In China (Shanghai) with UC

Well, all I can tell you is that a climate change will mess with your UC for a short while. I was in a minor flare that kept hanging on til I move to Az. Then it got completely stirred up. I thought it was my medicine that we moved with us, but in actuality it wasn't. It took a month for my body to adjust but then I was 100%. Other than that I can't help you much. Sorry.

I read that in China you have to pay for your treatment before you get it.

Let me know how it goes! I'm in my third year of Mandarin now, but haven't been to China yet. Maybe I can help =p

When I went to Germany, I had student health insurance from HTH Worldwide. I didn't end up seeing a doctor over there, but they seem fairly good and have pages with how to say various health-related things, and doctors. If this is through your school, they might be getting insurance for you, so I'd look into it.

Prior to traveling to Japan, I located an International hospital with an extensive English speaking staff, should I have had any problems. Doing a search for Shanghai International hospitals yields some results.

Just definitely, definitely make sure you have solid insurance that will cover treatment abroad. I set aside a chunk of cash I took out of my savings that would have been used in a medical emergency, should it have occurred. Fortunately it did not!

I'm much more familiar with Japanese cuisine than Chinese (and I think Japanese cuisine is probably more amenable to people with IBD), but I will tell you I went in the middle of a flare and actually felt better. You may find an Eastern diet is helpful, though if you remain on SCD I suppose it won't make much of a difference. I experienced 2 weeks of constipation upon arrival, which I think was a combination of traveling and the switch to a lot of rice. Stay hydrated! And the fiber is a good idea. I also agree that TCM is an avenue worth exploring.

Hm, this wasn't too helpful, but good luck! And enjoy the experience. I dropped out of my study abroad program because my insurance took too long to approve me for a new medicine and I didn't dare go to the Czech Republic unmedicated. I don't regret it per say, but it's one of the bigger disappointments I've faced. So good for you for going!

My UC cleared up when I went to Japan for 2 years.  I went despite the UC, determined not to let it destroy my chances at experience in life. My advice would be to just go and see how your gut adapts, hoping for the best. Be sure to know where to find help there if you should need it, though.

Hey MaxMilian,

I lived in both Shanghai and Beijing before, both of which while I was on a flare and didn't realize there were ways to control my UC. Generally the diet in China was helpful as compared to The States, particularly if you stay away from the overly oily and spicy foods. Additionally, if you are offered any "white lightning" alcohol please decline or expect a big flare (no surprise, but I learned the hard way).

Still traveling to China frequently for work now... as you said with a suitcase full of my medicines. As of now I take psyllium fiber, VSL, and Humira with me for my trips. If you are considering staying for a longer period such as 1 year, I would simply have your parents or a friend buy the VSL in the US and ship it with cold packs via UPS to your address in Shanghai. It will be expensive, but I've yet to see VSL for sale in China.

祝你好运！

To answer your questions to the best of my ability...

1) I have a thing about sticking with a brand once I find something that works, regardless of if it should be the same product. My trips to China now are usually 3 - 5 weeks in duration, and busy throughout... so running around trying to find equivalents of the medications I take is not on the agenda. Additionally, counterfeit medications are extremely ubiquitous throughout China. If you do need to buy medication, ask a Chinese professor or advisor (I assume you are going for study) on which pharmacy can be trusted.

2) My trusted cooler always travels with me, for both the Humira and VSL. Since the Humira needs to be cold throughout, I just put my VSL in there as well. Personally I would feel leery to keep such a large quantity of VSL unrefrigerated, but you are right... I've heard the same thing concerning VSL. I'm about to leave for CES in Las Vegas for 5 days, and will not be bringing any cooler for the VSL as my Humira shot was earlier in the week.

3) The most trouble I ever have is through US customs, who rummage through everything I have neatly packed, and then make it impossible to get the cooler closed again. Luckily, the only country you will see security theater is the good ol' USA. My only concern would be with the overly large amount you are bringing into China, and the perception that you could be seen as selling it there. I would keep documented use papers as well as doctors notes and explanations on you at all times. I really wouldn't expect a problem though.

Regards.

Hi MaxMilian

My folks used to live in Wuxi - just up the road from Shanghai, and very much smaller, however it still had excellent medical facilities that the expats all used - expensive though, the companies all paid, not sure what it would be like to cover personally. I go up to China about once a year these days, and most of the time we are eating day to day food, lots of rice and a few bits added. I found that the food was quite easy while I was flaring - as mjschl said the booze not so much - gotta try these things but if you get into a big drinking session don't be shy to top your glass up with water when no ones looking- lots of people do after the first glass. I did switch from the enemas to suppositories for the trips, even carrying a few weeks of them would take most of my luggage allowance!

