What it's really like hiking with Crohn's Disease [guest post]

Are you a hiker or backpacker who’s also living with chronic illness? If so you’re definitely not alone! We’ve had some great discussions over in the Facebook Group about managing various conditions and symptoms on trail. This inspired me to invite group member Elyssa to write the following guest post. Elyssa is an experienced hiker with Crohn’s Disease who recently completed her first overnight hut trip. I really respect the courage it must have taken to pull this off! I also love how honest she is about the ups and downs of this experience. Enjoy, and please comment below if you have inspiration or tips to share.

Cheers, Sarah xx

Living (and hiking) with Crohn’s Disease

It was just a few weeks after my fifteenth birthday that I was diagnosed with Crohn’s Disease. Thankfully, due to a family history of the disease, my diagnosis was rapid. I was luckier than many. It took less than three months after the first onset of my symptoms to reach the diagnosis. Alarmingly, when they made the diagnosis, they also found that I had several pre-cancerous polyps in my digestive tract, the likes of which doctors had never previously seen in someone under the age of fifty. It was this combination of discoveries that led to much of the continued monitoring I have experienced since then.

Crohn’s Disease is classified as an autoimmune inflammatory bowel disease. Essentially, my body thinks it needs to fight off something bad, but it is attacking healthy cells. The cells being “attacked” can lie anywhere along the digestive tract for somebody suffering from Crohn’s Disease. Patients can experience “flare ups” or active disease symptoms followed by periods of remission, when the disease is laying somewhat dormant.

Many Crohn’s patients struggle with absorbing nutrients from food, which generally manifests as conditions like anemia.  My gastroenterologist (let’s call him GI Joe, which I often do since his first name is actually Joseph!) does routine blood tests to monitor any vitamin deficiencies that I have. Through the years, GI Joe has also helped me with my own anemia as well as my arthritis. “Crohn’s induced arthritis” is another common problem that occurs with Crohn’s patients.

The combination of Crohn’s, anemia, and arthritis can make it difficult to do high-intensity activities. When I was in high school, I ended up having to withdraw from field hockey and dance because the strenuous practices were breaking me out of my very fragile, not-yet-remission state into a full-on flare up.

I remember how sick I felt during that time. I could barely keep any food down and had to sleep most of the day. I started to see food as the enemy, since I could easily see the cause and effect between eating and the pain I experienced.

Eventually, in time, I felt well. It took staying away from high-intensity sports throughout the remainder of high school and a regimen of 10+ horse pills each day that would frequently make me vomit almost immediately. I had a few minor flare-ups in college that were swiftly handled. I experienced almost 10 years of remission.

This past summer, my symptoms flared up again. The problem was that this corresponded with my first-ever hut hike.

Elyssa climbing her first 4000-footer in the White Mountains, New Hampshire

An overnight hiking challenge

For years now, I have had a goal to hike all 48 of the 4,000-footers in New Hampshire. I completed several of them in college but had not worked toward the goal in recent years on account of hiking in other states.

A year ago, I decided to revisit my bucket list and set a goal to complete three of these hikes during the summer. After doing a day hike to cross one of the mountains off my list with a friend and my dog, I was even more eager for the next trip I had planned — an overnight hike staying at an AMC hut.

In the northeast, there is a system of huts managed by the Appalachian Mountain Club. You can make reservations there in season, and they give you a bunk in a shared bunk room, cook you a multi-course hot dinner, AND cook you a hot breakfast to get you ready to continue your hike the following day. Because it provides some basic comforts, it seemed like a really good gateway trip for me to see if I would like the whole “backpacking” experience.

For this occasion, my friend Liz and I went out and bought overnight hiking bags, planned our packing list, and became increasingly excited.

A few weeks prior to the trip, I became so sick that I had to go in for an emergency GI Joe appointment, my first in many years. The doctor prescribed medicines to try to help manage the intense symptoms I was experiencing, and of course, prescribed rest and water.

He also scheduled me for a colonoscopy a couple days after the trip. I would literally be starting the colonoscopy prep (clear liquid diet plus laxatives) the morning after I returned home.  

As the trip approached, I really wondered if I would be able to go through with it. What if something happened to me so far from civilization? But on the other hand, what if this turned out to be nothing, and I cancelled a trip that my friend and I were so excited about for nothing?

I decided to let my friend know what was going on, but I still planned to do the trip. What’s the worst that could happen? I thought.  I may just need to stop more than I normally would have on the way up.

