My name is Emily and I was diagnosed with UC in May 2013. I just turned 21 years old and I am preparing to have my first of 3 surgeries in about 6 weeks to remove my colon (assuming I can make it that long!)
Some more about me:
I am a nursing student from Portland, Oregon. I love running, baking, and doing pretty much anything with my friends and family!
Currently my symptoms include about 10 BMs every day and pretty constant abdominal pain. I am also on prednisone though, which tends to keep things somewhat under control (and remicade… which hasn’t done anything for me) so I am able to go to school for the most part although it is getting harder as I taper the prednisone and get closer to my surgery.
Preparing for Surgery at Age 21
I started having diarrhea in January 2013. I was running a lot, so I thought it had something to do with that and didn’t worry too much. I also started feeling very fatigued, but I was a very busy college student so that wasn’t too concerning either. I decided to “power through” until the semester was over, which is when I started seeing blood. A colonoscopy quickly revealed that I had moderate/severe UC and I was started right away on prednisone and Lialda. I also had dangerously low iron, so I began iron infusions as well. In September 2013 as I tried to taper off the prednisone (in hopes that Lialda would keep me in remission), I ended up in the hospital with 20+ bathroom trips/day, lots of blood loss, extreme weight loss & dizziness (low BP and very low iron). I started another prednisone taper, this time with 6MP, which eventually failed as well. At the same time, I tried cortifoam, probiotics (and LOTS of other vitamins/supplements), the SCD diet for a few months, and pretty much anything else people recommended. Finally, I started remicade, which I had high hopes for, but unfortunately that also failed and left me in the hospital again (January 2014). The surgeon came to talk to me in the hospital about the possibility of surgery, but I pretty much immediately dismissed this option. I think I was in a bit of denial and still holding out hope for the remicade. My GI decided to do a double dose of remicade and move it to every 6 weeks to give it one last try. I started my semester of school the day after I was discharged from the hospital.
I have now had 5 remicade infusions (3 of them double doses), and unfortunately it has done pretty much nothing. I am also currently on prednisone, which is the only thing that seems to slow the frequency and stop the blood, but even that isn’t working as well as it did in the beginning. Also it isn’t good to be on that as long as I have, so I can’t be on that any longer anyways. So, now I have accepted that surgery might be my best option. Right now, my plan is to try to finish my semester which ends May 1, and my surgery is schedules for shortly after that. My GI doc is not too excited about waiting that long, but I am determined to not miss any more school if I can help it If I get any worse in the next 6 weeks though, I know that my health comes first and it is better to go into the surgery as healthy as possible.
I still can’t believe how fast all of this has progressed (it hasn’t even been 1 year since my diagnosis), but at the same time it feels like I have been dealing with this for a long time. Even though the surgery is scary, I am excited to have some control over my life again. I am ready to have a normal social life again instead of always worrying where the nearest bathroom is, eating pretty much nothing, and having embarrassing accidents in public. Not to mention getting rid of the puffy prednisone face… I am SO done with that! I am so encouraged by all the success stories and everything I have read on this site so I wanted to get involved in hopes of helping someone else as I start this journey as well.
written by Emily B
submitted in the colitis venting area