Hello! Usually I’d encourage you to read whatever I write but this post warrants a content warning. I’ve tried to be as light and funny as possible but if you’re not in the right place to read about medical stuff, take a pass. I won’t mind. Promise.
But if you’re keen to read about my Crohn’s disease journey, see where I’m at now, and decipher some of my more cryptic Instagram Stories, this is for you. So, let’s recap.
The diagnosis
I was diagnosed on 29 November 2019. After waking up from a colonoscopy (I maintain all medical procedures are much better when you’re unconscious and don’t need to bother wiping them from your memory), I sipped hot chocolate and wolfed down a panini. All things considered, it wasn’t too shabby. Then the doctor came in. “Well, I can immediately tell you have Crohn’s,” she’d said.
Elizabeth doesn’t mince her words.
A strange cocktail of emotions ensued. There was disappointment, worry and fear: I knew having a lifelong chronic illness wasn’t good. I knew about the risks and complications of the disease, and my future suddenly looked a bit fuzzy round the edges. There was a fleeting hint of smugness, because I’d said I might have Crohn’s disease and my dad said I didn’t, and unfortunately I love being right. And, finally, a sliver of relief: I had a diagnosis. Maybe, with the right medication, I’d feel much better. And Crohn’s wouldn’t affect my life too dramatically.
Naive. What I should probably add here is this: my symptoms weren’t typically ‘Crohns-y’. When someone develops inflammatory bowel disease (sexy, I know), their suspicions are probably first piqued when they go to the bathroom a lot. But that wasn’t me. My main symptom was a weird churning sensation in my guts that felt like a cement mixer. Every day, it was as though I was on the verge of food poisoning, which basically made my life absolute hell and gave me awful anxiety. But other than that, I was fine. Oh except this weird butt thing. Basically …
That was quite annoying, actually, having a literal pain in the arse. It had been getting worse and it was really uncomfortable to sit down. But, good news, I’d just had my colonoscopy and they hadn’t mentioned anything about my butt being about to fall off, so I was probably fine and it was maybe just a quirky Crohn’s disease thing that’d go away.
It hurts to be wrong
So, I was sent home from my colonscopy with some leaflets. ‘You and Crohn’s disease’. They did not make for good reading – they might as well have read: ‘You probably will end up having major surgery but good luck anyway bestie xox’
I was not inspired. I was not relieved. I felt a bit depressed about it, to be honest.
And annoyingly, over the next week, my butt pain got worse. In fact, I only slept for an hour a night. Which meant I looked like this:
Which wasn’t ideal, because I usually prefer to look more attractive than an ailing Les Mis extra.
Luckily, I had a post-diagnosis catch up with the doctor. ‘Hello, everything hurts and I am not sleeping,’ I said. After a quick check-up, I was given painkillers and sleeping pills. Like a rockstar in the 70s. Neither drug did anything to help. But when they ran out after a week, I went back to the GP to get some more, just in case they might start working at some point.
He looked at me as though I was very tedious. Which, in fairness, I am. But he didn’t know that yet.
‘You can’t have any more sleeping pills,’ he said. He offered to give my troublesome arse a once-over. Its worst reaction my bum has ever received, because he immediately phoned the hospital.
Abscess
Unfortunately I had an abscess and had to go to hospital immediately to have it lanced. Which unfortunately has nothing to do with jousting. I was put to sleep while they worked on me, so I knew it was serious.
Right, if you’re squeamish, skip the next bit. I’ll add a ‘you’re safe now’ GIF to tell you when to come back.
It left me with a 4cm-deep hole in my arse, approximately the diameter of a 20p coin. Well, I can’t actually remember what coin they compared it to, but I figure 20p is a fair average.
Obviously you can’t just walk around with a big ole wound in your butt. So the nurses stuffed it with a long ribbon-like dressing and stuck a big plaster over the top. Every day. For 6 weeks. Which meant on Christmas Day, a nurse came to my house, did my dressing, and promptly put herself off Christmas dinner. God bless her.
This period of my life was a fairly rubbish experience. Going to a doctor’s surgery every Monday to Saturday, and then the hospital on Sunday, to sit in a waiting room and then have a painful dressing removed and reapplied, takes over your whole life. It’s practically a full-time job.
But on a more uplifting note, I realised I was very tough, brave and strong, which I hadn’t known before.
Then, come February, the hospital rang to say a recent MRI showed I had fistula. This is a tunnel which appears between two organs, or an organ and your skin. In my case, it was from my bowel to my butt cheek. FML.
The treatment? A seton suture, which is a rubber band-looking device that goes through the fistula. It doesn’t fix the fistula, but it stops it from closing over and getting infected/causing more damage. I’m sure you have questions. But none of them will top my friend Harrison asking: “And if you pulled it, would it ping?” The answer is no, if you’re wondering.
Oh and a week after I got my first seton, it broke and I had to get a new one put in. So I needed ANOTHER surgery. It was a pain in the arse on every level imaginable.
OK, we’ll let the squeamish people back in.
Life with my rubber band
So I’ve been with my rubber band since March 2020. I’ve had a few health scares since, but nothing major. No more surgeries, thank goodness.
The rubber band (which isn’t actually made of rubber) might have saved me from getting really poorly. So, in a sense, I am grateful for it. But it’s not easy to live with. Sometimes it’s really sore. It can restrict my mobility a bit. And aesthetically, it’s not my favourite feature. I always know it’s there, and it serves as a constant reminder of my illness.
In November 2021, we found out my fistula had branched – another ‘arm’ of the tunnel. That’s a problem that needed sorting. I was told the surgeon would be in contact soon. But then I sort of dropped off the radar. I think this is partly down to the impact of the pandemic and largely due to the NHS being crumbled beneath the fleshy fist of our careless, cruel and inept government.
So, what happens next? I wish I knew! Although I’ve been assured I won’t have this band ‘forever’, I don’t know how long it’ll be with me. Well, through me.
So, we need to sort out this fistula, especially the new branch which has been minding its business, without medical intervention, for 14 months now. The options floated to me back in 2021 were a) another seton suture for the new branch. ANOTHER ONE!? TWO RUBBER BANDS IN MY BUM? No thank you. Or, b) going on Infliximab, which is a fancy drug that suppresses inflammation in your body. You take it via a drip, at the hospital. The treatment would take over a year, I think. So that’s not ideal, it’s fairly disruptive and I don’t imagine it’s a hugely pleasant experience. But it might help close my fistulas, which would be bloody lovely, wouldn’t it?
I have a meeting with a specialist next weekend. I’ve been waiting over a year for this. I would absolutely love an option that isn’t too painful, won’t take up a year of my life, and – most importantly – works. Although I can barely imagine what a normal arse would be like, I hope I get to experience it some day soon. Cross your fingers for me.
The finale: Medical maths
And because I had nothing better to do, I kept a tally of my medical misfortune. I counted:
- One colonoscopy
- Five MRIs
- Three small surgeries
- Two abscesses
- Two seton sutures
- Four rounds of general anaesthetic
- Half a round of steroids
- Three rectal exams
- Nine cannulas
- Fifty dressings
- Around thirty/forty blood tests (OK I lost count)
- And a paaaaaartirdge in a pear treeeeeee
Back in November 2019, I had a phobia of needles, doctors, hospitals… basically everything medical. So this list is a reminder of how much fear I’ve overcome. That’s pretty cool, in a slightly trauma-tinged way, right?
If you’ve made it this far, thank you for sticking with me. My parting advice? A warped sense of humour will see you through almost everything. Look for the funny side, and you’ll find it.
