Ulcerative Colitis Tips


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19 Year Old With Colitis In Sweden – I Used to Play Trumpet

Introduction:

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.

Trumpet comic

Colitis Symptoms:

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.

Colitis Story:

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.

Colitis Medications:

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




Sweden

17 Responses to 19 Year Old With Colitis In Sweden – I Used to Play Trumpet

  1. Erin
    Erin October 8, 2012 at 8:50 am #

    hi, my name is Erin, im 18 and also in college. I was on remicaid for about five years when suddenly it just stopped working for me. (I got mine directly from the infusion center by the way). now, actually on Friday, im going to be starting humira. it is supposed to be a sister drug to remicaid but can work if remicade doesn’t. maybe you can talk to your doctor about that if your diets dont work.
    I have taken a probiotic on and off for the past few years but i dont notice any real difference.
    good luck!
    ~Erin

    • Emil October 8, 2012 at 10:02 am #

      Hi. It seems to be very common that Remicade (and probably other meds too) only works for a while. Way too short of a while in my case I think. I’m kind of expecting my doctor to put me on Humira, but I’m a little scared of the DIY part of it, apart from the not so nice side effects of course :). Too bad that probiotics didn’t seem to help you. I wish you good luck too :)

      • Coralie October 8, 2012 at 8:45 pm #

        Hi Emil

        I have only recently joined this group but have read the musings of a few fellow sufferers. I would like to suggest to you that it is early days for you yet. I think looking at diet is a better idea than letting them remove your guts. Once it’s gone, it’s gone. I saw my specialist the other day and he agreed that if he was in my shoes, he would want to hold onto his colon for as long as he could because you never know where or when a cure or great alternative remedy might show up. I have had UC since 2008 and have been through the drugs: Pentasa (anti inflammatory), Azathioprine (for a year, then it stopped working), Methotrexate injections in the abdomen (self administered) (that took some doing), and now Remicade, which makes my skin itch like crazy. Someone on this site said they went onto Humira and got a second auto immune disease for their trouble. So I would only consider that after all other options have been exhausted. Don’t you have enough to contend with? And I thoroughly understand how you feel about trying to retreat from the lecture theatre gracefully while not showing your inner turmoil. I am a teacher but have decided not to return to the classroom, for the same reason. I also am going to try gluten free and then the SCD. When I find it again, I will send you a link to a website I found for a great tasting gluten free brread. I have been putting off going gluten free until I could find a decent bread recipe as the stuff you buy is unpalatable. You might have more luck in Sweden, however. Congratulations on joining this website. I wish I had found it 4 years ago. Lastly, I definitely think yo9u should keep up playing the trumpet, but ditch the marching band!!!! Take up jazz!
        Cheers
        Coralie

        • Emil October 9, 2012 at 11:59 am #

          Hi. Yes, I definitely want to keeep as much gut as possible. I’m mostly concerned that it’ll be hard sticking to a diet beacause school takes up so much time. About the Jazz, I’ve played that too. The marching band wasn’t only marching, we had concerts too. I also played in a smaller group where we played alot of diffetent kinds of music.

          • coralie October 9, 2012 at 2:14 pm #

            Hi again Emil,

            Thanks for your reply. I didn’t mean to sound like I didn’t recognise the value of the marching band – only that you are often marching in the middle of a field with toilets at the far end of the stadium. Could be treacherous! I tried to learn the cornet when I was 43 yrs old. Not good. My lips buzzed so much I couldn’t say mmmmmmm for a couple of years without it tickling. I also joined a brass band for a short time. There were rumours that my playing wasn’t up to scratch and I would show them up at the Christmas parade. Lol. So I quit. Thank goodness.
            Do whatever keeps you happy and relaxed, and good luck with the studies. What are you studying, by the way? And are you Swedish? Or do you subscribe to this site in English? Lots of questions. Sorry.
            Coralie

          • Emil October 9, 2012 at 2:46 pm #

            *This is meant as a reply to Coralie’s comment, but the reply button doesn’t show upp for me* Thank you too for commenting :) I’m studying mechanical engineering. I’m Swedish and as far as I know this page is only available in English so I’m not sure about what you mean with that question :) Getting late here, so gotta get to bed.

      • Erin
        Erin October 9, 2012 at 7:14 am #

        Ya, im scared of that part to =/
        buy if other people can do it then i can too right?
        only 4 more days till i get to find out

        • Emil October 9, 2012 at 11:23 am #

          I dont doubt that you will be able to handle it :) I hope it’ll work for you.