Hope you have a great time, so much to see and do!

Hi Timmy, what a coincidence I came visiting this forum today. Welcome to HealingWell!

How severe is your proctitis?

To answer your questions:

1) Yes I did find a specialist doctor in Shanghai who is very patient, knowledgeable and is relatively easy to make an appointment with. The downside of course is he is quite pricey (nearly 800 rmb just for a consult). His name is Dr. Bo Sun of Parkway Health Medical Centers. He specifically works at the Glenagles Medical and Surgical Center in Tomorrow Square (address: 4th Floor, Tomorrow Square, 389 Nanjing Xi Road, Shanghai). You can call 6445 5999 anytime to make an appointment to see him (usually I have to wait a few days to a week). His personal e-mail is: bo.sun@parkwayhealth.cn. He performed a sigmoidoscopy on me a few months ago and I found him very professional and thorough. He explained things very clearly. The Parkway Health clinic also performs Remicade infusions in the event you need them too. If you have insurance, you can claim back some.

2) Dr. Bo Sun's Parkway Health clinic has it's own pharmacy which was able to give me a short course of predisolone (sp?), though I didn't need to use it. I am not sure if they have Pentasa suppositories or Salofalk enemas. However, during my stay in Shanghai I found a pharmacy that sells Pentasa suppositories, Salofalk tablets, probiotics and predisolone tablets but they don't have the enemas. The pharmacy is called: "Shanghai No. 1 Dispensary" or in chinese "上海市第一医药商店". It is located in the Huangpu District at 616 Nanjing West Road. You need to be able to speak chinese in order to get around there though. As for the enemas, I found a place where you can have them order the Salofalk enemas in for you (though again, pricey). The place is a subsidary of the Parkway Health company called "Parkway Community Pharmacy". Here is their website: www.parkwaycommunitypharmacy.com. I managed to order one box of the enemas from them as I just wanted to test whether I could get hold of Salofalk (莎尔福) enemas in the event I needed them.

Sounds like we both have much in common. I have proctitis (6 cm) and am also using Pentasa suppositories and Salofalk oral medication (granules). I have Salofalk enemas too but I haven't had to use them. Before coming to Shanghai I brought a whole suit case of medications: enough Pentasa suppositories to last 1 year (using 3 suppositories daily), 5 boxes of Salofalk enemas (liquid and foam), 1 year's worth of VSL #3 probiotics, 10 canisters of steroid foam, 10 boxes of steriod suppositories, 10 boxes of Proctosedyl onitment (for hemmies and fissures), 2 boxes of special hemmie/fissure ointments, several boxes of immodium + gastrostop (for diarrhea), several boxes of Buscopan (for abdominal pains). Most of the medication I haven't actually used yet (aside from the suppositories), in fact, I think I have a little too much medication, perhaps I should open my own UC pharmacy here haha.

Btw, if you don't mind me asking, what sort of work are you doing in Shanghai? I am looking for employment in Shanghai at the moment but unforunately can not find anything (I have recently graduated from the accounting, finance, banking profession).

Hi MaxMillan,

Thanks so much for the detailed reply. So handy having had someone go through it. Also looks like you came fully prepared. My proctitis is relatively mild, with occasional flare ups.


Can I also ask if you organised any transfer of knowledge between your home country doctor and Dr. Bo Sun?

How experienced do you think Dr. Bo Sun is given you mentioned UC is not common in China. Do you sense he has treated a lot of patients?

How are you managing your treatment with him? Is it through sticking with largely the same set of medications for on-going and flare-ups that you had in your home country? Or is he suggesting something else?

Can you remember how much the enemas were?

I assume you can't get insurance to cover some of the consulting costs?


In terms of work, I had an internal transfer, but I may be able to offer you a few pointers. Is it possible to do PM on this forum?

Hi Timmy.

No, I didn't have to organise any knowledge transfer between my G.I in Australia and Dr. Bo Sun. I simply took my biopsy reports, photos of my colon and overall colonoscopy reports and gave them to him (which he photocopied). Having said that, I am sure a knowledge transfer would be very possible as my G.I in Australia offered it before I left and Dr. Bo Sun appears very receptive to these things.

I was actually quite surprised at how professional Dr. Bo Sun was (especially after the sigmoidoscopy). He is a member of the American Society of GI Endoscopy, European Society of GI Endoscopy and American Gastroenterological Association. Initially when I saw him, I had just arrived in Shanghai and I was only diagnosed a few months prior to arriving in Shanghai so I was still quite petrified by this whole chronic illness idea and how it could possibly get worse. I discussed quite a lot of things with him, asking about all the research I had done. He gave me quite a lot of examples of his other patients (some who have taken Remicade, some who are extremely mild). From that, I felt he was quite competant, thorough and has quite a few years of experience (he appears to be in his late 30s). He told me that Shanghai and Beijing actually have roughly the same prevelance rate of UC as compared with most western countries. He said UC was much rarer in the other provinces.

