Hi,

The bleeding usually gets under control once the overall inflammation in your colon is under control. That doesn't always happen right away. I've never been on Pentasa so I can't speak to that, but there are many drugs in the spectrum of UC treatment that can be used. Not all drugs work for all people so it's kind of an experiment sometime.

In your situation, I would write down all your questions to ask your doc, ie what's the plan, how long will it take meds to work, if it doesn't work what's next, etc. Take your supervisor with you to translate your questions. You doc may not have all the answers yet, but that way you're beig proactive with trying to gather information.

This disease can be so isolating as it is, and being so far away and not being able to communicate fully just adds to the isolation. Reach out when you need to.

Welcome and I want to let you know that there are wonderful people here to reach out to. Like rmb said it is an isolating illness and not being able to communicate it more so. I have never used Pentasa but once the inflammation goes down you should bleed less. Let us know what you need and we will respond as best we can. Making a list is a great idea and you can find a lot of information on the web about medications.WELCOME! binetp

Thanks for the warm welcome!

I'll follow your advice and make a list. They're asking for a blood test, so we'll be there early enough for my supervisor and I to sit down and go through them/translate.

I have another question to submit to your greater knowledge- after almost a month of troubles I'm kinda hoping for remission soon. Supposing they do find a good medication for me, what length of health could I look forward to? Or does it vary so much from person to person it's impossible to say?

It's so different for everyone. For me, when I was first diagnosed,I was put on medication that kept me in remission for several years. When my disease flared up again, we changed medications, and I've been in remission since (since 2009). For some people they have a harder time getting the disease under control for sure and it takes some degree of experimentation to find the right drug.

Good morning, and I hope you're feeling better soon. I once spent time teaching in a rural area of Japan during a flare of ulcerative colitis, and I can empathize with what you're going through. This may be difficult in Japan, but I would try to avoid the seaweed as much as possible. Some kinds of seaweed are a source of carrageenan, and this is used to induce ulcerative colitis in lab rats so that the disease can be studied. Most other parts of the standard Japanese diet should be fine. You will often be told by doctors that diet has no impact on ulcerative colitis, but most of us have had a very different experience.

Thanks @rmb and hartsfield!

Thanks for the heads up about the seaweed. I'll look into that some more, it sounds interesting.

As to diet and stomach troubles, my Japanese doctor told me that I shouldn't have any stomach/intestinal pain with UC (the day that I went in complaining of stomach upset/pain for the past 36 hours). From what I've read on this forum, there is often pain/distress caused by UC...should this be raising a red flag for me? This doctor is supposedly a specialist in diseases like this.

Yeah, not sure what your doc means. I wonder if he's making a distinction between UC and Crohn's as in Crohn's I think (but could be wrong) that there is usually more pain involved. But I've had pain with my UC. There's also often a great deal of cramping.

I don't know if it's necessarily a red flag at this point. I just think docs are so text book that they focus on classic symptoms vs what each individual may or may not experience. If you find after a while that what he says doesn't add up, you can always try to see someone else.

Also, terminology can get lost in translation too so there's that component.

Good luck to you - keep a food journal - trying digestive enzymes with meal consumption might help you... Sometimes dietary measures can help with flaring it certainly has for me... Hope things improve for you

UC is a lonely illness, and only other sufferers understand. My family just worries when my symptoms are bad, but don't really understand the fatigue, etc, so i am constantly having to remind them that i am having a flare up. its really frustrating.
I was prescribed Pentasa, and currently am using Salofalk, which is the same. It got me into remission when i was first prescribed it, but now, i had some job/financial stress which triggered a flare up which has gone on for months, and this drug isn't helping. I am going to see the doc this week, so hopefully he'll have some good news. I was lucky cuz when i was first Dx, the surgeon that did the colonoscopy had family members with UC so she was more understanding than most, and had tons of information for me. I have a new GP, so not sure how helpful he will be.
if there is any way you can find a doc that speaks English and has some specialization in IBD, that would be great, but i guess when you are in a foreign country you take what you can find.
the whole diet thing is a crapshoot (pardon the pun), i think. i haven't been able to figure out anythign that makes my symptoms better or worse, but for some, there are definitely triggers. Popcorn and seeds seem to make my symptoms worse, but not enough to definitively say that they are the cause of the symptoms.
I highly recommend trying probiotics, that is one thing that really seems to help.
i'm new to this group too, and am loving the great advice and understanding from all of you!

Oh, and also, i didn't used to have pain, but now i get pain (sometimes cramping, sometimes burning, sometimes stabby pain) rather frequently from my UC, and i think that is common. i also have a distrubing amount of blood, which i believe is also common. i think it might be worth trying talking to another doc if the one you are seeing doesn't seem familiar with the symptoms, cuz if he doesn't know the symptoms, then may also not know about treatments, etc. or, maybe some info is getting lost in translation. I hope you feel better soon. good luck!

Welcome to the group! Have you been to www.ccfa.org? It's amazing and can explain the disease and all the treatments available.

I just had an idea... What if your parents or someone back home can find you a GI and they can talk to you on the phone or email you? It might not work... But I thought having a western English speaking dr even for one consultation might be helpful. Also keep writing things down. Great advice RMB!

Also, pentasa is in a catagory of the least aggressive therapies. I am on Pentasa becuase it's apparently better for CD but lialda and asacol are basically the same thing but I believe it's less pills- and lialda is only taken once a day. I hate how many horse pills I have to take of that stuff. It's mesalamine and it just coats your intestines so that it's tougher for inflammation to occur. Sometimes you need more ammo to treat that inflammation and once it's under control (as RMB said) you'll feel all better! I have experienced 3 years of remission. I feel great right now too!

My heart goes out to you, being all alone in another land. Try to enjoy yourself as much as you can because it must be such an amazing experience!

Can I also ask... How were you diagnosed? I saw you are getting a blood test, but did you have a colonoscopy? Did they follow up with a lower GI series with contrast? Were you diagnosed in Japan???

Thanks : :)

Hi everyone, thanks again for your ongoing support! I've been mostly blood free for a couple days now, and that's a huge relief. The doctor is going to keep me on my current medications for a few more weeks and then try tapering them off (I'm in a steroid suppository now as well, which makes me laugh). He also gave me some probiotics yesterday which should help the indigestion.

I've also hit upon a breakthrough that's really helped with my stress. I'm contracted to be here for another year and a half, and everyone in my organization puts a lot of emphasis on not breaking the contract no matter what. Reading this forum helped me realize that I have a chronic illness that might get bad enough that I need to go home. I might have to *gasp* break my contract, but I don't feeling a wrenching sense of anxiety when I consider that anymore. I'm going to take things a day at a time, make a point to enjoy myself, and if I become sick enough that I need to go home I shall do so without any guilt.

Finally, @ashley: I was diagnosed here in Japan. I got a colonoscopy, but not a "GI series with contrast". I'm not even sure what that is, but I'll look it up. The colonoscopy was fairly traumatic...they gave me a dose of anesthetic that will work on Asian bodies but apparently wasn't enough to knock me for a loop. After some incredible pain they gave me three times the dose, and that seemed to do the trick ^^; According to them most Japanese get colonoscopys without any drugs at all....I call shenanigans.

A GI Series isn't always the protocol. I was diagnosed with UC with just the colonoscopy.

Glad the bleeding is starting to stop. That's great news. And yeah, big picture dictates that a broken contract over a major health issue is a minor thing. Glad you've resolved that for yourself. A day at a time is an EXCELLENT approach.