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Just a brief venting post....

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Ulcerative Colitis
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Posted 4/20/2009 1:45 PM (GMT 0)
Have you ever just wanted to kick and scream and the top of your lungs and just throw a good old-fashioned three-year-old tantrum? I'm suffering a flare right now, and even my remicade treatment on Friday didn't do too much. I have slight improvements, but its going a lot slower than expected. This morning I was in so much pain that I just wanted to throw a tantrum, screaming "it's not fair!" I know I am not alone though. But when it feels like your insides are trying to kill you, it's hard to think positive.
Posted 4/20/2009 2:11 PM (GMT 0)
Oh boy do I hear you! I have had so many of those days that I too just wanted to throw a tantrum, crawl in a corner and cry for about 3 hours. I hope you start to feel better soon and that the Remi will get you feeling better in no time.
Posted 4/20/2009 2:27 PM (GMT 0)
I have cried to my husband in just the past few weeks that it's not fair! You're not alone.
Posted 4/20/2009 3:16 PM (GMT 0)
Have just had the weekend from hell know where you are coming from i just keep thinking things can only get better. You are not alone.
Posted 4/20/2009 3:33 PM (GMT 0)
I hate that we all have to go through this. But it helps to hear from others that can understand like no one else can. Thanks for replying everyone. I hope you all feel better soon, too.
Posted 4/20/2009 10:09 PM (GMT 0)
Yes, I've been having quite a few of those days lately. I've been in a 2-month flare and so far nothing is helping. Remicade helped the first few times, but then I weaned off Prednisone in January. In February, I was started on a new med by my hematologist (one of the side effects is diarrhea), which has since been reduced (I have low hemoglobin and have to get iron infusions and blood transfusions periodically). Also, I'm under a lot of stress right now, being unemployed and so far having no luck finding a job). I refuse to go back on Prednisone...was on it for almost 2-1/2 years continuously (kept flaring on lower doses). I've had crying fits almost every day, so I totally understand how you feel. This disease...well, I won't put the words I'm thinking in this note. cry
Posted 4/21/2009 8:17 PM (GMT 0)
I had a very rare meltdown a couple of weeks ago, I'm sure it was in part caused by the prednisone. I was just worn out. It inspired my husband to go grocery shopping and commit to helping me return to the rotation diet that had helped so much last fall. He is doing a better job of encouraging me to make smarter decisions about eating, instead of just indulging me all the time.

I rarely feel sorry for myself otherwise, but sometimes a little tear will fall. I'm usually just reminding myself to give myself a break, do what I need to do to be comfortable even if it means I'm late somewhere or miss some event or things like that.

I also cried a little tear when I was scheduled for Remicade...a hopeful tear.
Posted 4/21/2009 8:57 PM (GMT 0)
I used to have the days all the time. I would come out of the bathroom and sit at the top of the stairs rocking back and forth crying to my mom and saying 'I just can't do this anymore'.
I hated those days and I hate that you're having such a hard time! I hope things look up for you... :)
Posted 4/22/2009 12:23 AM (GMT 0)
I had to pull off the road yesterday and take a poo beside the car. Today I haven't been to the toilet at all. It definately makes you wanna scream sometimes!
Posted 4/22/2009 1:38 AM (GMT 0)
You know what? Have that tantrum. It will make you feel better to get it out and then you can take a good nap. I've totally been there, having a flare with a demanding baby/toddler and freaking out on prednisone. Do what you need to do to get by and you'll get better. Good Luck!!
Posted 4/22/2009 2:03 PM (GMT 0)
Thank you all for your responses. This disease is just so unfair. And its unpredictability drives me insane. I'm doing slightly better each day, but I still just want to cry sometimes. I know it could always be worse, so I try to think positive.
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