My stoma story by Jackie Butterworth.

Helping others is my best medicine.

If anyone would have said to me two years ago that I’d now be the Chief Trustee of my own charity - Second Chance Ostomy Yorkshire – I’d have laughed. Actually, I’d have cried. I was so low, suffering through pain, leaks and a marriage break-up. It was only through the support of others that I’m now able to smile again and give something back.

2013. Unlucky for me.

I first started suffering with Ulcerative Colitis in 2013. Of course, at the time I didn’t think it was serious. Just a regular upset tummy and loose stools. I’ve had problems with anxiety and depression for many years, so stomach problems were nothing new.

Things got steadily worse to the point that I couldn’t take my then 6 years old son to school or even go out shopping myself. Accidents were becoming more common, feeding my anxiety. My life was confined to the toilet.

My GP referred me to hospital. While I was waiting for my appointment day, I had a massive flare up and ended up phoning for an ambulance. After days of scans and tests, I was given the bad news: I had Ulcerative Colitis.

I was put on medication and at first, everything went well. It was great to start getting back to normal. But the respite only lasted a few short weeks until things went from bad to worse. The pain was so intense I begged my surgeon to remove my colon.

My stoma saved my life, but I hated it all the same.

I still remember waking up after my surgery to see a bag attached to my tummy. I was heartbroken. I knew I should be feeling grateful to this stoma which had saved my life, but I couldn’t come to terms with this horrible, dirty bag that I would have to live with for the rest of my life. I’d always struggled with my self-image and now I couldn’t stand the sight of myself in the mirror.

Perhaps things might have been better if I’d had more support and someone to talk to. My husband couldn’t relate to how I was feeling, and our physical relationship really suffered. I also had quite a few problems with my stoma, like regular blockages. Then I had a bad infection requiring surgery that left me with bad scar tissue, which in turn caused more leaks. A vicious cycle. Finding out in 2017 that my Colitis had returned to my rectal stump and would need yet more surgery to remove, just about summed everything up.

Things could only get better. Couldn’t they?

I went into 2018 feeling much more positive. I was free from surgery and could concentrate on my recovery and finally learning to live with my stoma. Things with my husband weren’t great but it was still a massive shock when one day in October, he told me he was having an affair and was leaving me and our son.

Just to rub salt into my wounds, a few weeks later, my landlady told me she wanted me and my son out of the house we called home. Everything was going wrong, including my stoma bags that were leaking all the time. I was sore, I was anxious and if it wasn’t for my loving son, I wouldn’t be here today.

 

Meeting Tracey.

It was only when I met Tracey, the stoma nurse for my area, that things started to look up. She gave me practical stoma advice, but just as importantly, listened to my concerns. She told me about a support group called Friendship Friday where I met some amazing people and found out about a trauma group called BVocal. We talk openly about our experiences and use art as a creative outlet.

Finally, as my confidence built up, I started liking not only myself, but my stoma. I could finally appreciate that life with a stoma is 100% better than struggling with an autoimmune disease like Ulcerative Colitis.

Jackie's Ostomy Artwork

Everyone deserves a chance.

Second Chance Ostomy Yorkshire.

I know the power of a good support network. Mine has helped transform my life. Now I want to give back and help others. That’s why I set up my charity, Second Chance Ostomy Yorkshire

So many people come out of hospital, especially now in this socially distanced world, with no support and no one to turn to. We aim to change all that. The charity is made up of me and four other trustees, including one who is a qualified stoma nurse. We want to create a safe space where people can talk, ask questions, make friendships and access advice – all while raising stoma awareness.

I wasted years feeling ashamed of my stoma and thinking no one else would understand. I don’t want anyone else to suffer like that. I struggled, both physically and mentally. When you’re going to the toilet 30-40 times a day, the last thing you want to do is travel long distances. So, it’s important to me that we provide localised support for what can be a very isolating experience.

Since we’ve started the charity, we’ve had amazing support from local companies. A local crafting shop is even making us tote bags. Like all registered charities though, we need financial assistance too.

Looking ahead to a brighter future.

Like everyone, I pray our world can beat Covid-19 and get back to a new normal soon. Through the new charity, I look forward to helping fellow Ostomates to live a quality stoma life.

I still have my own challenges, recently I had more surgery for a hernia repair and also a cyst – and I still suffer from anxiety. But with my son Ben by my side (my absolute rock) and a new direction, I’m looking forward, not back.

Take care

Jackie

If you’ve been inspired by Jackie’s story and would like us to pass a message on, simply email meplus@convatec.com or if you’d like to contribute your own stoma story, just get in touch the same way. To find out more about Jackie’s charity, search for Second Chance Ostomy Yorkshire on Facebook, Instagram and Twitter or visit: https://second-chance-ostomy-yorkshire.ueniweb.com/

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