My Crohn’s history goes something like this:
At the age of 15-16 I lost a lot of weight, was going to the toilet a lot and had tummy aches a lot. The GP constantly diagnosed it as stress related IBS, due to moving house, changing schools, exams, being a moody teenager etc. This is far too common amongst young people with Crohn’s. With such a taboo subject (especially at that age) it was difficult to talk through these symptoms with friends and family. Leaving me feeling alone and frustrated.
At the age of 21 (after suffering with what I now know as Crohn’s like symptoms for 5-6 years) I went on holiday to Mexico. Whilst there I developed stomach ulcers from dodgy aspirin causing me to lose a few pints of blood through my back passage (black, congealed blood). As a result I passed out and fitted on the plane journey home due to being extremely aneamic. We touched down at Stansted airport (after nearly getting the whole plane diverted to Canada. I thought everyone would hate me, so I pretended to be feeling better than I was, allowing us to make it back to the UK). I got a police escorted ambulance to the local hospital (I didn’t go through customs so they needed to make sure I wasn’t a terrorist or something). After having an ultrasound and an x-ray I was told about the stomach ulcers, but was also told to get my bowel checked by my local hospital as it was “enlarged”. I spent just under a week in a quarantine room (They were cautious in case I had an exotic disease, so I got my own room, with no window with the nurses all wearing masks and aprons to protect themselves. Very surreal). Before being released I received several bags of blood to help perk me up, which I am extremely grateful of.
Once back in the Midlands I visited my local hospital for a few tests – colonoscopy, x-ray and ultrasound. Unfortunately, before the results came back I was rushed to the hospital with what I now know as a bowel blockage. I faecal vomited in the A&E reception (which meant I didn’t have to wait and queue – top tip there!). Once the excruciating pain and deathly sickness had been dealt with (mostly with morphine and anti sickness injections), I was admitted to a medical ward, where they proceeded to tell me, from my own notes, that I had this disease called Crohn’s. At this point I said “well nobody has told me I have crohn’s”, to which the nurse replied “from your notes you were diagnosed 6 months ago”. 6 months ago! Turns out the doctors had diagnosed my condition within a few weeks of me having the tests, but due to how the appointment waiting list works, I hadn’t had my appointment yet to see the consultant.
So I was packed off with dietary advice and medicine (Mezazaline) and a still poorly tummy. Before the medication had time to kick in, I was back in a different A&E dept after passing black blood at work. This was very scary and I immediately knew I would need to pay a visit to the hospital. This turned out to be my saviour. This new hospital I found myself in led me to the Crohn’s consultant I have now. He is a great guy who has helped me to get where I am today. More blood transfusions and pill dosage upped, I was allowed to return home within a week and a few days. I was now on Mezazaline, Azathioprine and an 8 week course of steroids (Prednisolone)
My Crohn’s has been flaring up more often and more severe, even though I have been on a high dose of Mezazaline, a high dose of Azathioprine and occasional steroids when symptoms got too much too handle. I have been told that surgery is not an option, partly due to how young I am (at the time of writing I’m 24), how fit I am (generally pretty healthy and active) and because of how well I recover when I am admitted to hospital.
My quick recovery in hospital always left me in a position where I felt stuck, with nothing to look forward to. By this I mean that I never seemed to progress, I would go into hospital with a flare up, but once the pain had subsided, I would be released into the wild, to fend for myself. Using the same drugs as before, knowing that some time soon, I would have another flare up and be back at square 1, knocking on A&E’s door.
I have now finally been given the go ahead to start Infliximab. This is where this blog begins. Hopefully the beginning to symptom free life…….
Only time will tell.