Hi, I am in Japan, and I had been hospitalized for 3 months in a hospital in Tokyo in 2012, so if anyone is wondering how they treat IBDs in Japan I am here. I am interested to find out the treatments in States and how doctors treat patients differently so that we can perhaps combine the good parts leaving the bad parts out, and be active in our treatments.
I was diagnosed with UC the beginning of 2012 so wasnt too sure how bad this disease gets and the consequence of having this disease until May last year, but yep I got hospitalized and they put me on parenteral nutrition for a whole month... As aweful as it was to be on parenteral nutrition that long, not being able to eat by mouth and loosing so much weight, I know that if I was fed by mouth and not via parenteral nutrition, I would probably had to have a surgery because it was so bad (anything I drank came out down below, it was aweful...) I wasnt aware that US doctors do not go for parenteral nutrition, because it seems that in here, if you dont respond to Steroids, and if your colon is extremely inflamed, they automatically put UC patients and Crohns on parenteral nutrition giving a colon to rest and still heal not being malnourished. (Doc said that I need energy to heal, and the colon takes months to heal...once ulcerated).
As I was being discharged, I met with hospital dietician and they give me a list of things I should eat and not eat/avoid, though at first I really didnt think it was realistic to follow because it is strict (low residue, low inflammatory, low fat diet.) Well the list surely helped me to eat certain food to let the intestine heal. After 6 months I had colonoscopy and it has healed well (except I had scar tissues and pseudopolyps from previous ulceration that was extremely bad.) They recommend me to eat more fish and use certain oil and avoid inflammatory food (spicy, caffein, cold/frozen food...) Certainly doctors dont know about food, but I was refered to a hospital dietician who is certified. Doctors told me when I dont have symptoms I dont have to care about food, but I cannot eat greasy food.
As for the leukopharesis, they call in here LCAP or GCAP, and they use Adacolumn to filter white blood cells out while you are in flare, white blood cells cause inflammation, and supposedly there are no side effects. However, after 1 cool I experienced high fever that night, and I had to be given anti-biotics to get my fever in control (I was having 40c fever...which I never had in my life.) The doc said it usually works, but I didnt respond to it well.
Its a part of the standard treatment in here and not experimental and lots of people receive this treatment because there is no side effect. I also received that as well for 6 cools (1 cool = 1 filteration session.) They monitor your white blood cell count, treat me with Prograf since I did not respond well with steroid. I asked the doc why not Imuran, and was told that Imuran takes 2-3 months to be effective so it has to be Prograf becoming effective in 2-3 days. For LCAP/GCAP to be effective, you have to be mild to moderate, but not severe, but in my case because I needed an emergency treatment and steroid was not working (steroid dependent), so they used GCAP on me in order to taper down steroid with Prograf.
I believe only reason Prograf is being approved here in Japan is because the researcher discovered some strains of the bacteria in soil in Japan and they developed the drugs so that might be it.
I concluded that medical instituions are not interested to hear the treatment if its not using drugs or surgery for patients, especially in States? I know in US hospitals they are very prone for a profit, and they are perhaps more resistant on using less invasive methods - leukopharesis, parenteral nutrition, FMT, even though it may be more beneficial for the patients. However, in States there are more invasive and dangerous drugs to control your symptoms but not cure with side effects. Having said that being in Japan doesnt mean you can get more treatements, because some of the drugs available in States is not approved to be used for UC in Japan (why approved for FDA they won't approve it in here is beyond me and vise versa.) We are all humans and just because one is Japanese the treatements should be different. I know in Japan people are more detail oriented but I know lots of researchers dont speak English so they are mising out on bringing drugs here in Japan not being able to cut the red tape. Being careful is one thing, missing out is another, and vise versa among countries.
I never knew about SCD until I participated in forums and some sites. I think its wonderful ideas and the thoughts of SCD is not in Japan. Some UCers I know in Japan they are from States, Canada...etc. so they know but Japanese doesnt know about SCD and it makes me sad they are missing out. I think its the language issues.
What you guys have over Japan that is close to a cure is FMT because in Canada and States, there are some doctors who do this for C-Diff, as well as for many clinical trials already happening in North America and Holland for UC. I know some people's UC is cured after FMT and I brought this up with my doc in here, and he said its not allowed and we dont do that in here...and no clinical trials done in Japan, which is again make me believe some docs are very closed minded if its not main stream. I think FMT is a cure even now, if done correctly, and through clinical trials they are finding the causes of the cured people of FMT vs non-cured people.
Had anyone have FMT procedure done? I am looking for some docs who can do this.