So excited about this! The UOAA PSA will begin airing shortly on public television, as well as channels such as FOX News, CNN and Discovery Health.
Takin’ Steps Toward A Cure May 7, 2009
Did you know that approximately 1.4 million people in the United States have Crohn’s disease or Ulcerative colitis?
These illnesses, collectively known as Inflammatory Bowel Disease, cause chronic inflammation of the digestive tract. Currently, there is no cure.
Did you know that approximately 700,000 people in the United States live with an ostomy?
An ostomy is a surgically created opening in the abdomen where a portion of the digestive or urinary tract is brought through to create a stoma. An appliance, or pouch, is then worn over that opening to catch the waste that is eliminated.
I am one of the 1.4 million and 700,000.
I was diagnosed with Crohn’s disease at the age of 9. I spent 3 consecutive months in the hospital, only to be discharged to live a life that was no longer my own. My normal childhood gave way to a life controlled by bloody diarrhea, 30 bathroom visits a day, strict diets, and medications galore. It seemed my future would now be dictated by a debilitating disease. At age 15, after a particularly long flare up of the disease, I chose to have my entire colon removed, in hopes of bringing the disease into remission. Fourteen surgeries later, I now live with a permanent ileostomy, and finally…I am healthy!
I spent many years feeling alone and isolated. Questions danced through my mind…
“Why me?”
“Will I ever be healthy?”
“Will life ever REALLY be worth living?”
“Why did this happen?”
“Can anything good ever come from my suffering?”
In 2006, I joined the staff of the Crohn’s and Colitis Foundation of America, the only national organization dedicated to curing and preventing Crohn’s disease and ulcerative colitis through research, and to improving the quality of life of children and adults affected by these digestive diseases through education and support. I work in the Northeast Ohio office, and every day I receive calls from patients, young and old, asking the questions I, too, asked myself many years ago.
My journey with Crohn’s disease and an ostomy has opened up to me a world of opportunity, both personally and professionally. Everyday I get to share my experiences, in hopes of making someone else’s journey a little bit easier. My passion is to let others know that there is indeed life after Crohn’s disease and ostomy surgery. And it’s good life!
By using my story to help others and answer their questions, my own questions of years ago have been answered. I hope that by sharing my story, you will be compelled to help me help others by supporting me as I walk in the Take Steps for Crohn’s and Colitis Walk.
You can get involved in two ways – join my team and walk with me on June 6, 2009 at Progressive Field in Cleveland, or make a tax deductible donation to CCFA Take Steps in my name.
The walk is going to be a lot of fun – a family festival atmosphere with a DJ, food, inflatables and storytelling for the kids, company exhibits and presentations. The festivities start at 5:30pm and the 2.5 mile walk kicks off at 7pm. If you’re interested in walking with me and my friends and family on the Me & My (Osto)Mates team, go to this link:
http://online.ccfa.org/site/TR/Walk/Chapter-NortheastOhio?px=1233871&pg=personal&fr_id=1213
If you’re unable to walk with me, please consider going to my page and making a tax-deductible donation. Over 80 cents of every dollar donated to CCFA goes directly to mission based programs and research that benefit me and patients just like me!
Thanks for your support. I hope you’ll join me on June 6 to Take Steps toward research, support, and a future free of Crohn’s and colitis!
Having a uterus is a pre-existing condition? October 30, 2008
Affordable healthcare should be of particular importance to women this election season, as new insurance-company data dissected in today’s New York Times reveals that women pay much more than men of the same age for individual insurance policies providing the same coverage.
So, not only do I have Crohn’s disease AND a permanent ilesotomy working against me in the health insurance circus, but now having a uterus is equivalent to having a pre-existing condition? LOVELY…
Tidbits September 11, 2008
I’ve been blaringly absent from the blogging world the past 9 or so months. A lot has happened that frankly I’m not interested in putting on public display, so I’ve just not written anything. But I miss blogging – for me, it’s a type of journaling, and a way to chronicle important- and not so important things- that happen in my life. So I’m back. Here’s what’s going on as of late – in bullet points – because I’m just not clever enough at the moment to tie them all together with some profound theme as a skilled blogger would do 
- Jaidin started kindrgarten in late August. According to her, school is “awesome”. Uh huh. I’ll ask her round about November, after she’s gotten up early every morning for 3 months and had homework 2 nights a week every week. I suspect her answer may be slightly diferent. Or maybe I’ll be pleasantly surprised….
