Five. Five years of my, so far, 20-year life. That’s a quarter. A quarter of my life spent dealing with this. Four – that’s how many hospitals I’ve been to. Seventeen – that’s how many procedures I’ve had. Nine – the types of medication we’ve tried. One – the amount of operations. 2016 – well, that’s not a number, but a year. And it’s an important year, because it’s the year we put a plan into place and decided that this health mystery ends here.
“I’m sorry,” they said time and time again after another test came back inconclusive. In the first few months of an illness, moments like this can feel like nothing at all, but when you’ve been living with something for five years that no doctor can seem to figure out, the words “I’m sorry”, though comforting, really don’t make things any better.
It all started in 2011 when I first visited my GP with severe shooting pains in my lower stomach and numbness down the right side of my body. I was sent away with the advice of the usual remedy – rest and plenty of painkillers. But being in the middle of your GCSE exams is hardly the time for rest, so I had no other choice but to just keep going.
Over time, the pains worsened. At the age of 15, I collapsed in pain on a Monday morning at school and was admitted to hospital. The attack was so strong I couldn’t walk. I stayed in the hospital for a week, taking mock exams while I was there, and having tablet after tablet pushed into my hand.
At this point, I’d already had several blood tests and scans, all of which had come back completely normal. I was obviously thankful for this, but that didn’t solve the problem.
Months later, it was decided that I would undergo an operation – a combined laparoscopy and colonoscopy under general anesthetic. Basically, they were going to put two cameras into my body to see if they could find any abnormalities that weren’t showing up on the multiple CT, MRI and ultrasound scans.
But following my pre-operation assessment, I had the worst week of it all. I collapsed six times in just seven days – at this point, I was trying to get through my AS-Levels, and my poor mother could probably have made the car journey from my college to A&E blindfolded. I was ordered by senior staff to take a week off college as I was too unwell to be there, and there was even talk of me having to take a year out so my body could recover. But that was never an option for me.
When it finally came around to it, on November 26th 2012, the procedure was performed by a gastroenterologist and a gynaecologist. I’d had to take bowel prep solution all weekend which not only tastes horrendous, but makes your body feel weak and hollow. People would say to me ‘I bet it helps you lose weight, though’, as if dropping 6lbs in three days was something to be proud of.
Like everything else before it, the operation showed nothing new apart from a small amount of inflammation. Crohn’s Disease was suggested and later ruled out, just like everything else was – ovarian cysts, appendicitis, Endometriosis, you name it! But we weren’t going to give up, which meant a third camera – this time, it would be going down my throat.
I don’t know how many other young women can say they’ve seen their own insides on a computer screen, but the small bowel capsule endoscopy was my chance to say I’d done just that! On my 17th birthday, after three days on a liquid diet, I swallowed a HUGE tablet (and I mean huge!) that carried a microscopic camera. Again, nothing.
It was time to look down other avenues.
Appointments went by and so did my A-Levels – god knows how I managed to pass those! Then, in August 2013, I received a letter from a third hospital offering me some intolerance tests; Glucose, Fructose and Lactose.
I was skeptical at first as I hadn’t seemed to make a connection between my diet and my health despite having kept a food diary for several months. First, Glucose. Nothing. Second, Lactose. Nothing. I even remember telling my parents that I would refuse to go back for my third test as the solutions I had to drink made my stomach shrivel up they were that vile in taste. But it’s a good job I did go back; fructose intolerant? Yep!
When I got those results, I was a little miffed about all the wonderful things I’d have to cut out of my diet, but in the grand scheme of things I was elated! My health mystery had been solved and all the awful tests and procedures were over.
But they weren’t.
In September 2014 I moved to Lincoln for university. I’d been told several times that this will probably be something I’ll just grow out of one day, and I hoped that my new life away from home might make a difference. But despite the changes to my diet, the pains were the same as ever. In fact, they were worse.
My health was a constant struggle in my first year, and the summer that followed saw me collapse while out with my family – praise to my brother, a.k.a. my knight in shining armour, for carrying me into the ambulance. The pains were as all-consuming as they’d ever been, but they seemed to have spread to my lower back. I was taken to the hospital where I had more blood tests and scans, all targeted at a possible problem with my kidneys. Twelve hours later, I was discharged and sent home with no answers.
But this collapse meant I was back on the hospitals radar. It meant they knew it was still happening and I needed their help in beating it.
The doctors were puzzled – they didn’t quite know what to do with me next. As much of an inconvenience as it was to all involved, it was decided that the only thing we could do was re-do the tests I’d already had, starting with the Capsule Endoscopy.
I’d learnt by this point not to get my hopes up about finding answers; this 10-hour procedure in October 2016 showed nothing. But the same follow-up appointment where I was told this was the same one that I was given a possible conclusion to my story.
On Wednesday 23rd of November 2016 I was diagnosed with Functional Abdominal Pain Syndrome (FAPS). It’s a gastrointestinal disorder, which occurs because of altered sensitivity to nerve impulses in the gut and brain, meaning even normal abdominal activity can be experienced as immensely painful. Think of it as being like the volume being turned up on a stereo so loud that the speakers start to crackle.
FAPS can be controlled using antidepressant medication and various forms of psychotherapy. I’m now being referred to a therapist, with a view to start hypnosis treatment soon, and I will start my medication in a week.
I’m scared because words such as ‘psychotherapy’ aren’t what I expected to hear, and I’m sad because knowing that I’ve suffered through all of this just because my brain couldn’t read signals correctly is stressful. But I’m lucky. This could have been anything. This could have been so much worse, but it isn’t.
Although this diagnosis isn’t the clear-cut, simple answer I always thought I’d receive at the end of this long and winding journey, we now have a solution and a plan.
The last five years have been an emotional, draining, stressful, tiring and unforgettable journey not just for me, but for everyone who’s been a part of my life from then until now.
I cannot imagine the stress my parents faced as they saw their daughter screwed up in agony with no idea why, but all along they’ve taken me to every appointment and looked after me through every bad turn. My friends have all raised my spirits when it felt so easy for me to give in. My flatmates adopted the roles of parent/doctor when I moved to university. My teachers, at school, college and then university, all supported my education and helped me to do so well despite it all – I couldn’t have done it without them.
So, if you’re reading this and you know you played some form of part in this, big or small, long-term or short, friend, parent, teacher, doctor or whatever else, I just want to say thank you. Thank you for your patience and your kindness. Thank you with all my heart – and my stomach! Together, we did it.
Featured image: Jamie Dobson/ Flickr.