Dealing with crohns?

[Jennifaa]

I'm sixteen years old and have been diagnosed with crohns disease about 2 years ago, 2009. Before i was diagnosed i used to be a normal happy teenager just trying to live life. I was a cheerleader with a couple national tidles i am very proud of. In 2006 I had my first sign of symptons of abdominal pain WHILE i was away in florida at a cheerleading competition. I was walking around disney world halfway bent away, couldnt eat anything without it coming back up and the pain lasted nonstop for a week. After that week i havent had any other signs or pain up until october of 2009. One night my skin went pale, i had a high fever, and unbearable pain so iwent to the hospital. It was pretty pointless becasue all the hospital diagnosed me with was abdominal pain. I went to a gastroontologist about a week later, got many tests done including colonoscopies and endoscopies, and they wound up diagnosing me with chrohns. I've been on Humira for 2 years and up until about 6 months ago it didnt control it that well so my Dr. put me on a side medication called 6 Mercaputone (sp) otherwise known as 6 MP, and it sometimes takes up to 6 months to kick in. I also been on differnt steroids and pain meds for this entire time. Hopefully it kicks in soon. I know that stress is a big source of this disease and lately i've been having alot of stress due to family, boyfriends, and my schoolwork. All i know is i went from being this energetic girl, always going out with my friends and having fun; to this depressed girl who just sits on my couch all day watching movies alone. I havent went out in about a year except to hang with friends at their house and i dont do the things i used to such as cheering anymore because of this horrible uncomfortable disease. Can anyone relate to my story and please tell me some ways on how to cope with it and not let this monster bring me down? I mean im only 16, i shouldnt be this depressed

[blonde_eM]

Awww you poor darling! You are so young to go through what I've been through.  I started having stomach problems/upsets in my 20s. I was diagnosed at 31 (6 years ago) unfortunately I was very severe by then and had some bowel removed. Thought I was 'safe' and changed my diet/lifestyle but not enough.  I used to work 2 jobs for years and run 100 miles an hour plus with EVERYTHING - being a musician means long hours in the studio too. After finishing my last album a year ago my health crumbled and I am still recovering a year later.

I have been on Humira for 3 months now and it is only now that I am having less horrid days. Humira is a very long term drug and needs months to fully take effect. I have been on Imuran for a  year and as the crohns is now spread down into my rectum I take steroids occasionally. I don't like steroids though, they stuff up my emotions and the long term effect is BAD.  If you can, try to get off these as soon as you can. Steroids effect your bones and as you are still growing this is not good.

I do have some very good advice for you though. I have been seeing a naturopath for the last 3 months that specialises in crohns and gastro problems. She told me in the beginning there are 5 things to avoid with Crohns:  GLUTEN (is the no.1 driving factor for all auto immune diseases), DAIRY, SUGAR, CAFFEINE and ALCOHOL.

If you give up all of these I promise you that you will have less symptoms. The hardest thing is gluten as it is in everything but I find I eat more raw fruit and veges now in my diet as well. I also loved my wine for years and that has been very difficult to give up too. I have an occasional brandy or wine now but it does makes me sick and I am learning to enjoy sobriety hehehe sounds silly but I used to party a lot!

Remove all stress out of your life, anyone negative and the first sign of anything that will affect you, walk away or remove it. I used to take on peoples crap and always gave people the benefit of the doubt. Now, if I am not treated with respect at work or at home I stand up for myself and let that person know that I'm not here to be treated like that or I walk away.

I may not be the party girl I used to be and my social circle has decreased but I do have amazing friends and family and such support. Surround yourself in people that love you and will help you and you will be fine.

Also, take high doses of concentrated fish oil. Its absolutely brilliant and reduces the swelling and sympoms. Its bout $40-50 per bottle and again is very good for auto immune diseases.

Go get a massage regularly to get rid of the toxins from your meds and to relax your ailing body.

I wish you all the best and if you need anything please contact me !

eM

[julieasc]

Yes yes yes!  I can relate AND give you a positive story--10 years post high-school.  Let's start with the bad news.  I'm still sick. My disease did nothing but get worse for a long time.  "Very severe" they called it.  I've had lots of surgeries, discovered some people weren't really friends, and really struggled socially after becoming sick.  

