Travelling with colitis: my story
Travelling with colitis can be difficult. Depending on the person’s personal journey, even simple things like leaving familiar places can be daunting, so travelling abroad or going to new regions can feel insurmountable.
I was diagnosed with inflammatory bowel disease (or colitis) in December 2021. In 2023, I then went backpacking through South America and South-East Asia. Therefore, I wanted to share my experience of the disease, as well as how it’s affected me whilst travelling, with you all.
I hope this account adds some more shade to the topic!
What’s Inflammatory Bowel Disease?
Inflammatory Bowel Disease, or IBD for short, is a catch-all term for chronic inflammation of the digestive system.
There are two main forms of IBD: Crohn’s Disease and Ulcerative Colitis. What’s the difference? Crohn’s can affect any part of the gut, whilst Ulcerative Colitis mainly affects the bowels. The treatment for both of them is the same though. I have indeterminate colitis, where it has features of both types of the disease, so I normally refer to them both under the umbrella terms of IBD or colitis.
IBD is one of those diseases that a lot of people have but nobody talk about. 1 in 123 people in the UK are estimated to have it – that’s over 500,000 people!
However, because some of the main symptoms are constipation and diarrhoea, it’s somewhat ignored; just like anything to do with poop is, unless it’s in a comedic sense. I don’t normally talk about it as the symptoms feel embarrassing to discuss outside of my close family.
More recently there has been a flush of young women discussing their experiences with colitis – particularly with a stoma bag. I love to see this and find it super inspiring.
My diagnosis story
Before I even thought about going backpacking, I was diagnosed with IBD. I’ll start at the very beginning of my relationship with colitis!
From early 2020, I noticed blood in my poop – one of the primary indicators of someone having IBD. I brought this up to my GP in September that year but she told me to wait a few months to see if it stopped.
Fast forward a few months and I began to suffer from constipation. I looked at my diet and increased my fibre intake – and immediately began to suffer from diarrhoea. I couldn’t understand it and went to my GP at university in response.
The GP was lovely and referred me for a blood test, telling me I had a tear. She advised me to eat more fibre and drink more water so that it could heal.
Was there any change? Nope!
At this stage, I was in my final couple of terms at uni and was having to go to the toilet so regularly, it was becoming a hindrance. I was often worried about where and when I’d be able to go to the toilet. It was super embarrassing, particularly in social situations.
Festivals with IBD
In the summer of 2021, I graduated from university and moved back home. I had a couple of festivals planned and was super nervous as I knew that toilets would be limited.
I went back to my GP at home to ask for advice. After explaining my situation, the GP advised me I probably had Irritable Bowel Syndrome (IBS – completely different to IBD, even though they sound the same!) and told me to take Imodium. He referred me to a nutritionist but generally was derisive of what I told him.
Thus, I headed to Boardmasters and Isle of Wight armed with plenty of Imodium, knickers and incontinence pads – an embarrassing but necessary combination. Fortunately I got through Boardmasters okay, albeit with many midnight trips to the toilet.
The problems arrived at the Isle of Wight Festival in September.
Isle of Wight Festival
I was still a little nervous for attending the Isle of Wight Festival that September. But I was also hopeful as I had more experience with festival-going at this point.
Unfortunately, however, everything went wrong – at least with respect to my bowels…
I was volunteering with Oxfam (a great way to go to festivals by the way!). On my final shift with them I noticed my legs were going a bit weird. I don’t know what triggered it; perhaps all the standing up at my shift? All I know is, during my evening break, I sat down and could barely get up again, my joints were so stiff. The walk back to the campsite after my shift took me more than twice as long as it had the night before. Getting into the tent was agony as I couldn’t bend my knees down to unzip the door.
The next day my legs were so difficult to move that I deposited myself in front of the main stage and stayed there all afternoon. I couldn’t get up and down without help. To sit down in the first place, I had to crash land into my sister’s arms! I was so glad that my belly was settled that afternoon, or I would’ve had major problems.
Anyway, it was so hard to move that I ended up leaving the festival a day early to stay in the caravan we’d booked nearby for the next few days. I had an awful flare up for the few days after that, which, paired with my legs, made everything painful.
