“I just hope that by sharing what happened to me, I can reassure people that Colitis isn’t as scary as it initially seems.” - Jenny’s story

Jenny Stephens lives in Liverpool, and was diagnosed with Ulcerative Colitis over 25 years ago. Now that she has got used to life with Inflammatory Bowel Disease, she wants to be the role model that she desperately needed when she was diagnosed as a young woman. This is her story.


My symptoms started when I was a teenager. I remember going to the toilet and seeing blood in my poo.  The trips to the toilet were becoming more and more regular. It was massively interfering with my life.

After this continued for some time, I eventually booked an appointment with my GP. I was around 18, and they initially diagnosed me with IBS.


After a few years passed, my symptoms continued and they were getting progressively worse. It was becoming intolerable. At this point, doctors said it was because I had hemorrhoids, which were causing me to bleed. Nothing else had been mentioned or investigated at that stage.

I remember around this time I could barely eat anything, I was living off yoghurt and plain toast, everything else would just come straight back up!

Since I couldn’t eat properly and was constantly going to the toilet, I dropped a significant amount of weight and had very little energy, so I felt like I was wasting away.


Due to this, and because of the amount of blood I was losing, I ended up in hospital and was kept in for about three weeks. It was scary not knowing what was going on, especially as the doctors at the hospital had no idea what was happening to me – I still had no answers.

After lots of blood tests and a colonoscopy, I was diagnosed with Ulcerative Colitis. By the time I got the news, my weight had dropped to under six stone. I was so unwell.

The doctors decided I needed to have stoma surgery to help get things under control as quickly as possible. Although it was a lot to get my head around, my symptoms definitely settled and I was able to start getting my life back.


It’s important to say that it was terrifying for me at first. Having Colitis isn’t just a physical thing. It’s very much a mental adjustment too. I remember when I had the stoma fitted, it really impacted my mental health, as I really struggled to come to terms with it.


Jenny

Living with Ulcerative Colitis

It’s an ordeal to be put to sleep, to then wake up with a new addition to your body – but also, not knowing how to look after it. It’s daunting!

Since then, I’ve had my stoma reversed and I’m really grateful to be able to live my life like I did before my diagnosis.


All of these experiences made me want to start my own small business and give back to the Crohn’s and Colitis community. So I now design stoma bag labels! It’s just my way of encouraging people to embrace their stoma bags and use them to help express themselves. If adding a bit of my artwork to your bag helps you build your confidence – especially when you’re on holiday or in your bikini – then fantastic! I don’t want anyone feeling isolated or like they need to hide away because they’ve had stoma surgery. I just want to help other people who are in the same position as me.

A percentage of all stoma bag labels purchased will be donated to Crohn's & Colitis UK. 


If I had one piece of advice for other people with Inflammatory Bowel Disease, it would be this - do not let it define you! If anything, it shows your strength and willingness to live a full life, despite the obstacles. You really can make it your super power!


Want to share your story?

We hear from people every day who rely on the Crohn’s and Colitis community for help and support. Sharing your experience can be helpful and inspiring.


Page
saved

This page has been saved in your personal space. Go to “My Page” to view all saved pages.

Helpline service

Helpline
Service

We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.

Our helpline team can help by:

  • Providing information about Crohn’s and Colitis.

  • Listening and talking through your situation.

  • Helping you to find support from others in the Crohn’s and Colitis community.

  • Providing details of other specialist organisations.

Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.

Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).

Live chat

If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.

Would you like to save the changes made to this page?