I was diagnosed at 14 and I am from the US. I am almost 18 now.
Medications: Prednisone, Lialda, 6-mp, Asacol enemas
My Story:
I was first diagnosed with ulcerative colitis at 14 and I am now almost 18. I first started showing symptoms in January 2007 when I was in 8th grade. I was not formally diagnosed until May 2007 and that it when I started treatment. I did prednisone and 6-mp first but nothing was working and my second colonoscopy in October 2007 showed the colitis had spread farther in my colon. Finally in March 2008, my parents took me for a second opinion at UNC Childrens (I was at Duke Childrens) and explore some other treatment options. I was then put a combination of 6-mp, Lialda, and prednisone which did the trick and I was able to come off the steroids fairly quickly. I was formally put in remission that summer but little did I know what was going to happen that fall from going unsuccessfully treated for so long.
First, I would like to talk about being a high school student with UC. During my first flare, I was going 8+ times just during the time I was at school that day. It was so embarrassing having to get up and leave multiple times a class and then the only option was the girls bathroom which never was empty. The stress and anxiety did not help and some days I just couldn’t bare to leave my house. I was so happy that I was finally able to get to remission before going back to school for my sophomore year and be healthy…well, that was short lived
October 6th, 2008 was the day I had my first kidney stone. I was at school and started feeling this achy pain in my back which gradually got worse. I thought it was cramps, then UC pain and finally it became so unbearable I had to go home. I was taken to the doctor immediately because my symptoms were similar to that of appendicitis (acute pain, vomiting, fever). The did a CT and said that I had a kidney stone, not appendicitis.
Since that day, I have had 12 kidney stones. My last one was at the beginning of October 2010. The theory behind why I created them is during the prolonged period I went untreated for UC, the severe dehydration made my kidneys form them. A question I have is are there any other people with UC that have had stones happen with their colitis??? It makes sense and I do believe that is why since I always have had a balanced diet and no family history of them. I really want to avoid making any more of them because they are so painful and I have passed every single one by myself with little to no pain medication mostly.
Now I am in my senior year of high school and have been accepted into my first choice college for next year. The reason I found this website is because I just entered another flare of UC. It has been strange and much worse than the first one since I have constant vomiting and extreme fatigue for almost 10 days now. I have no idea why this just all of a sudden picked up again with no warning. I have been put back on the prednisone along with increased doses of the Lialda and 6-mp (I have been taking these both for maintenance this entire time). I have just really had a hard time with this second flare. It has been almost impossible to function at school and I can’t keep any good amount of food down. I’m really worried about missing school and jeopardizing college due to all of this. I need some advice on what to do and just overall support from people who actually know what its like. None of my friends or other people at school really know or understand what is going on because it has been so long since freshman year. I wish I could just say “I have UC” but no teenager knows what this is which would require me to explain it to them. That I know would be way too embarrassing to talk about what actually goes on. I feel trapped within my own body, if that makes any sense.
I appreciate this site letting me vent, I really need it right now!
Erin
I was diagnosed at 14 and I am from the US