- I’m officially a Spa Diva. In June I joined a company called BeautiControl as a consultant. I’d been to a few of their spas, and was looking for a part time job that would allow me to work a flexible schedule, and BeautiControl kind of fell in my lap. So glad it did! I’m loving every aspect of it – and I’m making $$$. I’m not into shameless self promotion, so I’ll shut up now, but if you’re interested in having a mobile spa in the comfort of your own home, I’m your girl. Give me a call
- Spent last weekend in the hospital, or “Big House” as I affectionately call it. Damn peristomal hernia! Always causing blockages. I see my surgeon on Monday to see when we may be able to fit surgery # 15 into my busy schedule. I’m so frustrated with my body right now. And on top of it all, I caught a friggin’ cold while in the hospital (damn nosocomial infections!), so the percocet I’m taking for abdominal pain is doubling as analgesic for my sore throat. Whoa is me…
- I’m really sick of all the mudslinging going on with the presidential campaign. We’ve become a nation of partisanship, division and powerlessness of the present. In remembering 9/11/2001 today, I long for the day when we are no longer conservative America or liberal America, but are The United States of America.
- Found this wonderfully awesome ostomy blogger today. Go check out her website and read her blog. She’s candid, fun, and she offers some great ostomy lifestyle tips.
- Started reading The Shack about a week ago. This book blows so many ridiculous theological views of God out of the water – I’m loving it. As the back cover says “In a world where religion seems to grow increasingly irrelevant The Shack wrestles with the timeless question, ‘Where is God in a world so filled with unspeakable pain?’ “. Anyone else read The Shack? What did you think?
- I follow the blogs of friends of a friend who are in the process of adopting two kids from Haiti. The entire country of Haiti has been devastated by the recent tropical storms and hurricanes there, and the rescue center where these kids are staying is in dire need of help. Please go read Jamie and Aaron’s blog and search your heart as to whether you can help Real Hope for Haiti in any way.
That’s it for now. What’s new in your world? Send me some tidbits…I’d love to hear about what’s going on.
Invisible Illness Awareness Week Brings Thousands Together Who “Get It” September 9, 2008
As someone who has lived with an “invisible” chronic illness for over 23 years, I found the below organization and event a welcome addition to my own circle of support and advocacy. I’ve often said of my Crohn’s disease that “I wish it was somehow visible”, so that others might understand and “get it”. I can’t tell you how many times I’ve heard over the past 23 years “But you don’t LOOK sick”.
Living with an invisible illness can cause heartache and bitterness when one feels no one understands the significance of the illness. Invisible Illness Week provides that validation that people with invisible diseases often seek.
San Diego, CA — (SBWIRE) — 08/27/2008 — While we assume that most people are generally healthy, you may be surprised to find out that an alarming nearly 1 in 2 people in the United States live with a chronic illness. So why is it that most of us don’t even know when a friend or co-worker is dealing with diabetes, heart disease, lupus, or chronic fatigue syndrome? Because, according to the U.S. Census, about 96% of people have invisible illnesses.
National Invisible Chronic Illness Awareness Week is being held this year, September 8-14, 2008. It’s a secular event sponsored by Rest Ministries, the largest Christian organization that serves the chronically ill. Visit the invisible illness awareness campaign’s web site at www.invisibleillnessblog.org . You can be encouraged through dozens of articles, including daily guest bloggers, find ideas to get involved in the outreach, and goodies to help promote awareness, from silicone bracelets to brochures. Tired of those looks when you park in a handicapped spot? Be sure to pick up a license plate or bumper sticker.
The focal point of the awareness campaign is September 8-12 (M-F) during which 20 telephone seminars will be held on a variety of topics and are open to anyone. Topics may also be of interest to those with loved-ones who have an illness. Some seminars include:
- Assess Yourself: Find the Job You Desire and Can Do Despite Illness Limitations
- The Civil Rights of Patients with Invisible Chronic Illnesses
- Overcoming Self-Defeating Behaviors
- Secrets of Paying for Medical Care
- How to Get Paid to Blog
- After the Diagnosis: The Journey Beyond
The theme this year is “Hope Can Grow From The Soil of Illness.”
