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.
During the last 18 years I have suffered from acute diarrhoea, stomach cramps and bloating. I decided that I didn’t want any embarrassing investigations, so I kept with the original diagnosis of IBS. My condition got so bad that I was dashing to the toilet up to 12 times per day and I’d never know when it would begin. Work became a nightmare with only 2 toilets to use side by side. I dreaded those awful cramps appearing, as I knew what came next. I worried constantly whether I would manage to get to the toilet in time.
My stomach ‘issues’ began in my late 20’s (1980’s) after a severe bad bout of sickness and diarrhoea whilst on my honeymoon in Turkey – not quite the honeymoon I had imagined! The doctor later diagnosed me with Irritable Bowel Syndrome (IBS) and informed me that there was not a lot they could do about this condition apart from eating a high fibre diet. At the age of 36, I had my gall bladder removed due to stones that were causing severe pain.
Fortunately, my GP was happy to regularly prescribe Loperamide (Imodium), no questions asked! Sometimes I was actually taking up to 10 Loperamide a day. While this may have been helpful in the short term, little did I know that taking such large doses of Loperamide (Imodium) would permanently damage my bowel. Last October, I started to pass some blood, which a very scary experience. I decided that I couldn’t ignore this any longer and went to see my new GP, who referred me to a wonderful gastroenterologist, Dr Jo Puleston. After taking a full medical history she immediately said “I’m pretty sure you have something called bile acid/ salt malabsorption due to the gallbladder removal”. I was amazed that I’d never realized that my condition did in fact become much worse after the operation. She booked me in for a colonoscopy and a gastroscopy…lucky me!
Following these procedures I was also diagnosed with Helicobacter pylori bacteria in my stomach and acute diverticular disease (DD), no doubt due to the huge amounts of loperamide I took which has damaged the bowel.
I had the SeHCAT scan 2 weeks later and was diagnosed with acute Bile Salt Malabsorption (BSM) with 4% retention. I was immediately prescribed Questran Lite which has changed my life! The powder isn’t pleasant to take but I now mix it with Ribena which makes it more palatable. My Gastroenterologist also suggested that if I found Questran hard to tolerate I could be placed on Colesevelam tablets. Unfortunately, my local NHS have refused to prescribe these as they are not licensed for use with BSM. I did trial the drug for 2 weeks at my own expense and they were just as effective and a lot more convenient to take-
I have recently also been diagnosed with Crohn’s disease. From what I have read, there are many cross-