How can Bile Acid Malabsorption effect us with an Ileostomy Stoma? What damage can it be doing and how is it diagnosed and easily treated?
When I had an internal JPouch following the complete removal of my large bowel (Colon) I was diagnosed as suffering BAM (Bile Acid Malabsorption). This is confusing as most of the bile acids our bodies produce are recycled in the Ileum and I still have a small part of that, however the rest is managed in the colon… I have none!
The result for me with a JPouch was explosive, watery, gassy, urgent, acidic output that often caused incontinence and pain.
I am now living with a permanent Ileostomy Stoma after the failure and removal of my JPouch and complete Proctectomy. I thought I would no longer suffer the effects but I was wrong! Now I have even less ileum as much has been used for forming both the stomas and JPouch so I now live on medication to manage it.
With an Ileostomy Stoma the symptoms are different, obviously I have no control over the output so I don’t suffer the same cramps, urgency and incontinence etc, however now, if untreated, my bag takes the full brunt of it with gassy, watery and often explosive output, the acidic stool burns my skin and can interfere with the adhesive base of the bag. The watery output is often yellow stained with bile and constant so needs emptying frequently throughout the day, up to 15 times if I am really unlucky and a few in the night! I only know this as I ran out of my medication for the first time this Christmas and in just 4 days of no medication, I was set right back and my skin is in teathers!
The science bit! (Ref: www.uhcw.nhs.uk) what are bile salts/acids and how do they normally work...
‘Bile salts are made in your liver. When you eat a meal, especially if it has fat in it, these bile salts are released from your liver and gall bladder (if you still have one) into your upper intestine (duodenum). They help to digest the food as it travels through your small bowel. When the bile salts reach the far end of your small bowel, they are mostly absorbed back into your body and travel back in the blood stream to your liver. They are stored here until they are needed for the next meal.
There is one specific area of the small bowel which is responsible for absorbing these bile salts. If this area becomes diseased or has been removed at surgery or damaged, for example by radiotherapy, it may not be possible for enough of the bile salts to be absorbed back into your body. If, as a result of failed absorption, too much bile salt reaches your lower intestine (colon), bile salt will cause fluid to be pumped into your colon by your body, which will cause diarrhoea (loose or watery stools).’
‘Vitamin B12 is another vital nutrient which is absorbed into the body at the end of the small bowel. If this area of the bowel is not working properly, people with bile salt malabsorption may also become short of vitamin B12. This can make them feel tired and short of breath.’
How can it be diagnosed?
BAM diagnosis is mainly done with a SeHCAT scan, This identifies how the body is managing bile acid. My experience was that I swallowed a slightly radioactive capsule that contained bile acids, after an hour I had some isotope scans done and then carried on my daily routine as normal. I returned a week later for more scans where the level of bile salts in the capsule were remeasured. The % remaining identified that I was not maintaining the required levels and so BAM was diagnosed. My consultant prescribed a medication to help called Colestyramine in sachet form or Colesevelam Tablets which is a bile acid sequestrant, This works by removing unwanted excess bile acids from the body, binding it into your stools rather than it staying in your bowels.
Initially I was prescribed Colestyramine sachets as they are easier to absorb, however the consistency was awful, gel like with gloopy lumps in it and gritty to swallow, it made me have a gag reflex. After 5 days I gave in and requested a tablet equivalent from my GP. I started on 2 a day and quickly increased to 4 a day. This is now my maintenance treatment for life.
The early results were very promising and immediately my frequency reduced dramatically, the output was noticeably less irritating. I was able to sleep through the night more often, however, now with my permanent stoma I am up once a night every night as my output is high. It has also helped reduce my nausea in general which is an added bonus!
Many consultants are reluctant to consider testing for people with no colon for BAM as they believe the remaining ileum is enough to manage levels, however this was proven not to be the case in me and without it I dread to think how I would be now!
I have had issues with my stoma and surrounding skin that is still being investigated and possibly allergy or disease related, but after being without my Colesevelam for 4 days over Christmas, I can absolutely see how much worse off I could be un diagnosed.
These pictures are just 2 days damage from not managing bile acids.
I really hope by reading this I have offered you another option if suffering the hell of acidic, gassy, explosive output. It is a non invasive test that really can be the difference between a good and awful quality of life when living with no colon.
Thank you for reading and please remember I am a patient, not medically trained. The post is based on my personal experience and the research I share is referenced as gratefully provided by the NHS online. Always seek medical advice before trying anything I mention.
Take care and please leave a comment if you wish.
Aka Stoma Warrior ❤️