My Fun And Games With Bile Salt Malabsorption and Permanent Diarrhoea

This is about my fun and games with Bile Salt Malabsorption and Permanent Diarrhoea. I had my bowel resection on the 16th of January 2012. I was slightly alarmed with the watery stools, pain and 4 stone weight loss within six months of having the resection done. My consultant at the time was telling me that I was imagining the symptoms and that it would all calm down. Suffice to say my mental health took a dip at the time as I was spending a lot of time on the toilet.

What is Bile Salt Malabsorption?

The main symptom of bile salt malabsorption is diarrhoea. When bile acids are not absorbed from the ileum, they are passed into the large intestine. Here, the excess bile acids irritate the lining of the large intestine and stimulate salt and water secretion, causing diarrhoea. Diarrhoea may be pale, greasy and hard to flush away. People can have up to ten episodes of diarrhoea during the day, and sometimes at night. Other symptoms include bloating, cramping abdominal pain and excessive wind.

How did I end up with bile salt malabsorption?

Ok, so here’s the tricky and technical part. bile salt malabsorption how did I get this?  I’ve researched this after I was diagnosed back in December of 2015. There are 3 causes behind this condition

  1. This is when part of the small intestine (ileum), where bile acids are absorbed, has been affected. Causes include removal or inflammation of the ileum. Reasons for removal of the ileum include surgery due to conditions such as Crohn’s disease (a condition which affects the whole digestive tract and causes inflammation) or cancer treatment.
  2. This is when no definitive cause is found and is known as primary bile acid malabsorption.
  3. This can result from other diseases or conditions within the abdomen such as gallbladder removal, coeliac disease, chronic pancreatitis, radiotherapy or small bowel bacteria overgrowth.

I have type 1. I had more than half of my large bowel removed and about two-thirds of my small bowel back in 2009 and at the time my Gastro team should have been aware of this and my resection should have never taken place due to the issues this causes me.

What were my symptoms prior to diagnosis?

My symptoms prior to diagnosis are as follows

  • Constant watery bowel movements which caused a lot of burning around the bottom, I used to sing the ring of fire when I exited the toilet. You may be sat here reading this thinking my word but my way of dealing with things is to laugh and make a joke of it just after I’ve been balling my eyes out passing a bowel movement
  • Severe wind and bloating. I used to look like I was permanently pregnant and I was embarrassed and refused to use public toilets or bathrooms at people’s houses due to the noise and the smell. I believe my now ex-partner came up with the term I sounded like a B-52 bomber every time I disappeared to the toilet. My Current partner  used to stick music on so I couldn’t be heard from the bathroom to spare my blushes and mortification which is the other side of my bedroom wall
  • A constant thirst. No matter how much I drink I have no way of controlling the thirst when it starts. This is because the body flushes out all fluids
  • A severe craving for salt & sugar. Yes, I’m ashamed to admit I pour salt onto my hand and lick it off or hide in the kitchen and eat teaspoons of sugar from the packet. But my IBD team and Dietician have assured me this is perfectly normal because my body likes to flush it out
  • Water retention- Yes pure madness, as well as my body flushes out the fluids. My body tries its best to retain any fluid possible which then means I have to take fluid retention tablets to flush that out as well as no one likes swollen feet and ankles

How do they test for this?

They test you using a thing called a  SeHCAT test. A small capsule containing an artificial bile acid called SeHCAT (75Se-homocholic acid taurine) is swallowed. A scan is performed an hour or so after you’ve swallowed the pill. Then you have to go back a week later to test the levels of radiation left in the body. Suffice to say mine was pretty non-existent after a week of constant toilet trips. But I finally had a diagnosis.

What medications are used to treat this?

  • Colestyramine and colestipol – these medications only come in powder form. Unfortunately, they do not taste nice and are not tolerated by some patients. If the dose is too high, it can cause constipation, so it is important to adjust the dose according to symptoms
  • Colesevelam – this is a newer medication and comes in a tablet form. Some patients find it more palatable than cholestyramine.

