Hi guys,
It's been a long time since I posted here. The last time I had a major flare up was when I was living in Japan back in 2010 and I ended up being hospitalized for three weeks. I still live overseas, in Korea now though, and I've been in the hospital for four days and counting.
Anyway, from about 2011-now I wasn't exactly in remission but I wasn't exactly flaring either. I'd have a week or two here and there of mild symptoms, blood, gas, and so on before returning to relatively normal stools. In 2011 I went on Prednisone twice to curb two of the worse small flareups however generally I've kept it under control. My doctor here has been pushing me to go on Remicade in this period because I have 100% coverage in this country but I haven't because if/when I ever do move back to my home country (Canada) with my wife, I don't know if I'll be able to continue the injections or not. I can't afford $2000+ every other month or whatever Remicade costs.
Enough about that though... my current flare started about a month ago in earnest. When I was in Japan my big mistake was letting it go for a really long time untreated before I got adequate help but thankfully in Korea I have a good doctor/hospital so there is never a problem getting insurance-covered Salofalk enemas (2g per day) or Asacol (x9 per day). When the flareup started kicking in we played it by ear, then about three weeks ago I started getting cramping, urgency to the toilet, etc to the point where I couldn't work/go to school without visiting various public bathrooms along the way/taking a taxi/almost losing it in my pants.
Everytime I put an enema in my body wanted to get rid of it immediately... everytime anything was in there my body wanted to evacuate it.
This isn't to mention the joint pain. I usually get mild joint pain with flares however before this flare even really started, I started getting horrible pain in my upper back between my shoulder blades. At first I thought it was related to the martial arts I do (Kendo) but the pain persisted and for days I wasn't able to raise my arms above my shoulders. I even started going to get physical therapy with my wife not even thinking it was related to UC because at that time, my UC symptoms were so mild they could've just been in passing.
When I came to the hospital on Friday they did a CT Scan, X-Rays, a stomach test (they put a tube into my stomach to look for blood), a short Colonoscopy (my rectum couldn't tolerate even the thinnest fibre optic camera), they did bloodwork, etc. Since Friday I've been on IV steroids, antibiotics, nutrition, etc. but something started to bother my stomach which in turn caused me to vomit several times a day and made my stomach hurt regardless of what I put in there (even eating medicine itself made me vomit). This freaked me out because the first time I was admitted, this didn't happen (although they refused to give me any kind of steroid in Japan) and my doctors don't really seem to know what to make of it. For the past two days I've been taking medicine to calm my stomach... first through the IV and now oral since I can handle that now.
I went from having 15+ small stools per day to fewer than 8 which is where I am now. I think a big part of it is because my stomach doesn't hurt as much and my stomach pain was a big motivator in going to the bathroom a lot (wasn't sure if the pain was from my stomach or cramping).
There is still blood in the stools, especially the further apart they become in time. Mostly in seems that the bottom part is fine and the blood drips onto it later (lovely, I know). I should take more enemas but I still have a hard time keeping them in.
I feel about %30-40 better than I did when I was admitted but still have a ways to go it seems. No certainty on when I'll be able to eat food or anything. Starting tomorrow I'll be going back to school in the mornings and returning to the hospital in the afternoon which is good.
Does anyone else have these kinds of experiences? Every flareup seems new to me and I just want to see if I'm alone or if this falls within the range of normal. The doctors/nurses don't seem to tell me much of their findings as keeping the patient totally in the dark is the norm on this side of the world, though they do understand my cultural background (one of the doctors is American) so if I protest a bit I can get a clearer picture of things.
I just started antidiahrrea medication so let's see how that works. Sorry this turned out being so long, it's been a rough week. Any replies are greatly appreciated!