this sucks.

This sucks. This talented young man just graduated from Penn and announced his wedding to his fiancé, who also has Crohn's Disease. http://www.phillymag.com/announce…/jessica-leva-zack-seigel/

They met at Crohn's and Colitis Foundation of America Camp Oasis, a special place near and dear to my heart, that provides a safe place for kids to be around others suffering from the same illness as them (and have a blast while feeling safe and accepted!).
https://secure3.convio.net/ccfa/site/Donation2;jsessionid=E34293592B1B0E2EB2462DB72F7060BE.app321b?df_id=16402&16402.donation=landing

Zack died from lymphoma, a known side effect of being on medications for Crohn's, including the one I take. My heart is breaking for his family and loved ones. http://www.thedp.com/article/2015/01/former-rower-dies-of-crohns-disease-and-lymphoma

I am often amazed to see how similarly people with my struggles feel, probably because I'm usually in my own bubble for protection... A few quotes shared on Zack's fiancé Jess's page that I too have lived and breathed many times over:

"Everyday I am reminded that our life's journey is really about the people that touch us." - Stuart Scott

C.S. Lewis once said, "Friendship is born at that moment when one person says to another: 'What! You too? I thought I was the only one."


Zack and Jessica, a beautiful love story
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world IBD day- may 19th.

Today is World IBD (Inflammatory Bowel Disease) Day. I honor this day and raise awareness by sharing a little bit of my story. I salute all survivors and those we have lost... their fight was not in vain! I was diagnosed with Crohn's Disease at age 12. It was a very scary time, I lost so much weight and hated having to drink Ensure to try to keep weight on, and remember feeling embarrassed on the school bus when it spilled, and at school... This was the beginning of my "hollow leg" syndrome; I could eat and eat and nothing stuck, as I was not able to absorb nutrients. I took my special milk and lactose free food wherever I went and I tried to learn what it meant to "take care of myself"... but that was really hard at that age. Back then I didn't know anyone else that had this, and I felt different and couldn't yet see the beauty in that. I was in remission until age 16, when I was out of high school my last year for a month. I was overwhelmed, very sick, down, and scared. I'm so grateful to my loving family, friends, and teachers who gave me hope and loved me unconditionally through that period and in all the years of struggle to follow. I will always remember my teacher Mrs. Davis, who very strongly told me that "I need to learn to ask for help"... (I desperately hated to be a burden to anyone- this chronic disease is very challenging and greatly impacts the support system of those affected)- that was one of those life lessons you never forget.

I was proud to graduate from college, enduring hospitalizations each year for a week or so, usually each fall and spring, where I crashed from exhaustion and rested my digestive system on IVs. When I felt OK, I pushed like crazy, because I was always scrambling to live the life I wanted in my head, and felt betrayed that my body had other plans and kept me from my dreams and desires. I had so many dear friends and family lift me up at U of R, and U of A... Jennie do you remember sneaking me out of the hospital in my gown, IVs and all, and wheeling my wheelchair across the street to Bruegger's Bagels?!! Laugh I was so hungry... was I addicted to gluten back then or what?! I have always been close to my one and only Grandma, but she was my rock when I was ill and always came to visit me in the hospital (when my family lived far away) and supported me emotionally. Hammy, Cori and Caity (my most favorite nurse!)- I am forever in awe of what you did for me back then, and continue to do. Crohn's is an invisible, inside disease- "but you don't look sick!" is common. Oftentimes the better I looked, the worse I felt! Skinny, porcelain skin... what's your secret? Trust me, you don't want to know my "secret".

I continued to decline over these years, and things reached an all time low when I was in Austin, TX- I did everything under the sun as last ditch efforts to try to get better: special diets, many alternative therapies and conventional treatments, but I was rapidly declining and nothing worked, and many of my systems were failing. I had surgery in Dec. 2002- four feet of intestines removed, holes in my bladder and abdomen repaired, and a fistula- it was a 4 + hour surgery, things were worse than they thought when they got in there. Thank you to my parents and Godparents for waiting for me during that grueling time and being there when I woke up and in the months to follow. Long recovery process, and then later that year I had a C.Dif infection from the hospital stay, which almost killed me too- I took a month to recover and visit 4 medical centers in North Carolina, where I discovered many new allergies I had of all kinds, and decided to move here in 2003. The C.Dif, ironically, brought the Crohn's back, and I didn't get to experience any disease free years as I had hoped.

A rectovaginal fistula appeared in 2005 (horrifying and so difficult to treat), and I met 2 incredible doctors that year, Jade Teta and Keoni Teta at the
Naturopathic Health Clinic of North Carolina, who helped me get started on slowly turning all this bad news around. They were the first doctors I went to that had anything positive to say to me- whenever I went to any doctor (and I've been to a million) it was always, "you're our worst patient," most severe, no cure, nothing we can do, etc etc. I can't tell you how many doctor's offices I've left in tears. I am beyond grateful for the Teta's coaching, encouragement, love and support at the right time in my life. I volunteered for Camp Oasis, a camp for youth with IBD, in 2006 and had an incredible time. The fistula returned in 08-09, and I went on a liquid diet for six months, along with other healing remedies, and was able to get things to improve greatly (to where I had my first Crohn's free colonoscopy ever!). I volunteered at Victory Junction Gang Camp for children with chronic illness for IBD week during that time, and though I was tired, I was incredibly lifted up by strong young women who were worse off than me, and it gave me powerful perspective. I had a plug surgery in 2010 to repair the fistula, which had a 20% chance of working, and IT WORKED! My posse wore "It's Gonna Work" buttons for 3 months while we nervously waited (even my surgeon!). Since then that has been one of my mantras in life.

In recent years, I've continued slowly on my upward climb to restoring health (I don't even remember what it was like to be completely healthy, it was that long ago). Hypothyroidism came in 2011, all those years of adrenal exhaustion, and near daily chronic migraine in 2012. I feel sure of connections between these things and am working to puzzle it all out, while also trying to focus on the positive and get busy having a life. I am almost twice the size of when I was at my sickest, which means I'm absorbing my food much better and am so much healthier overall. I'm extremely fortunate in light of what so many others go through, and I know this. I have had several second chances at life, and I'm humbled to be here. I drink lots of concoctions, take a zillion supplements, and have to work at this daily, constantly reminding myself I'm not like everyone else (which is hard because I always wanted to be "normal"- whatever that is!). I have finally started this website, many years in the making, where I write about my journey, the impact of Crohn's and life.

Thanks for reading, and taking the time to learn a little bit more (
http://www.ccfa.org), and maybe watching this dance from these guys... Because you have to smile! Happy https://www.youtube.com/watch?v=A0sOFTCz4ck

mice

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on attitude & perspective

Attitudes are self-created. You are free to choose to be victimized by circumstance or people, or you can choose to look at life with an open mind and be victorious. No one else can choose your attitude for you. Your perspective and choice of attitude gives you the power to be in control. That is the essence of true freedom. ~ Irene Dunlap


This was one of my favorite quotes I hung in my cabin when I was a camp counselor at Camp Oasis, a camp for kids with Crohn's and Colitis. There were others too that I brought with me to decorate the walls and the girl's minds, wrote with markers on colorful construction paper that my mom and friend John helped me make, some that I still have hanging on my wall in my office below, reminding me of that experience.

I paid over $1000 to volunteer at this camp, all told, in the summer of 2006 in St. Louis, MO- now that is saying something! They say you should ask yourself what you would do for free, or if money was no object- and whatever it is, do that. I've certainly volunteered for a lot of camps over the years, so it will most definitely be a part of my what-I'm-going-to-be-when-I-grow-up plan!

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