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 started to adopt a more restrictive diet because of candida and various food sensitivities, particularly to gluten, cow's dairy, yeast and sugar. In 2006 I had my gallbladder out because of disease (adenomyamatosis....sp?), some months after having had a stone stuck in a bile duct. Nothing changed in an immediate, dramatic way after the operation, but looking back, I realise that I gradually had more 'urgency' and unpredictability in my toilet habits.
I have been ill for many years, with multiple serious symptoms, but it was not until 2007 that I had the diagnosis of Lyme disease, the complex illness that is normally acquired through being bitten by an infected tick. At that point, I did try several courses of different antibiotics, but did not improve on them, probably because it was too late in the day.
In the past fifteen years of the illness, I have had quite a few 'gut' symptoms: bloating, especially upper abdominal bloating, that could come on very suddenly, soreness sometimes along the digestive tract, whether in the stomach, oesophagus, the tongue or all three.
Early in 2012, I got violent food poisoning in Fuerteventura in the Canary Islands and when I returned home, after a hideous day of travelling, the diarrhoea eased off to a degree, but left me with bad nausea, increased urgency, bouts of loose stools, unpredictability, sense of incomplete evacuation, increased anxiety, very unsettled bubbling feelings in my upper abdomen, gurgling, growling noises quite unlike my previous gut noises! I have been housebound for much of the long illness with Lyme disease, but of course, these symptoms on top made matters much worse, restricted social opportunities still further and also meant that appointments such as with a doctor, even things like going to the hairdresser, became fraught with anxiety. I even had to stop travelling to a top London chiropractor to get treatment for my coccyx and sacrum area that had started to make sitting down intensely uncomfortable because the IBS-
Over time since then, upper abdominal bloating has got even worse, making it very difficult for me to wear a bra, for example: I manage it by buying a bra with a bigger back size than my own, then extending it even further by attaching the three inch strips of bra strap fabric with hooks and eyes , known as bra extenders....usually two of these, so am creating about an extra eight inches to try to avoid putting too much pressure on my very sore central area below the breasts (probably the lower oesophageal sphincter).
In May 2014, I had a sudden worsening of diarrhoea and terrific bile reflux, with the acute phase lasting several days and leaving me with intense nausea, extra weakness and fatigue, no appetite, intensely sore lining from oesophagus to stomach. When the bile refluxing is at its worst, it also seems to physically cause hot waves of panicky fear, probably because the bile is irritating the nerve endings, making them hypersensitive. My GP prescribed Omeprazole short-
It is too early to judge how I will get on with Cholestagel, since I am sensitive to many medicines and have to build up very slowly, so have only just got to one whole tablet per day after 8 days! Ironically, this drug is sometimes used too in Lyme disease to help take neurotoxins and mould out of the body, but some people with Lyme cannot tolerate it, so I hope I am not one of them!
I am looking forward to the possible future drugs that are being researched as I write to try to help control excess bile problems, perhaps by stimulating production of the ileal hormone FGF19 that has an important feedback role in communicating to the liver when to stop making bile!
I was delighted to find a Facebook group for Bile Salt Malabsorption and people there seem to be very friendly and supportive. I hope this account is not too long, and that some of the detail may ring a bell with other people who are trying to find out what is wrong with them.