I am an energetic, enthusiastic and ambitious young woman, embracing her life with an ostomy bag and free from the pain of Ulcerative Colitis. For 14 years I suffered from crippling pain, fatigue and constant diarrhoea, battling to get through every day. I lived in fear of surgery and life with a stoma, I thought it would make me feel undesirable and disgusting and, for a long time, thought I would rather die. But last year I ran out of options and had a subtotal ileostomy, leaving me with a temporary ostomy bag. I immediately felt like a new woman. I was suddenly able to do what I wanted when I wanted instead of having my life ruled by my dodgy bowel, which often left me unable to leave the house.
I embraced life and started a bucket list called 101 adventures of the bag lady, and have travelled all over the country and even gone abroad unhindered by my condition thanks to my stoma. But I still was far from 100% well. I was still in some pain as the remaining rectal stump was still very inflamed and diseased, leaving me with two ostomy bags, one for a mucus fistula which constantly pumped out blood and yucky stuff.
In March this year I decided enough was enough and had my stoma made permanent. Now two operations later me and Winnie (my stoma) are inseparable. At times we have a love hate relationship, but I really wouldn’t be without her. I am excited about what lies ahead.
The first time I went abroad after my surgery I was terrified. I spent days before the trip to Italy panicking that I hadn’t packed enough appliances; I wouldn’t be allowed on the plane; my bag would explode mid-flight or that I would simply fall horrendously ill while so far away from home. I guess I’d spent too much time on the internet for my own good. I’d read horror stories about people with stomas being treated like terrorists at security and old ladies being thrown off planes for carrying ostomy supplies. So by the time I got to airport security I was a nervous wreck and looking generally like I had something to hide.
That’s probably why I ended up being searched. For the next 15 minutes I felt like a criminal. I was patted down by a very severe looking woman, who seemed to be determined to find a hidden stash of drugs stuffed god knows where on my tiny post-surgery frame. But instead of being faced with a drug mule with a stomach stuffed with cocaine, she found a very frightened and embarrassed young woman who had recently had ostomy surgery.
Thankfully as she started to pat me down I chirped up and told her about my ostomy bag and that she would be able to feel it under my shirt. She was incredibly sympathetic, but at the time I couldn’t help but feel like a criminal when I had to sit in a chair and remove my shoes, before being taken into a curtained off room for a ‘private’ inspection – which is nowhere near as ominous as it sounds.
Yes, she did see my bag, and yes she scanned it to check if I was smuggling drugs in it, and yes my bag chose that exact moment to start working and filling up with gas, but I made it onto the plane without any problems, my supplies made it through security and I didn’t even need the doctor’s note or pass supplied by my delivery company (explaining in several languages about my need to carry the supplies). For all my worrying the experience ended up not being that bad. It was the best flight I have ever been on, mostly because of my ostomy bag. Travelling with Winnie (my ostomy) was a breeze compared to all the trips I’d gone on with my Ulcerative Colitis making me race to the toilet every five minutes. I avoided fizzy pop so that my bag wouldn’t fill up with gas, and tried to drink lots of water to stay hydrated, but for all my fears of exploding bags I only had to empty my bag once during the two hour flight.
Exploring Venice and then travelling to Florence and Rome by train was an incredibly freeing feeling. I’d been so frightened of travelling far from home but nothing went wrong, and I got to experience so many incredible things, from riding in a Gondola to exploring the Coliseum – it was breathtaking. Since the trip I have travelled up and down the country with complete freedom I could never have dreamed of without my surgery. My partner and I are now planning a trip to Florida to go to Universal Studios, and I couldn’t be more excited.
So if you’re dreaming of going abroad and have an ostomy ask yourself what’s stopping you? If it’s fear of getting on a plane, the worst that can happen is you get checked in security. I suffered from Ulcerative Colitis for 14 years and still managed long haul flights – ok I spent 90% of the time on the toilet and was in agony. Your ostomy is your ticket to freedom. Why should you be forced to stay in one country due to fear – I’d love to go into space with mine!
But if you are still worried here are some tips I found helpful for my big trip abroad, and for short trips around the UK:
*Separate your spare ostomy bags and other supplies between your hand luggage and cabin bag
*Pack far more supplies than you need – 2 bags a day if you are worried about leaks and at least two sprays.
*If you carry an adhesive remover spray in your carry-on bag put it in a see through plastic bag, with all other sprays perfumes and lotions to go through security – might be a good idea to take wipes as well or instead.
*Put any bag cutting scissors in your hold case – they won’t get through security.
*Ask your GP or consultant for a note explaining your medical condition saying that you need to carry medical condition on the plane – this is free and will get you through security or on the flight if there are any problems.
*Change your bag before you get on the plane so that you don’t worry about it – and use the secure tabs to add extra protection just in case.
*Get a special travel card from your ostomy suppliers – they will send it to you and it is in several different languages – Charter do a great one that you get your GP to sign and it will help you get on the plane.
*Be honest at security – if you get pulled aside tell them discreetly but up front that you have a bag – it will be ok, trust me.
*Finally relax! Enjoy the flight and don’t drink any fizzy pop until after the flight.
AL/1771/08.14/0.001. Date of preparation: August 2014.