My name is Shannon, I am 21 years old and I found out I had UC when I was 17. When I found out my family and I weren’t really sure what to expect because we had never heard of this disease.
Some more about me:
I must say I don’t really have an actual “hobby” I enjoy being around my family and friends. I am from a small town in Ohio, and if you’ve ever been to Ohio then you know there isn’t much to do.
Currently my symptoms are very bad. I am bleeding with every stool about 6 times a day and I am vomiting. I cannot hold anything down and if I drink something I am going to the bathroom immediately and at least 3 times, just for taking a drink. I feel very inflamed and the prednisone didn’t work this time, usually it works like a charm. My doctor tried me on Remicade and that didn’t touch anything either. My doctor said he is now out of options for me and isn’t sure what to do besides surgery and going elsewhere for more opinions.
Emotional Roller Coaster
When I found out I had UC I was 17 years old and a junior in highschool. For being a young junior and having to run to the bathroom about 10 times a school day it became pretty embarrassing. I was going all day long, as soon as I woke up maybe 3 times before leaving for school and about 7-10 times a day at school and even more when I was home. Driving to school sometimes was the worst, it could be a freezing winter day and I would have to go on my way and I would need to roll the windows all the way down so I wouldn’t sweat and get all worked up.
I told my mom about my bathroom issues and she called my family doctor and he wanted a stool sample, I went in and gave him what he needed and a few days later we got a phone call that it looked suspicious and we needed to see a specialist. After searching for a doctor and asking around we found one we really liked. I went into him and explained all of my symptoms and he scheduled me to have a colonoscopy done.
For only being 17 I had no idea what I was getting myself into. I will never forget the day I had to prep, they gave me an option to take pills or drink the nasty drink, I opted for the pills. The next day feeling miserable I had my colonoscopy done and that’s when we found out what UC was. He started me on enemas at first and those were very uncomfortable but I got through it. Over the years my symptoms have worsen and I was feeling extremely “swollen” and he placed me on prednisone, this medicine worked great except for some of the side effects I got. I got terrible night sweats and I was always hungry! The prednisone worked for a very long time though and I never had flare ups, I felt great everyday.
After a couple years I started to bleed and it got so bad that I was hospitalized and I needed a blood transfusion, if I had seen all the blood in the toilet I would’ve acted on it but I never saw any, my stool was always very dark and no blood was seen. After that he upped my prednisone and I was all good again for another couple of years.
Now at 21 my flare ups have been terrible, I started bleeding again and was hospitalized, another colonoscopy was done. My doctor put me on Mesalamine and I was doing great for a few months at least. Now it has all been down hill from here. I am now hospitalized again, the bleeding and inflammation won’t stop or go down. I was admitted on 9-18 and started off with high doses of prednisone thinking that would help and everything would calm down. After 5 days of high doses of prednisone nothing was working, my doctor talked with me and my mom about a medicine called Remicade. We tried and gave that a few days to take effect but nothing. At this point I am not able to eat or drink anything and the only thing keeping my hydrated is my IV. My doctor wanted to do another colonoscopy and see if there was anything else going on, and it turns out my colon is getting worse and he says he’s out of options and we need to start looking for different hospitals to go to and get more answers. So that is what we’re currently doing, sitting in the hospital and researching and trying to find some place else to go. Surgery is my biggest fear and I’m extremely depressed, not sure what to think. This is my story so far, just sitting, waiting, losing too much weight and not able to keep anything down and crying, a lot of crying. I wanted to share my story to try and make myself feel a little better and let others read. I’m just not sure what to do at this point.
In the past prednisone worked really well for me, the inflammation would go down and i would be golden. Mesalamine also worked really well for me for awhile. One medication that didn’t seem to work at all on me is Remicade.
written by Shannon
submitted in the colitis venting area