Posted 6/27/2014 11:52 AM (GMT -7)
I finally made an account. During my routine flares I would always find myself on this site from google, searching my various symptoms and medicines. I figured now, going through a moderate flare, I would create an account and share a brief history, what's helped, and any feedback that might make me feel better.
From NY, currently living in NYC, diagnosed when I was 15/16. Ulcerative Colitis. Hospitalized twice when I was 17 and 19 for a week, no food and IV prednisone @ 60mg. Face blew up, gained 40lbs in 2 weeks, all that fun stuff.
Since then, I seem to have a flare up every year, usually starting around spring. Has anyone else noticed a pattern with reoccurring flareups? My flareups usually consist of urgency, cramps that precede an immediate movement. Mucus and blood. Many times my BM's will be formed but there will be some blood and a lot of mucus. Sometimes I have to wake up in the middle of the night, multiple times. Have trouble passing gas, usually requires a quick bathroom visit w/ some mucus. Mornings can consist of 10-15 trips to bathroom. Handful of others during the day, usually slows down as immodium kicks in.
Currently I take:
Remicade every 2 months @ 7.5 (Lenox Hill),
Asacol HD 400mg (4 pills),
Immodium (2 pills),
Metamucil (2 pills),
And Prednisone when I experience flares, usually 40mg then taper in 5's every week or two.
Previous medicines include: (may have forgotten a few):
Prednisone, Prednisone, Prednisone,
Whatever the equivalent of Rowasa is with a steroid instead of mesalamine,
and probably a handful of others I can't remember.
Some things I struggle with are stress and the traumatic experiences that come with UC. I've noticed that I've created routines due to all this. I feel like I need to be completely empty before I leave the house. I get anxious thinking about leaving the house. I end up going to the bathroom multiple times in the morning, sometimes 5-10. This creates further anxiety because at that point I don't know if I'm empty and ready to leave. Sometimes I think I am ready, get to the subway, have a huge cramp, and have to find a bathroom at the next stop or something. This creates confusion in my head, because if I've gone 5 times before leaving the house and thought I was empty, now I realize I wasn't. The next day becomes more anxious, as I have no definite way of knowing when to leave.
Another problem after years of having a flare or being in remission, during the times I am in remission, I am unable to stop the "checking of symptoms" and the attempt to empty myself in the morning. I feel like since I'm constantly stressing myself out, even in remission, I create the symptoms that lead to a flareup in the first place.
Lately I've been doing hypnosis with a doctor at Mount Sinai. She is affiliated with this program at UNC, which leads the country in GI research. http://www.ibshypnosis.com/ The website is kind of old, but the program has been very helpful in managing my life. I've also recently started taking Zoloft to help with the OCD related to colitis trauma. It's hard for me to measure how helpful it's been. Luckily, I work at a computer all day, so I am still able to make it to work, albeit I do show up pretty late. I've disclosed to my boss what my medical condition is and I just stay later to make up the day. Right now I've been doing an 11-7 shift.
During times of high anxiety, I pack a Tumi carry bag with a change of underpants, plastic bag, and a pack of wetwipes. I also keep a pair in my desk draw. While accidents are very rare, if I am unable to go home this has saved me a few times. I just put the soiled underwear in the plastic bag after cleaning up and throw them out.
What happens now? My doctor wants to do a flex-sig next week to see my current state of inflammation. We will either raise the Remicade after another Prometheus blood test (don't pay more than $250 for this) or start some new drug called "Entyvio". I don't know anything about this drug and don't even see side-effects online.
Not sure what else to say, just thought I would share my experience. If anyone has any questions or comments, please share.