My story is a long one, so prepare yourself. It starts my freshman year of highschool. At the time my diet consisted of processed foods, tons of sugar, artificial stuff, basically just anything that is bad for you I consumed. And I was stick skinny-always have been. With that said, towards the end of my first year of highschool I began to see little amounts of blood in my stool. I had never had any prior stomach issues, only psoriasis, which I later found out was caused by the same thing that caused my UC. Anyways, I first thought it was my menstrual cycle and brushed it off. When it kept popping up, and my stomach started doing this weird rumbly gassy thing when I ate, I told my mom. She had not a clue to what it could be. We made plans to call the doctor, but it was a Saturday, so I 'whatever-ed' it and spent the night at my friends house.
I'll skim over this part of the story because the juicy details come later on. Basically, we saw a few doctors before seeing a GI specialist. I got a colonoscopy and endoscopy and they diagnosed me with the almighty Ulcerative Colitis. I had no idea what that meant, never even heard of it. It was simply putting a name to what I was feeling. They called it a mild case, which at the time it was. I missed a little bit of school but it was so manageable. That summer went by with little worry. Except for the time I had to ride in a car for 8 hours during a flare and nearly lost it all over the back seat of my step moms car- not my fondest memory, but I was accustomed to holding it in. TMI? Yea right, on this website???
So life wasn't easy, and I didn't feel normal, but it wasn't torturous. At the start of my freshman year my doctors decided to put me on Humira. STRONG drug for little ol' me. They had me on an adult dosage, and the pain of that injection... words can't describe. Like a thousand bee stings in one part of your leg. Ok, I guess words can describe. So I sucked it up and dealt with the pain, focusing my attention to the fact that it was supposed to kick in by the end of the week! I couldn't believe I would finally get to live my life again! End of the week, that must be one strong drug. Little did I know.
Things were goin' good for about
three weeks. Still eating like crap, surprisingly not feeling like it! Things changed the week of homecoming, I thought I was having a flare. I went in to see my doctor, who said I shouldn't be flaring while I'm on Humira and so I did a stool test. She told me I had a bacterial infection, and I took the antibiotics she prescribed to me, happy it wasn't a flare and I'd soon be back to 'normal'. The infection went away, I went to homecoming, all was right in the world again.
Until it was not. A few weeks later, the infection(later on known as C. Diff) came back-with a vengeance. I had never felt this level of pain before. I was going to the bathroom 15-20 times a day and every single time I would get this horrible uncomfortable on-a-scale-of-1-to-10-it's-an-11 pain that would have tears coming to my eyes which were screwed shut. I dealt with it for 2 days, and when the antibiotics weren't working fast enough and I couldn't take down any food, my mom took me to the hospital.
My week long stay at the hospital consisted of lots-and I mean LOTS- of crying, depressing thoughts I had never ever thought before, pain, doctors touching my belly, pain, being woken up in the middle of the night, pain, more crying, and more pain. It helped that my room was really nice and had Netflix, but I couldn't really appreciate it to the full extent.
I could go into so much more detail about
it, but I'm already writing a novel here. So, I'll tell you how they LOADED me up on prednesone, vancomycin, flagyl, and STILL Humira. My mom had had enough. My grandma and her did all types of research on C. Diff and found out about
fecal transplants (FMTs). After hard work, convincing, some begging, and the switching of hospitals (to Johns Hopkins), I got one done two months later. Oh, I also had another bout of C. Diff right before the transplant. That makes three!
I was healed once again, back to normal, my old self. They still wanted me on Humira, so I stayed on it. I'd still have mornings(they're the worst for me) where I'd go to the bathroom up to six times, leaving me feeling gross but the feeling would go away. All was well again for about
three months. Then, I was crying on the phone to my mom because I just went to the bathroom and felt the C. Diff pain and I was terrified. No, no this isn't happening to me, I thought. But it was.
Another week in the hospital, another FMT. This time, I went off the godforsaken drug that is Humira. (It was lowering my immune system and destroying my body. You should listen to the voice in the commercial that briefly warns you that Humira can in fact lower your ability to fight infections.) I missed the last three weeks of school, barely feeling better in time for finals. This time, I had no drugs to help mask the pain of all the irritation going on inside of me. So I dealt with it, cried a lot, took probiotics, and started eating very healthy. For two weeks I went without sugar. It was so hard for me, a 16 year old girl who lived off of Candy bars. Also, every time I had C. Diff I dropped from about
98 pounds to 93. Just thought I'd throw that in there.
Fast forward about
6 months, to present day. I often get flares, often don't feel good, often want to cry. I take bentonite clay, top notch and expensive probiotics. I eat healthy and organic, reading the ingredients on everything I consume, and watching my sugar intake. I often take Imodium so I can get myself to go to school and not miss work. I'm in my junior year now, almost 17. I still often feel as if this disease is taking over my life. I still live in fear of C. Diff. I think if I ever had an arch nemesis, I'd nickname them C. Diff. They'd probably have to kill my cat to earn a name like that though.
Please, if you read this entire thing leave me your story, especially if your around my age. My best friend has IBS and can relate to me in many ways, but she manages more than I do. I'm just so tired, and I feel as if I deserve to feel... GOOD. Even on my good days, I feel mediocre. It can be hard to constantly eat cooked veggies and meats, esp with school and work and being a fricking teenager! I don't have time to cook myself full meals for myself every night. It's hard. It's so hard. Today was one of the bad days. I just needed to get it all out, share my story with people who can relate and have HOPEFULLY some positive feedback.
