I was diagnosed with Ulcerative Colitis at the age 21 after experiencing severe abdominal pains. I was in hospital for 3 months in total trying all the meds and steroids possible to maintain the ulcers in my large bowel. However too much of my bowel was affected, so I ended up having major open surgery to remove my large bowel and give me a stoma.

I had never heard of this illness nor did I ever see or know anyone with a stoma bag. In 2009, it was not something many people lived with openly, and I found it was not very common in young people. I really struggled to come to terms with having a stoma, so I decided to go for j pouch surgery, reversing my stoma to an internal pouch. This consisted of 3 major operations in total which all had their own small complications and long recovery time.

Just over a year after having the stoma, I had the j pouch surgery, which then meant my pouch and small intestine connected to my rectum, allowing me to go to the toilet from my bottom again. Only this time it wasn’t like the stool I had before all the surgery, it was loose and pretty much like having diarrhoea all the time. I was having to go to the toilet 8-10 times a day. I felt too embarrassed to use public toilets and became a bit of a recluse because I felt too ashamed of someone hearing me on the toilet or the smell it would leave behind through no fault of my own.

In 2021, after going for a standard check up endoscopy, my specialist accidentally perforated my bowel without knowing. It wasn’t until I went to A&E in agony 3 days after my endoscopy that checks were done and they saw there was a hole in my bowel and stool was leaking into my stomach which is why I was feeling so unwell and in so much pain. They had to operate there and then as they were very worried about sepsis and other complications. I didn’t have time to prepare myself to go through the agony of open surgery again or time to prepare for a stoma again after so many years without one.

It was just as bad as I remembered it to be all those years ago. I woke up in the intensive care unit and had to start the recovery process all over again. I couldn’t believe how much had changed since I last had my stoma. So much more support from stoma nurses, online forums, people on social media talking about the same things I’d been through and even more people on the hospital ward suffering with Colitis & Crohn's. Even the stoma supplies were better and so many options with stoma bags.

Going through all of this in my twenties, I had a lot going on – starting a career, maintaining my social life, and more. I’ve been very fortunate that my workplace has been incredibly supportive throughout my illness. I’ve worked for the same company for 17 years, so they’ve seen me through every stage of this journey. They have provided counselling sessions, paid time off to focus on my recovery, flexible working hours for hospital or doctor appointments, and have always asked if I need any assistance at the workplace.

Their support has been invaluable, relieving the stress of financial worries due to sick leave and accommodating my needs on days when I might be late or need to work from home due to medical issues. I couldn’t have asked for better support from my employer.

If I were to give advice to others living with chronic conditions in employment, I’d suggest finding an employer who offers flexible working arrangements and the option to work from home. Look for a workplace with good health benefits and a supportive HR sickness policy, as well as comfortable and accessible toilet facilities, including disabled toilets if needed.

Many employers now have supportive and inclusive policies, along with flexible working options. I advise those with Crohn's or Colitis to inform their colleagues about their condition and be upfront about the support and facilities they might need to ensure a comfortable working environment.

You are not obligated to discuss your condition with colleagues unless you feel comfortable doing so. However, some colleagues may not understand your condition or how it affects you. A brief conversation to explain your condition and its impact can help create a more understanding and supportive workplace, especially with close colleagues. It’s also important to clarify to employers that Crohn's and Colitis are recognised disabilities and discuss how they can make your work life as pleasant as possible.

I know I'm very fortunate to have a supportive working environment, however for those who aren't as lucky, Crohn's & Colitis UK and their 'Are You IN?' programme can be a huge help! The charity creates a supportive community who you can reach out to for advice and to see similar stories to what you may be going through. It can be a very lonely condition so it’s really reassuring and a great comfort to speak to others going through a similar illness to you. 

Are You IN? is designed to help employers better support people living with invisible conditions and disabilities like Crohn’s and Colitis at work. If your organisation decides to be 'IN', you can make a life-changing difference to your members of staff and your team.