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.
Site design by LJKuk
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.
I would have small IBS attacks as an adult, usually bad wind and pain but one night at 3.30am I ended up on the toilet with severe diarrhoea, sweating, going hot and cold, shaking and the pain I can only compare to labour contractions (and I had a good comparison as i had only given birth 8 weeks prior). I remember thinking 'if I don’t lie down now im going to faint', I ended up collapsing on the floor which my husband heard so came to find me.
The next day I went to my GP to say I either needed better IBS
I had stomach pains constantly as a child and was diagnosed with stomach migraines which my mother was happy with as we knew it was more than that.
I realised dairy made it worse as a teen so I cut out all dairy and fatty food and ate extremely healthily and went down to a size 6. At age 16 during an argument in an abusive relationship I had agonising stabbing pains in my stomach. The next day I was diagnosed with IBS and prescribed Mebeverine (an antispasmodic) which i still take now (age 26).
medication or I needed tests to find out if it was IBS. I started thinking I had Crohn’s disease but my GP thought it was food poisoning so wanted a stool sample. That came back negative. I had a blood test for celiac but again negative. 2 months had passed and I had lost 3 stone. I was referred to a gastro who said it didn't sound like Crohn's to him so wanted to do a colonoscopy in 2 weeks time. The only worry I had was the 'clean out' the night before. Its not pleasant but only takes a few hours. The colonoscopy was a breeze, I was lightly sedated so I knew what was going on but couldn't feel a thing. The gastro diagnosed bile salt malabsorption (BSM) as there was bile in my colon (bile is yellow which is a laxative and causes yellow watery diarrhoea). I was given a letter to take to my GP the next day for Questran powder sachets to drink. It was withdrawn so only Questran lite is available now and contains aspartame. The aspartame gave me bloating, pain and nausea so seemed almost pointless but slowed down the bowel movements. I went for a 2 week check up with my gastro and asked for the Colesevelam tablet which I still take now but I have to take the full dose (6 per day) but my flare ups are happening more and more often again. I'm not sure if this is due to being pregnant (BSM is linked to hormones) or if i need an even higher dose. Diarrhoea may not sound bad to some people but I have never felt so ill in all my life and hope they find more treatment in the future.
I found a lot of support and friendship in the Facebook group and I am very thankful for my extended dysfunctional family :-