What I’ve learnt from living with Crohn’s

15 October 2020

Molly loves Marmite, dogs, and Strictly Come Dancing. She is also from Somerset, loves her family and enjoys living in such a beautiful, rural part of the world.

After 16 years with Crohn’s and 9 with a permanent stoma named Neville, Molly shared with us the six things she has learned so far.

My life has been an adventure to say the least! You name a medication or surgery, and the chances are that I’ve had it.

If my CV could consist of completed medical procedures, I’d be called an over-achiever!

Living with Crohn's

To be brief: I was diagnosed with Crohn’s Disease aged 12 and was out of school for 4 years due to poor health but miraculously re-joined my year group just in time to do my GCSE’s which enabled me to progress to college. I became particularly unwell again in college so had to extend my time there to 3 years instead of the usual 2, taking a year out to have my stoma formed.

Then began university for 3 years to become a Paediatric Nurse which I had to extend by a few months to have another bowel resection. Currently, I work in the Child and Adolescent Mental Health Service and last year I had a stoma refashioning and resection – just to keep things interesting for 2019!

Throughout all the above events in my life, I was taking tablet and being intravenously infused with lots of various immunosuppressants, steroids and biologic therapies to try to gain control over my Crohn’s. This worked on/off and anyone with Crohn’s or Colitis would recognise the roller-coaster that my flare-ups entailed.

So, to reflect on the lessons I have learnt so far in my life:

1. Never take health for granted

Health should be everyone’s number one priority. As one quote states, "health is a crown that the healthy wear but only the sick can see". During the coronavirus pandemic, everyone is experiencing a heightened sense of their own mortality and vulnerability.

We chronic health experts by experience have this feeling frequently with musings such as "What long-term effects will my current/past medications and/or surgeries have on my health?".

Decisions that were made when we were newly diagnosed could potentially impact our future health outcomes.  

2. Trust yourself

It is you and only you who will be dealing with your Crohn’s, Colitis or chronic illness for life. I vividly recall one night over a Christmas period in hospital when I was the only one in the bay and I heard hospital volunteers singing carols.

That memory clings to me as a moment when I realised that I was on my own. Not alone, my family are amazing. But that ultimately, I would be the one experiencing this condition while the rest of the world keeps on spinning.

You have to be your own advocate and I had to find my voice when transitioning to adult care.

Don’t be afraid to say ‘something isn’t right’.

3. Find your people

I missed 4 years of school from Year 6 – Year 10. I never experienced the stage of relying on friends rather than family. Only fairly recently I realised that this has impacted on my social interactions even to this current day as I struggled to be open and vulnerable with people outside of my immediate family. Why would I need to be when my entire world was my family when I was house-bound for 4 years?

I don’t like sympathy. But I get frustrated when I do tell people about my health story and don’t get the reaction and true understanding, I feel it deserves. Therefore I continue to be selective with sharing my story.

4. There is no set timeline in life

As humans we have an innate fear of missing out or not being at the same life stage as others. I know I do. That classic quote – "comparison is the thief of joy" – is pretty accurate!

I have vast experience of being behind my peers in the ‘norms’ of life – when most of my contemporaries were going out to parties, I was home in my ‘safe bubble’, too ill to venture out. I missed my graduation, instead having to extend my degree due to my unreliable gastrointestinal tract and immune system!

But I have learnt that this is ok. The only competition should be with yourself and the person you were yesterday.

I’ve had life experiences, different to my peers, that are immeasurable in terms of what they have taught me.

Picture: Molly, newly diagnosed at the age of 12

5. Our bodies are maps

I heard a quote about "our bodies being a map of our life" and I thought "yes"!

That really connected with me. I have scars on my hands from numerous cannulas and scars on my tummy from several resections. I am the proud owner of a ‘barbie butt’, resulting from a proctocolectomy, and my friend Neville, my stoma, is with me wherever I go. My body is not ‘typical’ or the social norm of ‘beautiful’ that the media portray. But it sure isn’t boring.

My body has lumps, bumps, moles and holes – that show the battles I have won during my 28 years on this planet.

I am continuing to learn to live with Neville. I do not regret having him; he gave me the chance at ‘living life’ rather than ‘barely surviving’.

6. We are so resilient!

I wouldn’t change having Crohn’s or living with my stoma. That might sound bizarre to some. I don’t know who I would be without Crohn’s. It’s given me an abundance of empathy, shaped my career path and shown me how unbelievably resilient anyone living with Crohn’s, Colitis or chronic illness has to be!

What an honour to be able to have my words read by so many awesome chronic illness, Crohn’s, Colitis and/or stoma warriors

 Newly dignosed? Click for tips