[lukacspat]

Californiagirl- I still have my gall bladder. I was diagnosed with pancreatic insufficiency early on which I think confused the issue because they thought that pncreatic insufficiency was the root of the problem – not revlimid. I was out on meds for it which didn’t help. The GI doc prescribed colestipol immediately after finding the study but never specifically tested me for malabsorption. I didn’t have any more tests – and didn’t need to since it worked quickly. Honestly, I wouldn’t do any more testing until after you try the colestipol. If you’re like me, you’ll see results pretty quickly and your quality of life will improve dramatically.

[lukacspat]

I had test after test – colonscopy MRI, utrasound, cat scans, many stool studies etc. I tried to get the doctors to understand how severe it was. I couldn’t go anywhere for fear of episodes. Most nights I would go through hours of excruciating abdominal pain. It was hell.The GI doctor sent me for a second opinion and they did more tests but and then found a study in the UK of a small number of MDS patients taking revlimid and having abdominal issues. Somehow they figured out that they had bile salt malabsorption.Once I started on colestipol (the pill – nott the powder), the results were almost immediate. But make sure they prescribe you the pill. There’s also a powder form which I could not tolerate – it was pretty disgusting. Why they didn’t prescribe the pill initially makes no sense. But once I took the pill the results were immediate and there were really no side effects to speak of. Truly life altering for me.

[lukacspat]

Sherry & Californiagirl,
I was on revlimid and had severe gastro effects every day for over a year. I was told that it was not caused by the revlimid. Don’t believe that!!! I was sent to my GI who originally say it was IBS – not revlimid. After many tests and being recommended to some really good doctors at University of Pennsylvania Hospital, they discovered that revlimid creates “bile salt malabsorption”. They put me on a cholesterol drug (I don’t have high cholesterol) called colestipol. It was like a MIRACLE and has really made things so much better for me. I told the pharmacist that I talk to when I get my revlimid counseling and she as been informing others as well. Please tell your doctors about this. Hopefully it can help you.

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