My Story

So this is happening. Some of you may have known that I was lucky enough to get a place in the London Marathon 2023. Unfortunately things took a turn for the worse the month before and I deferred my place to 2024. Now it’s happening. I’m actually going to do it.  I am doing it for Crohns and Colitis UK and you can read my story below….

My symptoms first started at fourteen, I picked up a bug on a family holiday abroad and just never got better. I had diarrhoea, blood loss, fatigue, sickness, horrific tummy pains and extreme weight loss. All whilst I was trying to study and take my GCSE’s. My mum took me back and forth to the doctors over and over again but they couldn’t get to the bottom of what was going on. I was told I had a dairy allergy, then asked if I could be pregnant, taking laxatives, making myself sick or taking recreational drugs. 

I made it to college and after being there for five weeks I had an incredibly painful lump near my bum. I went back to the doctors again and at this point they had a look and gave me some antibiotics. They didn’t touch it and a week later I couldn’t walk. I went back to the doctors and they urged me to go to A&E immediately.

I had a perianal abscess. This was operated on and then “packed” everyday for three months. At 16 having an abscess was bad enough but then having to have it packed every morning by a medical professional was soul destroying. The three months came to an end, and that evening I felt a lump on the other side. The whole time it had been pushed the the other side. After another trip to the hospital, another operation and setons put in place my other symptoms were taken seriously and I was diagnosed with Crohn’s disease.

Medications started, I was originally put on steroids, then Pentasa, Azathioprine, Infliximab, Humira and now I am on Vedolizumab. I have also had B12 injections every six weeks since I was diagnosed.

From 20-31 I was going ok, I had flares but my medication was changed and we got it back under control. I had my two children via caesarean and lived a fairly normal life. Some foods upset me, sometimes I was wiped out, sometimes I had to cancel plans but I was good. I was OK.

Then March 2022 happened. I was noticing I was in pain a lot. Struggling to eat much, my symptoms were getting worse. It was time for the dreaded colonoscopy and this was booked. Results showed two strictures in my colon, so narrow the scope wouldn’t go through the second. Next up CT scan. Confirmed the two strictures. My consultant recommended we doubled the dose of my medication for four months and then redo both tests to see if it had helped. It hadn’t. I was booked in for surgery.

March 16th 2023 I was taken down for a resection, to chop the two strictures out and rejoin. Unfortunately my spleen was nicked during the procedure and it went from keyhole to open surgery. I knew there was a chance of waking up with an ileostomy but I was young and fit. My crohns wasn’t active, it was scar tissue causing the problems. So it should be, although major, straightforward. I woke up with a huge wound but no stoma.

The next six days were are a blur. I was in so much pain I could barely breathe. My obs were not good and I was coming out in bruising all over my limbs. I had two CT scans and it was confirmed I had sepsis and where my colon had been stitched back together, it was leaking. I was very, very unwell.

I was taken back down within two hours for emergency surgery, with this time it being more likely I would wake up with an ileostomy.

25 hours later I woke up in ICU. I had 17 various tubes and drips coming out of me. But I was out of pain…ICU pain killers will do that!!

At this point I was 7 days into my hospital stay, from there I had various infections, pneumonia and was in for a total of 32 days. The longest 32 days of my life. 

I’m home now. I’m trying to move on with life to embrace my new body and educate others about stomas, IBD and invisible illness. I’m not ok all the time but I will come out of the other side, stronger and braver than I ever was before. I want to help people understand IBD, to not be ashamed or embarrassed. My advice for anyone who has recently been diagnosed, would be to rest when you feel you need to, take each day as it comes and life will get better again. You will feel like you again. I wish when I was diagnosed there was more places I could go and read stories of people having normal lives. During the last year crohns has definitely been in the driving seat for me, but the 11 years before that I was. It’s my turn again soon.

Right, so if you read all that above you’ll know I’m still in recovery physically and mentally from two major operations. I can’t run to the end of my road yet but stoma or no stoma, running, walking, hobbling, crawling I will get across the finish line. I’m not putting loads of pressure on timing because for me it’s not about that. It’s about how life can throw huge curve balls at you, and you pick yourself and you carry on. I need a focus, I need a challenge and this is it.

Crohns and Colitis raise money for research into new medicines, towards research to find a cure (there isn’t one at the moment) and to support people day to day. They have helplines, Facebook pages and support networks, all of which I’ve used. They have helplines for friends and family too because when someone you love is diagnosed, they may need support too.

It’ll be one year, four weeks and one day since I was lying in ICU and telling the amazing nurses there that I would be running the marathon. For me that means more than anything and that time in my life will be the thought that pushes me to the end.
I know times are particularly tough at the moment, I understand a lot of people won’t be able to donate, even in if you can share this page to raise awareness and help me hit my target it would be appreciated more than you know…and if you’ve got this far down, thank you. Thank you for taking the time to read my story. ❤️

Follow my progress, recovery and crohns story over on my Instagram page linked below. 

@jonesvscrohns