Lisa Copen, 39, began National Invisible Chronic Illness Awareness Week in 2002 as she continuously witnessed hundreds of people emotionally hurting just because they felt as though no one “got it.” Lisa has lived with rheumatoid arthritis and fibromyalgia for fifteen years and understands how validating it can be to just have one friend who you don’t have to explain everything to.
“Though there are hundreds of illnesses represented, and large differences in symptoms and pain levels, none of that matters more than feeling like someone understands you. When our best friends and family members are skeptical about our disease, it can be that last straw that sets us off into a spiraling depression.”
She says, “We plan to unite the millions of people who live with chronic pain and illness by offering an oasis of hope and understanding, as well as helpful information and practical tools to live the best life possible.”
Through the guest bloggers of Invisible Illness Week, to 20 seminars that supply tools to ensure that one is cared for–both body and soul–National Invisible Chronic Illness Awareness Week is succeeding in meeting that goal.
Find out more information and receive daily updates at http://www.invisibleillnessblog.org
Cleveland Clinic performs small bowel transplant July 18, 2008
Thought all my Crohnies may be interested in this link:
http://www.cleveland.com/health/plaindealer/index.ssf?/base/news/1216369870243350.xml&coll=2
Tears and inspiration from a survivor and friend January 6, 2008
I’m exhausted. I returned from Chicago today after wrapping up the UOAA Strategic Planning meeting. More about that later. But I wanted to share an email that was shared with me this weekend that absolutely touched my soul.
Those of you that know me well know of my admiration for Tony Snow, former White House press secretary. I had the pleasure of meeting Tony in February 2007 (you can read about it HERE). Tony is a colon cancer survivor, former IBD patient and an honorary Great Comebacks award winner. His cancer returned this past year just weeks after I met him at the Great Comebacks awards ceremony. I’ve not only followed Tony’s journey with cancer because of the IBD and ostomy connection, but also because of his strong faith and the spiritual journey his disease has taken him on.
At the meeting this weekend, a fellow board member and past Great Comebacks award winner shared with me an email from Rolf Beinerschke, former San Diego Charger kicker and founder of the Great Comebacks program.
Tony Snow may be losing his battle with cancer, but the grace and humility he has shown in his journey, and the lives of those he touches along the way will leave a legacy that reaches far beyond the grip of death.
Dear Great Comebacks family,
Earlier this year we had the privilege of meeting Tony Snow and his family at the National Great Comebacks Award celebration in Washington DC when we presented him with the 2007 Honorary Great Comebacks Award for overcoming the challenges he faced as a result of colon cancer. As we’re sure you will all agree, it was a very powerful evening. Ironically, however, ten days following the celebration Tony learned that the cancer had returned and he again had to endure the difficult chemotherapy treatments. Rolf just received a copy of Tony’s testimony and asked me to send it to all of you who had the opportunity to meet him. It is tremendously articulate and well written and a powerful reminder for all of us of what is really important. Please keep Tony and his family in your thoughts and prayers.
Warm regards,
Barb on behalf of Rolf
This is an outstanding testimony from Tony Snow, President Bush’s Press Secretary, and his fight with cancer. Commentator and broadcaster Tony Snow announced that he had colon cancer in 2005. Following surgery and chemo-therapy, Snow joined the Bush Administration in April 2006 as press secretary.
Unfortunately, on March 23, 2007 , Snow, 51, a husband and father of three, announced the cancer had recurred, with tumors found in his abdomen,- leading to surgery in April, followed by more chemotherapy. Snow went back to work in the White House Briefing Room on May 30, but has resigned since, “for economic reasons,” and to pursue ” other interests.”
It needs little intro… it speaks for itself.
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“Blessings arrive in unexpected packages, – in my case, cancer. Those of us with potentially fatal diseases – and there are millions in America today – find ourselves in the odd position of coping with our mortality while trying to fathom God’s will. Although it would be the height of presumption to declare with confidence “What It All Means,” Scripture provides powerful hints and consolations.
The first is that we shouldn’t spend too much time trying to answer the “why” questions: Why me? Why must people suffer? Why can’t someone else get sick? We can’t answer such things, and the questions themselves often are designed more to express our anguish than to solicit an answer.
