In January 2019 I was sitting in front of a consultant, on my own, in Royal London hospital, being delivered the news that all of the tests and investigations I had undergone the previous year confirmed suspicions – I was to be diagnosed with Crohns Disease.
What followed wasn’t what you’d expect from being told, at 26 years old, that I had a chronic illness that I would have to battle for the rest of my life. The pain, the discomfort and the aggressive medication was all just a brush on the surface compared to what went on in my mind.
When I was first diagnosed I didn’t cry, I didn’t get angry and I didn’t wallow, I simply felt relief. For me, unfortunately, I had to endure a few years of quite painful and confusing investigations, operations and lots of frustrating medical jargon. I realised something wasn’t quite right back in 2014, but as we all do, I put it to the back of my mind and continued to plod on with day-to-day life. Fortunately, my body was having none of it and basically gave up. I was consequently hospitalised with a pretty nasty infection. Without going into too much detail, things were missed by the professionals and my struggle for diagnosis was a prolonged one. So, once I did get handed documents titled “Living with Crohns disease” all I could think was “FINALLY!”. I felt relieved that all of the pain and tears weren’t for nothing.
Put simply, Crohns is an inflammatory bowel disease, that, in my case, causes severe abdominal pain, bouts of diarrhoea and the prevention of absorbing certain vitamins. It can be debilitating, humiliating, excruciating and extremely misunderstood. Mostly it’s very, very alienating. Treatment and medication vary, but ultimately there is currently no cure for Crohns or Colitis. However, there are ways to control or reduce symptoms. One of those treatments is the drug that I’m currently on, called Azathioprine, which is an immunity suppressant. Of course, as with every serious medication, it comes with quite a few side effects. I’m more likely to get poorly quickly as my white blood cell count is reduced, I can become very tired quickly, I am at a higher risk of liver problems and general infections, and often it makes me feel a little weak. This differs from person to person and now that I have been through my rounds of trials to decipher my dosage, I know what is normal (or not) for me.
“It’s not necessarily the physical effects that beat you up and then pour salt on your wounds, it’s your own damn mind”
If you’re sat there thinking, “well that sounds brutal”, it absolutely is and no matter how many times I try to sugar coat it, the pain and physical exhaustion are really bloody awful. However, as with most people who deal with a chronic illness, it’s not necessarily the physical effects that beat you up and then pour salt on your wounds, it’s your own damn mind. With Crohns disease comes the obvious embarrassment and anxiety that’s associated with anything toilet-related. Having one glass of wine on a Friday night and then worrying that you won’t make it to the downstairs toilet in a bar before you shit yourself is enough to make your blood pressure rise and breath shorten – but for me, it’s the stuff that nobody tells you about after that *big old diagnosis chat* which really gets me down.
This year I have been grieving. It’s weird. I’m grieving for the person I thought I was, that didn’t have a big red sticker of diagnosis slapped across her, that wasn’t “sickly”, that didn’t have to take a handful of medication with her morning cup of coffee. Rather than talk about it, after my diagnosis I retreated and pretended that everything was fine, whilst in secret I was lying with a hot beanie over my abdomen, scooping my own faeces into test tubes, regularly having panic attacks ahead of blood tests and feeling a bizarre sense of grief for the girl who went in to see that consultant and walked out a different person.
“I’m grieving for the person that didn’t have a big red sticker of diagnosis slapped across her”
Of course, nothing really has changed, apart from the fact that I’m actually going to be able to prevent myself from experiencing such intense pain, my chances of having to get a colostomy bag have rapidly reduced, I understand how my body works SO much more and I am starting to accept and talk openly to people about it. But my mind still has a bit more work to do.
I must mention that I was very lucky that through-out my investigations, diagnosis and treatment exploration, I had a close friend who was living with Ulcerative Colitis (a sister disease to Crohns) and had been doing so for the majority of her life. This lifeline became a godsend in terms of making my debilitating illness and experiences feel a little more human and normal. She helped me understand that what I was experiencing wasn’t uncommon for people like us and that no question, complaint or breakdown was ridiculous. My friend also convinced me to go to speak to the LTC (lifetime condition) therapist, who could talk me through coping mechanisms and thought patterns in dealing with flare-ups, remission, medication adjustments and day to day living.
Slowly, and tentatively, my mind is catching up with my body’s diagnosis, but I do have to work a little harder to give myself a break and reassure myself that I don’t need to feel guilt, grief or loneliness. When I have a bad day, it can creep up on me really slowly, like a thick grey fog rolling in over my brain, making me want to retreat, sleep and not speak to anybody. I put on a brave, smiley face so as to not let anybody know that I’m struggling, and then go to bed at 8pm, because it stops my body and mind from being in pain. Other times, it hits me hard and I cry, get cross, frustrated and snap at the people who love me the most – which is the bit that I really hate. Luckily, I’m surrounded by people that love me, care and understand.
On my good days (more often than not!) I proudly explain that not all disabilities are visible to anybody who will listen, and I am working on not feeling so ashamed that my body doesn’t make things easy for me sometimes.
My chronic illness is both mind and body but I’m understanding it more and more, every day.
If you would like to find out more about Crohns and Colitis you can have a look here.
If you do need to talk to somebody, you can do so here.
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Hi KT, so sad about your choihnes disease i have chroenes disease too. Like bart simpson said ‘it sucks and blows at the same time and i thuoght that was physiclly impossible!” Hope your poop flows well, just like your words flow well onto the page. I hope you couragous words inspire more chroens diseasers like me to let people know how hard poop can be. It separated my entier family because people were so intolerant of toilet time – why can’t they undersrand we need just a little bit more toilet time! It’s not a dirty word. Poop poop poo poop. There i said it! Thnk you KY, wellsaid, you are an isipidation to all of us with Crhoens Disease.