Ulcerative Colitis Tips


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1 Year On, Colitis Is Trying To Kick My A$$

Introduction:

I’m Jamie, I’m 17 and from Dublin, Ireland. started my UC journey in January 2011 which finally ended in a diagnosis in September 2011. Currently battling a massive flare.

Colitis Symptoms:

  • Bloody stools
  • unformed stools
  • urgency
  • cramps
  • mouth ulcers

 

1 Year With Colitis:

So, I recently just past my year milestone, when I first realised that I was showing irregular symptoms (February 4th 2011 was when I really realised that I’d been bleeding for over 2 weeks straight every time I went to the toilet.) And really, since then a LOT has changed.
I’ve got my colitis slightly more under control, it’s about as bad as it was this time last year, but since I didn’t get really bad until about June 2011, I won’t complain too much!

I’ve been diagnosed with severe ulcerative colitis, pancolitis to be exact.
I ended up hospitalized with massive blood loss, with a hemoglobin of 3.8 and potassium of 2.6, I had a PICC line inserted and was given blood and potassium infusions, as well as high doses of IV steroids

I’ve been on only 1 course of steroids so far, and tried a lot of mesalazine based drugs (pentasa granules and tablets, salofalk granules and mezavant which is branded lialda in the states)
from Early December to Late December, Mezavant XL (Lialda) was working for me and I gained a 2 week remission, but after it’s short lived glory I went back into a flare.
My colon is starting to remind me that I don’t have mild to moderate ulcerative colitis, I have severe, and it’s not going to let me forget easily!

The doctor has suggested that I take another course of prednisone, 40mg tapering by 5mg every 5 days until the flare subsides, then if that doesn’t work the next options are Imuran, 6-MP or Methotrexate, or alternatively Humira or Remicade.

At this stage, I don’t care what I have to do, I just want to be well.

Has anyone with severe ulcerative colitis had any success with anything other than steroids and immuno-supressants?
I’m kind of reluctant to start anything like Imuran, because I’m someone who goes to a LOT of live concerts and gets in the crowd and ends up sick every single time! I could only imagine how much worse it would be if I was immuno-suppressed.

Also, if you’re on anything I mentioned, can you tell me if it’s worked for you? and if so, at what side effects? I’ve heard people say that Remicade makes their hair fall out, pred nearly left me bald last time, so I’m not looking forward to it again!

I’m sorry this was a bit all over the place, I’ll try better next time..

Medication:

I took pentasa for a while, It doesn’t work at all! felt like a placebo to me. (1g 3 times a day)
Salofalk granules, the worst once daily treatment! it literally didn’t break down in my gut, i’d be crapping out little pieces of it, it was nasty! (3g 1 time a day)
Mezavant XL is a great drug, it truely does help with symptoms of colitis and even gave me a small remission! (currently on 4.8g 1 time a day, started at 3.6g)

Prednisone is a horrible drug, but it’s a miracle, it makes you feel well almost instantly, beware of nasty side effects though. (starting a 40mg course tomorrow, tapering by 5mg every 5 days)

written by “JamieIsLame”

submitted in the Colitis Venting Area






5 Responses to 1 Year On, Colitis Is Trying To Kick My A$$

  1. Jaimee February 12, 2012 at 4:58 pm #

    Dear Jamie (I like your name)

    Hang in there. Let the prednisone calm you down, then your doc will help you find a med that works. Remicade helped for me, but everyone is different. I don’t think I catch bugs more than before, it just takes a little longer than before to get over illnesses. I try to take care of myself as well as possible. I’ve been in control (not remission) of my UC for years now. Keep the faith. You can have a normal life!

    • Sandra February 15, 2012 at 10:47 pm #

      Dear Jamie, I’m new to this site and to UC as Im not long diagnosed, about 6 months ago… And I’ve been hospitalised 3 times with 3 bad flare ups since. Not very nice but I’m taking the dis – ease a lot more seriously now and minding myself/following SCD diet / reduced alcohol etc.. I was so glad to hear ur from Ireland , as I am too.. Sligo . Your the first from Ireland I’ve came across with UC. Kind of reassuring,. Having UC makes me so down and unhappy at times .. I keep thinking of what life was like this time last year an if things will get better or ever be the same again, sorry for sounding so depressive!. I really hope u get tru ur flare up and go into remission.. Uv had a tough time of it.. Really feel for u and wish u all the best.. .sandra

  2. Sinead February 15, 2012 at 5:48 am #

    Dear Jamie,
    you poor thing to get colitis at 17, I hope you are doing alright. I had remicade infusions and they went fine. I’m Irish but I live in Holland and here the procedure is to pre-inject tavegil and prednisone to prevent any allergic side effects of the remicade, such as itchiness or rashes. It took a long time for the remicade to control my colitis (13 weeks) but it worked instantly against the joint stiffness. I had no side effects that I am aware of apart from I believe my hair turned a bit darker. I take azathioprine (imuran) and pentasa granules daily as maintenance medication. My doctor told me you need to take imuran for 3 months before it takes effect, that’s why it’s known as a maintenance medication and you start taking it while tapering off the ‘main’ medication. I was diagnosed with colitis in 2006 when I was 32. Over the years I’ve found that getting enough sleep, a good diet and setting boundaries help a lot with keeping it away.

  3. Chris November 22, 2012 at 4:27 pm #

    I have a story with good and bad times regarding my colitis, I’m 34 from London and will share it with you tomorrow as its getting late.

  4. Laura February 14, 2017 at 2:41 am #

    I know this is old now but anyone looking to Take Imuran/Azathioprine, it hasn’t affected my immune system. Been on it 2 years. Had zero side effects x

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