It took 7 years for my employer to take Colitis seriously

Bill has lived with Colitis for over 30 years, and has seen a lot of changes in that time.

At work, the response he got when he first joined in 1999 could not have been more different to when he returned post-surgery 7 years later.


It has been a battle to live with Colitis for so long.

There was nothing in terms of support, and it took me years to get a diagnosis. I was just told that it was growing pains, despite being 20 years old. There was very little knowledge, and it was put down to bowel problems because of food. Eventually, I sought a second opinion from a different GP and was referred to a hospital for diagnosis. Even there, it seemed like little was known about what was wrong with me.

I had five colonoscopies in four months before actually getting diagnosed with Ulcerative Colitis in 1987.


Bill

Living with Colitis

At first I was on a high dose of prednisolone which made me gain weight and feel very fatigued. After some time and a new drug, I stabilised and learned how to live with the condition. If I went out, the first I’d do is look for a toilet.

In 1999 I started working for my local council and thought I would tell them about my Colitis to see how they could support me. Due to the fatigue and urgent need to use a toilet, I was hoping occupational health could advise me on some adjustments and how to manage things while I was a work.

Unfortunately, they were not supportive and had very little understanding of what I was going through.

Back then, they told me I was over-reacting and that my condition wasn’t a serious one.

I was taking days off which affected my sickness record and really wanted someone to support me who had knowledge of the condition.

I continued to have uncontrollable flare-ups and was admitted to hospital in 2006. This led to emergency surgery, and I woke up with a stoma. I had my colon and anal passage removed so I have a permanent ileostomy.

Due to some infections which prolonged my stay I was in hospital into the following year but the support I received from work was so different from when I first joined.

I had a very good manager this time, who was excellent. They used to visit me in hospital, and I felt very supported.

When I went back to work I was using a wheelchair as I had lost all my muscle tone, but a physiotherapist was working with me to get me back on my feet.

I went back to occupational health and the new nurse was great. They arranged all sorts of adjustments for me. I had specialist chair with a height adjustable table, a designated parking space, and amended sick leave arrangements.

At home I was supported by my partner and family. As my partner is a nurse, he was not fazed by the aftercare I needed, or the hospital equipment I’d brought home with me.

Since having my stoma, my lifestyle has improved 1000%

I'm more confident, able to go abroad, and don't need to always look out for the toilets. I like to use my experience to reassure others.

I have an annual review to make sure everything is okay, and I have this amazing support network to help me with everything. My partner, my stoma nurses who I have great relationships with, and my consultant who is still with me having done my operation all those years ago.

Your life doesn't end due to a stoma. Life began when I had my stoma.

Things have come on so far since my diagnosis and my surgery. I strongly feel that Crohn’s & Colitis UK have helped lead the way and many these changes are thanks to them.

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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.

  • Signposting you to 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).

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