[iliketurtles]

Daily life here has been ok to adjust. Finding food that works for me isnt so easy. I dont like sauce because of my issue. everything seems to have sauce …

sorry for the long time away from this. I lost the link to this site and for some reason couldnt remember the correct name. 

i have a bad update, the meds here are not working anymore. not one bit. 
i developed a fear of using the trains also. 

it would take about 5 to 7 minutes to go 3 stops. i cant do this anymore. but a 1 hour walk i can handle. guess im really scared ill have an accident and so many people would see it and i would be stuck till next stop. 

pretty scared of my future now. doctor i saw at my current hospital doesnt seem to be in a rush to help. just keep taking pills for longer time i was told. 

im switching to a bigger hospital. 

changing of my diet and local meds are not working for me. Im limited on american imodium. 

now to find help on a weekend… thats going to be hard. scared to lose my job if i ask for too many days off. 

[iliketurtles]

Yesterday i was given a 3rd type of pill, Miya-BM.
doctor said to try it and see how it works. changing my diet sure hasnt had much luck. 
i dont think ill go back to this clinic. ill find a bigger hospital and see if they can help better. 
im so glad its been cheap here to get care. i really dont feel im wasting money like back in america. 

the problem with this next hospital i want to go to is they might not speak any english. ill try anyway !

[iliketurtles]

and a follow up to this mess. I was told some people in america have been getting Social Security Disability because of IBS and losing lots of weight. 

wondering if japan offers something like that…

[Accessible Japan]

Oh, no!

For the trains, it might not be something you want to do, but have you considered slim-fit adult diapers?  They are regularly available at any drug store, or on Amazon: https://amzn.to/2Lyl3bp

It could give you the confidence to ride the train, even a few stops at a time.

As for the hospital and social insurance, your best option for both of these is going to your city/ward hall.  There likely is some sort of volunteer translator group that helps out with things like hospital visits that your city could introduce you to.  There will also be a welfare desk at the city hall where you can discuss any assistance you might qualify for.

[iliketurtles]

thats something im going to consider. im sure its mostly a mental thing but ill feel safer. 

because of my ongoing issue, im trying to look into what they call a “FMT”. 

pretty much a poop transplant. ill have to find out if im a good fit first. its possible i dont have IBS and its something completely different. 

but as far as getting care here in japan, its been pretty easy to just go to the hospital with no appointment, see the doctor and get new meds. everyones issue with what i have is different. im maybe at the top of bad. 
i was given a 4th new med to try. ill find out after a week if its been helping or not. 

[Accessible Japan]

I recently had some issues with this and my doctor gave me ロペミン (Lopemin, or Loperamide) which is basically the medical version of Imodium.

It really worked. It may be something else you may want to ask for.

[iliketurtles]

Ah yes! ive been looking for an imodium type in japan for a long time. Ive found it also goes by the name of CAGUDALIN. Its pretty much imodium. Had the same dosing instructions. But will need to be prescribed by a doctor. So ill ask for that when im running low. for now ill use the imodium i have left a bit more freely. i was scared of running out so i didnt like to use it too often. 

im feeling a lot better knowing i can get that out here. I had my parents sent me 2 boxes of imodium. but shipping is expensive. 

Doctor update post below….

I had a bad experience with my previous doctor. I told him the meds are not working and i would like to be recommended to a bigger hospital. My guess was my bile acid is the issue and i want to be tested. 

He said the current clinic cant test for that. also they cant recommend me to a bigger hospital. but can get me more meds. A week went by and i was doing good till friday came along. My stomach wasnt doing so well. 

i decided to go to a new clinic “Loco Clinic” in naka meguro. They speak good english there. 

Best part? doctor right away said he cant help me with my current issue. But he will give me a letter of recommendation to go to a bigger hospital, st luke’s. 

this made me super happy! this is what i wanted! he didnt waste my time! i recommend that place for other more common issues. im sure they can treat a lot of stuff but for things with the gut and IBS, they are a bit out of their hands. 

[Accessible Japan]

That is fantastic that you were able to get referred to St. Luke’s so fast at the new clinic.  I was writing the new Lonely Planet accessibility guide for Tokyo and they suggested St. Luke’s as the best option.

Keep us posted, this is a really important discussion!

[ardchen]

Thanks for sharing about your IBS treatment and living challenges with it in Japan. I assume you’re quite aware of a few different types of IBS so I won’t talk more about it. 

My type is when I am stressed, particularly knowing that I have to travel and might have limited or none access to toilets is one of my main triggered. I was prescribed Irribow, too (by a doctor in Bangkok). It worked for me twice but it took a long time to see some positive changes (about 3 months). I had a 3-month prescription once many years ago (at that time the long course was 3 months) and my symptoms of IBS reduced significantly for a few years. Then university gave me some stressful situations and maybe I was away from the medication for awhile, the issue came back. I went back to see the same doctor and he prescribed a new version of Irribow for 3 months and he said it was now okay to have it daily not just a 3-month course. I now feel better but not totally fine. Something that I also found useful was talking to a psychologist to learn how to manage stress. 

I am doing my best trying to avoid Imodium as it has both short and long terms nasty side effects. Also, I avoid eating breakfast and it helps for some reasons. I feel like my stomach cannot work that hard in the morning to digest food.

I love Japan and I am applying for a multiple entry visa. Restrooms there are generally clean so one less thing to worry about for a person with a mobility disability and IBS.

Happy New Year!

Thanks Accessible Japan for great information for disabled travellers to Japan 🙂

[iliketurtles]

Hello there!

Im glad iribo was good for you. but in my case it seems its bile acid malabsorption is my issue giving me an IBS feel. thats why iribo didnt work at all for me. I also get really nervous if i know ill be away from a toilet for a while. Lucky for me here in tokyo, many stores, malls parks and other places have toilets. so im usually pretty good on that. 

i was given “cholebine” / “コレバイン” for my issue and it seems to help a lot. this stuff traps the bile that doesnt get stored again and makes it exit my body safely.  that makes me sure i have a bile acid issue thats getting too far down my stomach giving me urgency to go to a toilet. 

also i have some Lopemin pills the doctor gave me in case the cholebine doesnt work. 
the lopemin pills here are 1mg vs Imodium which is 2mg. The box for imodium says start with 2 pills which would be 4mg right away. 

Here the doctor said take 1 lopemin in the morning and one near dinner time. so thats only 2mg for the day. Im better off on this than imodium. imodium will back me up for days….

Lopemin is safer i think. also i dont need to take it daily. just when needed. i was worried i wouldnt have something for an emergency like imodium. im glad japan is able to give lopemin! its a life saver. 

My big hospital visit is feb 7th. ill be sure to have a nice update about that. 

Really hope my experience can help others.