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I was diagnosed about a year and a half ago, when I was 14. I'm sixteen now.  I was on steroids, anti-biotics, immuno-modulators when I was really sick the first time. My doc said it was "moderate-severe" so she put me on just the 6-mp which seemed to work really well for me.  There were times when I would forget to take my meds, and wouldn't feel any different.  I stopped taking them altogether, because I resent it more than anything. I want to be "normal." I want to be able to go to school events and have perfect attendance.  I want to be able to pick up a piece of cheese pizza without worrying about the implications of it.  Every morning when I wake up and have to take my pills it's like a slap in the face and I hear my doctor's voice "unfortunately, there's no cure for Crohn's, and I don't usually take people off medications," but all I hear is "You're sick and you're never going to get better. You're going to have to wake up every day for the rest of your life and take these medications, so that maybe you won't get sick right now, even though you'll get sick soon enough anyways."  My parents get very angry with me (understandable, but I just can't take my medication.) and I want to have motivation to be healthy, but I don't.  I've been feeling pretty bad lately, not HORRIBLE, but just a general bad.  I asked my doctor about it and she said it's normal to have those weeks where I can't function normally.  Honestly, I hate it.  At this point, I would rather have surgery or be on remicade where I only have to deal with it every 6 weeks instead of every day.  I know I sound like an incredibly whiny, melodramatic teenager, but I was just wondering if I could find anyone who's stopped taking their medications, or who's been in my shoes.  I really need someone to tell me it's okay, because I feel so alone.

 Reply posted for strawberryhair.

I was diagnosed with IBD when I was 17 and i'm much older now and still suffer with this horrible illness.

 Reply posted for strawberryhair.

Thank you all so much!  I am proud to say that I took my medication yesterday for the first time in about two months!  It feels wonderful to know that my feelings aren't unordinary.  Although I know my complete acceptance of having a chronic illness will take a while, I know where to go when I'm feeling down.  Again, THANK YOU! 

 Reply posted for strawberryhair.

First of all I’d like to commend you on your communication skills. For sixteen years old you really do a good job. Everyone has a hard time accepting their diagnosis of IBD, this is normal. At your age I would imagine it is doubly hard. What the medications do is try and give you quality of life, a means to an end. What you want to do is stabilize this beast, tame this wild horse. Dealing with IBD is a skill, it takes a lot of effort and determination. Letting your emotions override that endeavor only complicates the process. See if you can channel all of that angst and teenage rebelliousness into fighting your IBD. YOUR IBD IS THE ENEMY! There is no easy fix, no magic wand, just a lot of hard work. You are beginning a long long journey and just like any long journey preparation makes it a lot easier. I think that you are a gifted young lady who has great potential. Show this IBD what kind of person that it is messing with.

Joe

 Reply posted for strawberryhair.

You are not a whiny teenager and you are not alone.  Although my daughter is much younger (has Crohns), I know that one day she will likely have these feelings.

 Reply posted for strawberryhair.

I was diagnosed with ulcerative colitis 3 years ago when I was 16. Even though it's not exactly the same thing, I know how you feel because I have had to take tons of meds ever since. At first I had the same exact feelings as you about wanting to stop taking the meds because of how annoying it can get and I thought I would be fine without them, but it is important to follow your doctor's instructions because illnesses such as Crohn's and colitis are not going to just go away. You have to realize there is nothing not "normal" about having to take medication. You shouldn't be embarassed about it, and even if you are, it is no one else's business but your own how, when, or why you have to take all this medication. I'm sure if you talk to your friends about it, you will find out a lot of them have to take daily medication too for other problems. We are actually lucky in the sense that medications designed for Crohn's and colitis patients usually have extremely mild, if any, side effects that will affect your everyday life, and if they do, there is usually a safe alternative doctors can prescribe. Many people with other illnesses do not have that privilege and have to stick with one single medication even if it is making them sick. I can promise you that in a few years you will be worrying about other things and this will be something you just learn to live with. I don't know about you, but I would much rather take a few pills everyday than not take them for a few days and then have a huge flare up and have to miss school, work, and have no social life for a month. I totally agree with the response before mine that these things will make you a more compassionate person if you learn to deal with it with maturity at such a young age. Do youself a favor and just grin and bear it for now and follow the doc's instructions and for all that we know, in a few years, there will be a cure and you won't have to worry about it anymore!

 Reply posted for strawberryhair.

I understand completely how you feel.  Though I am a bit (ok, a lot) older than you.....I have daughters your age (my oldest is 14 and my youngest 10).

Our family was affected by CD when my youngest was born. She had been hospitalized and misdiagnosed a couple of times before she was confirmed to have Crohns at age 4. 

I know the frustration you and your parents are going through.  I see it first hand with my Lizzie. She doesn't have any memories of not having to take medication.  We have our battles about being compliant with meds and diet.  As parents, we do it because we love our children. You will never know how much until you become a parent (at least that is when I knew what love was). We have learned as a family with moderation she can live a full/happy life. She is an active 10 yr old, does well in school, is a fantastic gymnast, and has a certain compassion that I think grew from her circumstances.   

There was a time when my daughter first got into remission that I stopped her meds.  I discussed it w/her doc first, was strongly discouraged, but did it anyway.  I didn't want her to be sick, didn't believe meds were the answer. Guess what, the doctor was right..she needs her meds.   It took us twice as long to get her gut back under control.  Lesson learned....We will take the meds until there is a cure.  I have educated myself and know the scientists are identifying so much information that will help them in unlocking the cure.  Until that day, it is our job to take the very best care of ourselves so we are ready.  Sleep, exercise, diet, (yes, meds)

Last year she went to Camp Oasis and it allowed her to meet lots of kids and she had the time of her life!   Already signed up for this summer too! 

Find comfort in knowing you are not alone and are understood here.