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Inspiring ostomates share their stories...

  • 05.11.2019
  • JessicaMG
  • Clinical Negligence
  • Awareness hidden disability stoma colostomy bag Urostomy bag Ileostomy bag Colostomy ileostomy urostomy invisible illness

stoma.jpgUndergoing surgery to have a stoma is a life-changing event provoking mixed emotions. The reasons for needing a stoma are varied.

Stomas are sometimes necessary to deal with a blockage, for example due to cancer; or perforation due to rupture or injury caused during surgery. In some cases they are necessary to provide much-needed relief from ongoing chronic conditions such as Crohn’s disease. While having a stoma can prove to be the start of a new chapter in the lives of individuals, this major procedure and the lifestyle changes that go along with it can be extremely daunting.

Until fairly recently, stomas had rarely been discussed or featured in the spotlight, which meant that many individuals who had undergone this procedure were left feeling isolated as a result of their condition. As a result, many inspiring ostomates took matters into their own hands to increase awareness of their conditions and lifestyle in the public domain.

While mainstream media failed to cover hidden illnesses, a growing community of ostomates was emerging online, who were shunning the notion of staying in the shadows in favour of living boldly and bravely discussing their individual journeys.

As part of our ongoing campaign to increase body positivity and tackle the stigma associated with having a stoma, we’ve spoken to a number of these individuals to hear their stories - and hopefully provide inspiration to people living with a stoma who may be lacking in confidence.

Jenna’s story

After living with Crohn’s disease with no remission for eight years, Jenna Donofry had already undergone three open bowel surgeries, as well as trying many different types of medication with no relief. Her quality of life had suffered considerably as a result, which meant she was experiencing constant pain and depression. In October 2012, she made the decision to schedule surgery to remove her large intestine, and while the recovery process has been long and difficult, it remains the best decision she has ever made. Jenna says:

In the first few weeks after I got my stoma I felt better health-wise, but the recovery process was much more lengthy than my doctor had let on. It didn't matter though, because none of that came close to being as difficult as the disease was when I had my colon, so it was always worth it to me.

When you've laughed at death as many times as I have, you learn to fear it more. Healing was exactly that - healing. Physically and mentally. The hardest part to get used to was definitely the ostomy bag itself just being there. I would fiddle with it constantly because I wasn't sure - is it full, is it leaking, is it showing, what's it doing? It took a long time for me to "forget" it was there on a regular basis. It might not seem like it at first, but you will get used to it.

Jenna’s disease went into remission for the first time in 15 years recently, and this inspired her to try something she never thought she would be able to do before - hiking. Previously, Jenna has thought that the heat, continuous walking and risk of falling meant that long walks would never be an option for her - but she didn’t let it stop her. She says:

After surgery number 10 in December 2018 I started working out to get to that goal. I'm now a certified personal trainer, I've worked out over 160 days in a row and I've gone on two hikes. I'd say not only did I make it to my goal, but I surpassed it. I don't plan on stopping here either.

When asked about her initial perception of stomas, Jenna says she had the same thoughts as anyone else - that they were something to be feared. However, she now has a sense of determination to prove that stomas should not be stigmatised.

Talking about it, showing people, wearing bikinis and crop tops, feeling that freedom again changed my mind about what I thought was important. Negative thoughts other people ‘could’ be having definitely isn't important.

You can follow Jenna’s story and fitness journey on her Instagram page here.

Lolly’s story

Lauren ‘Lolly’ Cooper had stoma surgery in January 2019 after living with severe Crohn’s disease. She said the first few weeks following the procedure were the most challenging, and that learning how to carry out everyday tasks such as changing the bag were complicated at first. However, Lolly credits the medical staff in hospital for staying by her side until she was confident enough to take on such tasks on her own.

Lolly admits that, at first, she was nervous that she would struggle to accept her stoma, and that her body confidence would suffer as a result. However, she now says her body confidence has actually improved, explaining:

I love my stoma - it’s not only given me my life back, but it's a symbol of what I’ve battled through to be standing here today!

After initially being worried to tell people about her stoma, Lolly said she took to social media to tell her story.

This has helped me to connect with a community of ostomates, and raise awareness for my condition. The other benefit of this is that I rarely have to tell anybody about my stoma - they already know! This has helped me remove the shame that can often be incited by having to admit or reveal something.

Here are Lolly's top three misconceptions about stomas, and what she has to say about them:

  1. Only old people have stomas - "Wrong! I know a whole community..."
  2. You can never drink alcohol again - "Wrong! You can still enjoy a drink (or three!). Introduce alcohol slowly to see which drinks work for you and stay aware of dehydration”.
  3. You can’t swim with an ostomy – “Wrong! I swim and even surf with mine!”

You can follow Lolly’s inspiring story on her Instagram profile.

Find out more about famous people living with a stoma

As part of our ongoing body positivity campaign, we have written a series of blog posts about public perceptions of stomas, along with information on high-profile individuals who have lived with a stoma. Find out more about famous people who have lived with a stoma by reading our recent blog post.