My joints ached for weeks after that. I have no idea to what extent it was IBD-related, but I know that colitis is related to joint pain. Since my later diagnosis I haven’t had any problems and I’ve been able to do some incredibly tough things, like hiking the Ciudad Perdida trek in Colombia and climbing volcanoes in Ecuador, so I don’t really know what happened.
Arriving at a diagnosis
My appointment with the nutritionist came in November 2021, three months after I spoke with the GP. After having tried the FODMAP diet since the summer with no success, it was great to speak to a specialist – although straight after my appointment I was referred for another blood and stool test. It seemed like maybe someone wasn’t convinced IBS was to blame!
The stool test came back, and the GP told me I’d need a colonoscopy to check for inflammation. NHS waiting lists were super long and there was no timeline for when I would receive this. I was lucky that I had private medical insurance, so I could go private for the colonoscopy. I couldn’t stomach waiting months for an appointment when I felt so awful.
Going private meant that I had an initial consultant appointment, colonoscopy and diagnosis within a week, with medication prescribed and given to me the same day. The medication they gave me – mesalazine – did the trick. Within weeks my symptoms improved remarkably. I called that medication my ‘magic tablets’ as it worked so well, and I am still on them today.
Preparing to go backpacking
In late 2022 I decided to go backpacking, taking most of 2023 to travel to some of the places I’d always wanted to go.
As travelling the world was something I’d always wanted to do, I wasn’t going to let colitis put me off. I wasn’t having any symptoms and blood tests showed my inflammation was down, so from a medical point of view I could do whatever I wanted.
The bigger problems were logistical. My backpack was 40 litres (the same size as a cabin bag) and I was travelling for four months at a time, so needed to take all the medication I needed with me. The four boxes I took weighed over a kilo! When we travelled with cabin luggage in South America with a 7 kg allowance, this was especially problematic.
Even organising to collect the medication was difficult, as the NHS limits how many months of prescription medication you can receive in one go.
Backpacking with colitis
During my time backpacking, I generally didn’t have any issues with my colitis.
I had one flare up whilst we were in Ecuador, back in March. I wasn’t the craziest about Ecuador and had a rocky start to the country, with a delayed flight and not the best picture of Quito (its capital). Whilst we were in Mindo I had a flare up, which continued through until Canoa, a town on the coast.
However, to be honest, everything went a little wrong in terms of my health in that first week in Ecuador: I already wasn’t feeling great and was more stressed than I had been in previous weeks of the trip, given the poorly advertised bus system and the reduction in safety compared to our previous country (Bolivia). My sister also wasn’t feeling so great, so maybe there was something up with the lack of sleep and changes to diet. I’m not surprised I had a flare up when I did.
It got worse in Canoa too, when I got the worst sunburn I’ve ever had!
To deal with it, I began to take a double dose of my medication, which normally works well if I feel a little flare up coming along. Backpacking, this was a slight problem as I had only taken a couple of weeks’ spare medication with me, so there was the risk I would run out. My mother kindly went to the GP to get me a prescription so that I could go to an Ecuadorian clinic to see if they had it, but given we stuck mainly to rural areas in the country, I never had the chance to make use of it – and fortunately I didn’t need to!
Changes to medication
Towards the end of 2024, just under a year after I returned from travelling, unfortunately I had another flare up. I moved onto a different medication, infliximab, which is administered by a drip and meant long trips to the hospital but did the trick.
Soon I’ll be moving to a different drug, adalimumab, which is administered by injection every two weeks. I hear that it has a little travel pouch to keep it cool when travelling; this will be interesting to test out!
Conclusion
Although getting a diagnosis for my colitis was bumpy, I was lucky that I responded well to my first treatment and had minimal problems during my travel break.
Colitis definitely shouldn’t be a barrier from anyone travelling, whether that’s visiting a new country, going to festivals, or exploring what’s on your doorstep. It can be difficult to manage, particularly when you don’t know where toilet facilities are.
I hope this account of my personal experience with IBD whilst travelling has been interesting for you. Thanks for reading!