I don’t know why I have cancer, and I don’t much care. It is what it is, a plain and indisputable fact. Yet even while staring into a mirror darkly, great and stunning truths begin to take shape. Our maladies define a central feature of our existence: We are fallen. We are imperfect. Our bodies give out.
But despite this, – or because of it, – God offers the possibility of salvation and grace. We don’t know how the narrative of our lives will end, but we get to choose how to use the interval between now and the moment we meet our Creator face-to-face.
Second, we need to get past the anxiety. The mere thought of dying can send adrenaline flooding through your system. A dizzy, unfocused panic seizes you. Your heart thumps; your head swims. You think of nothingness and swoon. You fear partings; you worry about the impact on family and friends. You fidget and get nowhere.
To regain footing, remember that we were born not into death, but into life,- and that the journey continues after we have finished our days on this earth. We accept this on faith, but that faith is nourished by a conviction that stirs even within many non believing hearts – an intuition that the gift of life, once given, cannot be taken away. Those who have been stricken enjoy the special privilege of being able to fight with their might, main, and faith to live fully, richly, exuberantly – no matter how their days may be numbered.
Third, we can open our eyes and hearts. God relishes surprise. We want lives of simple, predictable ease,- smooth, even trails as far as the eye can see, – but God likes to go off-road. He provokes us with twists and turns. He places us in predicaments that seem to defy our endurance; and comprehension – and yet don’t. By His love and grace, we persevere. The challenges that make our hearts leap and stomachs churn invariably strengthen our faith and grant measures of wisdom and joy we would not experience otherwise.
‘You Have Been Called’. Picture yourself in a hospital bed. The fog of anesthesia has begun to wear away. A doctor stands at your feet, a loved one holds your hand at the side. “It’s cancer,” the healer announces.
The natural reaction is to turn to God and ask him to serve as a cosmic Santa. “Dear God, make it all go away. Make everything simpler.” But another voice whispers: “You have been called.” Your quandary has drawn you closer to God, closer to those you love, closer to the issues that matter,- and has dragged into insignificance the banal concerns that occupy our “normal time.”
There’s another kind of response, although usually short-lived an inexplicable shudder of excitement, as if a clarifying moment of calamity has swept away everything trivial and tiny, and placed before us the challenge of important questions.
The moment you enter the Valley of the Shadow of Death, things change. You discover that Christianity is not something doughy, passive, pious, and soft. Faith may be the substance of things hoped for, the evidence of things not seen. But it also draws you into a world shorn of fearful caution. The life of belief teems with thrills, boldness, danger, shocks, reversals, triumphs, and epiphanies. Think of Paul, traipsing through the known world and contemplating trips to what must have seemed the antipodes ( Spain ), shaking the dust from his sandals, worrying not about the morrow, but only about the moment.
There’s nothing wilder than a life of humble virtue, – for it is through selflessness and service that God wrings from our bodies and spirits the most we ever could give, the most we ever could offer, and the most we ever could do.
Finally, we can let love change everything. When Jesus was faced with the prospect of crucifixion, he grieved not for himself, but for us. He cried for Jerusalem before entering the holy city. From the Cross, he took on the cumulative burden of human sin and weakness, and begged for forgiveness on our behalf.
We get repeated chances to learn that life is not about us, that we acquire purpose and satisfaction by sharing in God’s love for others. Sickness gets us part way there. It reminds us of our limitations and dependence. But it also gives us a chance to serve the healthy. A minister friend of mine observes that people suffering grave afflictions often acquire the faith of two people, while loved ones accept the burden of two peoples’ worries and fears.
‘Learning How to Live’. Most of us have watched friends as they drifted toward God’s arms, not with resignation, but with peace and hope. In so doing, they have taught us not how to die, but how to live. They have emulated Christ by transmitting the power and authority of love.
I sat by my best friend’s bedside a few years ago as a wasting cancer took him away. He kept at his table a worn Bible and a 1928 edition of the Book of Common Prayer. A shattering grief disabled his family, many of his old friends, and at least one priest. Here was an humble and very good guy, someone who apologized when he winced with pain because he thought it made his guest uncomfortable. He retained his equanimity and good humor literally until his last conscious moment. “I’m going to try to beat [this cancer],” he told me several months before he died. “But if I don’t, I’ll see you on the other side.”
