Finding my new normal after being diagnosed with Colitis

30 March 2021

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After his Colitis diagnosis, Elliot's "normal" life seemed like a thing of the past. But with medication, getting to know his condition and by understanding where his anxiety comes from, he was able to get back the life he had.

When I was diagnosed with Colitis about two years ago, I thought this would be my new identity and permanently change my life.

Living with Colitis

I thought it would limit my career prospects and relationships and stop me being able to do the sports and activities I loved. It didn’t. I’ve been incredibly lucky in that the first medication I tried, mesalazine, almost immediately stopped my symptoms. It has also been effective in limiting my flare ups; I have had only two of note since they were prescribed over two years ago. So, this diagnosis did not ruin my life. In fact, the day I was diagnosed was the day I was able to start taking my life back and getting my condition under control.

I hope that with this blog I can speak to those that are new in their Crohns and Colitis experience, looking for reassurance that their life will go back to normal. I can also share my experience grappling with the mental aspects of this condition.

Prior to my diagnosis I suffered from pain and high urgency to use the toilet. I was very irregular and unpredictable, I was losing weight and I had become very reclusive as a result. This all started to improve very quickly from the day I was diagnosed. Now, the biggest way my Colitis affects my life day to day is mentally. The bathroom urgency, irregularity, and unpredictability I experienced prior to my diagnosis have left me with a level of anxiety that is probably the biggest struggle I have day to day with my Colitis.

I’m able to do things now that, at one time, I never thought I would do again.

I’m back to playing hockey, long distance bike rides, long runs, and I’m fitter than I’ve ever been. Over the last two years I’ve also learnt my new digestive routine. I know what foods and drinks make me less regular, less confident or less comfortable.

However, I still scan every new venue for the bathrooms on arrival and will always “try and go” before I set off anywhere, despite knowing the strain is not healthy for me and even though it’s been a long time since I’ve ever needed to urgently use a toilet away from home. I’ve learnt the situations that exacerbate this anxiety and what I can do to moderate this. For example, I prefer to drive long journeys myself rather than as a passenger so I feel in control of stops. And even two years in there are still situations I avoid like staying overnight somewhere I’d need to share access to a bathroom.

I know there is a link between stress and this condition.

This anxiety is much more a factor when meeting new people or approaching social settings in which I’m not entirely comfortable. But I know that I must not use this anxiety as an excuse to stay in my comfort zone or return to the reclusive habits I demonstrated prior to my diagnosis. I am in control.

I am quite private about sharing much about my Colitis, especially with new people. I don’t want to be perceived as vulnerable or unhealthy. But my family, closest friends and work colleagues have all been incredibly supportive and are an invaluable support network for me. They’re there for me when I need them.

Everyone’s “right time” to tell someone will vary.

It will feel like a big deal to bring up because it is a part of who we are, but people who care about you will be understanding and want to do whatever they can to support you. And in terms of getting to know new people - romantic or otherwise - if you are worried that they may react with insensitivity or immaturity then maybe they aren’t someone you want to let into your life.

And the earlier you discover that, the better!

more information if you're newly diagnosed