My current treatment is more or less the same as when I was in Australia because I haven't had any major flare up whilst in Shanghai (fingers crossed). He got me to religiously take my probiotics and up my Salofalk a little since I was having slight abdominal pain, but really most of his consults were more counselling sessions for me since I am the worrying sort. Having said that, the treatments he offers are largely the same as with most western G.Is and he follows the same progression of medication. He told me he has a few patients who have intermittently used Remicade but he doesn't like to use it too often on account of the cancer issue.

I am sorry, I can't remember off the top of my head how much the enemas were (and I lost the reciept). I do remember that you have to place a deposit when you order (equal to half of the full cost). For some reason I keep recalling the amount of 500rmb but I forget if that was the deposit I paid or the full cost I eventually paid. It might be better just to email Parkway Community Pharmacy as that is how I placed my order. Just email them with the name of the product and they will respond to you with the cost etc. You can email them in english.

I am studying in Shanghai so all costs were out of pocket, however I have saved all the receipts and when back in Australia I hope to be able to claim back some amount. Parkway Health is a expat medical center so the prices are quite high. Just a tip, if possible, try to buy any medication you need outside of the Parkway Health's internal pharmacies (unless you have no other choice) because I have found that they tend to overcharge on the medication.

That'd be great, any tips would be warmly welcome. PMs aren't possible through these forums but you can email me at floftie@hotmail.com

Also, a last tip, don't eat any street side food (such as BBQ lamb skewers etc.). They play havoc on a UCer's gut.

Hi MaxMillan - I've emailed your hotmail

Hi Max,

Have been trying to get in touch. Could you please let me know how to get in contact again?

Thank,
Timmy

MaxMilian said...
Hi Timmy.

No, I didn't have to organise any knowledge transfer between my G.I in Australia and Dr. Bo Sun. I simply took my biopsy reports, photos of my colon and overall colonoscopy reports and gave them to him (which he photocopied). Having said that, I am sure a knowledge transfer would be very possible as my G.I in Australia offered it before I left and Dr. Bo Sun appears very receptive to these things.

I was actually quite surprised at how professional Dr. Bo Sun was (especially after the sigmoidoscopy). He is a member of the American Society of GI Endoscopy, European Society of GI Endoscopy and American Gastroenterological Association. Initially when I saw him, I had just arrived in Shanghai and I was only diagnosed a few months prior to arriving in Shanghai so I was still quite petrified by this whole chronic illness idea and how it could possibly get worse. I discussed quite a lot of things with him, asking about all the research I had done. He gave me quite a lot of examples of his other patients (some who have taken Remicade, some who are extremely mild). From that, I felt he was quite competant, thorough and has quite a few years of experience (he appears to be in his late 30s). He told me that Shanghai and Beijing actually have roughly the same prevelance rate of UC as compared with most western countries. He said UC was much rarer in the other provinces.

My current treatment is more or less the same as when I was in Australia because I haven't had any major flare up whilst in Shanghai (fingers crossed). He got me to religiously take my probiotics and up my Salofalk a little since I was having slight abdominal pain, but really most of his consults were more counselling sessions for me since I am the worrying sort. Having said that, the treatments he offers are largely the same as with most western G.Is and he follows the same progression of medication. He told me he has a few patients who have intermittently used Remicade but he doesn't like to use it too often on account of the cancer issue.

I am sorry, I can't remember off the top of my head how much the enemas were (and I lost the reciept). I do remember that you have to place a deposit when you order (equal to half of the full cost). For some reason I keep recalling the amount of 500rmb but I forget if that was the deposit I paid or the full cost I eventually paid. It might be better just to email Parkway Community Pharmacy as that is how I placed my order. Just email them with the name of the product and they will respond to you with the cost etc. You can email them in english.

I am studying in Shanghai so all costs were out of pocket, however I have saved all the receipts and when back in Australia I hope to be able to claim back some amount. Parkway Health is a expat medical center so the prices are quite high. Just a tip, if possible, try to buy any medication you need outside of the Parkway Health's internal pharmacies (unless you have no other choice) because I have found that they tend to overcharge on the medication.

That'd be great, any tips would be warmly welcome. PMs aren't possible through these forums but you can email me at floftie@hotmail.com

Also, a last tip, don't eat any street side food (such as BBQ lamb skewers etc.). They play havoc on a UCer's gut.