Emotional Wellness

Coming To Terms With Crohn's Disease

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Joined: January 01, 2013

Posted: Mar 3, 2013 9:43 AM
Lately, I have had trouble coming to terms with my disease.  I was diagnosed with Crohn's disease in October 2011.  Upon diagnosis, my initial reaction was I was scared, but nothing really troublesome had occurred yet.  So, I took my medicine, had the tests done, and went to my appointments with my doctor.  After the initial reaction, I did my own research and I was okay with it for the most part.  In October 2012, I went to the ER with vomiting and severe abdominal pain.  It was discovered that I had an abscess and stricturing and then got C. Diff while at the hospital.  I was in the hospital for 3 weeks and released on TPN until surgery.  My surgery was a resection at the end of December.  In the surgery, they also discovered a fistula.  I am now on remicade and 6MP.
It has been hard for me to even comprehend everything I just went through.  I knew all of it was possible with Crohn's Disease, but never imagined it happening.  And now that it has, it scares me more.  I don't want to go through that again, but I know that there is a good chance of it.  And honestly, I don't want it to happen again, because I don't want my family to go through that again.  They made sure someone was with me everyday while in the hospital, so that meant traveling to Chicago daily (I live an hour and a half from Chicago.  I was transferred to the hospital 3 days after being in my local hospital.) I know it took a toll on them and that they were scared and worried. 
Even though I could be in remission for awhile now that I have had surgery, I am still scared and worry.  
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Joined: January 01, 2013

Posted: Mar 11, 2013 7:03 PM
 Reply posted for jezjiah13.

I also continue to remind myself that it could be a lot worse.  I do a pretty good job at keeping my mind off things, but then comes the low points.  You imagine the worst case scenario or close to it and just keep thinking about.  That is the hard part, getting your thoughts out of that state of mind.  I am working on starting to think more about what good things are to come in my life or turning situations to something good.  Like in a few weeks I have a doctors appt. in Chicago, so I decided to go with friends and spend the day with them.  Also, doing things that make me feel good about myself or happy, like exercise, treating myself and a fellow teacher to that piece of chocolate during lunch or making/buying gifts for friends/family. ;) 
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Joined: September 25, 2008

Posted: Mar 9, 2013 9:26 PM
 Reply posted for eabarwick.

I'm 27 and I have had moderate to severe Crohn's for 10 years as of this August! Sometimes I feel like yeah, I am totally on top of this! Sometimes I feel like wow, my life blows. I just try and remind myself that I'm lucky to have great family/ friends/ pets, and that no matter WHAT is going on it could always be worse!
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Joined: April 11, 2008

Posted: Mar 7, 2013 8:55 AM
 Reply posted for eabarwick.

I tend to keep it hidden when I am in pain too.  I just dont want people to worry about me, bc i can handle it.  i had the surgery 4 years ago and it has come back.  it sucks but it is what it is and gotta just roll with it and be positive about it.
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Joined: January 01, 2013

Posted: Mar 5, 2013 8:26 PM
 Reply posted for mickeyg.


I does help some.  I do plan on keeping my family close and up-to-date about my disease.  I know I am blessed to have their support.  I have a large family, so I have a lot of people to lean on which is really nice.  I thought I understood what "chronic" meant, but after what I went through, the meaning has changed some for me.  I think a big part of it for me is that I am 23 years old.  I just started my first job out of college (geometry teacher and girls basketball coach) when I went to the hospital for the abscess.  So, not only am I learning about a chronic disease I have, but also taking my first steps in the "real" world.

As in talking with someone, I haven't talked to a counselor.  I talk with friends and family here and there, but I know that is not the same.  And yes, I do my best to keep it in the back of my mind (and I was succeeding, until October of last year!), but of course, I still have those bad days where it stays in the front of my mind.
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Joined: December 14, 2012

Posted: Mar 5, 2013 9:48 AM
 Reply posted for Eabarwick.

I have had Crohn's for almost 30 years (At 17!)...it took a long time for me to come terms with it. I think a lot had to do with my age and understanding what "chronic" really meant. This disease can have many ups and downs..but keep your family involved and around you. It is important for all of you. I hid my symptoms from my husband and family for a long time until everything blew up on me, literally, 3 years ago. I would not have recovered the way I have without them.   Being scared is a normal part of recovery, you did just have surgery a few months ago so you are still recovering. I had my first surgery in 1991, when I was told I had to have a second surgery in 1995 I was devastated. I thought I had kicked the disease the first time. Luckily I didn't have another surgery (only 1 big flare) until 2010. It does vary for all of us.

Have you talked with anyone?  I did last year and it made a difference. I try to keep my disease in the back of my mind and not let it run my life...hope this helps - Michelle

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