Meet Emily, the Special Events Planner:
I am a 23 year old special events assistant working in Philadelphia. I was diagnosed 7 years ago as “severely diseased” and have gone through the usual ups and downs of UC since then. At this point in my life I am looking for support and to support others going through this disease – it makes it a lot easier knowing there are millions of other people out there who can relate.
The Lowdown With MY UC Right Now:
intestinal cramping, fatigue, bleeding, nausea, achey joints, loss of appetite. 8-10 bm’s/day
My Colitis Story:
Just over two months ago my life was almost perfect.
I had recently scored my dream job and my colitis had been in remission for over a year with the help of Remicade. Out of nowhere right before an infusion I started to experience some pain and bleeding indicative of a flare up. I heard it was normal to have “small episodes” between doses and so I waited until a week after my treatment to see if the symptoms would die down. They didn’t and I am now approaching two months of flaring.
I have had numerous flares in the past 7 years, mostly due to my lack of resolve in taking all of my medication and then some when I stopped responding to medication. Regardless of the cause, I was always able to handle the flares and not let them affect my life too much. This time the flare is different and so much worse. It is reminiscent of when I was first diagnosed, an episode that landed me in the hospital. The worst part right now is the cramping, pain so intense I am fairly certain childbirth is going to be a breeze after this. I have tried to shake off the “woe is me” feeling from the get go but after two months of not sleeping through the night it is getting hard to feel optimistic.
Not only do I have to deal with the physical pain
but mentally it is draining as well.
I see how worried my family and friends are and I feel added pressure to look and act like I am ok so they don’t worry too much. At this stage of the game I am done feeling like this is out of my control and am looking for any guidance or advice on small things that help get you through the day, diet, and exercise (my grandmother is insisting I take yoga). I am also here to offer any support or information I have learned over the past 7 years. We all know first hand how hard this can be and I want to feel like I am doing something to fight back against it.
Where I’d like to be in 1 year:
Completely off steroids and symptom free. Able to eat all of the raw fruits and veggies I want and to not have to make an exit strategy anytime I go somewhere.
Stopped responding to Asacol and Imuran after taking it for 5 years. Currently on Remicade, 20mg of Prednisone, and 40 mg Bentyl. Remicade until now was a wonder drug. You do experience a “remicade hangover” i.e. flushing, fatigue, grumpy mood, the day after but I gladly take this day in return for years of remission. I personally despise Prednisone because it does cause moon face and mood swings but in the past it has helped calm a flare. The Bentyl helps but only for a little while – I still experience multiple episodes of cramping through out the day and at least 2 in the middle of the night on the 40mgs.
written by Emily in Philadelphia
submitted in the colitis venting area