His gift was to remind everyone around him that even though God doesn’t promise us tomorrow, he does promise us eternity, – filled with life and love we cannot comprehend, – and that one can in the throes of sickness point the rest of us toward timeless truths that will help us weather future storms.
Through such trials, God bids us to choose: Do we believe, or do we not? Will we be bold enough to love, daring enough to serve, humble enough to submit, and strong enough to acknowledge our limitations? Can we surrender our concern in things that don’t matter so that we might devote our remaining days to things that do?
When our faith flags, he throws reminders in our way. Think of the prayer warriors in our midst. They change things, and those of us who have been on the receiving end of their petitions and intercessions know it. It is hard to describe, but there are times when suddenly the hairs on the back of your neck stand up, and you feel a surge of the Spirit. Somehow you just know: Others have chosen, when talking to the Author of all creation, to lift us up, – to speak of us!
This is love of a very special order. But so is the ability to sit back and appreciate the wonder of every created thing. The mere thought of death somehow makes every blessing vivid, every happiness more luminous and intense. We may not know how our contest with sickness will end, but we have felt the ineluctable touch of God.
What is man that Thou art mindful of him? We don’t know much, but we know this: No matter where we are, no matter what we do, no matter how bleak or frightening our prospects, each and every one of us who believe, each and every day, lies in the same safe and impregnable place, in the hollow of God’s hand.” T. Snow
Televangelism (and mushrooms) make me sick… November 1, 2007
I’m home sick today. ( Mushroom pizza for dinner last night. Mushrooms don’t *usually* bother me, but I haven’t had an obstruction in almost a year, so I guess I was due. Curse the ostomy gods!)
Being home sick = too much time reading online. I ran across this article on clevescene.com and it made me ill ( and I thought my stomach was in knots from the mushrooms *roll eyes*). Now, I know my ultra conservative church friends may complain that Scene is a “liberal -left wing media outlet” intent on bringing a bad name to Christianity. That’s fine, but I really think guys like the televangelists in the article have done way more to bring shame to the name of Jesus than any left wing liberal could hope of accomplishing. I’m ashamed that two of these guys resided in my state.
Reading crap like this makes me nauseated. The article is here
Grab a barf bucket prior to reading…
Brain Dump October 7, 2007
What’s going on. In random bulletpoints. Of absolutely no order of significance.
- We’re back from Florida. All in all, it was a good trip. Jaidin was so excited about her first plane ride, and this is the first trip to the ocean that she’ll remember (We went to Destin when she was 15 months). It rained the first two and a half days we were there, was beautiful the next two and a half, and was a rainy the last day. We squeezed in as much pool and beach time as we could and did indoor stuff the rest of the time. I’ll post the pictures soon.
- I read an entire book while we were in Florida, and boy, was it a good one! There’d been some buzz by some friends of friends about The Irresistible Revolution by Shane Claiborne, so picked up a copy before we left for Florida. I have so many thoughts on this book but couldn’t even begin to put them to words right now. But I will be posting more, because this book has seriously messed me up and challenged me in a good way. So for now all I have to say is, if you consider yourself a follower of Christ…not a liberal, not a conservative, not a Protestant, Catholic, Charismatic or whatever…but someone who wants to seek a better way of doing life…this book is for you. Check it out.
- I just finished watching Rock of Love with Bret Michaels. I had to tape the finale while we were on vacation, but they just re-ran it right before they aired the reunion show, so I watched both. Not exactly quality viewing, but my goodness, what a guilty pleasure. What a train wreck of a reality tv show. Love it! And I’m SO HAPPY he chose Jess.
- Learning Hebrew has proved to be quite the challenge, but I am undeterred. I seriously spent one whole day at the pool with my Hebrew for Dummies book, and I really only conquered a few words and one simple sentence. It’s really hard when you don’t have a native speaker to “practice” with. I’m going to take lessons at a local Jewish college, but they only offer the course a few times a year, and unfortunately, right now doesn’t coincide with either of those times of year. So for now it’s me, my book and the ‘net. Maybe I should get some of the Rosetta Stone software. Anybody know if it’s effective???
- Bath and Body Works new scent Pumpkin Pie Paradise = A little slice of heaven. Can you say YUMMY? I bought the lotion, the bodywash/shampoo AND the home fragrance oil.
