Travel companions: Crohn’s and an ostomy

Muir Woods National Park- Redwood trees

Muir Woods National Park- Redwood trees

Traveling has been a sore subject for me since my diagnosis. In these 8 years I have been physically unable, too fearful or discouraged by gastroenterologists from traveling. In fact, I attended college about 20 minutes away from home because I had just been diagnosed and was told to by my doctor to stay close to home. For a long time I’ve watched peers take incredible study abroad or post graduation trips throughout the world while I pressed onward with work. The times I did take trips were short stops for medical conferences where I presented work and turned around and came home. Over the years feelings of resentment built up and I really felt ‘tethered’ by Crohn’s or medication.

Being on my first real “vacation style trip” in 8 years (and first as an ileostomate) I am surprised to find my resentment abating. Being grateful for the things I can do and exploring my current physical limits is far more rewarding (and less frustrating) than dwelling on what I couldn’t do in the past. Moreover, while my ‘normal’ may be different then many of my peers, this trip is evidence to myself that I can travel, I can fly, I can (and did) walk almost 8 miles touring around a city, I can step out of a carefully crafted comfort zone and most importantly there is reprieve from pain and thinking about Crohn’s. I know very well the uncertainty inherent to IBD but living in the here and learning to appreciate the now has lifted immense anxiety off of my shoulders. Sure I’m concerned about my prognosis but I’m learning to leave the worrying up to my physicians and focus more on being trusting and happy.

Sutro Baths

Sutro Baths

Something that really helped in this whole positive transition was being treated respectfully by both TSA and United Airlines employees. TSA related horror stories are a dime a dozen but I found that using the notification card (ACCESS TSA NOTIFICATION CARD) to discreetly declare that I have an ostomy helped. I showed it to the man at the scanner, walked through, he asked me to touch the outside of my shirt around/over the pouch and then he swabbed my hands looking for whatever they look for. He was pleasant and respectful and it took all of about 30 seconds before I was on my way. Once I boarded the plane I told the flight attendant that I may need more water due to a medical condition and she went ahead and handed me a whole bottle no questions asked. I doubt these niceties registered as a blip on the radar for either of these people but their kind attitude went a long way in making me feel so much more comfortable.

I just wanted to pass along that I had a really positive experience flying out of Washington, DC (translation high security) and that traveling with IBD and/or ostomy can be nerve racking but if possible should and can be done. Feeling ‘tied down’ likely transcends a specific chronic disease diagnosis but know that there are ways to travel it just takes finding good resources, resiliency and the desire to step out of your comfort zone. I would recommend that if you’re able to travel don’t wait 8 years I did to take such an enjoyable trip. Go for it, you may be surprised how therapeutic it is to put the heavy thoughts down for a time.

West Coast sunset-Half moon bay

West coast sunset-Half moon bay

3 thoughts on “Travel companions: Crohn’s and an ostomy

  1. Great advice & congratulations on a successful trip! Your pictures speak volumes. Looking forward to seeing many new adventures in the future! 👏🏻👏🏻👏🏻


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