THIS HAPPENED is an ongoing series where readers share firsthand experiences living with an ostomy.
I was diagnosed in 1963 at age four with Hirschsprung's Disease. I’ve had colostomies and ileostomies opened and closed since 1966, seven ostomies altogether. For 12 years my ileostomy has been permanent. In 2013, a gastrostomy feeding tube (G-tube) was placed for venting and emptying my stomach contents and I am fed intravenously through a central line into my heart. Despite all my medical equipment, I decided to take a vacation with my husband, daughter, and mother to Asia for three weeks. The first step was getting a letter from the doctor stating my conditions and the necessity to travel with medication and supplies. Our flight from Fort Lauderdale to Hong Kong would be 22-hours long with a plane change in Chicago. My trip preparations began three months in advance!
The first concern I had was bringing along Total Parental Nutrition (TPN) since I’m fed intravenously and also require saline solution for dehydration issues. Normally, I receive custom-made intravenous fluid that's delivered on a weekly basis (overnight, on ice) from a supplier in Kentucky. For this trip, it was determined that I’d use Clinimix—a standard IV fluid that did not need refrigeration. In addition, I would order vials of medication and vitamins to make a formula specific to my needs. These vials needed to be refrigerated in an insulated lunch box which I filled with two ice packs. I'd also carry along six cartons containing four bags of IV fluid in each box, plus a rolling backpack while I was hooked up. In addition, I had a Groshong catheter repair kit in case my central line malfunctioned since many hospitals do not have this kit on hand.
Next, I needed catheterization supplies and medications because I catheterize four times a day. I brought 100 catheterization kits to be sure I never ran out. Since I was traveling overseas, all my medications had to be in their original bottles with the labeling. In addition, I brought an antibiotic in case I got sick. In the picture above, the large blue suitcase was 100% ileostomy and catheterization supplies, my medications, a Groshong, and gastrostomy repair kits.
Another concern was packing enough supplies for both of my ostomies. I have an ileostomy and a gastrostomy. I usually change my ileostomy every two to three days, so to be safe I brought along 40 complete pouch changes. Three of these changes I brought on board the plane. Sometimes air pressure inside the plane causes my pouch to inflate which can loosen the wafer. For my gastrostomy, I brought an emergency kit just in case the tube which is inserted into my stomach fell out. In addition, I packed extension tubing to hook up the exterior stomach tube to release air pressure from my abdomen and to empty stomach contents when I'm feeling sick. I used bags from my catheterization kits as attachments to the extension tube.
Lastly, my clothes! I just used a small carry on suitcase. I felt that clothes were least important as I could always buy something if needed once I was there. As it turned out, we experienced three of the four seasons in just three weeks! Temperatures were in the 40’s in Hong Kong and 90's in Singapore. I ended up buying sweatshirts, t-shirts, sneakers, and toothpaste during our trip.
In Hong Kong, we went to the top of Victoria Peak, explored the night market, traveled on the world’s longest escalator called a travelator, had suits made at a Chinese tailor, and enjoyed the sites, sound, and culture.
Our passports were all up to date but we needed visas for Vietnam and Cambodia. However, since we were traveling by boat from Hong Kong, the cruise ship took care of the visas for a fee — one less thing for me to do!
We took a water jet to Macau, walked around the magnificent hotels and casinos, and visited historical Portuguese Houses. After spending four days in Hong Kong and Macau, we boarded our ship to Vietnam, Cambodia, Thailand, and Singapore. We had four stops in Vietnam: Halong Bay, Danong, Nha Trang, and Phu My.
It was a tremendous challenge but absolutely worth it! I had a wonderful time on the trip with my family. My wonderful travel tales were made possible by packing up and leaving my comfort zone. I strongly encourage everyone to take a trip. It's the best, and you'll come home with a new sense of independence.