A Brief History of My Crohns

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.

6 Responses to A Brief History of My Crohns

  1. Ilana says:

    Hi Ben,

    Please email me. I would like to chat with you. I suffer from this nasty disease for almost 19 years.
    Hope to hear from you soon. Ilana in Montreal, Canada

  2. Sean Myers says:

    Hi ben i have quite a stubbon case of ulstrative colitus now for around 8 years finally getting my first infusion on wednesday! And am curious on amount of time i should expect for me to see any change?? i know i shudnt but this is really my last option and ive pinned all my hopes on it working! Ive been on the highest dose of steroids for around 7 years and cannot get off them.

    • Hello Sean

      That is a tough question. Each person responds differently and you say your Colitis has been stubborn so I do not want to raise any false hopes. I can only say from my own point of view.
      I noticed a small improvement each time I had an infusion. My problem was that my Crohn’s Disease had scarred my bowel and ended up causing more problems than the Crohn’s. So this tarred my experience as it made the Infliximab seem like it wasn’t working properly.

      If you have had big problems with your Colitis you may find that scarring causes you a problem or maybe some other knock on side effects of the Disease. However, the way the drug works means you should see some small improvements within the first few weeks (Plus you generally have 2 infusions pretty close together for your first time so it has a stronger impact).

      I’m sorry I can’t offer you any reassurance. All I can say is go in with an open mind. If you can believe it’s going to work, you can sometimes fool your body into feeling a little better. If you currently work I would say it may be worth taking a couple of days off after your first infusion as you can feel a bit rough. It’s a bit like a hangover but these get less intense after a few infusions. If you have been taking steroids long term then I am sure you will feel much better once you tail those off and allow the Inflixmab to control your symptoms. It has fewer known, day to day side effects than steroids.

      Good luck and please let us know how you get on. It is always interesting to see how others get on with this medication

      Take Care

      Ben

  3. Stu says:

    Hi Ben,

    My name is Stu. I run a design business specialising in digital health tools – apps and websites, that sort of thing (www.designandprosper.com).

    I found your blog and thought you might be interested in the latest app we’re working on. It allows people to track their health condition, providing them with a visual summary of their condition to help them/their doctor/specialist get the full picture on when symptoms are occurring and any triggers that might occur. You’d be able to track your symptoms alongside diet/exercise/mood/medication. The app will be very quick and easy to use (not at all laborious like many on the market) and will major on great design.

    Might you be interested in a chat? We’re trying to speak to a range of different people with various conditions so as we can make the app as relevant and useful as possible for EVERYONE!!

    Let me know if you, or someone you know might be interested!

    Have a great evening!
    Stu 

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