Hello everyone, my name is Kimberly and I am 34 years old. I live in Hawaii, I am married and have a 9 month old daughter. My family is the reason my life is so wonderful; they are the reason I can deal with having Ulcerative Colitis and strive to get better!
I was diagnosed in 2001. In 2000 I started seeing blood and mucous in my stools everyday. A year of this went by before I finally saw a GI doc and had a colonoscopy. I was diagnosed finally and at the time had no idea what I was dealing with.
Right now I am just getting over a flare that started in August. I am having about 3-5 bowels a day that are just barely moving away from being diarhea. I see just a little blood but am much better than I was just 5 days ago.
From 2000 to 2009 I had occasional flares with just blood and mucous, with 3-5 bowel movements a day, but no diarrhea. I would say during this period it was just a nuisance to have UC. I could still pretty much function as normal, I just was a little tired from losing the blood and just had more urgency to go. In 2009, I had my first severe flare. This flare brought me to the ER with diarrhea 10-20 times a day, blood, fever, inflamed eyes, and chills. I was put on prednizone and after a couple months went back to almost normal. I then went into remission, had a baby, but in may 2012 a second severe flare came about. This time I went straight to the GI doctor and got on prednizone right away, but after stopping the meds in June, my flare came back even worse in August. I was back to bloody diarrhea 20 times a day, only this time I went back on prednizone and it only helped a little. I went down to about 15 bowel movements a day. My doctor request ed for me to go on Remicade. Unfortunately it took over a week for me to get it. In the meantime I ended up in ER again with a fever, painful hemorroids, chills, and lots of pain. I spent 4 days in the hospital and it was so scary! They were just pumping pain meds, antibiotics, steroids, and finally the remicade in my IV. I felt like I was never going to get better and my heart was just fluttery. I had been sick like this for over a month and it was so painful to go to the bathroom.
About 4 days after remicade I finally started to slow down and get better. Now I am at about 3-5 bowels a day that are less diarhea more normal and less blood. I have my second remicade shot next Tuesday.
They are fighting my flare aggressively, with not only remicade but still prednizone, endocort, imuran, and canasa.
The plan is to get down to just the remicade
in the next couple months.
Being on all these meds freaks me out. It freaks me out too taking the Remicade and Imuran which shuts down the immune system! I know that is what is needed for me because of the nature of this disease but it is scary.
At my last colonoscopy in August of this year, they saw a lot of inflammation and even saw some in the small intestine. The GI doctor says there is a chance I may have crohn’s instead of UC. But all these years I have always been told UC.
I also must point out I love food and I think it may be my enemy! And here I take these meds that make me want to eat more! I am trying so hard to deal with this. I often wonder how others with my problem do with this?
Where I’d like to be in 1 year:
I want to have a second child in a year, so even though my GI doctor is saying I may need to be on remicade for years, I will likely want to be off it after a while so I can have another baby. And I’m not really sure I want to be on a medication like that for long term anyway, if I can avoid it.
I started on Asacol and Rowasa as ways to handle my flares. Moved on to prednizone for my first bad flare, with Asacol and canasa. Now for this flare, prednizone, endocort, imuran, canasa, probiotics, and remicade.
It was scary that prednizone worked until this last flare. But it seems either the imuran or remicade is now working. I hate taking all the meds but am so relieved to feel better.
written by Kimberly
submitted in the colitis venting area