I’ve had ulcerative colitis for four years,since my senior year of high school.
I was first given the standard procedure of large doses of prednisone, with the usually dreadful side effects. I especially hated how my armpits were waterfalls of sweat, my hunger uncontrollable, and I puffed up like a blowfish just in time for prom, yippy. It even affected the college I had to go to. Trying to be positive I continued to push on. Sadly though the steroid induced remission was short lived and it was back to my toilet throne too many times to count a day.
I was then put on 6mp where it effectively put me back on remission but weakened my immune system to the point where I got MRSA(methicillin-resistant Staphylococcus aureus), two cases of absesses, a week stint in the hospital with pneumonia and two more trips to the emergency room all in the span of three months. Thankfully I was taken off of it and after a 2-3 month flare I was put on remicade and it worked!!It was a miracle drug. I was able to enjoy my sophomore and junior year of college and pretend I lived a normal Colitis free life.
Then reality hit. My Remicade infusions progressively got to higher doses and shorter times in between infusions. I tore my MCL playing football. Social and personal problems led to emotional highs and lows and everything began to compound. By the beginning of my senior year I knew that remicade could no longer let me ignore the fact that I had UC. I now had extreme bouts of pain in the abdomen and constipation. All these years though exercise has been my outlet, my stress reliever.
But now I am as mobile as a sloth after thanksgiving day dinner.
My joints ache, I lack energy and motivation, my shoulder is impinged, my left knee feels it belongs to an 80 year old and my right big toe is infected(the high doses of remicade are starting to hit my immune system hard). Yippy fucking skippy. I have looked into the SCD diet and hope to go on it in the next coming weeks but may not have the income to support doing it effectively. This is not a woe is me piece i justed really needed to get this off my chest cause I think this may be the first time I can’t keep my positive upbeat attitude going anymore.
At times the pain is to the point where I fly home from school in my car, jump in my bed, and just roll up into a ball for hours on end.
After living what seemed to be a very active healthy lifestyle I feel broken, run down, and hopeless. There’s too many social, emotional, physical, and spiritual problems to even bother continuing to list them. And as I sit here crying not knowing which direction to turn i just need to know that someone/anyone has experienced the physical deterioration of what should seem like fixable injuries not heal? Is it the UC, the remicade, or something worse? I am 21 one and i feel like im 90. Is there light at the end of the tunnel? This goes beyond the 20 billion trips to the bathroom and bloody diarhea, I could always deal with that. Its the fact that I feel like my entire body is broken. Im sorry if i scared any newly diagnosed with UC but after stumbling on this site I had to vent and hope that tomorrow is better. Thank You and god bless.