Just found this group after 20 years [correction - 30 years!] living with bile salt malabsorption from radiation to treat leukaemia.
I reckon my weight has been a steady 20% less than it should be. And I have a very low BMI.
Cholestyramine has made a HUGE difference to my condition.
But has anyone found a way to increase weight?
I'd love to gain even half a stone!
Hi there, I too suffer from BAM as a result of radiotherapy. Initially I lost a lot of weight but when it was diagnosed and treated I've slowly been able to increase. Now I'm still slightly underweight but nowhere near the extent I was!Basically BAM is triggered when you eat high fat foods, even the good fats! So I stay away from fried, fatty foods and eat lots of lean meats and carbs (mainly white carbs). Putting on weight is calories in v calories out, so making sure I'm eating enough and notoverdoing it with daily calorie expenditure is key. It does mean eating a LOT of carbs! I also have Fortijuice drinks on standby for times when I feel I haven't been able to get enough in. These have helped loads!
Thanks - how was your malabsorption treated? Have you find changing your diet does actually help?
I had a sechat scan which showed severe BAM and was given Cholestryamine. However due to the damage done in my bowel I'm unable to tolerate them (I ended up in a&eon a couple of occasions with the pain). So I worked with a private dietician that I sourced and together we were able to control it via diet alone. Fat is the biggest trigger for everyone, so definitely try to stick to a low fat diet.
Wow! 20 yrs! Sorry that you are having this problem. I'm curious to know how you found this diagnosis out? I've recently lost 10 lbs because everything I eat causes bloating, gas and then I have many many bowel movements. The only thing that helps me is immodium and peppermint capsules. I had to stop eating any milk products, green veggies, chocolate, whole grains and I can only tolerate lean turkey or chicken chopmeat.
30 years! I've had every test under sun, it seems. And that's what it looks most likely to be. Cholestryamine give me a 60% improvement. And I've been on that for 20 years. Have you tried cholestyramine?
No, as a matter of fact I have never heard of it. Do you need a prescription for it? What does it do?
You will need a prescription. It improved my diarrohea by 70%. I don't use immodium cfspharmacy.pharmacy/blog/p...
Hi. I too am very underweight and can’t put it on.
I’m 12 years on from pelvic radiotherapy and suffer bile acid malabsorption, my gastroenterologist put me on Cholesevalem (a cholesterol reducing treatment) which I’ve been taking for 11 years now, I wonder if it’s similar. I have a very low fat diet too but the drugs enable me to function pretty normally otherwise. I have been unable to put weight on and now have a wardrobe to fit my new shape. I’m not expecting things to change, I just live with being skinny!
I hope this forum helps you and gives you support.
I’m on a high dose of Colesevelam which I think must be similar to Cholestyramine. My problem is that the body adjusts to the dosage, and needs an increasingly higher dose to achieve the same benefit. To the tune of the song from The Jungle Book: “I’ve reached the top and had to stop and that’s what bothering me”! I’m 58 and always been on the slender side but can put weight depending on what I eat. When I was working, I’d have something like a panini for lunch every day from the work cafeteria, and eat a lot of biscuits during the day to help with hunger and stress. And the more cake I eat, the higher my weight. 😃 My diet is generally low fat but I seem able to tolerate cake! 😂
is this likely to be late radiation damage? Blood in urine. 
How did you find out about PRD?
6 Months on and we’re making some progress 🌞🌞
Severe B12 deficiency 
Hi Everyone, I'm new to this but so glad I found it. Thought I'd introduce myself....no point in holding back!
