Traveling Without All My Intestines: How I Make It Work

People sometimes ask me to explain gastroschisis and malrotation. I usually don’t. My explanation is much simpler:

I don’t have all of my intestines.

But that’s if it comes up at all. In 2004, I experienced a complete bowel obstruction. The surgery that followed resulted in approximately two-thirds of my intestines being removed. Since then, managing my health has required constant awareness—whether I’m at home or traveling with Jen.

Travel doesn’t make my medical challenges disappear. It means I must understand my body, prepare for what might happen, and adjust when necessary. It also means trying to keep up with my young wife, which may be the hardest part of all.

What Everyday Life Looks Like

I’m constantly monitoring and regulating everything.

I must think about what I eat, when I eat, how much I eat, whether a restroom will be available, whether I’m drinking enough water, and whether I’m taking the nutrients and vitamins my body needs.

Food, digestion, hydration, energy, discomfort, medication, and bathroom access are everyday considerations. Travel can make all of them more difficult because I’m away from my normal environment and routine.

My Biggest Challenge While Traveling

Staying regular is probably my biggest challenge.

There is always a concern that something could go seriously wrong and require hospitalization. That possibility doesn’t mean I stop traveling, but it does affect how I prepare and how closely I pay attention to what my body is doing.

Before leaving home, I make sure I have enough vitamins and stool softeners for the entire trip. I also try not to let the preparation itself stress me out, because stress can make everything more difficult.

Food Requires Restraint

I must be mindful about what I eat and how much I consume.

That doesn’t mean I can’t enjoy food while traveling. It means avoiding foods that I know could make my condition worse and being careful not to overeat.

Sometimes the smartest decision is eating less before an activity or waiting until I know reliable restroom facilities will be available. Protein drinks and protein bars are lifesavers.

Flights, Cruises, and Excursions Are Different

Flights and cruise ships have restroom facilities, so those situations are somewhat easier to plan around.

Excursions require more thought. Before a longer excursion, I may need to empty my bowels and limit how much I eat. I also need to understand how long we’ll be away and how frequently restrooms will be available.

Knowing where the bathrooms are is important—not because I need anything elaborate, but because I need to know how long I may have to wait before another restroom is available.

A normal travel day also has flexibility. A difficult day becomes harder when we must arrive at a port at a specific time, catch a flight, meet a tour, or follow a schedule that doesn’t leave room for what my body needs.

Traveling With Someone Who Understands

Jen understands that these are daily issues for me.

She makes detailed plans, but she is also flexible about when we leave and what I may need along the way. I try to wake up extra early to give myself time and not stress about not using the restroom enough before we leave. Her understanding of what I need makes travel easier because I don’t have to pretend everything is fine or worry that I’m ruining the day if plans need to change.

We can prepare carefully without allowing my condition to control the entire trip.

When Things Don’t Go According to Plan

Fortunately, I haven’t experienced anything too extreme while traveling—and I don’t want to jinx myself.

There have been occasions when I’ve ended up vomiting for one reason or another. Those moments are reminders that even with preparation, I can’t control everything.

The goal isn’t to guarantee that nothing will go wrong. The goal is to understand my body well enough to make informed decisions and recognize when I may need help.

What I Would Tell Someone With a Similar Condition

Travel is not impossible.

Every person’s condition is different, and what works for me may not work for someone else. A person—or the parent of a child with the condition—needs to observe and document what happens so they can determine what works best.

Pay attention to what you do on your best days. Once you recognize what helps, make those practices part of your routine.

Most importantly, you must live your life. You can prepare, but you can’t spend the entire time stressing about what might happen.

Make a Medical and Financial Plan

Anyone traveling with a significant medical condition should consult their doctors before traveling and develop a plan that reflects their individual needs.

I also believe travel insurance with appropriate medical coverage is important. If a serious problem happens away from home, you don’t want to face a fortune in unexpected out-of-pocket medical expenses.

This article is only my personal experience. It is not medical advice, and it should not be treated as a plan for someone else with gastroschisis, malrotation, short bowel syndrome, or another digestive condition.

The Bottom Line

Travel requires more preparation for me, but that doesn’t mean I can’t do it.

I pay attention to what I eat. I bring the vitamins and supplies I need. I think about bathroom access. I adjust before long excursions. I travel with someone who understands when the plan needs to change.

Then I go live my life.