Hi All,

I recently spent a week trekking up Mount Kilimanjaro in Africa. Some of my fellow trekkers encouraged me to write up a short account and share it with other pouchers. In case you're interested, please see below.

John

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Trekking up Kilimanjaro with IBD

Intro

I'm 43, was diagnosed with Colitis when I was 21, had a colectomy the same year and Ileo-anal Pouch surgery the year after. Yes, my pouch is now 21 years old. Over the years I've had a few bowel obstructions (ouch), anal strictures, a peri-anal abscess (a major pain in the a**e), fistula with seton and some level of chronic pouchitis. However, for the most part I'm amazed how good my pouch has been, only recently has the pouchitis got me questioning the future of my pouch.

So, my brother decided to trek up Africa’s highest mountain, Mount Kilimanjaro in Tanzania and in a rash moment I agreed to join him. It's a serious trek - 7 days on the mountain, with a summit at 5900m (around 19000 feet) where altitude sickness is a common problem. I was partly encouraged by another team member who has Crohns.

Shortly after agreeing to it, I had a pouchoscopy that showed "severe inflammation and ulcers". I went through numerous cycles of thinking "what the hell am I doing?", "it'll be fine, lots of people do it", "I'm in no state to be doing this" etc. I told my surgeon of my plans and he laughed out loud, saying that he wouldn't do it, even without a pouch, but as long as I didn't prioritise making it to the summit over looking after my health, he didn't object.

My main concerns were - having a major pouchitis flare-up, getting gastroenteritis and getting dehydrated. To address this, I took along antibiotics and steroid suppositories for my pouchitis, antibacterial hand gel to keep the bugs at bay, incontinence pads for nighttime leakage and lots of water bottles with electrolyte tablets and rehydration powders for my hydration.

I booked my travel insurance with a company who specialise in high-altitude treks and another who agreed to cover me for my pre-existing medical conditions (after a certain amount of back and forth - they hadn't heard of pouchitis before).

The Trek

It was great to meet up with the rest of the group and finally start the trek after months of build-up. My first issue arrived at the first nights camp when I came to use the infamous "long-drop" toilet - a wooden hut with a squat toilet over a hole, full of you-know-what. The smell was pretty horrific, but my problem was emptying my pouch - it's a long time since I used a squat toilet and what I hadn't anticipated is how difficult it was for me now to empty my pouch in the squat position. I knew if I couldn't empty the pouch properly it would probably cause increasing pouchitis. There wasn't a lot of scope for practising my usual "toilet yoga" techniques on account of not being able to shift balance or hold on to anything (the sides of the hut were beyond reach). After consideration back in my tent, I tried again using my hiking poles, which could reach the sides - this was a very precarious procedure. Eventually, going back in the middle of the night, when I could spend as long as I wanted there, I discovered a squatting / standing up / squatting routine that seemed to work. Few, what a relief.

Fortunately the toilets at subsequent camps were in much smaller huts and pushing/pulling against the walls made things somewhat easier, though still not easy. I actually came to enjoy the challenge of my middle-of-the-night toilet visits - the getting myself out of my sleeping bag into some clothes/boots, across the cold, dark, boulder strewn ground to the stinky hut, trying not to fall over or drop my toilet paper etc. I had some good laughs to myself and a couple of times got to experience the mountain all to myself under some incredible star strewn skies with views up and down the mountain. See attached photo: “toilet with a view” was a particular favourite -

During the hiking, our guides kept reminding us to hydrate. I had expected to drink a lot more than the others due to my lack of colon, but in the end I only seemed to need a little more than them, drinking usually 2 to 3 litres during the days hiking (+ another 1 litre in camp). My personal theory is that over the years, my body has adapted to somehow use water more efficiently.

I am lucky in that I don't have to limit my diet too much and I lucked out on the mountain - it was pretty much what I would have chosen given the choice - porridge and banana for breakfast, fried chicken legs and boiled eggs for lunch, popcorn to snack and rice and stew for dinner. I hardly needed my snack bars.

After 5 days of hiking from 2000m up to 4700m (including a couple of challenging 10 hour days) we arrived at summit camp. After a short sleep, we set off at midnight for our attempt on the summit (this was to be a 12 hour hike, up and back down before a further 4 hour hike down to the next camp). I and a couple of the others had already felt the effects of the altitude on days 3 and 4 and had taken medication called Diamox to help with our oxygen saturation levels. Our guide had an oximeter to measure our levels and mine was consistently the lowest in the group (I'm blaming my chronic inflammatory conditions, but I don't know whether that's the reason). After a couple of hours into the summit hike, I was just below 5000m and experiencing significant dizziness and headaches and my oxygen level was sufficiently low that it was decided I should turn back (to avoid the risk of much more serious conditions)

I was surprised that my pouchitis caused me no real direct problems and in the end it was the altitude that did for me (as it does for so many). I was somewhat disappointed not to share the summit experience with the others, but after spending some time chilling out, enjoying the view from summit camp and then hearing the stories of my fellow hikers "brutal" experiences reaching the top, I wasn't too upset. On reflection, I can be pleased I made it as far as I did.

It was a unique experience, a great opportunity to spend time with a small group of fellow hikers and local guides, away from everyday life, enjoying the superb mountain scenery. I'd recommend it to anyone tempted by adventure and up for a serious challenge. And a good way to raise some funds for Crohns and Colitis research!