It’s been a while for me since I last logged on to this site and I have read many of the stories that people have put up and to think that I was alone in this world was wrong. I have ulcerative colitis. I’m facing surgery, known as Restorative Ileoanal Reservoir, where they remove your entire colon, create a pouch with the small intestine, and stick an Ileostomy bag on the side of my stomach during a 2-month rehab. While it may sound confusing and it was until it was music to my ears when the doctor said that I would be, “normal” and there would be no pain. I thought maybe this wasn’t so bad after all.
No pain, a feeling I get in doses while I’m on Hydrocol, Prednisone, and Asacol. I was diagnosed with UC in 2004 and since then my life has been flipped completely upside down. At first, I was losing large amounts of blood in my stools and it scared me. I didn’t know what was wrong. I was very tired, couldn’t sleep, couldn’t focus on my school work, and I couldn’t feel “normal” going to the restroom. I knew something was wrong. I went to see the doctor on my college campus and he didn’t think nothing of it, stating that the bleeding was from a “sore bottom”. I knew otherwise but who am I to question a doctor? He gave me some drugs that would suppress the loose stools but it did no good later.
That was in the summer of ‘03 and everything seemed to return to normal. I still felt tired, more so than ever before but my stomach started to ache more and more. Soon, these aches turned into sharp cramps. I would run back to the same doctor on campus and explain to him the situation. He would gives me pain medication to suppress the cramping. It goes away but then, months later at Christmas, I got sick like never before. I passed blood so much I was in the bathroom for 30 to 45 minutes at a time, just sitting there, sweating, and trying to catch my breath. I would get out of the restroom and appear white as a sheet and nearly pass out. My parents rushed me to the hospital where they stuck IV’s in me to hydrate my body. The cold chill of the IV was always a comfort to me from that moment on. That following January, I meet with my GI doctor who schedules me for a colonoscopy.
I returned to college with a date with the GI and the unknown colonoscopy on the first day. “What will he find?”, was my question. Sick and exhausted with an empty stomach, I go in the office and lay down on this table where this nurse sticks a needle in me and then ‘poof’ I’m out. I wake up where the GI tells me that I have ulcerative colitis. What the hell is that?
From that moment on, drugs played a huge role in my life. The cost of asacol forced me to try generic brands and that made me worst, forcing me to vomit to the point where I’m dry heaving for a week. My diet is altered. Drink a beer, pay the price. My left side would swell and “roll over”, a phrase I use to describe when the left side of my stomach would relax after sharp pains. Eat fast food, pay the price. Multiple trips to the bathroom would soon follow after eating McDonald’s food. Since I’m a Phys Ed major, you would think I would know better but no, I enjoyed eating those late-night 1 AM double cheese pizzas from Dominos, downing it with a cold Dr. Pepper.
Years of “winging it”, finally took its toll. Last August, after years of asacol, going to college for six straight semesters, coaching high school football, working at my job on campus, I had to shut everything down. I was getting worst. I changed my diet to where I didn’t eat “as much” fast food as before but it was too little, too late. I would be on the football field and then I would cramp like never before, basically kneeling down with my hand to my side. I would sit down on the sofa, doing the “Al Bundy”, a phrase I use to describe when my left side would swell or ache, I would place my hand in my pants to apply pressure on the swollen side. I’ve already had my first accident in the previous March so I was concerned that I would face that issue again. And I did.
Coming back from football practice, without warning, I would have this accident that felt like it burned up my insides. I rushed into my apartment, praying that no one would see me. How humbling, how embarrassing, how insignificant was I! Something was seriously wrong with me. I had been prescribed prednisone four times in the last five months and nothing was working. Loose stools after loose stools, bloody stool upon bloody stool. I knew I needed to see my GI again. Typically, he schedules me once every six months but this was different. Later, I tell him what’s going on and he refers me to a surgeon to discuss the possibility of a Proctocolectomy. I meet up with this surgeon and he calls me, “a poster child for this kind of surgery.” That surgery was the Ileoanal Reservoir. I had to drop coaching, withdrawl from my semester of college, bassically put my life on hold for this surgery. Then I was informed of the complications. Possible surgeries in the future due to infections, permanent ileostomy bag, possiblity of not having an erection or an ejaculation, which would hender my ability to have a family. I’m 28 years old, never been married and I’m at the stage of freezing my swimmers? I was scared and frightful that I would never be the same again. But there’s no more pain. At that price?
Now I’m battling the UC with Chinese Herbs, Acupuncture, and a strict diet that contains no wheat, no gluten, and no dairy. I nearly cried when I saw that they had Non-dairy Soy Mint Chocolate flavored Ice Cream. I nearly cried when I saw that they had Wheat-Free, Non-Dairy pizza but they are so expensive. Here’s the thing, I have no insurance. I’ve been paying for my $217 a bottle of asacol with my college loans and what insurance company would accept an individual with a pre-existing illness?
I’ve been feeling better. The pain is very little since the diet change. However, I still have my days of 8-12 bathroom trips at day, usually in the morning. I still have my accidents. I mean, they nail me without warning. I was in one of the college buildings the other day and felt something odd with my stomach. I told my friend that I would be right back. Before I could turn the corner, ‘BAM’! I was so embarrassed and ran to the bathroom as fast as I could before someone would see me. I didn’t have my cell phone so I couldn’t call anyone. After cleaning up, I stuck out the door and found someone walking down the hall. I explained to the person where my friend was and if she could get my friend. She did and when my friend came to the door, I told her to get my keys from the room, my cell phone so we could talk, and take her school bag with her to my car so that no one would see her walking in with a pair of men’s jeans in her hands. She is a wonderful friend and has an idea of how much pain I go through. But still, I’m so hell-bent on doing things on my own, this was a massive step down for me.
I’m still on the asacol, like it has done me any good. I’m fighting this illness, yet I feel it will be the end of me. I don’t know anyone who has dealt with this illness but I’ve been battling and fighting it since forever it seems like and it has taken its toll.
