Just Dance!

by on Tuesday, November 10, 2009 21:53
This entry is filed under: updates

There’s that great line in the bible (or the Byrds song, whichever you prefer), “a time to weep and a time to laugh, a time to mourn and a time to dance.”

Prior to my diagnosis of UC and, subsequently, Crohn’s, I was a devoted and passionate dancer.  It was my “thing.”  It was also one of the first things to go when I got too sick to be that physical.  For a long time, I was truly devastated that I couldn’t dance anymore-and I really couldn’t-not the way I had my whole life, not the way I was best at, not the way I loved.  I was actually teaching jazz when I was 17 and totally chock-full of Prednisone.  I would go into the tap room because it had the cool tile floor during my breaks because the Prednisone made me so hot.  Eventually, Crohn’s kicked my ass.  I was able to go to Europe for a few weeks in the summer after my last year of teaching dance, but as soon as I landed in the states, I was admitted to the hospital for a week for a flare.  The following years were tolerable.  I wasn’t teaching or taking classes, but I was in college, doing well in school and that occupied me enough to serve as a distraction.  Don’t get me wrong, I’d occasionally bust it out in my dorm room when my roommate was away, but it was nothing like it used to be for me.  About a year later, my disease progressed rapidly and severely.  I tried several treatments, nothing worked.  Eventually the bleeding and fatigue got so bad that I physically couldn’t leave my apartment, could barely eat, and stayed mostly in bed.  There was no dancing in the living room then.  Soon after, I made the decision to have the J-pouch surgery, which I maintain is one of the best decisions I’ve made in my life.  Although I felt incredibly better after getting the diseased colon out of me, things were a struggle for the first year.  About 9 months after the final surgery, my doctors discovered I had Crohn’s. I started Humira and a few other drugs and am now in my second year of remission and doing great! I am also proud to report that I attended my first dance class in TEN years tonight.  (Has it really been that long?)  Let me tell you, I am hella PROUD of myself for A) going back, B) keeping up with a room of 18 year olds, ten years younger than me, and C) for doing all this with my rockin’ Jpouch and Crohn’s disease.  For a long time, I remembered thinking I’d never dance again-that the diseases would take away all joy from my life because I was too sick and exhausted to live my life.

This post is a reminder to keep fighting.  Health is a wonderful thing we often take for granted.  It is also a reminder to challenge yourself, get out there and do something fun.
I may have a little trouble walking tomorrow (I’m a smidge out of shape after 10 years), but you can bet your ass I’ll be back in that studio leaping, dancing, and being me.

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11 Responses to “Just Dance!”

  1. avatar

    Brevin says:

    November 10th, 2009 at 10:22 pm

    Dangit you just inspired me to post an update as well.


  2. avatar

    felicia says:

    December 14th, 2009 at 10:47 am

    im a dancer to! im 17 and hiphop is my life… i am going in for the j pouch surgery in 2 weeks and was/am afraid ill not be able to acheive my dreams as a dancer… then i read this story and started to cry you made me feel so much better about it! thank you! keep dancing!



    Mark Reply:

    Felicia, You will be very much able to dance your heart away in a couple weeks after you’ve recovered. Don’t worry about that. I’ve regained my physical ability 100% to snowboard, skateboard and do the things I love. Lizz, is a blogger on here and a dancer too – She has Chrons with her jpouch so her situation is a bit more serious than just a jpouch surgery, but even with her challenges she still dances http://www.jpouch.net/2009/11/10/just-dance/



    felicia Reply:

    thank you ^_^ all of your stories and advice helps. 2 days now O.O thank you =]


  3. avatar

    concerned grandma says:

    December 19th, 2009 at 10:22 am

    I appreciate reading all these success stories and it makes my mind a little more at ease. My grandson is having his first surgery right before Christmas and one week before he turns 17. He has been miserable and so tired. He does not want to eat, because then he has to use the bathroom and he bleeds alot.Can someone tell me if there is something we can do to help him at this point.Is this normal, lack of appetite and being so tired?



    Colin Reply:

    At least in my situation, there’s really nothing you can do. In the weeks before my first surgery, I was absolutely miserable. In-fact, for the last two weeks, I only drank liquid protein shakes because I couldn’t eat food without immediate bowel movements and blood loss. My best advice is just to be very accommodating of him and do what you can to make him comfortable until the surgery day comes.



    Megan Reply:

    Yes, it is normal to have depression, avoidance of foods since food is the enemy, fatigue, pain, unwillingness to leave the house due to accidents due to urgency. UC has stripped him of his life and he feels worse than you can even imagine. Only 10-15% of UC patients are sick enough to need surgery, this indicates your grandson is sick. My advice to accept how sick he is now and let him be. Your families job is learn everything you can about his surgery and what will happen with his temporary ileostomy (the stoma and bag). Make sure to stay POSITIVE and excited that the surgery is coming because it will give him his 17 year old life back. He will be able to live normally again and healthy. The scars on his belly will be minimal (assuming he is having lapro surgery), so in a few months all this will be in his past and wonder why he waited to have surgery. Here is Mark’s (my husband) 9 month update after his takedown surgery (his second surgery) http://www.jpouch.net/2008/08/08/mark-9-month-jpouch-update/



    Julie Missal Reply:

    Your grandson is completely normal. My son turned 18 in June and had his colon removed and jpouch created 4 weeks later. His last couple months trying to get to 18 so he could use the surgeon we wanted and get thru high school and graduation were miserable. He went into surgery weak, taking 100’s of pills a week and looking like a skeleton. The first few weeks of recovery were hard but he headed off to college in September and just had his takedown surgery 5 days ago. In between first and second surgery he gained 40 pounds back – close to his pre surgery weight and he has more energy and no pain. The bag seems like an awful thing but he admitted the other day after it was gone that it really wasn’t that bad – and even kind of handy sometimes. Support him and the family emotionally – the best thing that happened to Sean was getting support from close friends and feedback from other people who had been there and gotten thru it and returned to a “normal” life. If your grandson has questions I’m sure that Sean would be happy to chat with him via email or IM or whatever the kids do nowdays.


  4. avatar

    Sharde' says:

    September 9th, 2012 at 9:14 pm

    Hi! I just wanted to tell you this also inspired me. I have have an ileostomy and I’m a dancer. I’m a cancer survivor and side effects from my bone marrow transplant lead to me getting the ileo. I was really weak and way out of shape for a long time but now I am better and able to get back into the studio. I was nervous about dancing again at first but I’ve learned most bridges you have to cross once you get to them. So I’m very excited to get my butt back to a ballet barre and give it my all! Do any of the other dancers with j-pouches or ostomies have tricks for what to wear or what to do with their bag when dancing?



    Lizz Reply:

    So glad to hear, Sharde! I got into yoga big time about 7 years ago and it’s my new obsession/addiction.  I still dance ALL the time (again, often in my living room). I did a few tap classes last year and it was super fun.  I would just recommend a good leotard and maybe a wrap over it? Some kind of cute wrap skirt or such.  I was always really paranoid when I had my bag, but when it was mostly empty and I had on some kind of lycra/spandex clothing (bathing suit, etc), especially if it was black, unless you knew about the ileo and were looking for it, you’d never know.  Good luck and keep dancing!


  5. avatar

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