Life with a colostomy bag – by Reader Katie Boylan

Today’s post is by Happy Magazine Reader Katie Boylan. Katie writes about life with a stoma after her colon cancer diagnosis in 2017 and tells us how she’s learned to love her colostomy bag.

In February 2017 I was diagnosed with stage 2/3 colon cancer and was told that there was a 15 cm tumour living and growing in the base of my colon.

I was 35.

I never smoked, I wasn’t overweight, I ate well, I walked every day, I did yoga and I was very fit. My only vice was alcohol, but even then I didn’t drink any more than any of my friends, so to say it was a shock is an understatement. I got another shock in April of that year when the tumour perforated my bowel and I ended up with a stoma and a colostomy bag. A stoma is an opening in my stomach which allows the waste from my colon to divert into the bag and will allow my colon to heal.

I was told it was temporary, fully reversible and most people need them after surgery to remove a colon tumour, I was just unlucky that I needed it pre-surgery so would have it for at least a year.

But even still I was devastated. I took it really bad. I wanted to scream – YOU WANT ME TO POO INTO A BAG AND CARRY IT AROUND WITH ME? I had visions of carrying around a handbag of poo. Nobody I knew had a ‘bag’. At my age, ‘bags for life’ are things you use for your shopping, not to poo into! The stoma nurses in the hospital were amazing and tried to reassure me but all the literature was covered with images of people much older than me dealing with a bag. There was not one picture or image of a person even close to my age going through this. I felt so isolated and scared.

After the surgery I was so nervous. Nervous to eat, scared to leave my house, scared people would smell it (you can’t), that people might see it or notice it under my clothes (you can’t), scared to exercise, scared to be anywhere far from a toilet. I didn’t tell a soul bar my family and I didn’t want anyone knowing. I felt dirty and strange and felt people would judge me (they didn’t!). I shut myself off from all of my friends – I didn’t want to go anywhere, see anyone or do anything.

Slowly, I told my friends and they were amazing, they didn’t make me feel weird or different or act shocked. One replied, ‘Oh, my brother in law has one’, another told me her friend had one a few years ago, another’s Granny had one; another presumed I would be getting one with everything I was going through.  Slowly I realised it was ok to talk about it, nobody judged me, they just wanted to support me and help me.

You’re always told not to Google anything when you are sick but in fact I found the internet a huge help and source of information about my bag and what to do. I began to research more and more and found loads of young people bravely showing off their colostomy bags to combat the stigma around them. There was even a hashtag # on Instagram trying to inspire people to show off their bags. Seeing people my age and younger was a brilliant comfort and I also found tips on dealing with it and what to eat/not eat. There are a good few foods you need to avoid with a bag so I did have to make changes in my diet, but again online support groups were great for information on this. Mushrooms, tomatoes, sweetcorn, mango, pineapple, popcorn are all a big no-no. As are nuts and any raw food like scallions, lettuce etc. I also have to skin all my fruit and vegetables.

Fast forward a year and a half and I still have my bag. They are doing a reversal surgery for me hopefully in a few months but now I look at ‘Freddy’ (my nickname for the bag) with great pride and love. You see, Freddy saved my life and he’s a symbol of what I had to put up with and the strength I had to find deep inside to beat cancer. I no longer am afraid to talk about him and will talk about him openly, I’ve even showed him to complete strangers! I love him.

Now don’t get me wrong, I had some dark days with Freddy. He leaked once at night time so I woke up covered in my poo (nice) and my mum had to help me and it projectile poo’ed all over her! I am not exaggerating and I think that was my all-time low moment in my cancer journey. Another time it leaked as we arrived at Kelly’s Hotel in Wexford for a ‘relaxing weekend away’ before my surgery – there was nothing relaxing about that moment!

I thought Freddy would limit my life and what I can do but he only has slightly. At the start I was reading online and in the hospital literature that people led normal lives, played sport, socialised, had relationships but I felt so far from this. However in the last six months I’ve gone back to yoga, I went to a health spa, I went on a sun holiday with my mum and I started running and exercising again. When I got Freddy, all of these things seemed so far out of my reach and it took me a while to realise they were possible with a colostomy bag. Bar a few leaks and one blockage overall, Freddy has been well-behaved. 

I had my fourth cancer-free scan in December 2018 and I realise now that I would not have beaten cancer without Freddy. 

Thank you so much Katie for sharing your story here. Katie’s Instagam is @kt_boylan if anyone wants to follow her journey or get in touch.