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I have UC, Now What?…

Hey Everyone!

My name is Nikki and I’m 27 years old. It was this time last year that I got diagnosed with ulcerative colitis (UC) October 11, 2011 to be exact. I was suffering for a few days before I went to the hospital to get checked out, I don’t have any health care right now and that was a main reason why I waited so long. When the Dr. told me that I have UC, I never heard of it before. I was scared, confused, and didn’t know what to do next. I spent one week in the hospital and I cried myself to sleep every night. I never felt so broken in my life. I’m so happy that I came across this site, everything that I’m feeling or going through everyone has experienced. I feel like I’m home here and for that I thank you.

Some more about me:

I live in Philadelphia , PA and I’m newly married. I got married on October 6, 2012. One good thing that has come from all of this is, my husband got so use to taken care of me that he decided to go to nursing school.

husband nursing school

He will be a LPN in July 2013! This is the most embarrassing disease I think that anyone can have. I hate having to look out for the nearest bathrooms when I’m out or working. I’m in SAG ( the screen actors guild union) I work on movies, tv shows, commercials, ect… I get so scared if I’m on set and I have to use the bathroom. That is always my nightmare!

Colitis Symptoms I’m Dealing With:

I feel like its never ending for me. I take about 8-13 pills a day depending on if I’m using prednisone. Since I don’t have health care right now, I have to take Sulfasalazine 2 tablets 4 times a day since it don’t cost as much as the other drugs. I have a love/hate relationship with prednisone. I call it my “magic drug” it makes me go back to “normal” like I never had UC but as soon as I stop it everything goes back to being hell again. I deal with a lot of pain , a lot of it on my left side. And too many trips to the bathroom. Ive noticed that I dont like to make to many trips outside of my house anymore, I’m scared I will not find a bathroom in enough time (as funny as that sounds) I hate the fact that UC is doing this to me. It’s giving me a fear that Ive never had before and I don’t know how to handle that.

My UC Story:

At first I got really depressed, I felt like my life was over. My life will never be the same ( or at least I feel that way right now) and I don’t necessarily mean that in a bad way, it will just be forever different. I have to watch what I eat and I always got to make sure I take my meds everyday. I’m doing things that make me feel older then what I am. I don’t think a woman my age should be going through, and it makes me sad. I know I’m going to have a long road ahead of me, I just have to take one day at a time. I think what I’m most concerned about is how much worse is it going to get when I get older? I get frustrated a lot trying to explain to people my symptoms and pain because they will never understand. I’m still new to this and still have a lot to learn. I feel like I’m learning everyday.

I do have an amazing support of family members who are always there to cheer me up when I’m down or when I have a flare up. Even when I think I got a good handle on it, I always seem to be in a lot of pain… I have no idea why. My hope for the future is to be pain free, no blood, and to not be scared to go on a trip or vacation because of my stomach. I wish nothing but the best for the rest of us living with Ulcerative Colitis . Thank god for this website, it has really helped when I’m dealing with a flare up and thinking that I’m the only one out there who is dealing with this right now. Its nice to know that’s not the case.

Colitis medications:

I take prednisone and sulfasalazine plus iron. I believe the pred. works best for me but its such a pain to get off of it!!!

written by Nikki

submitted in the colitis venting area