- I read an article lately about a new online dating site that caters to people with chronic health related issues. Prescription4Love.com I suppose I understand the appeal (being upfront about health related issues prevents the “big reveal” that those of us with chronic illness deal with in relationships), but as someone who has a chronic illness (Crohn’s disease) and some extra baggage…literally (ileostomy), I never felt the need to limit myself to having relationships with only other ostomates, IBD’ers or people with another health “issues”. More thoughts on this later…
- Cleveland sports suck. The Brown’…augh! The Indians are doing well (except for NOT sweeping the Yankees tonight). But I promise you, even if they make it all the way, I will NOT jump on the bandwagon. I’m too jaded. And another thing…I DON’T CARE IF LEBRON JAMES IS A YANKEES FAN!! OR THAT HE WORE A YANKEES HAT TO THE INDIANS GAME! He gets paid to win basketball games for Cleveland, which he does. Who he roots for in baseball is none of my concern. I can’t believe, with all that’s going on in the world, this is considered news-worthy. *rolling my eyes*
That’s all for now. Stay tuned…
Whirlwind August 20, 2007
Originally posted 8/20/07
I FINALLY arrived home last evening at about 10:30. Weather delayed me in Chicago for about 4 hours. I hate the airport. Rotund, obnoxious men next to me snoring. Crabby children CLEARLY in need of diaper changes sitting accross from me. Getting up to use the bathroom, only to find your seat has been taken by one of the thousand other passengers that are also stranded in the Windy (and cold and rainy) City.
I am exhausted. Don’t get me wrong…I have had an absolutely AMAZING two weeks. Both the IOA in Puerto Rico and the UOAA Conference in Chicago changed my life in profound ways…and hopefully in the nexy day or so I will find time to elaborate and share pictures. For now though, I need to unpack, do LOTS of laundry and get some more sleep.To all my IOA and UOAA friends, I miss you all terribly. There is something magical and comforting about the bond we all share. I can’t explain it, but I know you all feel it too. Much love to you all
Hello from the Rockies July 7, 2007
I’ve been here in Boulder since Thursday for the 2007 Youth Rally. Having a fantastic time!Super busy, super tired, super blessed… I am surrounded by an amazing group of counselors and kids. 
That’s it for now…I’m off to bed. Here’s a link to the Rally photos taken daily by our dedicated photographer. They’re updated each morning with the previous day’s pictures.
Feel free to check out the albums and get a taste of Rally life. I’ll blog more about my time here and post my own pics once I get home Wednesday evening and have had more than 4 consecutive hours of sleep! 
Photos are here: www.shutterfly.com/pro/dougsphotostop/rally2007
A healer, educator, motivator, inspiration and friend June 30, 2007
Thursday night, the Northeast Ohio chapter of the Crohn’s and Colitis Foundation held their annual Premier Awards dinner, honoring lay volunteers and members of the medical community that have made significant contributions to the IBD community.It was an exciting evening for me…two of my favorite people were being honored. My pediatric GI, Dr. Robert Wyllie, was presented with the Premier Physician Award, and I got to present the Distinguished Service award to the most amazing WOCN nurse, my friend Paula.
My speech:
I first met Paula as teenager. 16 years ago this month, I lay in a hospital room in Cleveland, having just had ostomy surgery in hopes of renewing my quality of life that had been ravaged by inflammatory bowel disease.
Depressed and angry, I laid in the bed with the blinds closed and a huge sign that said “Do NOT bump my bed” posted on the wall above my head. A knock came at the door, and before I could say “Go Away!”, in waltzed a pretty, petite blonde woman in a white lab coat. She walked directly to the window and swung open the blinds. She then turned to me, poised herself on the edge of my bed and said ” HI, I’m the stoma nurse”.
I rolled my eyes and thought to myself “Well ain’t that nice!” I wanted nothing to do with her.
She assembled the supplies and then began showing me how to change the appliance. When we were all done she asked “Have you ever met anyone with an ostomy?” I almost laughed! She’s the nurse…doesn’t she know that all ostomates are 80 years old? How would I know one? “No”, I replied. And with that, she shared with me and my mom that she’d had a stoma since childhood.
When she left my room, I possessed something I had not had prior to my surgery – HOPE. That day was the beginning of a relationship that would change my life.
Those of you that know Paula know that she wears many hats.
