I have enjoyed the information sharing and support. There seems to be a wide variety of health issues but D is the most discouraging thing people seem to be dealing with and pain.
It's good to find somewhere with all the information I needed in one place. It helped me enormously when I was struggling to get the help I needed from my doctor.
There is a wealth of information on your site and I found it particularly helpful to read the stories from people who I know went through the same thing as me.
I've found the site very informative and it helped me to better understand my condition just after I'd been diagnosed.
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Bile Salt Malabsorption affects everyone differently. These stories, written by members of the BSM Facebook group, show how they came to have the condition, how it developed, how it affects them now and how they cope with it on a daily basis.
should consult a general surgeon about having it removed as it may be the cause of the pain. The surgeon said she was not sure if it was causing the pain but that we should go ahead and remove it since I had a big stone at the top. Once it was removed she said it was inflamed. I now think it was inflamed because it was full of too much bile.
The pain continued and shortly after the removal I started having sudden onset diarrhoea like I had never experienced before.
I'm a 35 year old female from the United States that has had stomach and bowel problems as early as my teenage years that I can remember. As a teenager I would throw up, what was probably bile, fairly frequently. I had several tests done but never a solid answer. I would also get hit with bad stomach pains and quick onset diarrhoea randomly anywhere from once a week to once every two months. I was told this was IBS. The diarrhoea became a little more frequent as I got older.
When I was 30 I began having a terrible pain in my abdomen. After an ultrasound I was told I had kidney stones. After passing them and still having pain my urologist told me I had gallstones and
I was going twenty times a day and it was extremely painful. I also was having accidents as I would only have about two minutes to get to a bathroom from the times I first felt the sensation/pain. On one occasion I made it to the bathroom just in time. I shocked when it sounded like I was urinating. When I looked in the toilet afterward there was only clear yellowish liquid in the toilet, nothing solid at all.
I began seeing a gastro doctor that tested me for everything. The only thing he found was that I had gastritis and duodenitis. In tears I told him about research I found and asked if I could try a medicine called Questran. He said no that I should continue to watch my diet. Not only had I tried eliminating different things over that year I also stopped eating and found no difference in the condition. I was almost suicidal except for the fact that I was a single mother of a wonderful eleven year old daughter who needed me.
After my request for the Questran was denied I went back to my general practitioner with my research and my tears. She listened and read my research. I left her office with the prescription. The medicine gave me some relief in that I was going less often but I was still having diarrhoea. The powder wasn't convenient since I'm a photojournalist and am in the car a lot. I was also throwing up the medicine.
I spent some time almost everyday searching the internet for any information I could find. Since I didn't have a doctor that could give me an answer I figured I would find one and bring it to the one doctor who would listen to me. That's when I found a pill called Colestipol (Colestid) that would bind the bile like Questran did. My doctor listened/researched and I once again left her office with a prescription. The condition would sometimes be worse than others. I asked if I could try Welchol and when she agreed I found this to work the best.
During this time I continued to research what was being found out with the FGF-
Since the BAM came on full force five or six years ago I have become overweight for the first time in my life. It's not severe but I do not do anything differently than I used to. It surprises me because I'm eating less and going to the bathroom more. I've found this to be a common complaint of other BAM sufferers.
The saddest part about this is that I had exploratory surgery for the pain that started this all and they found adhesions which were repaired and solved that pain problem. I probably never needed to have my gallbladder removed. I would give anything in the world to have it put back in since I think it was acting as a reservoir to hold my excess bile. The saddest part about this is that not only has it made my quality of life so poor at times but my teenage daughter has had to suffer along with me. It's not fair to have a disorder that people don't understand and is socially embarrassing to talk about.