The week before the trip, I struggled to find any snacks I would be able to hike with. Not only did I have the Crohn’s flare-up diet to contend with (no dairy, low residue), but I also have a low acidity diet due to other GI problems, AND I am a vegetarian by choice. Most typical trail snacks were eliminated as options due to one of the three diets I was on.

I ended up finding a few options that probably weighed more than my snacks should, but I felt elated. One more obstacle had been crossed.

Elyssa hiking in Sao Miguel, Azores, Portugal

Elyssa with her favorite hiking buddy

Step by step to the summit

Our first day consisted of hiking up to the hut. The hut we were staying at was nearly at the summit of one of our 4,000-footers, but we wouldn’t be visiting that peak until day two.

The hike was steep, but rather pleasant the whole way up. I felt like my energy levels were much lower than they had been in the past when I’ve hiked, but Liz was a good sport and would stop and wait with me whenever I needed breaks.

As each hour and mile passed, I started to have more confidence in my abilities and my body. I started to think that everything would work out fine.  

We ate an incredible dinner at nearly 4,000 feet. I wish I could tell you that I didn’t feel sick during this trip, but I can’t. I woke up many times during the night curled over in pain. Some of the times I couldn’t fall back to sleep because of my anxiety. What if the symptoms were this bad during my hike down?

I tried to silently walk down the ladder of my bunk and past the four other sleeping hikers in my room each time I went to the bathroom during the night with my headlamp as my guide. As the hours passed, I worried that my lack of sleep would lead me to be exhausted to a point of not making it back down the mountain.

After a filling breakfast that actually did not violate any of my current diets, we began our trek to the first peak of the day. Although the same cannot be said for every 4,000-footer in New Hampshire, this particular mountain had gorgeous 360 views along the Appalachian Trail. We paused at the first summit to enjoy the view, have a few snacks, and play with some puppies who were there.

It was in this moment that I knew I would make it through the hike. I always feel most like myself when I am hiking. It was at this summit that I remembered my confidence the day before and was rejuvenated in my faith in myself.

We made our way along the steep and windy AT to our second summit of the day before we started our long descent. We returned to the car exhausted but exhilarated.

I am proud that I pushed myself outside of my comfort zone by doing an overnight hike (even if it is a bit like staying in the Ritz as far as hiking goes).

I don’t see myself as the foremost expert on Crohn’s, since I been extremely fortunate throughout my diagnosis with a fairly mild case. I am grateful every day for this.

Elyssa and her friend Liz on their hut trip in the White Mountains, New Hampshire

Tips for hiking with a chronic illness

If you are struggling with a chronic illness or are about to hike with someone who is, here are some thoughts I have:

• Know your limits. It’s OK to cancel the trip if you really aren’t going to make it through. I do recommend discussing any change in your activity level, especially doing any sort of backpacking trip, with your medical professionals. There are inherent risks in general with being in the backwoods. Those risks increase when you have an existing medical condition.

• Communicate. Let your hiking companion know about your condition, about all medication you are carrying with you, and how you’re feeling. If, for whatever reason, you are unable to speak up about the matter, you should have a buddy with you that is well informed.

• Always hike with your driver’s license, medical insurance card, and a medical form (download one here) that lists your conditions, medications, and emergency contacts.

• If your condition is digestive in nature, test out the hiking snacks you plan on consuming prior to your hike. Our GI tracts can be very temperamental. With Crohn’s, there is a constant balancing act between maintaining low residue while still eating foods with nutritional value. You want to make sure that one of your go to snacks is not going to make you go too much!

• Get extra rest right before and right after the trip. A long hike can definitely make the average person feel wiped out, and for you — even more so. If possible, give yourself an extra day off of work afterwards to recover (preferably not just because you are having colonoscopy prep, but I digress).

• Drink lots of water. This is good advice for anyone hiking, but especially good for those with GI problems. Water is a key component to our digestion of food.

• Don’t forget to eat! When I was first diagnosed with Crohn’s, I thought food was the enemy. When I ate, I felt sick, so there was a clear cause and effect going on. During that time, I would try to skip meals or just have a couple pieces of toast and call it a day. I’m sure you can get where I’m going with this. But not only is that a dangerous way to eat on a day you are just binge watching Netflix, it can be reckless on a day in the backwoods. I have always felt healthiest while eating small meals throughout the day

• Pack a trowel! 😉

Interested in making the leap from day hiker to overnight hiker?

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About the author

Elyssa DeAlmeida lives in Massachusetts with her husband, two stepdaughters, dog, and reptiles. When she is not hiking or visiting USNPS, she is likely reading, gardening, crocheting, or cross stitching.  Follow Elyssa’s adventures on Instagram at @lostdrgnfly.

Originally published May 10, 2019.