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Day to Day Struggles of Ulcerative Colitis

Introduction:

I’m a 31 male living in northern NJ who was diagnosed with ulcerative colitis back in 2007. I am happily married and have a 1 year old son who is a joy in my life. I am a database analyst in a semi stressful environment. I play hockey, ski and enjoy many other outdoor activities.

Current Colitis Symptoms:

My worse symptoms are the uncontrollable urges to go “number 2.”
Having to worry about where a bathroom is wherever you go.
Lower back pain, sore joints, fatigue

My Story:

As I said, I was diagnosed back in 2007 but I suspect had mild colitis pretty early on. My aunt and uncle have severe Crohn’s and my other uncle has ulcerative colitis. This is all on my mother’s side yet she stayed away from it but this crap was passed on down to me (lucky me).
I was in a long remission for about 3 years then this past fall I went on some antibiotics for an upper respiratory infection and all hell broke loose.

Since then, UC has been back with a vengeance. The worse part of it all is the uncontrollable urge to have to.. well how else do I say it… blow up the toilet. My wife is understanding but doesn’t truly understand what we go through. I also suffer from OCD and depression so when I know I am leaving somewhere my mind kicks in and all of a sudden I have to run into the bathroom. While going to the bathroom I get this uncontrollable surge in my body which makes my whole abdomen sore.
I’ve been caught a few times on my way to work sweating it out trying to pull off somewhere and find a bathroom. I’m so sick of this routine, going 5 or 6 times in the morning then worrying I’ll have to go on my way to work. The worst part is sometimes the urge comes so fast that it’s unstoppable. That’s all I’ll say there, I’m sure others can figure out the rest. Let’s just say it’s embarrassing being a 31 year old that has to worry about shitting his pants but I feel it’s safe to air this particular frustration in here ;-)
My doctor is pushing me to start the heavy hitting drugs (Azathioprine and Remicade) which are what I am most concerned / scared about. Being a person who worries by nature I see the side effects such as cancer, fatal infections etc.. And that’s it for me. As far as 6MP that is chemotherapy, how can I be comfortable taking that for UC?  If I choose not to ever take these I’m concerned I’ll develop colon cancer but I do know that the increased risk is not that high and having my butt exam every year or so is a great preventative measure.

My family is very understanding especially since half of them have Crohn’s / Colitis but bottom line is everyone’s experience is unique in some ways so something that helped for one person may not help for another.

I plan on trying the SCD. At this point I have nothing to lose and I’d do anything to stay off prednisone and do even more to avoid the hardcore drugs.

Having found this website which allows me to vent to people that actually understand has been extremely helpful and satisfying.

Thanks Adam!

 

Where I’d like to be in 1 year:

I want more than ever to be back in remission not having to worry about where and when I’ll have to go to the bathroom.
Medications:
The usual, Pentasa, Asacol, Lialda and of course…prednisone. The main ingredient in getting into remission for me has been the prednisone but I gain so much damn weight.

written by Jeff

submitted in the Colitis Venting Area