  2. Gail October 8, 2012 at 11:37 am #

    Hi Emil, I was glad to read in your post that you are going to try a gluten-free diet and would HIGHLY encourage you (and others) to do that. I am new to this site and I find it heartbreaking to read these stories of people that are so unwell (and mostly young). If you can access food intolerance testing, that would be a really good first step but, if not, a self-imposed elimination diet would be the way to go. Take time to do some research. There’s tons of information on the internet. If you understand how a gluten intolerance causes inflammation, it makes it easier to realize that food and food allergies can wreak havoc on our bodies. The problem is it’s a little more complicated than just gluten. Often the gluten sensitivity creates the situation to cause other allergies, like dairy, even if it’s just temporary. I also was certain I had candida overgrowth, which required the elimination of other foods (like mushrooms) but only temporarily. I recently discovered that yeast extract is basically MSG in disguise. I have pretty much determined that I react to yeast extract, however, it may depend on how it’s derived. I just try to stay away from it as well. I have to confess I am very familiar with UC because my husband had it over 15 years ago and currenttly an adult son has a severe case, not me personally. I say my husband “had” it because he had his colon removed but I wish we knew then what we know now. It was the best thing at the time though. I got involved in food intolerance research as the result of a severe rash that I suddenly developed 3 years ago, in my 50’s. It took more than 2 years to clear it up entirely by trial and error. I once went back to eating regularly, thinking that maybe gluten wasn’t the problem, and it got worse. I even had to shower with gloves on (not easy!). I went to a homeopathic dr, so I also used some homeopathic remedies, took a probiotic that had about 8 different strains in it and 50 billion cells for about 5 months then switched to a less expensive probiotic that I still take usually every second day. Probiotics are really important. I continue to eat gluten-free and dairy-free as much as possible but do drink goat milk. I am trying to keep this short, which is hard to. Good luck to you. You have an advantage that Europe is way ahead of us with respect to gluten intolerance awareness. I am Canadian and we are even much further behind the U.S., although there is a lot of g/f food now readily available. It’s a bit of a challenge to change our way of eating (and always be reading labels) but it’s well worth it in the end. Also, if it works for you (or anybody), please help spread the news!

    • Emil October 8, 2012 at 12:01 pm #

      At least it isn’t cheap buying gluten-free supplies. Bread is like three times the money or something over here :S. I know I’m not glutenintolerant in the traditional meaning though (which would damage your small intestine, if memory serves me right), but I’ve read about a gluten free diet helping UC people. Since it’s less restrictive than SCD I thought I’d try gluten free first :) Let’s hope that awareness will come to North America soon too.

  3. joanna October 8, 2012 at 5:05 pm #

    hey emil. remicade stopped working for me, too. that seems pretty typical for that drug. i am on 6mp but it has causing me major neuropathy and i’m not okay with that. the numbness has started traveling up my leg which makes me very concerned.

    i am doing paleo but following SCD guidelines, too. it has helped a lot. also, check into FODMAPS. that is the next step in my diet.

    • Emil October 9, 2012 at 11:31 am #

      Hi. Yes it sure seems very common for Remicade only to work a certain amount of time. 6-MP seems to be such hard on not only the disease, pretty “hardcore” drug. It is hard to find time cooking SCD legal foods. You’re pretty much left to starve if you’ve forgotten to bring food to school and you gotta stay there late working with some important project :S I hope the numbness will go away or that you’ll find something else to control the UC.

  4. Johan Nidelius October 11, 2012 at 11:18 pm #

    Tjena Emil!

    Det går att bli bra utan operationer och mediciner. Men de är bra på att stoppa den värsta inflammationen. Min rekommendation.är enligt detta http://www.youtube.com/watch?v=KLjgBLwH3Wc och.meditera 20 minuter om dagen för att minska stress, sova mer är också ett måste men inte lika effektivt som meditation. Jag bodde i Kalmar och pluggade när jag fick min diagnos // Johan 26

    • Emil October 13, 2012 at 12:42 am #

      Hej Johan. Meditation kanske är något man ska prova. Stress verkar vara en stor faktor och just nu är det så himla mycket att göra att jag knappt vet vart jag ska ta vägen. Måste bara försöka ligga i och hoppas på att det blir bättre. Jag hoppas att att det gick bra för dig med studierna :)

  5. chris October 12, 2012 at 3:24 am #

    Hi Emil
    I was also diagnosed with UC 12 years ago when I was in university.the doctor started me on something called mesalazine and pred + eye drops called atropine and maxidex for the inflammation in the eyes when it got really bad. They worked well but ten years later I developed mild osteoporosis from the pred so the doctors have now switched me to humira which works like a charm.realistically though the only reason I get flare ups is stress.whenever I had an exam in uni I’d flare up.nowadays I work as a freelance industrial designer and I know whenever I get a big project I’m gonna get a flareup. it gets better with time,you’ll get used to when a flareup is coming and take extra special care to minimise the unhealthy food and step up the meds to avoid a full blown flareup. you’ll figure out what meds, habits and foods work.talking about foods I never really manage to sick to any diet but there are some key foods which make it worse like bread which I limit to one slice a day max. My goal right now, and has been for a while, is eliminating all extra stress from my life bys reaching a level of financial security where I don’t have to accept every work project that comes my way but only those that are stress free :) that is my only real advice to you.learn how to eliminate stress or at least minimise it. Take care Emil and good luck with everything

    • Emil October 13, 2012 at 12:37 am #

      Hi Chris. It seems like ten years on prednisone is a pretty long time. Nice to hear that you have found a drug that works for you. About financial security, that’s what I’m worried about I’m not going to have if I won’t be able to finish the education. Must be a big relief to be in that position of financial security :)

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