Unraveling My Journey: Battling Digestive Health Problems

This is the story of how I was diagnosed with Bile Acid Malabsorption

Where to start is a difficult one. It feels like I've struggled with digestive health problems forever, but if I think about it hard enough, in my teens I remember nights of sitting on the toilet with my quilt wrapped around me to keep me warm. I would be up all through the night with diarrhoea and then just as quickly as that had come on I would then not go to the toilet at all for almost a week. I would swing from constipation to diarrhoea with no explanation. When I was about 19 I was diagnosed with IBS because that is what the symptoms seemed to cover.

In my early twenties I started to suffer more an more with pains in my stomach and back. The pains would be so bad they would travel down my legs. It took until I was about 27 for any doctor to actually take me seriously enough to have more test done. Due to inflamation markers in a stool sample I was sent for a colonoscopy and was told by the surgeon that they couldn't find anything in my colon. He did say that there seemed to be an area of inflammation just beyond my terminal ilium, but he hadn't been able to go that far. I wish I had been more confident then to questions this further as it was just left at that. at the age of 29 I was sent for a laparoscopy to check to see if the pains could be linked to endometriosis. It turns out I did have endo, however I was never told about it. I didn't actually find out until earlier this year (2024 at age 42) when I saw it on my medical record thanks to the NHS app.

Even after all the above tests and multiple medications not working for me, I was told it is just IBS and that I would just have to learn to control it as best I could.

Strangely, when I fell pregnant in 2013 my symptoms seemed to get a lot better. Then after my son arrived, I suppose I did what all mothers do and just put anything that might be wrong with me to the side. In 2015 after having some pains in my stomach, an ultrasound scan found some polyps in my gallbladder and rather than biopsy them, my doctor made the decision to just remove the gallbladder and check them once it was out. Thankfully, they were just small growths and nothing serious. It was fairly soon after my gallbladder removal that I noticed that my diarrhoea had was getting a lot worse. It was the same as before only now more regular. Yellow, bile like stools (sorry TMI). When I spoke to my doctor about this, I was reassured that it was completely normal following gallbladder removal to suffer from diarrhoea, especially if you each fatty foods etc.

We should always question

How I wish I'd questioned this more! How I wish today me could have shouted in my ear and said "It is not normal to worry about how close you are to a toilet before you eat something. It is not normal to have stomach pains almost every day. It is not normal to feel this lonely all the time because you feel like you are not coping with something that everyone without a gallbladder copes with."

January 2024 was the turning point when I had had enough. I couldn't trust how my tummy would be, whether I'd be feeling fine or have pains. Whether I'd have diarrhoea or be constipated. Not only that, my symptoms were getting worse and had been for years.

My doctor referred me to the gastroenterologist at the Royal Victoria Infirmary (RVI) here in Newcastle. The waiting list to see the specialist was huge, however, I was fortunate that the Gastro had looked at my notes and as I'd had my gallbladder removed he scheduled a SeHCAT scan. I will do a separate blog post about the scan and what to expect. Until I was sent for this scan I had never heard of Bile Acid Malabsorption (BAM).

I found out that I had severe Bile Acid Malabsorption when it was listed on my NHS app under "Current Conditions". The Gastroenterologist sent a letter to my GP and explained that I would not be able to see him until August because of the waiting list and could my GP start me on Colestyramine sachets straight away.

That's how I was diagnosed. I won't get into the medication side of it now as I think this is a bigger story and an ongoing journey for me.

I did start a Tik Tok page to share my journey before my diagnosis and the amount of people who I have made connections with through that page with similar stories of long drawn out illnesses and misdiagnosis is astounding. I really hope that through the Tik Tok and this site we are able to spread the word and help others get diagnosed more quickly.

You can hear me talk about my journey on this Tik Tok post.