These were the words uttered to me by my GP the week after I was diagnosed with Lymphocytic Colitis back in 2010. This was after two months of begging for help and them struggling to understand how I was unwell. All the tests were coming back normal and the only symptoms I had were, to be blunt, chronic watery diarrhoea after every single item of food I ate.
Lymphocytic Colitis, often referred to as Microscopic Colitis is a lesser-known form of Inflammatory Bowel Disease (IBD), and has its main symptoms described as being “ongoing watery diarrhoea” that can “begin suddenly or gradually.” The cause isn’t fully understood but can be caused by a variety of medications, including SSRI’s (which is what triggered mine). The average age of onset and diagnosis is between 50-60. And although it can happen in those younger (now stated as being 1 in 4 under 25 being diagnosed) it was less common in 2010 because it is often misdiagnosed as being IBS.
My diagnosis left me feeling alone and scared. I was 22, well under the expected age of diagnosis. I received no medical support after the hospital discharged me within weeks of diagnosis as there was little that could be done to treat it and my symptoms stopped once I came off the medication that it turned out has caused it. But also, a GP that had no idea that this condition existed.
For a few months, I struggled by myself to learn to understand just how ill I had been, how I could be in remission and also have a rare disease that could come back a few years down the line? Would it come back? No one had answers. I had no idea of what would happen. Only that I had a diagnosis and it didn’t seem to be one that people knew much about – even in the IBD specialist community.
So, I did what I do best. I shut that part of my brain down and tried to ignore it. Time to live my life and accept that there was no medical support. If the medical world couldn’t help me, I would just ignore it all and get on with my life.
Which, in hindsight, isn’t that sensible. Sure, I got on with life. I avoided medications and foods that I read could trigger it, but I left it at that. I didn’t look into ways to help support my health in a way that would be effective. If anything, I acted as if I was invincible. No symptoms= no illness, right?
In some respects, I was not really living with the condition. I was hiding from it. It reared its head occasionally, I’d have the odd week where I had to spend it around the toilet because I had accidentally taken an OTC medication that I was explicitly told would cause the symptoms. I’d just stop, regroup and carry on. But as I got older, I started to notice that some of these incidents weren’t caused by anything that made sense. I hadn’t done anything that was an obvious trigger for the Lymphocytic Colitis so why was it acting up? In fact, was it acting up? But when I went to the GP, I always knew more about it than them. There was always a hesitancy to do anything about it because they understood it less.
I hate to be cliché, but in summer 2021, I had my first ever flare since diagnosis and it was not caused by medication this time – the cause/treatment is still a case of trial and error. The best thing I have learnt about how to deal with Lymphocytic Colitis is to take each day as it comes. Accept that this is a condition that will come and go no matter how much I want it to. That there is no cure and probably won’t be in my lifetime, but there are things I can do to support myself on the days I can’t be far from a toilet. I also appreciate the good days, even though I know that the bad days are behind me.
The only odd thing is that it took until I went into this flare to understand all of the above and to learn how to apply it to myself. Or maybe I just grew up and realised that I needed to learn to love my body, faults and all.
And while my GP’s may still know less than me about it, at least I know that I am not alone in this, and I can access support if I need it. Indeed, I am now on medication and on the waiting list for investigations to ensure that the treatment is the correct way forward.
A rare disease is hard, and although you may not know anyone who has what you have, know you are not alone with those feelings.
Words by: Katy Colbert
Edited by: Ella Dayer