I have to say the Colesevelam is the easiest out of these medications to tolerate even if they are the size of horse pills. In my personal opinion, the powders are absolutely foul and thicken up once they come in contact with water and its like drinking vomit.

 

How does this affect me?

This affects me a great deal. I used to panic about leaving the house and have soiled myself on more than one occasion and having it marked down on your medical records that I’m a female of a young age who’s faecal incontinent knocks your confidence and your pride. I used to take spare knickers and jeans with me in a bag just in case. I can proudly tell you I know where all the toilets are in a 20-mile radius.

I was so happy to have my permanent ileostomy formed in November of 2016 as it meant I would no longer be rushing to the toilet as I couldn’t hold it in.

My permanent stoma supplies

My Permanent stoma supplies

After my surgery, I was relatively free of the symptoms. However now all my bowels have settled down and I’ve had a 5 month sabbatical from this. It has decided to rear its ugly head and the last 3 weeks for stoma output has been ridiculous, I’ve been emptying my stoma bag up to 14 times a day. Luckily I’ve not had a leak during the day. I came clean with my IBD team and I’m now as of the Monday just gone having to keep a food and fluid diary for the next month along with taking the medication daily in the hopes it stops and at least thickens my output. I’ve got to measure the fluid in and the fluid out. I’m allowed 1.5 litres in and can’t go near normal water unless its ice cubes. I also have to check the ingredient’s on any fluids or food and make sure it doesn’t have the dreaded sorbitol in it.The max out should only be 2.5 litres or less. So I’m going to be heaving and must remember to not leave it anywhere near the hair washing jug we use if we are having a bath.

My bloods are being monitored and I now have to go in for a magnesium and potassium infusion along with an Iron infusion on the 7th of June. I’m hoping the medication works or I will be put on the Modulen diet for an extended period until my bowels calm down.

I’m hoping this has been informative and helpful

Any comments please put in the box below

 

 

6 Comments
  1. My mom and brother both take Colestepol (sp?) for Irritable bowel syndrome, and it’s in pill form.

    • Hi Lisa,
      There’s a possibility this may have changed but I’ve always been prescribed the powder to mix and drink or the colesevelam tablets to take for this, it may be different for IBS. For Crohns patients that have had their terminal ileum removed its a different process to stop the constant bowel movements. Hoping the Colestipol helps your mum and brother as it’s only ever slowed down my movements and not stopped them completely.
      Thanks
      Louise

  2. Hi Louise

    That’s not fun at all.

    I had my 2nd vedolizumab infusion today. Unfortunately I’ve came off prednisolone the week of my first infusion, so my CRP’s are raised and my calprotectin is sky high at the moment. Not looking good for me… I learned of crohn’s perianal skin tags in the last 2 weeks. They’re fun, NOT!

    My legs and wrist are sore – exactly what I had after the first infusion. Then I had headaches every day since my first infusion. Nothing serious though.

    Cheers

    Elaine

    • Hi Elaine,
      No, it’s not fun lol.
      Have they made you aware that the infusion can cause you diarrhoea? Fingers crossed the calprotectin and CRP levels drop.
      I’ve been advised by someone else that drinking plenty of fluids 48 hrs prior to the infusion and after can reduce the effects it has on you. The headaches do pass. I have them for a few days after too. Its sometimes easier to sleep it off. Im off to Guys today to see the dermatologist about the issues ive been having with my skin. I have patches on the backs of my arms, shoulders and spreading up my back which are really itchy and rough to touch
      Hoping you are well
      Louise xx

  3. Hi Louise

    Just wondering, have you ever had perianal skin tags removed? I’ve just been told by GI Nurse I can be referred to the surgical team if I want t have mine removed, but that scares me slightly.

    Is it better to just put up with them or am I better to have them removed?

    Cheers

    Elaine

    • Hi Elaine

      If they are uncomfortable then have them removed. I myself haven’t experienced these skin tags. My friend has some removed about six months ago and she said it was ok and that you have to keep the area dry and clean until it’s healed which doesn’t take very long. They treat it as a day procedure.
      Hoping you are well and the Vedolizumab is starting to work for you.
      Louise xxx

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