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Managing weight with bile issues (GERD and BAM)

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Old 04-14-2015, 01:36 PM   #1
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Default Managing weight with bile issues (GERD and BAM)

I searched this forum before I posted this, but I can't seem to find anything exactly like this, but apologies if I'm repeating anything.

When I was 19 I was about 135lbs I had my gall bladder removed due to gall stones.

This was a massive mistake.

Now, I have Gastroesophageal Reflux Disease and Bile Acid Malabsorption Type 3 (the "Type 3" bit basically means it's not organic, the NHS broke me).

Bile leaks back into my stomach and no amount of antacids, loperamide or proton pump inhibitors can solve it. The bile burns away the lining of my stomach causing pain and stomach ulcers. Due to the constant flow of unused bile (since it now has no reservoir to contain it) it's also exhausted my ileum and causes all kinds of problems. Basically my G.I. system is just a big old mess now.

One thing that does seem to work is cholestyramine. I have no idea how it works in my case, I don't think my consultant does either. But it helps (along with copious amounts of codeine).

So, here's the bit about managing weight alongside this condition. The best way to attempt to manage the situation is to use up the bile for its intended purpose (digesting food). So I almost view food as a medicine (which isn't exactly psychologically healthy either). The biggest challenge is night time because it's the longest single period without food and I often wake up with pain and then have to eat in the middle of the night. At present I drink a glass of milk before bed and I can mostly make it through, but now I want to stop eating at 8pm (milk included) and that'll just never work.

Does anyone else have anything similar and how are they managing it?

I appreciate this is a little niche and may not get any responses so to make it in some way useful to a wider audience, whilst I would never discourage having a cholecystectomy if it's needed, please please please challenge your doctors to explain why it's needed, possible other options and perhaps give you one chance to just have the stones removed and see if the problems recur.
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Old 04-14-2015, 01:52 PM   #2
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I do not have this condition nor have I ever heard of it. The only suggestion I have is to eat often, but very small amounts. Could you take the cholestyramine at bedtime? Would that help you get through the night? Is your doctor a specialist, who would have the latest information? I'm also wondering if a health board would have more information on this, and maybe some people who are going through the same thing.

Good luck to you!
Carol Sue
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Old 04-15-2015, 02:41 PM   #3
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Thanks Carol Sue. Another forum based on health is a great idea. I feel silly now for not thinking of it before, but since this is my first real forum, it didn't really cross my mind

I do take the cholestyramine at bedtime as well as once in the morning. Some days it works, other days it's less effective. But such is life. I guess all bodies have fluctuations in the way they work from one day to another
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