This month’s blog is about my needless ten-year struggle dealing with chronic diarrhoea and how I tracked down a simple medication that stopped my relentless, unnecessary trips to the toilet.
Before I begin, I need to put the follow in context, it was the late nighties, the Internet had just begun to permeate our lives and I had started to use it as a research tool as well as connecting with other IBD sufferers
I’ve had 2 resections in my 29-year battle with Crohns disease, for this post I’ll focus on the second, a resection of the small bowel, removing the terminal ilium or in non-technical terms, the bit where your small bowel meets the large bowel.
Although the operation was considered a success in terms of removing the diseased section of my bowel with no complications, I was now faced with a massive increase in toilet activities to over 10 a day with no formed stools.
In my follow up appointments with many different consultants over the course of the next ten years, the answer was disappointing the same…” sorry there is nothing more we can do about your chronic Diarrhoea’ to add to this, I was also told not to take Imodium (loperamide hydrochlorideas) it could cause blockages due to the resection site.
So, there I was, 2 bowel resections later, the toilet activates taking over my life with no hope for the future, as you all know this disease has the overwhelming effect of feeling complete hopeless. So, when I got a message from a fellow IBDer entitled “a possible answer to your chronic Diarrhoea’
I was intrigued to say the least.
It was the first time I’d heard of the condition called, BAM (Bile acid malabsorption), which is extremely common when you have the terminal ileum removed as part of a resection. Based on my research and armed with a folder full of research, I made an appointment with a private consultant to discuss BAM and my toilet activates.
If I’m being honest, I was upset after leaving the consultation, for a couple of reasons firstly, the consultant straight away suggested my increased toilet activity may be due to BAM, He was concerned that I’d never been recommend the medication for it. He suggested I have a SeHCAT scan, which is now the recommended diagnostic for BAM. He wrote up a prescription for a medication called colestyramine which is a powdered medication taken in the mornings.
The second reason I was upset was that the consult told me I had been needlessly suffering with this condition for 10 years! Ten years! I know it's pointless looking back, certainly it's pointless looking back at your life with this disease, all the family gatherings, events, meeting up with friends cancelled due to feeling terrible or in my case not being able to leave the house due to BAM.
Within a couple of day of taking one 4g sachet of colestyramine my toilet activities had reduced from 10 times a day to one a day!!! I couldn’t believe it and 10 years later I’m still on the medication, with zero side effects. I can leave the house freely without knowing where every toilet along the route will be. It's been a total liberation for me, I do and try and spread the word when I see posts about not wanting or not being able to leave to house due to diarrhea, of course this blog needs to be caveated with the fact not all increased toilet activity is due to BAM but if you’re in the situation I found myself in, make an appointment with your consultant to discuss BAM.
Here’s a few useful links to BAM
https://www.bad-uk.org/life-with-bile-acid-diarrhoea
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