I stumbled upon ImproveCareNow (ICN) by chance. A predecessor to the network, the C3N Project, had been mentioned in passing during assigned reading for one of my university courses. Naturally, as someone with ulcerative colitis (UC) I was intrigued. Though at the time I was busy with essays, a dissertation and job applications so C3N fell to the back of my mind.  

A year or so later, now graduated and - despite my worst fears - gainfully employed, I remembered C3N. I reached out to their Facebook page and was directed to ICN. I got in touch and after a phone call with Michelle and Christian my confidence in the network was affirmed. Off the back of that call I’ve planned next steps with the UK network and was asked to write a blog post to introduce myself, so here I am writing this (a few months later than planned).

Sitting down to write about my story with ulcerative colitis feels a little odd, more so than I thought it might. I suppose this is because taking time to reflect or dwell on my journey with this disease runs counter to my approach these last 17 years. It’s also only since I’ve reached my twenties that I feel fully comfortable talking about something, which for a very long time I shared with nobody except my family and my doctors.  

I was diagnosed at the age of six, too young to understand little if any of what this meant. I do, of course, remember being in hospital in the run up to my diagnosis; I was on a ward with other children where I recall eating quite a lot of jelly - exactly the type of takeaway you’d expect from a 6-year-old. Before going to hospital my parents had done a good job of talking up a games room there, so most of my potential anxieties were alleviated. I do remember a few of the symptoms that lead up to me being in hospital: having an accident in my shorts while returning from a school trip, staying home from school more days than normal and feeling relatively weak. 

Speaking to my parents as an adult I know they were in a way relieved to get a diagnosis. They knew I was ill but didn’t know how serious it was. And being faced with the awful realities some other parents were dealing with on the ward, the uncertainty was cruel.

After my colonoscopy I was prescribed Mesalazine and was relatively - from what I can remember - healthy for the next six or so years. Though a bout with salmonella put me in hospital for weeks. I tend to demarcate my experience with UC into the following periods:  

  • Age 6: diagnosis and treatment (well enough) 
  • Age 8: Salmonella causes a flare and hospitalisation for a few weeks (recover and again well enough, though I did have a very poor appetite and was therefore unsurprisingly, very skinny)
  • Age 10-12: still on Mesalazine but my ‘tummy thing’ barely even registers as an issue. No longer very skinny.
  • Age 13-16: probably my most serious time with UC. I had moved to a new boarding school with a very demanding schedule and it coincided with my symptoms returning. Periodically anaemic during this time as well.

When I think of my journey with UC my mind goes to this period from 13-16. I’d probably describe myself as ‘just about coping’ during this period; I was managing to carry on as normal and my peers were none the wiser. Though they did notice I was skinnier and paler than anyone else. 

I had a few rounds of steroids during these years and they always improved my symptoms significantly. Though during this time, I would habitually lie to my doctor about how many bowel movements I was having (7 or 8 movements would be changed to 4 or 5). I think I wanted to ignore my UC and just carry on best as I could. I also remember how she would ask me about the urgency of my movements and whether I was always making it to the toilet, I said yes but the truth was that I wasn’t. I’d spend time in lessons counting down the clock until the end of a lesson for when I could go to the toilet, all the time petrified that I might have an accident. Though I did have accidents fortunately nobody was ever around, and they were in relatively private places. I dealt with them and told no-one.

At the time, the thought of admitting I had a condition that meant I had frequent bowel movements and may periodically have accidents was mortifying; especially in a boys’ boarding house. Looking back, I made this more of an issue than it needed to be; they would probably just have found it funny.

I described reflecting on my UC as odd. I think it’s because I have found that focusing away from UC is the best approach. Focus on health, on treatment, and your life outside of the illness; not the disease itself. You can’t let your disease keep you from moving forward. It’s important to do as much as you can. I’m incredibly fortunate, I live in a country with universal and high-quality health care. I’m also incredibly fortunate that at about the time my voice dropped - age 16 - my UC went into complete remission. I’ve been fit and well ever since. I take my 1.5g of slow release Mesalazine granules every morning and my UC does not affect me in anyway. 

I’m proud of my recovery and I think it’s now also time to be proud of the strength it takes to live with IBD. If you’re clinging on to any of that potential embarrassment that comes with a bowel disease, it’s time to be proud of yourself and what it's takes to be on this journey. 

If contributing to ICN means that I can in some small way help others to cope or recover, then I am delighted to be involved.


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