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Touring Japan with an Ostomoy and a G/J Tube
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This summer, I took a wonderful two-and-a-half-week trip to Japan and Russia. We stayed in Tokyo for four nights, took a cruise for ten nights, and stayed one more night by the Tokyo airport. Despite all of the equipment I had to bring with me, I had a phenomenal time with my husband and daughter.

 

Planning

 
 Lynn and her daughter


First, let me tell you about my preparations for this trip. It required very detailed planning, as I have supplies for an ileostomy, a gastrostomy, and a jejunostomy, as well as medications and urinary catheter supplies. I also have an EpiPen® for severe allergic reactions and an asthma inhaler. Since we were going outside the United States, nothing could be mailed in advance as there was a possibility it could get held up in customs. Also, if I forgot anything, I would have to go to a Japanese hospital. However, I was not going to allow any of this stop me from traveling!


I called my ostomy supply company and informed them of my upcoming trip. I requested three weeks’ worth of supplies to take with me. I then called my urinary catheter supply company and told them the same. I catheterize three times a day, so this was going to be sixty-three catheters, wipes, gloves, and drainage bags, which I use for venting and draining my gastrostomy.


Lastly, I called the company that provides my feeding supplies. Normally I use four 250 cc boxes of enteral formula a day, so I would need eighty-four boxes to cover me for three weeks. However, I decided to limit myself to three boxes per day, for a total of seventy-two boxes. I knew that on the cruise ship, I could request broth or yogurt or whatever I needed, and I would be okay supplementing the formula in this way.


I asked the company that supplies my enteral formula if the kind of formula I use is available in Japan, in case my luggage was lost. It isn’t. They told me what I could get in Japan that was most similar to mine, and helped me figure out how much of that I would need if I had to use it. I printed out the calories and nutrition chart for both formulas and brought that with me in case I needed to make the substitution. (Thank goodness I did not need to.)


Then of course, I had to call the mail-order prescription company that supplies all of my prescriptions.


Each of the three cartons of enteral formula weighed sixteen pounds! I was taking forty-eight pounds of formula; three feeding pumps (in case one or two failed); four charger cords; eighty feeding bags; eight extra extension tubes; alcohol wipes; and ten syringes to flush my tubes. I ended up with two large suitcases of medical supplies (including the formula), an intravenous pole in a separate box, and just an overnight bag for my clothes. I was determined to go and to make this work!

 

Tokyo


Once packed and ready to leave, I had to prepare two feeding bags in two separate backpacks for the long flight to Tokyo. I called the Transportation Security Authority (TSA) in advance to let them know I would be going through with a large quantity of liquid. I was glad I’d called ahead, as someone was there to meet me when I got to security. I travel quite a bit, and the TSA supervisors at my local airport are starting to know me. I always write a note after to thank them, or to let them know if there were any problems.


I like to hook up to my pump before going through security, rather than after. There’s really no clean place to pour my formula into the feeding bag in the airport, so I don’t want to do it there. But also, once when I had my feeding bag ready to go, in my backpack (not connected to me), and I put the backpack through the x-ray machine, they wanted to open my feeding bag to test the liquid. That doesn’t happen when I’m connected.


The flight went well. Once we landed in Tokyo, I went to the bathroom and had the biggest surprise ever. They had ostomy toilets! Can you imagine?! It was a toilet in the shape of a sink that allowed me to stand and empty my bag, and to wash it out without moving.


Well, I thought I just got lucky and found the one and only ostomy toilet. I was wrong! There was an ostomy toilet in every public handicap-accessible restroom we went into in Japan, including the train station. Some of them even had adult changing beds. To open or close the door for a handicap restroom, you pushed a button and the door slid aside. Plus, every restroom was spotless.

 

The appliance on the right is an ostomy toilet, complete with its own faucet.

 

 

Toilet has water sounds, heating and front and back cleaning functions. 

Restroom sign. The third icon down shows an ostomy toilet is available.


I was completely fascinated with the ostomy toilet. Then, when I was done emptying my bag at the ostomy toilet, I went to sit on the toilet seat. The toilet had many buttons to push. One to heat the seat to your personal preference, another to play the sound of running water (so people wouldn’t leave a faucet running just for the sound of it, and waste water), a third was to wash your front, and the last was to wash your behind. This was in every public restroom and every hotel room. How impressive!


We checked into our hotel room in Tokyo and stayed four nights. My husband and daughter were very much relieved after carrying all of my luggage and their own. There was plenty to see in Tokyo. We went to the largest fish market in the world, with nine hundred stalls; to the futuristic city of Odaiba; to Ueno Park Zoo to see the giant panda; and to the old city of Asakusa, where my daughter Jill and I dressed in kimonos and toured the city in our outfits. We participated in a Japanese tea ceremony in a traditional Japanese home, and we went to Mount Fuji!

 

I had a great time. The best part was saying “good morning” in Japanese to a policeman and having him bow to me. I felt like a diva!

 

The Cruise

Then we were off on a ten-day cruise of northern Japan and Russia. We sailed with 1,300 Japanese passengers. It was like living with the Japanese people. We were among the people more than in the city, and really got to talk to the other passengers. I had an opportunity to speak Japanese and expand my vocabulary. We saw the Hakodate Festival at four of the ports. But this is a tale for another day. Let Oley or me know if you want to hear more about the cruise!


LifelineLetter, September/October 2016

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6/28/2017 » 7/1/2017
Oley exhibit at Congress of the Intestinal Rehabilitation and Transplant Association, New York, NY

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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