Hi, my name is Matt I am from Christchurch New Zealand. I have been diagnosed with Ulcerative Colitis (pancolitis) since May 2009 but had symptoms before that for about a year or so on and off. Just started remicade.
Some more about me:
Finished University have a BA in political science, history and a degree in economics (though wishing I had studied medicine about now!) Enjoy all kinds of sports, movies, gym, books etc.
Current Colitis Symptoms:
Been in a constant flare basically since 2009. Been healthy for maybe four months in that time but that was in the first half of 2010. Have tried pentasa (which I still take), azathioprine, methotrexate and now on azathioprine again and starting remicade (had my first infusion on the 17th) the azathioprine is thought to help keep it in remission once if it gets there.
Remicade and My Colitis Treatment So Far:
First of all what is the typical process for improvement on remicade?
I have seen some improvement in symptoms after the first infusion but it bounces around a bit. One minute I seem like I am getting better the next time I visit the toilet and I seem like I am going backwards. Urgency and frequency is down from before the infusions and most are getting more formed but the odd one is a mess and all is still above normal (normal ranging from once every three days to three times in one day) at about 4-5 times a day. It has been less than a week but after 3 and a half years of being sick I am over being told to have patience! So is this typical and should I expect the 2 and 3rd infusions to keep building on it or do you see the most improvement in your first infusion typically?
On a separate note just want to compare treatment that I have had. I have only been on prednisone only once when I was initially diagnosed in 2009. It put me into remission by the end of 2009/start of 2010 and weaned off. I wasn’t given it when I started Azathioprine and my specialist said that Azathioprine should be able to put me into remission on its own but all the reading I have done indicates azathioprine works best in keeping people in remission rather than inducing it itself and that people are typically given prednisone at the same time then tapered off. The Azathioprine eliminated all the blood, diarrhea and urgency for me but the frequency was still about 4-6bms. I am wondering if I gave that a fair shake or if I was ill advised. And what others were told by there doctors.
I am a bit weary of doctors as I went to one in 2008 I think and he told me the bleeding was hemorrhoids. It wasn’t very severe then and a year later my bowel went ballistic so I never saw that doctor again!
Would love to hear anyone else thoughts!
written by Matt
submitted in the colitis venting area