Whilst in lock down I have used some of my time productively and finished some scrapbooks! I love looking through old photos and memorabilia and hope one day I can sit down with my children and show them all our adventures. Not only does my scrapbooks show me all my adventures it also shows me how far I have come from when I was first diagnosed with Ulcerative Colitis, and some very embarrassing moments.
I LOVE travelling, exploring different cities, lying on a beach and trying different things and I have never let my Colitis ruin this for me. Though times it has been hard and interfered a lot, but I am so grateful now with my stoma I can actually enjoy going on holiday again.
Travelling with Colitis is the most stressful thing ever, from the journey to the airport with 10 toilet stops, to the flight, foreign food, excursion days, museums. I could never really relax. Sometimes trips went well and my Colitis backed off a bit luckily, but others have been a nightmare. My first holiday with Connor was to Rome, and I must admit my Colitis was on its best behavior all weekend, the only thing that bothered me was fatigue that weekend, but we pushed through and it was worth it!
The next holiday we went on was a little bit different. The day before we were due to fly out to Krakow for the Christmas markets, I had an appointment with my Gastroenterologist, who wanted to admit me, but I really wanted to go on holiday.. so off I went with my extra case full of new medication. I spent the whole weekend searching for toilets, tired, and all in all really not very well. We tried to say we wouldn’t let it spoil the weekend, so we still managed to go to explore the salt mines, and even managed to make it to Auschwitz, after a very rough bus journey. We were the first people on the bus, and we had a couple more pick-ups along the way. Our driver wasn’t the most accommodating and wouldn’t let me get off to use the toilet, but after some sort of miracle I actually held it in till we got there. We enjoyed some excellent food, but often headed right back to the hotel after so didn’t explore the nightlife. Krakow, was then on our list to head back to when I was feeling well.
Early on in my Colitis life my family and I spent Christmas in New York, followed by a weeks cruise around the Bahamas. Paradise. I can remember New York being absolutely amazing, especially through Christmas as it was so magical, but it was a nightmare for public toilets! I spent the majority of the holiday running in to restaurants and hotels and half of the Christmas Rockette show in the toilet. One of the most frustrating things I can remember was breakfast time, I never ate breakfast in hope that I wouldn’t need the toilet through the day, so my family always used to have some amazing looking bagels from a little cafe by our hotel and I never got to experience one. I promised myself I would go back one day to experience the whole city again, and try to find that bagel shop.
So, in 2019 I took Connor as a surprise Christmas present (spoiler: I never found the bagel shop).
When Connor and I went to New York, we didn’t know it at the time but when we got home it was only two weeks before I had to be admitted for my ileostomy surgery. This highlights the fact I was in a massive flare up. So my second time in the city that never sleeps and I was suffering with massive fatigue, going to the toilet around 15 times a day, blood loss and just generally unwell. Great.
New York with a major Colitis flare up was an experience. I am a massive foodie, and New York has so much to offer, I knew once I ate I would need the toilet, so this made it hard and I did miss out. For breakfasts (just like the first trip) I wouldn’t eat that much so it didn’t ruin the day, I hardly ate at dinner whilst we were out and about, and after tea we would have to sit and wait until the initial ‘rush’ passed. By initial rush I actually mean about 5 shits. I had to sit out of half the Broadway show, whilst Connor sat and watched Pretty Woman on his own, and there was definitely one point where I wasn’t sure if I would make it across Brooklyn Bridge without having to squat and probably get arrested by one of the little bridge police cars. (If you’ve been you will know what i’m going on about, if not, google it).
The worst thing about travelling with Colitis is airports and flights. After being to some absolutely awful airport toilets (Egypt), to long airport security lines its then time for the hour (at least) long boarding and taxiing which without fail every time had me in a lather of sweat crying to Connor telling him I can’t hold it in any longer and i’m going to shit myself just before take-off. Just to clarify, I never actually did, but it is the worst feeling in the world. Thankfully now i’m just crying and sweating because I hate flying and it’s got nothing to do with me needing the toilet. I thankfully never had an accident whilst on a plane, only came close.
Handy tip for anyone travelling with an invisible illness is to go to the information desk and ask for an invisible illness lanyard! They are brilliant, a simple lanyard you wear round your neck (it’s got sunflowers on it too so it doesn’t look hideous) which highlights to airport staff you may need to go through the priority security or have a bit of extra help. I found out about this lanyard after once getting to the front of the security queue, about to get searched and the sudden urgency hit me like a brick. I had to run to a member of staff and explain quickly, I needed the toilet urgently, and I mean urgently or else.. and he kindly escorted me to a quick access toilet. After this debacle I never travel without my lanyard, it even helped us get through a three hour immigration queue at JFK airport and is really handy now with my stoma as it highlights I will be carrying medication and medical supplies.
New York was my last holiday with active colitis and no ileostomy, and looking back I honestly don’t know how I dealt with it and how I did everything I did. People always say to me how much of a fighter I am and can’t believe how much I have had to deal with, I never actually realise how much I went through and how much it affected my life until I look back on everything. I just look forward to my future plans, and i’m extremely grateful that our next trip, which is travelling India, is occurring now I have a stoma and not active Colitis. I couldn’t even bear to imagine Delhi Belly mixed with Colitis, at least now I won’t have to worry about what hand I’m eating with and using some dodgy toilets, or should I just say a hole in the ground, and with that image i’ll leave you.