Clolestyramine could be harmful to kidney? Have GFR 20.On your anemia, if they are suggesting EPO as it is very helpful. Also iron infusions are very helpful if you can't absorb oral iron.
Thank you I was so relieved and I found the contradiction in the medication side effects and warnings regarding the drug . I too had my gallbladder out in 1986 and have suffered the diarrhea since then. Travel ha ha what a trip starve for hours on end to wait until stopping for the night .
Can’t go out to eat anywhere always take out then eat at home if I try a restaurant with family I order mine to go or sit and push food around on plate. Most of the time end up in bathroom and end up telling them to call me when they’re ready to leave.
Then after small bowel blockage it just increased with excuse description but like a mucous gel alternate with constipation gas so loud anyone can hear. Panic and anxiety. After 4 years have finally gone from 97 pounds to 110.
I’ve always been anemic seems like. With RA MCTD Raynauds fibromyalgia Sjögren’s syndrome . I feel hopeless and isolated. So depression added in the mix.
For everybody who has or are taking the Cholestymine does it help? My daughter had tried it but ruined her teeth so she had to Stop. Thanks 😊
Like Pontios, I had my gallbladder removed also. My liver has a tendency to release more bile than is needed which I believe is the cause of BAM in me. Bile is supposed to be reabsorbed back into the small intestine and not get passed into the colon. I will sometimes have multiple trips to the bathroom after certain meals because of this. I was getting iron infusions back in 2017 and 2018 when I was on dialysis. My neph checks my iron and ferritin levels about every 6 months. I found out that the US Medicare system won't pay for those 2 lab tests because they say they are not part of a CKD diagnosis code.
My iron saturation is about 6-12% hemoglobin 9 and hematocrit 28 iron pills do nothing my Vitamins and b12 supplements help very little. My kidneys are fluctuating around the 39’s and 40’s I think it may have gone in the egfr range to 3a sometimes. But I fear this last round of Suprep bowel pep has lowered them yet again. I feel bloated and very, very nauseous. Trying to drink a lot of water but hard to when you feel like it’s going fly back up. I may ask about the infusions and shots. I was trying to plan a much longed for trip this Mothers Day to Grand Canyon so want to have a good time but fear of bathroom and fatigue scares me I’ve try mapping out every restroom there is😭
I had an iron transfusion on Mar 3 and have had a shot of Aranesp for my anemia caused by CKD. My anemia got worse once I started dialysis thus the meds.
I did not know medicare wouldn't pay for certain tests like that. Luckily right now I'm still working so have group insurance. Of course at first my insurance balked at the shots but my PD nurse called and pushed it through.
I've been on Venofer (iron infusions) since 2001. I have them 3-5x week down to once per month. Medicare has always paid for those labs without issue. Never any issues or bad side effects. Blessings
It's not the infusions that Medicare didn't pay for, it's the lab bloodwork that is not covered. I've attached the form that Quest had me sign saying that I wanted to continue with having those tests. When I got my Medicare claim summary report, it said not covered for those two tests. I told my neph and he said that a diagnosis code of CKD should cover it but it did not.
I would dispute those charges worth a try. You would think with CKD Medicare should cover all tests ridiculous that they don’t . I’m sorry those are not covered it’s not right.
Hi Chimama, thanks for the reference to the Cleveland website. I must say though that the cholestyramine does work very well for diarrhea. No more needing to use the bathroom every time after I eat.
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