Last updated: October 2023
I have been reading others’ accounts about their Crohn's experiences, and I feel lucky on so many levels. Six years ago my diagnosis was irritable bowel syndrome (IBS), then a year later I got an unwelcome ‘upgrade’ to Crohn's disease.
Staying positive despite my condition
So, I have gotten lucky twice. First, I have a super-duper consultant who sits and listens with gentle prompts, and he has a great team around him. I also feel so fortunate about the age at which I was diagnosed. I will be 80 next year. I have got away with it until after I retired and children were grown up and independent.
I started on monoclonal antibodies, Humira. That was great for 18 months, then I was on Entyvio for another 18 months, and now I've been on Stelera for the past 10 months. So far so good.
An accident abroad
It always bothered me when I didn’t know where there was a decent toilet. During COVID-19 that wasn’t a problem while I was at home, but last October we ventured to Scotland to visit relatives. On our way back, we stopped at a wonderful restaurant tucked away in the Scottish Highlands. I was careful what I ate but had to make a fast trip to the toilet before we left. Then, 15 minutes later on the Moorland Road South, we had to pull over onto the grassy verge where my guts emptied themselves.
Many years ago traveling with my grandparents, my Grandpa would pull over and help my Grandma out to sit on the running board of the old Ford to do what she had to do. This came to mind as I squatted by the car and the sheep stopped grazing to looked on curiously.
My Crohn's had come back with a vengeance! We had to make our way back south, judging the distance between motorway services so I knew how long to hang on. We got back with only small accidents on the way, and I was glad we carried an emergency poop bag in the car.
A very scary flare
I had two days of continuous diarrhea with all the trimmings, mucus, blood, etc. Luckily, I got seen in clinic quickly. Then two days later I was admitted to the hospital for six days. I got more drips and infusions, then I was sent home on Stelera.
Hoping this will be my third time getting lucky and that this medication is the one for me, but time is not on my side. I want to travel again, and having been brave once, I had a long talk with my husband about our options.
Crohn's won't stop me from seeing the world
When I found a travel insurance company who would take me on, given my age and medical history, we booked a flight to Toronto and a camper van with all mod cons at the other end for eight weeks. It was so worth it, and now we are broke but happy! I’d had some fairly minor accidents, but with our self contained catering and transport it was no big deal.
Prior to our flights I went on to a liquid diet of Complan and just ate small amounts on the plane, and that worked well. Customs were OK. I had all my prescriptions and a letter from the hospital together with my injection in a small cool bag with ice packs, and this went straight in the fridge of our camper.
What I’ve learned from this is that I’m still boss, even though my body sometimes lets me down. I’ve learned to listen to it, and it helped me to trust myself. People around me are helpful. I don’t go into any great detail, but I’ve learned to say enough to get me through. If any more opportunities come along I will say "yes" because I still want to push myself and do what I can.
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