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Can anyone give me some tips about dealing with stress and anxiety with having UC.  I used to be very outgoing before I got sick and diagnosed with UC in Jan. 2010.  Now, I rarely go to hang out with friends.  Im scared that im going to have a flare up.  I never know when the flareup will occur.  Because of the meds I was on, I gained a lot of weight.  I shed almost all of it away finally after a few months, but still dont feel like I look 100% like myself, making me anxious.  Im glad to get healthy again, but need help dealing with the stress and anxiety this disease brings.  Suggestions please.

 Reply posted for AZMOM.

Claire's Mom:

I'm glad to have this CCFA Community.  There are no support groups for IBD in my area.  Yes, I agree with you that these diseases are definitely individualized in retrospect of every individual person.  I wish you daughter well!  Being only 23 and having this disease does scare me, but with good healthy habits, I seem to be on the track to remission of UC for now. 

Having something i'm passionate has made all the difference since being diagnosed.  Music always has been my life besides school and work, but I lost interest upon diagnosis.  Having some extremely close support group of family and friends, I have gotten back into the habit of playing the piano again.  I can't tell you how happy it has made me. 

I love being a determined person.  Although I know that I will have this disease for life, I have to try to stay positive.  If I start to worry, I get flare ups pretty easily.  Music and talking to a few close friends has kept me positive and gotten me back to healthy since January 2010.

Again, I wish you daughter the best of luck!

-Em

 Reply posted for Emily Kate.

Emily Kate & Pyro Zack - I just wanted to tell you both that I love your honesty on here.  My daughter is the one with CD.  She is still very young but I am hopeful she will grow up to be as resilient, deteremined and wonderful as you both are.  Reading what you have to say reminds me of how individualized this illness can be and just like individuals respond differently to treatment, everyone copes a little differently.   

You made me smile today.  Sending a big hug to you both - you're awesome!

Claire's Mom

 Reply posted for PyroZack.

Thanks for the advice on what to tell friends and family.  Only some of my close friends know what is going on with me.  I have not told many people yet, but they know I was ill and not well last January.  I don't know why I feel I need to shy away and not tell people, but I felt that if I was close enough with a few people, those few people would know about my condition.  Some have been supportive, while i've had a friend not really understanding I can't drink like I did when I was 21 (now am 23.)  I get the giving up on school.  I wanted to give up and never go back to school.  I just didn't have a choice in the matter.  Once my doctor gave me the go ahead to go back to classes the next week, I was stuck going and trying to catch up, which was extremely difficult missing 2 weeks out of 11 week terms. I just wish there was a way to pinpoint why exactly I got ulcerative colitis.  The not knowing exactly what causes the disease is what scares me the most (just like remicade infusions, since they don't know the long term effects it could have on a patient). 

 Reply posted for Emily Kate.

Ugh...the reason why I haven't responded faster was because I just wasn't sure how to respond.  I mean...I kinda gave up on school.  I couldn't do my work because as I'd start to focus on trying to learn different things my intestines got in to knots and I'd have to go to the bathroom.  Come back, try again, bathroom again, and just be in so much pain and exhausted from multiple bathroom visits that I just barely got through Comp 1...and that was my easy class!  I only started to really have problems at the end of that class so I still did really well...namely because of how I destroyed the early part of the class where I already knew everything.  So I'm...a little discouraged because I had to spend a day rechecking myself and making sure that I've pushed as hard as I could.

 Reply posted for PyroZack.

thank you for your kind words.  they really meant a lot to me.  also, the advice you gave me is very helpful. how do you explain the disease to your very close friends? i'm still trying to find words. also, going to the gym and playing piano/singing are my hobbies.  for a while,  i shyed away from even playing piano (and believe me, it's my passion).  i needed piano to get my life back.  my neighbors (all around my age) have been pretty great at helping me get my life back.  my one neighbor in particular was definitely there to help while dealing with the beginning stages of the disease and currently.  he got me to think about life and keep staying determined.  i got really sick right after my 1st term of college.  since it was the holiday season, drs were hard to get appts with.  i had to start school two weeks later in january (the school runs on 11 wk terms, then 2 week breaks, all year long.) i was so sick, all i could do was get to my first class, sleep on the bench outside during my hour break, go to my second class, and sleep from 3pm on.  i finally got to the gi when i could get an appt.  i had to have a colonoscopy 2 days after i started classes.  i ended up being admitted to the hospital for a week(not the highlight of the year for me!)  i was put on about 7 different medications, plus remicade infusions.  still, the next week, i went back to school with the gi dr's clearance.  i ended up doing better and am now only one one medication daily and remicade infusions every other month.  i just feel a little isolated knowing that i have ulcerative colitis for the rest of my life (and probably remicade infusions the rest of my life, as well.)  i did however stay determined like my neighbor told me to.  i refused to give up without a fight.  i made dean's list every term for college.  i graduated with a 3.8 summa *** laude gpa.  i also interviewed for a job that 30 people were applying for, and landed the job, where i've been for three months now. 

 Reply posted for Emily Kate.

Well, I've got some practical things and then share with you some personal things.  Whether or not the personal things apply, I don't know, but I'm throwing them out there anyway.

Practical thing number one is that if you go to hang out with people, always follow in your own car.  If you meet up somewhere and then everyone wants to just drive one or two cars, always drive separately.  Having that exit strategy is always a good idea.  Don't get me wrong, it still sucks.  I've had Crohn's for nine years and I still catch myself being embarrassed when I need to leave because I'm feeling bad.

Practical thing number two is to have some sort of hobby.  For me, it's been either video games or sewing while listening to sermons.  The latter does the best for me because it gets me something tangible that I can do as well as pouring in good information while I do it.  Having something that you can physically do is pretty important.  It's good to be able to do something and go, "Ha ha!  Take THAT Crohn's!  I patched the tear and you didn't stop me!"

Personal thing...my identity doesn't come out of being social.  Before I got Crohn's I was very outgoing.  Now, I find myself struggling to actually act as my true self whenever I'm dealing with my guts wrenching.  But even then, that's not where I draw my identity from and as a result, my ultimate level of joy is never lessened.  My identity comes from the God that I know mourns for me:

Psalm 35:13 and 14, "Yet when they were ill, I put on sackcloth and humbled myself with fasting.  When my prayers returned to me unanswered, I went about mourning as though for my friend or brother.  I bowed my head in grief as though weeping for my mother."

I don't know whether you're a believer or not, but I can tell you this: Crohn's is not my identity.  As a result, the fact that I've lost weight down to stabbing people in the neck when I hug them is not who I am.  Who I am is a son of the most High God, and nothing will change that.