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  • IBS and living in Japan

     ardchen updated 3 months, 3 weeks ago 4 Members · 26 Posts
  • iliketurtles

    October 5, 2019 at 10:33 am

    Late update but i had to be sure. 

    The イリボー or Iribo given to me didnt do too much. almost felt like no change after using it for about 3 weeks. I would eat something and out it goes as fast as it went in haha. 

    Went back to the doctor and she said i should still take Iribo once a day but also take ポリフル 500mg (Polyful 500mg) 3 times a day after a meal. This didnt work too well with me. I might have an issue during eating if i wait to take the pill after. 

    So i take the pill right before meals. 

    So far so good after about 2 weeks now. Im not running to the toilet after eating a meal anymore. I wake up and can use the toilet once a day or sometimes 2 times a day. 

    Without getting too nasty with the description, The poop comes out a lot more solid than it used to. This is something im so thankful for. If its a lot softer or even close to a liquid, i wouldnt be able to eat for the worry of it coming out quickly. 

    now this isnt a bullet proof pill. I do still watch what i eat but ive been able to enjoy pizza and burgers and curry with no worry. Also many other types of food. 

    Sugar seems to be a big issue still. maybe thats a more of a personal thing going on. some types of icecreams or shakes, gummy candy and even cakes will have my stomach in a lot of pain. even with the pills there is no stopping that. so sugar is something im careful about. there are a few japanese sweets im able to eat. i enjoy pudding, red bean and mochi and some types of cakes that dont get too crazy with filling. 

    my thought on the pills… i think iribo isnt needed but the doctor said i should take it for a long time and it should work better after a while. the polyful is working great so far at the 500mg per pill 3 times a day. 

    i dont get backed up like i do with Imodium. that stuff will have me waiting about 2 maybe 4 days before i can poop again. Polyful will allow me to use the toilet once a day or 2 times a day with no issues. 

    ill be back with more info on eating out and let you all know how it goes. Ive been eating mostly at home still because i dont fully trust the pills but slowly ill get over that. its working well so far. 

  • AccessibleJapan

    October 6, 2019 at 8:01 pm

    Thank you for the great update – so glad you are adapting.

    How is adapting to everything else?

  • iliketurtles

    December 7, 2019 at 7:03 am

    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

    December 8, 2019 at 7:18 am

    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

    December 8, 2019 at 10:10 am

    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…

  • AccessibleJapan

    December 9, 2019 at 4:01 pm

    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:

    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

    December 15, 2019 at 11:42 am

    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. 

  • AccessibleJapan

    December 15, 2019 at 8:12 pm

    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

    December 22, 2019 at 9:48 am

    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. 

  • AccessibleJapan

    December 23, 2019 at 9:50 am

    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!

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