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




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5 Responses to I have UC, Now What?…

  1. Tony (UK) December 19, 2012 at 3:28 pm #

    Hi Nikki, I feel so sorry for you but you are in good company here and I sure Adam and the many others who visit his site will be a wealth of information to help you through this. Prednisone is a wonder drug but you can’t stay on or rely on it for too long, I took it for a year when first diagnosed 3 years ago but have been led to believe that’s too long because of its possible harmful effects. I now take Mezavant XL 2400mg everyday along with painkillers to help me get through but I’m sure I read somewhere taking Iron is not good with what we have, I’m sure someone will correct me if I’m wrong. You will get lots of tips from Adam about what food to eat and I’m sure he won’t mind if I recommend a book by Dede Cummings ‘Cooking Well: IBS’ which has recipes for UC too.

  2. bev December 19, 2012 at 4:19 pm #

    Hi Nikki and welcome home…yes this site will become a sort of home for you like it has for so many of us.

    Are you ever right on the mark about reading everyone else’s stories and finding out how similar we all are. You’re correct…this can be the most embarassing awful ‘disease’ to have. It’s hard for others who don’t have it to understand just what we sometimes go through.

    Anyway, I hope you can find your way to permanant remission through probiotics and other natural ways, like I, and so many others have. Some of us aren’t taking any of the meds, any more. All of the drugs used to treat UC eventually seem to fail and we are left with our disease once again. Not to mention the short and long term side effects of the meds. Be your own caretaker. You do not have to do everything a doctor tells you to do. Get as much knowledge as you can on UC. That is the true power. Then, you can decide how YOU want to live with UC. You are the boss!

    Cheers,
    Bev:)

  3. joanna December 19, 2012 at 6:40 pm #

    hey nikki. so it looks like your current meds aren’t working for you. have you talked to your GI about this? it’s kind of pointless taking so many meds if they aren’t helping- i can totally understand it if they help you though.

    yeah, prednisone is a toughy. never did me one bit of good.

    i know what you mean about leaving the house. i get so nervous. i wear a depends diaper whenever i go someplace but it’s not like diapers hold in diarrhea EVER. luckily, i’ve never had an accident outside of my house but it’s always on my mind.

  4. Nikki
    Nikki December 19, 2012 at 7:46 pm #

    Thanks guys for all the well wishes, I feel truly blessed to be able to share with everyone.

    Tony- Ive been on prednisone for a year now as well and Im slowly trying to stay off of it for a long as I can. I know it must be doing a number to my body on the inside, but god damm does it help lol

    Bev- I dont know too much info on probiotics, so any info you have on them would help me a ton. I’m always willing to learn something new!

    Joanna- I think I have came across a few of your stories before on here and my heart goes out to you. This disease can be a living hell. That is why I cant thank Adam enough for having a safe place for us to meet new friends and vent when we have bad days :)
    Yes my current meds are not working for me well and I do need to be put on something different, but right now I dont have any health care and I pay about $75 a month for what Im using now compared to other meds that run about $400 a month. As soon as I get health care that is the first thing Im gonna do!

    Ive had plenty of accidents outside of my house and its a nightmsre!!! Thankfully that has not happened to me in a while (knock on wood)

    I cant say thank you enough for listening to me vent, you guys definitely made my day brighter :)

    Lots Of Love,
    Nikki

  5. zayna December 24, 2012 at 9:54 am #

    Hi Nikki,
    I am so sorry you are suffering like this. Prednisone was always my magic pill too – the only thing that worked for me to get out of a flare up. But just like you getting off the prednisone would always lead to a flare up gradually within a few months. I started the SCD diet 3 1/2 years ago and was off predinose for several years with very reduced symptoms. I went off my diet over the summer/Fall and am back on prednisone. i was so sick I couldn’t wait for the relief. I couldn’t keep losing weight and being in a so much pain while I went through the first month back on SCD because it takes a little over a month for the SCD to work for me. If you decide to try SCD the first month is so frustrating because you might not see any difference the first month. But this site has some great stories from others who have tried the diet with success.
    You just have to follow the diet exactly with no exceptions for it to work.

    Thanks for sharing your story. I just found this site a month ago and it is the first time I have heard peopple talk about what I have been suffering through. It feels so good to hear all of your stories. And this site is becoming my new best friend too.

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