First flare-up in years, ulcerative proctitis/colitis

Hello,

First time posting here.

I've had Ulcerative Proctitis since I was about 14 but was diagnosed at age 19. I'm currently 26.

A few months ago I moved from one country to another (South Korea to Japan; my home country is Canada) and I've been having a lot of stress as a result of that. Since before the move, I started having horrible anxiety, panic attacks, palpitations, you-name-it-I've-had-it... I actually posted about it in another forum. It seems like my immune system crashed and every possible problem I could have had started to happen in my body. One of the reasons that I haven't had any flare-ups in years is because I'm a smoker but when I started getting stressed out I started to notice blood in my stool and it's been all downhill from there.

Just when my major anxiety symptoms were starting to cease and I was getting back to life as normal, my Proctitis started flaring up even worse than before. When I first arrived here I had my bi-yearly colonoscopy and they told me that I had Proctitis (I thought I had UC because it runs in my family but thanks to my smoking it never developed).

Anyway, my flare-up symptoms (it started about two/three weeks ago):

- Frequent feeling of urgency even if there is no stool
- Diarrhea / gas + really powerful farts
- Lots of blood, turns the toilet water red and speckles all over the toilet, it's like a spray. Sorry if this is gross.
- Weight loss/no appetite

...and now, thanks to all the blood loss, I think I'm developing iron deficiency anemia! I'm not too worried about this though as I can just take iron pills.

For medication, I'm taking the Japanese equivalent of Salofalk tablets (5-aminosalicylic acid). My sister has UC really bad and has had it most of her life and she takes Salofalk tablets as well as the enemas. The Japanese doctors don't like to prescribe much by way of meds, they wanted me to only take 2 tablets per day while my doctor back home was urging me to take between 9-12. I had to seriously twist their arm to get them to prescribe me enough to be sufficient (and it cost me a small fortune). One thing they won't prescribe me is the enemas... they say that all I need to do is rest and take my tablets then my Proctitis will go away. They gave me some herbal remedies that aren't working at all and I've been resting all week to no effect.

So I had my parents send a few boxes of Salofalk enemas and they arrive tomorrow. Hopefully that will help. I'll also pick up iron tablets soon.

Out of curiosity, what would happen if I let a flare-up go untreated for too long? It has been quite a while.

Does anyone get really sleepy and have weird pains because of flare-ups?

Does stress really cause flare-ups? The Canadian medical association's website says that Ulcerative Colitis/Proctitis are not related to stress in any way and that stress has no effect on the occurrence of either disease, yet my body and some of the doctors I've seen have been saying different things...

Other than that, what should I do? What food should I avoid? Am I going to be okay?

Thanks...

Post Edited (Wavefunction) : 7/28/2010 4:25:42 AM (GMT-6)

Hi, and welcome to the forum!
Your symptoms sounds very familiar - they sound like the same symptoms I get when I'm having a flare. So - I'm not a doctor at all, just someone who's had UC for 24 years - but I have gone through that kind of thing more times than I can count, and I am ok!

The issues with getting the pills and meds is tough, gosh. Are the Salofalk pills the same ones you've seen before, not one of the new larger dose extended-release formulations? In the US, our equivalent, Asacol, is being promoted in a 800 mg/pill now instead of the traditionial 400/mg.... I'm just wondering if they wanted you to take less pills because the pills are a stronger dose...?

Good you're getting the enemas. Some folks here have squeezed vitamin E capsules into an enema bottle and used that to some benefit.... you could search the site for those posts.

And some folks are helped by probiotics - are those available there....?

Soluble fiber helps some folks - I am the poster child for that - so Metamucil, Benefiber, Citrucel... the non-UC population looks at these as laxatives, but for us they can bulk up the stool, help clump it together and also make it smoother to pass.

If you start any of these supplements, many of us find it best to start on small doses and work up to whatever the package suggests.

Re food....we all have different experiences. I am one who finds diet has no bearing on my UC, except that when I'm in a flare I need to avoid raw fruits and veggies, gassy foods, greasy foods. One of the easiest things on my digestion is sushi, actually.

Stress...? My answer is a definitive "sometimes." lol When I am nervous in a long-term way, anxious to the point of not sleeping, etc... sometimes it seems to bring on a flare. Other times it doesn't. My flares seem to be brought on be a "perfect storm" of season, how run-down I am, maybe stress, ...?

Hope this helps. Folks will respond, and I hope you get some helpful ideas!
Hang in there!

I would also suggest getting stool cultures done, especially the one to check for C difficile infection.  My son (who has proctosigmoiditis) was having a hard time for a while before I asked for these tests to be done.  Sure enough, C diff.  Since that was treated and he has gotten on Florastor his colitis has been much quieter.

You really shouldn't drink while on the meds. My neighbor just moved to Japan. She is teaching English to Japanese students. I have no idea what motivated her to do this but she couldn't get a teaching position here in south Jersey....it's all political anymore, not how much you know.

Christine1946 said...
You really shouldn't drink while on the meds. My neighbor just moved to Japan. She is teaching English to Japanese students. I have no idea what motivated her to do this but she couldn't get a teaching position here in south Jersey....it's all political anymore, not how much you know.

I'm not a big drinker anyways, I just hope that my peers/coworkers are understanding. In my university days I met a lot of people who really didn't understand people who didn't drink... if you said that you didn't drink alcohol, they'd never let it go/leave you alone about it. I did drink at the time so it wasn't a big deal, I just got harassed about being a vegetarian :P

I'm teaching here because I like living abroad and because if I went back to teach in Canada, I'd be put on a waiting list of 50 applicants waiting for 1 baby boomer to retire so we can all fight to the death for their job... Thus, I will stay in Asia and teach. Besides, Western kids are horrible... I have friends back home who teach in the US (because there were no jobs in Canada) and they're having all sorts of stress-related issues. My one friend teaches in New York (in a bad area)... she had to take six months off because she had a nervous breakdown and she's the same age as me.

quincy said...
Good the enemas are enroute!

They should be used nightly till all is well, meaning no symptoms. Then tapered to a maintenance dosage.

REgarding drinking...it's not a great idea in excess regardless...especially for your liver.

Feel better soon,
q

Sounds good. Hopefully my symptoms will clear up in a day or two... I'll report back!

quincy said...
Clear up in a day or two....optimistic over on that side of the world!! don't be in too much of a hurry. How many enemas are coming your way?

q

Two full boxes... So about 20 or so! Hopefully it will clear up fast enough that I have leftovers in case of another flare-up!

Yes.... I would ask the family to ship more over, pronto. I find they take more than a few days to kick in. Then what I do is taper to a dose that will keep me from flaring and continue them indefinitely.... and at the first sign of any increased symptoms, I go back to every night for a while. Research has shown we flare less when also using them as maintenance, and they cut down on the long-term cancer risk. To me, that's worth doing them twice a week or whatever.

Re drinking..... I don't drink much, but I do have a glass of wine and occasionally two (with a meal) with no issue. When I was younger I did occasionally drink more and more potent things, but... I find no pleasure in that any more.