Introduction
Some time in mid-2016 (I forget the actual date), I was diagnosed with Crohn’s Disease — an IBD, or Inflammatory Bowel Disease. My mother has it; at least a mild case of it, and with it being somewhat heriditary I thought, at the age of 33, I’d escaped its visceral clutches.
I was 18 — on the nose — when I was diagnosed with AS, or Ankylosing Spondylitis, an autoimmue disease, similar to Arthritis. I had considered this my ‘hand-me-down’ from my mother (both are considered ‘autoimmune conditions’, although Crohn’s technically isn’t), expecting that to be the only gift.
My first symptoms arrived in 2014. I lost a significant amount of weight; food was a struggle. I was in pain most of the time, but eating was particularly difficult because I knew that shortly after I’d be in considerable agony. I made appointments with my GP only to be told that it was IBS.
Side note: if this is happening with you and your doctor, and you feel it may be IBD, keep pressing for answers. I’d even had a colonoscopy that failed to show conclusive Crohn’s.
I eventually made peace with this diagnosis (‘how incredibly naive!’, I hear you say) and tried my best to keep going; and I did — quite well, for over two years until everything decided to fall apart, which is — unfortunately — not an exaggeration.
My eventual Crohn’s diagnosis was given following a routine MRI scan which had been planned for my AS — my rheumatologist wanted to try me on immunosuppressants to calm my symptoms (this is of significant importance in the story), but something was found in my bowel. It appeared I had a fistula in my Sigmoid Colon, and an abscess had formed as a result.
I actually found the above out because I’d had a call from the CT department requesting imaging. I’d just had a scan, I thought. Why were they calling for another? It had turned out my rheumatologist communicated her findings to me in a letter (please, Doctors, for the love of all that is holy, don’t do this!), which was delivered after the call from CT. It sent me dizzy when I read it. “What’s a fistula? Am I going to need an operation? Am I going to die?” — the thoughts span round my head for days, weeks until my CT scan.
Following the scan I received a call from my doctors office, saying I must immediately go to A&E as the abscess needed urgent attention. I was admitted at my local hospital into Surgical Assessment, and I must’ve seen four or five consultants, two of which gave me the rubber glove treatment *shudders*. They eventually settled on intraveinous antibiotics with a long course of oral antibiotics to follow after discharge, the same day. I am not kidding you, I had a shopping bag full of pills. (Had those things been worth any value I’d have been a rich man).
Six weeks later, after necking hundreds of these multicoloured pills, I had my follow up scan. I was all done, I thought. No word from any Gastro-intestinal or Colorectal doctors. Wonderful news! I could go ahead with immunosuppressant treatment now, and was promtply prescribed weekly doses of Etanercept, injected into my thigh.
Side note: Immunosuppressants work in the same way the reset button does on a computer when it’s frozen. The biologics supress your immune system, calming your symptoms, whilst leaving you susceptible to illness. A trade off most are happy with given the severity of the other option — no treatment.
The first couple of days of this treatment hit me with boughts of nausea and vomiting, but I was assured this was completely normal, except it wasn’t. I didn’t know this at the time but I still had the abscess in my bowel. It hadn’t responded to antibiotics and was almost exactly the same size when I started my immunosuppresant therapy.
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In the coming weeks I’d had a multitude of symptoms:
Brain fog
Spot outbreaks
Headaches
Watering Eyes
Mouth Ulcers
Chest Pains
Abdominal Pains
Depression with Suicidal Ideation
Anxiety
The worst of all was the pain in my right buttock, which was where the abscess was leaking into. I was categorically told that it was not an infection from multiple sources, prescribed morphine and told to get some rest.
On Monday 21st November, two days after seeing an emergency doctor (who told me the above — i.e. no infection) I was admitted to hospital in incredible pain. My vitals were all over the place. Heart rate around 140, low blood pressure, high CRP which was around 300 (298 to be exact, which is around 290 more than the average individual). I was in a mess but I didn’t know how bad. I was told that night that I needed a stoma. Mine would be a loop ileostomy, the plan for which was reversible. I was sited by the Stoma team (who I know well, now!) with a little sticker to show where it was going — something I got to choose myself, within reason.
The next two days were a blur, until I woke up on Wednesday 23rd November struggling to breathe. I had sepsis, and my heart was failing. I was told I needed emergency surgery to drain the abscess. I was in theatre for a number of hours, perhaps 8? More likely 12. The surgeons and theatre staff washed my body out as best they could, leaving me with an ileostomy and an incision at the base of my spine that was around 12cm that was left to heal naturally. The rest is unknown to me, but I didn’t wake up after surgery. I was in a dire state and needed 1-to-1 care, therefore I was sent to the only place that can do that: the Intensive Care Unit.
When I was a child I was absolutely fascinated with these types of wards and the equipment they used. A fascination made deeper by the fact you couldn’t ever see inside (no internet in the 80s/early 90s, folks). It was an anxious fascination more than anything; I was secretly terrified of ever ending up in one of those wards. Yet there I laid, unaware, the machines keeping me alive.
My first two weeks in ICU were stormy. My prognosis was utterly terrible. The doctors had ‘the’ conversation with my parents, saying I wasn’t going to make it and to prepare for the worst. I was in an induced coma, under which I had intense delirium (I’ll write more on that another time); I fought my ventilator on number of occasions, so much so I had to be given a tracheostomy just so I wouldn’t pull it out; I fought my central line and arterial line, both which could have quite easily killed me if I’d have achieved my goal. I was so out of it on meds — ketamine, fentanyl — that I actually hit my mum in the face (it’s okay, I got a tattoo for her afterwards) and swore profusely, both vocally and gesticulatory, at any doctor or nurse that came within 5 feet of me (apart from the one who looked like Eric Koston. He was cool.)
Almost exactly two weeks after being brought up to the ward, I was finally well enough to be brought out of my coma, off sedation completely. I couldn’t talk due to the trach, and because I hadn’t moved my muscles had started to waste. I also weighed just 7 stones, which is just slightly more than an average 12 year old boy, for reference. It took me a week to get out of ICU, back on to a regular ward, and a further week to get out of hospital, but that was only the start of that particular journey. It took me another two years of healing at home, daily dressings (which went on for a further four years), and many, many therapist appointments before I could even consider returning to a ‘normal’ life again.
In total, I’d survived:
A ruptured abscess, which perforated my large intestine
Severe Sepsis, which was bordering on Septic Shock
Heart Failure
Pulmonary Oedema
All because of Crohn’s.
So, if anyone says to you that Crohn’s is just a tummy ache, please feel free to send them this link. Or just give them the finger, that works too.