I did a lot of musical theater, usually playing the lead role.  I did dance competitions in groups, and we won first place. It was great.  I have always been very extroverted and very social.  And then I got sick in high school.  Senior year, I couldn't take any of my AP exams, had a lot of problems with guys (one in particular), and my best friend turned out to be a terrible person.  It sucked.  It's okay that you feel this way--it does suck. I cried a lot.  I felt like I didn't belonged.  High school is like that anyway.  Plus you're sick.

But then I graduated in went to college.  Go!  Make sure you go!  Talk about this disease and your experience in your college essays to get in.  They'll love it.  Apply for scholarships that are disease specific.  You can ask for faculty parking and other disability things.  Do that too!  Plus you'll get that social experience that you're not getting now.  (Dorms=friends around all the time and movie nights!!)  That and you'll want a job that has health insurance when you're an adult.   College isn't perfect.  It will be harder.  (Dorms have shared bathrooms.  Use http://www.ibdu.org/ for advice before you go and when you get there.)  But it was awesome too.  I was in a sorority and was a vice president even though I was really sick (and I was really sick).  I'm going to be the maid of honor in my best friend's wedding this year. She's from college.  The thing is, you seem to be an energetic person.  And no, right now you're not able to cheer just as I couldn't dance.  But I'm still me.  I'm still a bubbly person.  And you're still you.  My energy went into my friendships.  My good friendships.  The girls that I know will always be there for me.  The ones who know a disease doesn't define a person.  My best friends are from all stages of life, elementary school, HS and college.  Also, I quit dating douchbags.  I figured I might as well wait until someone awesome came along because they had to accept me AND my illness.  Why bother dating someone that isn't awesome?  I come as a package: me and my crohn's. I didn't go out a lot in college, but I still met a kick-*** guy who I married this year: he is nice, funny, very attractive (yay!), fit, loves to cook me meals, especially when "my belly hurts." And he just finished law school today!!! You deserve and will get (or have) great people in your life.  The best thing that ever happened to me was that I learned to spot them.  

As for the not going out now...  Keep going to friends' houses.  And during those times alone, pick up an indoor hobby.  Graphic design.  Blog.  You can learn photoshop elements and wow everyone with your awesome abilities to make their pictures look way better.  Or scrapbook.  Or cook.  You can design/make your own clothes as you watch project runway and get ideas. Learn to sing.  Invite your friends over to hang out with you on the weekends and start a hobby together.  I'm sure there are tons of other activities, but I'm getting carried away.  Just be your awesome self, and ideas will come.  These days, I dance now for fun.  I can't go all the time, but I go enough.  Who knows, maybe you'll coach cheerleading someday.

[benthic_man]

Jennifaa, I have two close friends with Crohn's, and I know it's not easy. The medication really does take time to kick in, and between the symptoms and the treatment, depression is common.
     Crohn's IS going to change the course of your life, but not in all ways. You've been diagnosed, and your medication has started- of my two friends with the disease, both went undiagnosed for too long; one had a bad reaction to the medication before finding  a course of treatment, and the other responded well but just now, 10 years later, is dealing with the depression. Both of these guys are married and have kids who were born after their diagnosis- Both had to slow down physical activity, but found other ways to cope- The younger of the two became a research scientist after diagnosis. We played football together in college, so now he's an assistant coach for a high school team and a competitive sailor when he's outside his lab.

I can tell you from watching these guys that it isn't always easy. I know it takes a couple of years to learn exactly which diet works for you. Sometimes you get a flare-up at the worst times. I'm sure that your life won't be what you pictured it to be, but to be fair, it wasn't going to be exactly what you pictured anyways... you still have the ability to build a great life, and Crohn's isn't going to change that- it'll be an aggravation and a drain on you energy, but at other times it will just be something you deal with. What you mustn't do is close yourself off to all the good stuff out there- if life is going to give you a predictable annoyance, than learn more about your own self, and build a passion for something, and then indulge in it- you don't have to be defined by your challenges.