Living with UC – A Teenaged Girl’s Perspective

Intro:

I was diagnosed with Ulcerative Colitis in 2012 when I was 16. I’m on my second year living with UC. My last colonoscopy was in May.

Some more about me:

Something interesting about me… well I used to be really into volleyball (I had to stop playing because of my condition). I also model for some clothing companies in Boston/Providence, which is so fun and I would love to continue to work with fashion in the future! I’m from southern Massachusetts.

Symptoms:

I currently go to the bathroom about 4-5 times a day. My stool is totally loose and it hurts pretty bad. I only bleed when I’m in a flare. I have stomach pains constantly; it sort of feels like when you’re really hungry (passed the stomach growling stage) but it hurts more when you eat. Dealing with this 24/7 for 2 years gets old pretty fast, as you can imagine.

Living with UC – A Teenaged Girl’s Perspective

I was diagnosed with Ulcerative Colitis in 2012. I was only 16 at the time and, as a teenaged girl, saying it was a nightmare would be an understatement. The first week that I showed symptoms, (liquid/bloody stools and incredible stomach pains) I didn’t tell anyone. I was embarrassed and thought “I probably just ate something funny”. I remember thinking “imagine if this just never goes away… that would suck”, but I had no idea what was in my future.

I finally couldn’t handle the pain any more or the urgency that I had to always go to the bathroom. I told my mom what was going on and how I was pooping straight blood for the past couple months. We went right to the emergency room, which was exactly why I didn’t want to tell her (I hate hospitals). I was a sophomore in high school and I had a big volleyball game that night, which made everything worse because as I was sitting in the hospital bed all I could think about was how bad I wanted to play in the game. Anyway, at the ER they gave me an IV which immediately gave me my old energy back and I felt so much better mentally. But I still had pain so the doctors referred me to a local gastroenterologist. Being 5’11”, I have an adult sized body, so they sent me to an adult doctor. I didn’t at all feel comfortable with this doctor, so my mom and I decided that we would rather drive an hour to Children’s Hospital in Boston.

My doctor at Children’s tried me on a ton of different medicines to treat UC, all of which I was unresponsive to. My mom started to do research on holistic treatments and diets that others found relief in. I found that the Specific Carbohydrate Diet helped my comfort level a great deal. Again, being a teenager, this also sucked, not being able to pig out on junk food with my friends:(. But after getting sick enough times, I decided I would rather eat healthy and make my symptoms more bearable.

My doctor at Children’s didn’t seem to believe me when I said I was feeling better from diet changes and he kept saying that “there are no studies that prove diet helps UC”… which is bull because I clearly felt better with the lifestyle changes I made. He said since I was unresponsive to everything, the next step was surgery to get my colon removed. At the time, I didn’t feel like we exhausted all other options, so surgery wasn’t even on the radar for me. We changed to a doctor at Mass General who is so much more open minded to other treatments.

My mom and I are curious that I may have Crohn’s Disease in my colon. I seem to find more relief from Crohn’s treatments than ones for colitis. My current doctor at Mass General firmly believes, based on my most recent colonoscopy (which showed the disease had spread greatly since my first scope), that I have UC and that the only thing that will make me feel better is surgery. He knows I am really apprehensive about getting my colon removed, since my uncle got his removed and still had symptoms after, so he is respecting my wanting to try every possible option first.

Now, the next step for me is an antibiotic, Vancomycin, which I started yesterday. It has shown some positive results with others, but my doctor warned me that he doesn’t believe it will put me in remission. If I don’t feel any better after a week, it isn’t going to work (so fingers crossed). If that doesn’t work, surgery is next. My doctor warned me that if I continue to have symptoms and continue to be unresponsive to treatments, this could develop into colon cancer in future years and I will need to get my colon removed anyway to save my life. That’s really all I needed to hear to get me to actually come to terms with the fact that I am going to have surgery.

With me going to college in September, I would rather get this done sooner rather than later. So over Christmas vacation, I will be meeting with a surgeon at Mass General to learn more about the procedure. Saying that I’m terrified is an understatement and I’m not in a good place mentally. Writing has always helped me cope with things and when I found this website I knew I had to share my story (which clearly isn’t even close to being finished yet). I find a lot of comfort in knowing that I’m not the only person going through this so I would just like to thank everyone who shares on this website because it has gotten me through some pretty rough nights. I would greatly appreciate any advice or acknowledgments that anyone has. I’m a really open minded person and I hope to make connections with other people like me. At least we have each other! :)

Medications:

I currently take 6 Asacol a day, (3 in the morning, 3 at night) 3 Vancomycin a day (1 in the morning, 1 in the afternoon, 1 at night), 2 VSL3 a day (morning and night), and a cap full of Miralax a day (whenever I feel like it). This combination of medicines has gotten me to feel the best (still not good though). In the past I have tried a lot of different medications… I did get some relief from Lialda and Mercaptopurine, but just not as much as I do with my current medications. I was on Remicade for a couple months and was totally unresponsive, but it did give me new moles and skin tags which freaked me out so I no longer get the infusion.

written by Kelly H

submitted in the colitis venting area