WEGO Health Award!

A Story of Hope for the New Year!

When I created Crohnie Travels, I wanted it to be a forum for others struggling with autoimmune diseases to build community - to share their own stories with me and each other, and in so doing to remind ourselves we're all in this together.  Especially around the holidays, it can be isolating when you look fine on the outside but you're feeling awful on the inside.

Today, I'm thrilled to introduce my first ever guest blogger, Steve from www.chronsinjapan.wordpress.com!  Steve is an expat living in Japan, where he was first diagnosed with Crohn's.  He shares a powerful story about the importance of finding good doctors while traveling or living abroad.  Having a physician who is comfortable treating foreigners, and speaking up for oneself during treatment are all wonderful take-away's from Steve's blog.  Take a read, and join me in offering thanks for his willingness to share his story!

---



Hello! This is Steve from www.chronsinjapan.wordpress.com and here is a little about my experiences living with Chron’s Disease in a foreign country. Thanks to Crohnie Travels for the invitation!

I have been living in Japan since 1999, but in 2008 I got sick and it turned out to be Chron’s Disease. Living in Japan with Chron’s has been tough, not just a battle with the disease, but also a struggle to get to grips with a different medical system. I don’t know if I would recommend the experience, but somehow I managed to do it!


As I said, I have been living here for 14 years and have been studying the language and culture for just as long. In 2008, when I got sick, I was already fluent in the language. I had never spent much time in a hospital though!

The first hint that I had Chron’s Disease was a fistula, and I was admitted to hospital to have an operation and clean up the mess. The doctor, who ran a private clinic, came highly rated in the area. Unfortunately he had a horrible bedside manner and probably no experience in dealing with foreigners. I suspected this from the start, but only truly understood it once I was admitted to hospital. You see, he never talked to me directly. If he did have something to say, he usually spoke to me through the nurses… with one foot out the door. No really… one foot out the door. The ridiculous thing was that the nurses couldn’t speak English either, so he would ask them something in Japanese, they would then ask me in Japanese, and I would reply to everyone… in Japanese. As I said, my Japanese was already fluent, and my medical Japanese took off rapidly, but it didn’t matter much to him. Just kind of a downer when he personally wheeled me out of the operating theater to the recovery room, yet didn’t say a word to me, or even make eye contact.



My first colonoscopy in Japan was also tough. Colonoscopies are bad enough, but using sedation for them isn’t that common in Japan. In fact, my doctor didn’t even mention that it was an option. After finding out how the procedure went down in western countries, my wife and I read the fine print and requested to have it. I remember being the only person in the waiting room with a needle in their arm! I had a gastroscopy done shortly after and my doctor very hurriedly pronounced that I definitely wouldn’t be using sedation for this. We again looked through the fine print, found that it was an option, and asked to use it. He looked disgusted, but reluctantly agreed…

The length of hospital stays in Japan were another shock to the system. Back home you can barely get admitted to hospital these days, but in Japan they keep you in forever. For my fistulectomy, my doctor kept me in for 24 days before discharging me. He actually wanted to keep me in for two months, but didn’t think I could handle it mentally... Well, he was right there! I was also hospitalized for two week stints on several occasions when I was flaring. Although I was sick and wouldn’t have minded a couple of days in hospital and then a couple more at home, I wasn’t so keen on a two week hospital stay. However in order to get on with my doctors, it always just seemed better to go with the flow...

My final main difficulty was with the medicine. I didn’t know this for a long time, but corsticosteroids are ranked on the same level as remicade or humira in Japan. Not only that, only the Head of Department at my hospital is allowed to prescribe the top level medicines… so for the first four years my doctor wasn’t allowed to prescribe me steroids. All I got from him was pentasa, which didn’t really seem to do anything. At times I got steroids from the dermatologist for erythema nodosum, but never from my gastroenterologist. Finally my condition got bad enough that I was referred to the Head of Department, and I started getting medicines that worked… and yes, that was a long four years…

Thus dealing with Chron’s Disease in Japan has been challenging. I had a job that paid well and a supervisor that didn’t want me to quit, so I decided to stay here for my treatment. I also had a girlfriend (now wife) to support me. However I didn’t realize that the first two years would be particularly rough, and that it would take four years to get referred to the Head of Department so that I could start getting the right medicines. If I could do it over again knowing that, would I have stayed in Japan…? Probably not!

However my advice for someone living and dealing with Chron’s (or any disease) in a foreign country is to choose your doctors wisely – someone who has experience with foreigners is essential. This is obvious, of course, but I agreed to my original proctologist on reputation. I just figured I would be in and out of hospital and not really have much to do with him. However due to the emergence of the Chron’s, things didn’t go as smoothly as I had imagined. My other points would to be read the fine print and ask questions. Again, obvious stuff! I just wish I had asked a lot more questions in the beginning. Doctors in Japan are definitely put up on a pedestal and don’t really like to be questioned that much, but with tact and diplomacy, I must have been able to speed up the process to get on to stronger medicines…

So that is my story. I am still in Japan and things are a lot better now. The Chron’s still comes and goes, but I seem to have the hospitals worked out better. It took a while though!

----

Steve, thanks to you for sharing your story with us!  It's a wonderful testimony that having Crohn's doesn't mean we have to give up our dreams.  Whether you're thinking of traveling abroad or living abroad, don't let your health stand in your way from following what's in your heart. 

Crohnies unite!

Comments

Popular Posts