I DON’T Want to Be on Meds FOREVER

Hi Everyone…
My name is Amanda and I was diagnosed with UC in May of 2010. I had symptoms for at least 5 years prior to getting an official diagnosis.

I didn’t realize what an impact on my life this one

colonoscopy and dr.’s appointment would have on me.

I was in and out of a flare for a year, experimenting with asacol, canasa, apriso. I felt like they all worked for a little while and then my symptoms would slowly come back.

I realize now I had no idea what a flare was until this past March when my body felt like it was just failing me. I decided to eat as a little as possible so that I could finish out the school year as a teacher. I was in bed most of the summer and lost a lot of weight. I wanted to go back to work and not have to worry about running to the bathroom so I went on the SCD diet. At this point I was being stubborn about going back on medication because I did not want to be 30 years old and have to pop pills the rest of my life.

Well, the diet has definitely worked for me. It’s a lot of work and was extremely difficult in the beginning, but I am proud to say I have been on it for 80 days now and I have now adapted it as a lifestyle change. However, it was not getting me into a full remission so with some resistance I went back on meds.

I am currently taking Canasa and Lialda. I still have good days and bad days. I feel like my emotions play a big role in my colitis. I made a huge decision to join Team Challenge for Crohn’s and Colitis. I have been training the last 14 weeks to run a half marathon in 2 weeks in Vegas-how incredible. I definitely cannot keep up with most of the other team members because I am still sick, but it is the best team to be a part of…..everyone understands! I do what I can and hang onto the hope that next year I will be able to run the whole thing…
Hopefully, raising all this money will help researchers find a cure for all of us!!!!!!!!

Does everyone else get the worst cramping???


I mean to the point where you don’t feel like you can move an inch or even take a breath? This is quite embarrassing when you are speaking with someone and you feel the cramping coming on….it’s quite challenging to say the least.

This website is amazing and there are so many incredible people living with this disease. So glad we have a place to vent….

My Medications and Treatment:

Lialda-4 pills a day
Canasa-at night
SCD Diet


Submitted by Amanda in the Colitis Venting Area

2 thoughts on “I DON’T Want to Be on Meds FOREVER”

  1. Hey Amanda,
    I can relate to your story because I also couldn’t seem to be diagnosed with UC until a little over a month ago. I read about SCD but have not committed to it YET! I’m just embracing the medications for now and hoping to feel healthy again soon. I do get really bad cramping as well and if i’m out of the house and start to feel them come on my whole body starts to feel hot and I freak out (I assume this is an anxiety attack). This is part of the reason why I have basically been housebound since the summer. Anyways, I wish u luck with the SCD and getting off medications =)

  2. Hey Amanda,
    Yes, the cramping sounds really familiar. When you can’t move or talk normally. Along with what Mirraj said – I feel incredibly hot and break out in sweats.
    Amanda, it’s amazing that you will be running the half marathon! I admire your strength! I just couldn’t imagine doing it while I was still sick. About the medication: I’m kind of with Mirraj, I am thankful for them, because they have helped a lot. I also adapted my diet and am working on my emotional wellbeing to make me better over all (no more stressing). I know you have been diagnosed over a year ago, so I don’t know how I’d feel about meds by then, but if I feel good a year from now with meds I will probably keep taking them. Anything to keep me out of the hospital.
    Good luck on the marathon, you’re amazing!

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