Hi, I’m Emil. I just recently turned 19 and have studied at university level for approximately two months now. That’s also the plan for the coming five years. At the same time i began studying at the university I also moved from home and am now living on my own in a one roomer here in south east Sweden. Seems to be mostly Americans here so I thought that might be fun to know. I was diagnosed with Ulcerative Colitis in June 2012, when I was 18, right after my exam, from what I think is equivalent to High school. Before UC I played trumpet in a marching band. Me quitting had more to do with moving from town though. Maybe I’ll pick it up again.
I’m in a mild to moderate flare inflammation wise now, according to my Doctor. The odd part has so far been that I’ve barely had any pain at all associated with UC. I have diarrhea and urgency, especially in the morning and I also have to get up in the night. I probably go about eight times a day No visible blood though. I’m also tired and just feel overall crappy sometimes. It’s an odd feeling that is hard to describe that just makes me very ineffective in for example school.
I was hospitalized just a day after it was discovered that I had less than half the blood count that I should’ve had. I had some blood. I think it was three bags in total . Already in the forenoon the day after the hospitalization I had a colonoscopy and gastroscopy. I don’t remember much of that though, because they drugged me pretty hard. Pretty much some hours later i got my diagnosis, so at least it was quick. I was actually relieved when the GI told me that I had an inflammation in my colon. I didn’t think it sounded too bad and was relieved that it wasn’t anything worse.
I was put on Asacol 4.8 g/day. That didn’t help much at all, so they added the most loved drug of them all: Prednisolon 40 mg/day ( maybe it was the opposite order, can’t remember exactly). That didn’t help much either, so I was put on Remicade and some steroid enema. This was only about a week after my diagnosis. The Remicade seemed to work and I was out of the hospital within another week and after not too long I was having formed stools again and was feeling pretty good. I know I’m not alone on Remicade here so I’m wondering how you get it. Here in my new town I go to the pharmacy to pick it up myself and then go to the infusion center, while previously they just fixed it for me at the clinic. Feels pretty cool carrying around that kind of value. Little scared of losing it :)
Since then I’ve had a couple of full colonoscopies without any drugs apart from the one they rub in your a** ( Yea, I just had to brag about something, don’t know how common it is to be able to go through it without though). I had a couple of symptom free months.
Just some week or two after school started I was having diarrhea and alot of BMs again. It seems fair to believe that stress could’ve been a factor here. I was put on Azathiopurine and had my Remicade infusion earlier than planned. This time the Remicade didn’t do anything really and the Azathiopurine made me feel like shit, so I stopped taking that. So I’m still pretty much in the same state and still have to cope with school, which is demanding as it is even without UC. Sitting in seminars can be really stressfull since you’ve got no discrete or fast way of getting out of there if you would have to. Let’s just say I don’t like the idea of pooing my pants in front of 250 people that I’m going to spend the next five years with.
Even though my Inflammation currently is mild to moderate my GI has still mentioned surgery because I’ve already been on Remicade, which supposedly is the “best” medicine. So i’ve decided to test some different diets, starting with gluten free and then SCD if that doesn’t work. I haven’t had any probiotic yet either, so maybe I’ll try that as well. I’ve also thought about if smoking would be worth it before an ostomy. I don’t like the idea of smoking at all though.
Best regards from Sweden :)
Where I’d like to be in 1 year:
Symptom free and Inflammation free. Off meds, rich and with a lovely girlfriend :). If I have to be a bit more realistic it would be great just being on track with the education.
Asacol: Doesn’t do much. Been on it since diagnosis anyway. Currently on 4.8 g/day.
Prednisolon: Doesn’t seem to have made any difference at all besides from the moonface, acne and other bad things. Currently on 35 mg/day (tapering down).
Remicade: worked the first time, then not so much, so I probably won’t have it anymore.
Azathiopurine: made me nauseous. Not taking anymore. I have like a month’s supply at home though. It was stupid to take out all of it when I didn’t know if I could tolerate it. I’m feeling bad about wasting the tax money.
written by Emil
submitted in the colitis venting area