My name is Saleem, I’m 19 years old (turning 20 pretty soon here ). I was diagnosed with uc (screw capitalizing this vicious disease!) at the tender age of 16. I actually had symptoms when I was 15 however and I will be getting another colonoscopy and an endoscopy within the next couple months. Hopefully looking forward to surgery within the next few months (when I get health insurance again).
Some more about me…
Some stuff about me is I really enjoy running (I was a long distance runner in high school), I also played football and basketball. I love playing RPG video games, and many a long nights have been spent rigging out on Skyrim (or the latest Elder Scrolls game). My absolute favorite TV shows are: Suits, Burn Notice and The Office.
What I’m currently doing with my life: Had to unfortunately drop out of school this quarter due to uc. However I hope to transfer to the University of Washington next year with a major in Law Societies and Justice and a minor in Poli Sci. Although I’ve been thinking of changing to a double major after surgery and studying immunology. For employment I teach Jr. Engineering classes to elementary school students, I also model and do brand ambassador promotional work. I’m also writing a book, it’s about a superhero who is diagnosed with uc and well, comedically has accidents (I would have become depressed long ago if I didn’t use humor against my condition). Lastly I throw for profit parties and EDM shows.
Bloody diarrhea, cramping, excessive sweating, incredible urgency, exhaustion, fatigue, plus a bunch of side effects from pred but I suppose that doesn’t count in this section.
My Personal War with uc
My story starts in my sophomore year of high school. I will say I was… kind of a unruly teen. I was expelled from school my freshman year for brawling; and had to finish out the year at an alternative school (where I picked up smoking cigarettes and drinking). After transferring to a different school district, I soon learned that girls didn’t really like guys who smoked, especially at the age of fifteen. I couldn’t figure out exactly when my symptoms started, but after learning that quitting smoking sometimes has a big impact on uc starting, I could trace back the start to about when my parents convinced me I should quit the cigs. Anyways I picked it back up again eventually, but I started seeing strange blood in the toilet. Obviously at the age I was I was quite a bit nervous to mention my symptoms and said nothing about it, since there wasn’t really any pain; just blood. However my actions were becoming worse and worse, so f or my own safety and future both my parents and I decided that military school was a must.
At military school I excelled, I was one of the first squad leaders, student council vice president, leader of student tutoring, had the highest GPA in the academy as well as some of the highest physical fitness scores. Unfortunately for me cramping and bloody diarrhea started to become normalcy. The pain once got so bad I cried myself to sleep in the barracks. I couldn’t bring myself to say anything to anyone as I was a leader at the academy and was worried about my self-image (seems rather foolish now). I ended up living those six months and still graduating with honors. When I came back to regular high school I was still excelling, however the symptoms got so bad I decided to finally tell my father what was going on. He immediately called the doctor and I was given that nasty stuff that empties your bowels for a colonoscopy.
Enter, ulcerative colitis. At first the words: uncurable disease scared the crap out of me. I was terrified, I mean what was I going to do? However sulfasalizine seemed to do me pretty well. I used the bathroom more than most people sure, but the cramping wasn’t all that bad. I started the track season strong, running a 5:15 mile, which for a guy my size (My body type builds muscles easily but doesn’t tone as fast) is brilliant! However in my senior year things got pretty bad. I would start to have little accidents, that are… quite scary to hide in high school.
Luckily for me, I devised my own method to deal with the disease. Ever morning I would get up at 5:00 am, I would run 4-5 miles, and then drink a giant cup of coffee, in an effort to empty my bowels. This worked pretty well, as long as I didn’t eat very much throughout the day.
Unfortunately when college came, I decided to take a full course load and work two jobs. I would work about 40 hours at the gym (sometimes 18 hour shifts with school directly afterwards!) and then 20-30 hours at a real estate company. This took it’s toll on my body but I wasn’t worried, after all I could do anything! The blood started to come a lot more though, and I turned to drinking.
Slowly but surely I became well known in the party community, I would have all the addresses lined up, and for the first time since being diagnosed I felt popular and powerful again! However the drinking for some strange reason was actually slowing down my bowel movements, leading to me having issues at work. I had to quit my job, it was becoming too hard for me. We decided to try new medications, however unbeknownst to me, my father had cancelled my health insurance in an effort to save 70$ a month (the real estate market was really bad I guess…).
My doctor put me on pred, and aza, at first it was a miracle! the steroids helped me so much! I went back to school, I picked up numerous high paying odd jobs from connections I had met in the party scene. However then the side effects started, I never had acne as a teen, not once! My entire face began to break out, my body started bulking fat, even though I went to the gym seven days a week two hours a day.
I stopped the pred, I just couldn’t take it anymore. I am now not drinking as much, I don’t go out as much on the weekends. I am taking sometime to let my health get better until surgery.
My family has been my greatest support system, they’re generally there for me (although they can’t understand my pain). My friends? Perhaps not so much, at this age they’re pretty much just girl and party obsessed and can’t be bothered with much else. However to my buddy Kellan, who said he would be there through my entire surgery, and even come to the gym with me afterwards so I could get back into shape; I thank you! My big sister Vanessa, Alex Dtov my business partner; so many aren’t there for me in this trying time, but you guys stuck it through .
uc tried to destroy my life, but it didn’t work. I’ve still traveled to nine different countries, climbed Mt. Kilimanjaro and done a lot of other cool things. I will win this war against my disease, and for everyone out there with it? I’m there for you, anytime, anywhere; because I feel this connection with you guys. We all feel the same miserable pain, and with unity we can beat it together.
I won’t lie though, about 90% of the time I’m super sad :/. I try not to think about what I could have done if I was healthy, instead I focus on what I will do in spite of my sickness.
Current medications: two azo pills, one probiotic, three peppermint stomach soothers, plus some other shaklee supplements. Plus on two remicade infusions so far, currently looking at the J-pouch surgery. Also seeing a homeopathic doc from India tomorrow.
If ever I can recommend something, DON’T TAKE PRED! Well you can if you want… I would just strongly recommend against it. I will never touch that stuff again, I don’t care if i’m dying; the side effects just aren’t worth it to me.
written by Saleem
submitted in the colitis venting area
Please add me on facebook , I’m always up for a chat as I only know one person with uc, (interestingly enough she’s my neighbor, we worked at the same gym and she went to school with my cousins). https://www.facebook.com/saleem.juma.7