After ileostomy surgery in 2023, Andrew Parker decided to “get back to a normal life” – a modest ambition that has inspired him to help others with a stoma to do the same.  

In August 2022, I was just heading out of the door to the taxi. We were heading to the airport for a two-week trip to Chicago and New York with some friends. 

“Have you sent that poo sample off?” came the shout from my wife, not “Have you got the passports?” I’d been sent a screening kit a few weeks earlier and naturally ignored it for a while, then, following a certain amount of wifely persuasion, I’d done the test a day earlier. So, I popped it in a post box en-route to the airport and forgot all about it. 

A shock diagnosis: “It’s bowel cancer”

Fast forward a week when I was in our apartment in Chicago, and my mobile display lights up with ‘DOCTOR’ shown as the caller. Needless to say, I was a bit taken aback when my GP asked me to make an appointment ASAP. 

Fast forward again to 22 September when, following a colonoscopy and while still lying on the examination table, I hear the words, “It looks like you’ve got bowel cancer”. And with that, the consultant left the room and the nurse had to pick up the pieces! 

A week later, I saw a colorectal surgeon (great guy) who explained what would happen with regard to chemo/radiotherapy followed by surgery and that I’d be left with a temporary ileostomy for a few months. It would then be reversed, and I’d be back to “normal”. Everything sounded fine, even the stoma bit as it was to be “temporary”. 

Chemo and radiotherapy lasted eight weeks and, following a period to allow things to settle down, surgery to remove part of my lower intestine (lower anterior resection) was performed on 27 March 2023. While the surgery itself went well, I suffered an anastomotic leak which led to serious infection and took months to recover from. 

Boris the stoma is born 

Needless to say, given the damage caused to my colon by the radiotherapy and post-surgery infection, a reversal was out of the question and me and Boris the stoma were to be lifelong buddies! I was devastated. I was okay with the cancer thing but a stoma – no way could I cope with that! With the support of my wife and close friends I pulled myself together and decided that I needed to get back to a normal life. I just needed to find my “new normal”. 

In November 2020, I took early retirement at the age of 60 and continued to be very active. Going to the gym four or five times a week, regularly out with a wide range of friends, foreign travel far and wide, and actively supporting my football club, Bradford City. Despite living in Newcastle-upon-Tyne, I was and still am a season ticket holder and regularly do the 250-mile round trip for home games as well as getting to as many away games as possible. I needed to continue to do ALL those things – but now with Boris. 

Like most, if not all of us, it took about six to nine months to get my routine and product combinations right. So, I suffered a number of painful, heavy, embarrassing, soul destroying leaks. Each leak event chipped away at my confidence to the extent where I was becoming reluctant to go out. 

Getting “back to normal” after stoma surgery

Part of regaining my confidence and my new normal, was recognising the need to carry spare bags in case of emergency. I made myself a number of packs and carried them when out and when attending Bradford City games, home and away. By Christmas 2023 I had an array of emergency packs and pack-packs to carry them in.  

Like a lot of ostomates, I’ve had changes in prescription due to hernia development, stoma size change, bag and adhesive change etc. This left me with lots of “spares” which, I was surprised to find, couldn’t be returned… I was told to throw them away! 

So I decided to pull the spares together with some barrier strips, hygienic wipes and rings into small ‘emergency stoma packs’, leave them at accessible toilets at larger venues and also in smaller venues I visited regularly. I’ve also left them at football grounds I’ve visited as an away supporter. 

While some large venues explained that anything unauthorised has to be removed from their facilities, I continue to push for the kits to be accepted around the region. One outlet, Eldon Square Shopping Centre in Newcastle, explained that they’d love to be involved in an initiative but there had to be certain governance conditions – i.e. the packs need to be supplied by a recognised manufacturer. So I got in touch with all the major suppliers. Two have come back expressing an interest, with one pointing out that they have developed similar packs for a town council in Wales. I’ve put them in touch with Eldon Square, so we’ll see where that goes.

Emergency stoma pack feedback from users 

I wasn’t sure whether I had discovered a solution to a problem which didn’t actually exist, so I put it out across social media and shared what I was doing across stoma groups. The response has been overwhelming. Zero negative comments. Everything super positive. Offers of spare equipment. Some responses were quite surprising: 

• “My first trip to the pub post operation and it was a really nice surprise to see these. Amazing work!”

• “To be honest I was proper nervous going out. I ended up taking the car and keeping my stoma supplies in the car. Seeing the pack gave me comfort in knowing that I ever got stuck I’d be able to patch myself up. Wish everywhere had them!” 

The packs are NOT designed to be a “proper” change. Think of them as a space saver wheel. Designed to get you home, nothing more. 

The local BBC News picked up the story and did a piece on me delivering packs. Hopefully this will gain some wider traction. I’ll keep you informed! 

You can follow Andrew on Facebook and Instagram.