Introduction:
Hola! My name is Yasmin, and I have Ulcerative Colitis. I’m actually approaching my second year after my official diagnoses. Colonoscopy? I’ve have four. Endoscopy? I’ve had two of those. Oh yeah, I’m only 20, I work full time, and I am a full time student. It’s safe to say that trying to balance everything and attempt to be normal is quite a struggle. I’m finding that to be the hardest part of all of this, attempting to find the normal parts of life and enjoy them. My friends are great, they try to be really understanding, but as I’m sure you know this is a lot more than just going to the bathroom.
Some more about Yasmin:
I would describe myself as a fairly old soul. I like to stay home and crochet a lot, or even go to the movies, no popcorn though, popcorn is the worst. Living in Orlando, Fl theme parks are a huge aspect of the social scene, so I honestly spend a lot of time at Disney World. Everything in Orlando is very spaced out through the city, so something I have learned is to carry a bag in my car at all times with a change of clothes, extra undies, and baby wipes. It comes in handy in case of a flare.
Symptoms:
Joint Pain, costochondritis, diarrhea, bloody bowel movements, constipation, fatigue, abdominal pain, urgency to use the restroom, even fecal incontience.
Finally Ready to Share
This all started on Christmas 2011. I was hospitalized with severe abdominal pain come to find out I was suffering from Pancreatitis. I suffered from chronic Pancreatits for 3 months before deciding to switch doctors. Frankly all my doctor was doing was stuffing me full of pain medications, and I hate taking pills, but when I complained of a lack of bowel movements or a rush of bowel movements she never said one thing about IBD non the less UC. Even when I brought up the idea of IBS she simply brushed it off, and blamed it on my pain medicine (at the time Roxicet 2X a day). I knew it was time for a change after I was seeing no results, she had run no tests on me, and something was seriously wrong.
So I switched doctors, and I couldn’t be any happier. Dr. Q (Super long doctor name), is literally like my older, best friend, we talk, I cry sometimes, we laugh, I yell at him. Safe to say we are close, at least I hope so after the many times he’s seen the inside of my intestines. So I brought my mom along on my first visit with him, and within 5 minutes of speaking with him he suggested a Colonoscopy and an Endoscopy. This was already more than my previous doctor did. The prep wasn’t so bad though it surely wasn’t fun, on the verge of my 19th birthday I was simply excited for answers!
Boy did I get them, I was stunned to discover I had mild Colitis on the left side of my colon and acute Gastritis. Surprisingly no sign of Pancreatits at all, which is surprising because my previous doctor was still attempting to pump me full of drugs. I began a mild regiment of Ascol and a short period of Prednisone. I was on the Ascol and things so began to be getting worse. I was having more and more bowel movements…and I was beginning to have accidents. The first time I pooped my pants I was on my way home from a dinner, in my car alone and I cried, I cried all the way into the shower. It was horrible.
Dr. Q suggested a clinical trial, since his office does quite a few of them. During the screening process I was disqualified because it turned out I had contracted C-Diff. So like any other patient I was put on a Flagyl regiment. No luck. I had to go an Infectious Disease specialist because my C-Diff was extremely aggressive. I was placed on three different dosages and separate regiments of Vancomycin. I was derailed and with spirits low I had finally over come my C-Diff spat.
Once that was finally over my doctor did a Colonoscopy and placed me on a Apriso, after I asked him to change my medication. After this Colonoscopy I learned that my mild left sided Colitis was much more moderate at this point. (Communicate with your doctor, if you don’t feel like something is working, change it) See, my body does this horrible thing where it cooperates with me then decided to just flare up all day everyday! I was placed on Prednisone a few times to help jump start the medication to see if my body would respond, and it would, just for a little.
Today I am still on the Apriso, though I am currently in a Clinical Trail, so I take extra supplements 9 times a day. After my most recent Colonoscopy a few weeks ago, I have learned that I have moderate colitis though out my whole colon. After my Trail, it seems as though IV infusions might be next on the list of medications to try. After my stint with C-Diff I get regular stool samples for them.
My struggle is trying to balance being a normal student, friend, and perhaps just person. I am extremely sensitive and controlling when it comes to what I eat and drink. I know that I am sick, and that I have to take it easy, but I hate it so much and I just keep pushing myself, sometimes to the point where I am in extreme pain. I know it’s no good. But my UC has taught me who my true friends are, and that nothing can get in my way, because I refused to let UC prevent me from reaching my dreams.
My family and friends call my UC Regina, as in Regina George (yes from Mean Girls), because, well my UC isn’t very nice to me all the time.
The thing is, I used to be extremely embarrassed about it, and I wouldn’t tell anyone. Now I even have a twitter account dedicated to sharing my journey (@UCTummy) because of a school project, and I ended up sharing my story with my whole class, and now the world. I am no longer ashamed of this. Even within the UC community I would have never thought of sharing my story like this. Or how scary it can be at the ER getting a rectal exam, but if my story can help just one more person who was so scared just like I was, then it is all worth it in the end, and maybe sacrificing that normalcy is OK. Cancelling plans is OK, getting seats to the concert instead of standing is OK. I’m just a little different.
Medications:
Ascol, Prednisone, Flagyl, Vancomycin, Apriso, Clinical Trails-Do Them!
written by Yasmin B
submitted in the colitis venting area
I’m actually approaching my second year after my official diagnoses. Colonoscopy? I’ve have four. Endoscopy? I’ve had two of those. Oh yeah, I’m only 20, I work full time, and I am a full time student.
