katie from scotland

‘My inflammatory bowel disease – colitis journey has been a fast one to say the least.

I was officially diagnosed with ulcerative colitis (ulceration/inflammation of the colon) in my case proctitis which is intensified ulceration and inflammation in the rectum.

This was December 2018 after a hospital stay which got me diagnosed and on a dose of steroids and daily pentasa tablets and suppositories to keep the inflammation at bay.

Prior to this I had been experiencing symptoms for around 6 years but with every GP appointment it was another ‘dairy intolerance or IBS (irritable bowel syndrome) diagnosis which just didn’t sit well with what I was experiencing, daily toilet trips up to 25-30 times a day and passing a lot of blood in my stools, joint pain, hair loss, skin issues, abdominal pain, fatigue. With colitis finally diagnosed and on the right form of medication, I thought it would be smooth sailing from then.

Forward to October 2019 just 10 months after diagnosis I was in the worst flare I’d ever had, this resulted in another hospital stay, this time the IV steroids hadn’t worked and I had an infliximab infusion. The infusion is meant to blast the inflammation and keep the flare at bay, for me this didn’t work and I became a part of the 3 in 10 statistic that had to have surgery to make me better.

I was given 20 hours notice for stoma surgery as my bowels were so inflamed and colitis spread around my colon that it needed to come out! There were so many questions and emotions running through my head when I was told I’d be getting a stoma. Anything had to be better than the pain and discomfort I’d been having, but surely not something as serious as a stoma? IBD is such an invisible illness it was hard to accept I was just that unwell. The pain had just become my new healthy but now I realise I’d developed and very different version of ‘healthy’.

I had a subtotal colectomy and ileostomy operation which means my colon was removed and a rectal stump left intact, my small intestine was then brought through my abdominal wall and a stoma attaches to my stomach on the right hand side of my body, attached to this is an ileostomy bag to collect any output. My ostomy journey has been one I’ve adapted to quickly and I now feel the healthiest I have in about 6 years!

The thought of having a stoma was much scarier than actually living day to day with one is. Yes it’s a visible reminder of my illness, but it is also a visible reminder of how amazing the human body and modern medicine is, it’s a reminder that I am strong and resilient!

Stoma life does come with its challenges as with everything in life, but for me my good health outweighs the bad days of leaks, bag changes, and living with a bag permanently attached to me body. For me and my journey it has all been about a positive perspective and rather than mourning what I have lost, I am looking at what I have gained: more time doing what I love, no more sick days or cancelled plans, a body that works! I do have days where I am sad, but don’t we all have down days, it gives me a chance to reflect on where I am and how I can appreciate what my body has gone through and come out the other side healthy and working rather than what it didn’t before.

When I was recovering I started an Instagram page which was really great in reaching out the IBD/ostomate community there are so many people out there with a similar situation and it’s great to share tips and conversations with people that truly understand what’s going on. It let’s me document my journey of bag life and help raise awareness of just how amazing stomas are! I hope to keep raising awareness in as positive a way I can. I plan to continue my ostomate journey with a positive outlook and hope my story can give someone else a bit of hope that things do get better after stomas. ‘