Traveling with a rare disease can be a tricky deal at times. Our health can change in a moment’s notice and that’s not ideal anytime, but especially not when we’re away from home and our medical team. My mother and I have the same rare diseases. We have Familial Adenomatous Polyposis (F.A.P.). F.A.P is a hereditary colon cancer syndrome with risk of other cancers and issues. It’s common for those with F.A.P. to develop a rare disease called Short Bowel Syndrome (SBS). Due to removal of the colon from F.A.P., nutrients are not properly absorbed and severe diarrhea is common. This can greatly affect quality of life due to physical limitations of health and activity.
While traveling around the United States and abroad, restroom access has always been the primary concern for my mother and I. Growing up, we both had ileostomies, which required restroom access when our pouches required emptying as well as an accessible area for changing our ostomy appliances especially during a leak. We both require an abundance of medication as well. These are all concerns for accessibility and for packing more than adequate amounts of supplies for the duration of our trips. After my ostomy reversal, restroom access became even more important as ingestion of food or liquid and physical activity increases my SBS symptoms which further limits activity. Although I can take anti-diarrhea medication to reduce my SBS, it can also cause intestinal blockages.