She’s a healer. As a highly skilled and decorated nurse, she provides care for patients that have encountered life changing surgeries. Her expertise in the clinical setting restores their bodies, and her depth of compassion and encouragement coupled with her ability to offer proof that there is indeed life after ostomy surgery heals their spirit and gives them hope.
Paula is an educator. Each year she trains several dozen new Wound Ostomy and Continence nurses in the field that she herself was instrumental in helping to develop. She travels the globe, sharing her expertise with nurses, physicians, and ostomy supply companies world-wide. She spearheads research and writes articles for major medical publications, and is guest faculty at nursing schools both here in the states and abroad. I’ve had the privilege of seeing Paula in action, as well as speaking with former students and business associates. Everyone agrees- she’s the best of the best!
She’s a motivator and an inspiration. It’s Paula’s story of overcoming her own medical challenges that spurred me on in my early days with an ostomy. Witnessing the victorious life that she lived, dedicated to serving patients facing mountains that she herself had overcome, made a huge impact on me as a teen. I believed that if she could do it, then I could too. It was Paula who first encouraged my own interest in the field of nursing and enterostomal therapy. And when Crohn’s disease took away my hopes of completing that dream, it was Paula who assured me that I could still make a difference in the the IBD community without an RN degree. It was Paula who helped send me off, at age 17, to the Youth Rally, a camp for kids with ostomies and other bowel and bladder diversions. And many years later, when I was elected President-Elect of the United Ostomy Associations of America, Paula was my biggest cheerleader. When I took my position with the Crohn’s and Colitis Foundation of America, Paula welcomed me as a colleague in the fight against Crohn’s and colitis and continually impresses upon me the truth that we are making a difference in the lives of those suffering with IBD, one patient at a time.
Over the years, Paula has not only served the IBD community here in Northeast Ohio, but has touched the lives of Crohn’s and colitis patients worldwide. Through the training of nurses who specialize in ostomy care, through consulting with companies that provide the latest in ostomy supply technology, and through her dedication and commitment to the healing of her patients both physically and mentally, Paula has planted a legacy of caring service in the lives of all she has touched.
For these reasons and many more, it is my honor and privilege to present CCFA’s Distinguished Service Award to Paula Erwin-Toth.
Presenting Paula with her award ( that’s her grandson beside us ..LOL)
Paula and I
All of the honorees 
Paula with Jim Moran and Stephen Forden of ConvaTec
Keep Peddling: Reflections on GYGIG June 13, 2007
I did it…I survived 3 days in the wilderness of upstate NY.
(Ok..maybe it wasn’t really wilderness, but it came close enough for this city girl.)
For all you doubters out there…I went 3 days without “doing” my hair (thank goodness for pigtails), and I broke not a single nail. So 
And guess what…
I actually enjoyed it. Maybe not the camping part so much ( although I’ll definitely do it again), but the GYGIG ride was an amazing experience. Over 150 riders and crew…each with a unique story about how Crohn’s and Colitis has affected their life, each riding or crewing for a different personal reason, but committed to the ‘corporate’ mission of the ride.
As I watched the riders and crew each day, I was reminded of my own “journey” with IBD, and it can be likened to a bike ride. In the beginning, I was extremely focused on the end…when, where, how will it be over?
But over the years I’ve learned to not focus so much on the destination, but to appreciate the “ride” and the progress I have made. There have been hills; hospitalizations, ostomy surgery, lack of insurance, emergencies, “accidents”. “Hills” that at the time seemed insurmountable, but somehow I made it to the top. There have also been descents and valleys; depression, self destructive behavior, wondering what the future held. Determination and perseverance allowed me to keep peddling and eventually reach flat, even ground; acceptance. And all along the way, there have been rest stops and cheering stations; a WOC nurse who not only encouraged me but inspired me, my involvement with Youth Rally, working for CCFA, being elected to office with UOAA, and all of the other amazing opportunities I’ve been afforded because of my journey with IBD. But most importantly, there was the crew; the people that I met along the way who cheered me on, picked me up when I couldn’t go any further and “swept me along”, those who fixed the broken parts, those that showed me how to “ride” when I was a new cyclist in the IBD journey, those who “rode” before me and marked my way, and those who believed in my ablity to finish the course, even when I doubted.
My ride is far from over. Each day I get up, I set out along the path. Some days I am the rider…climbing hills, careening down the other side, pulling out of the valleys, and picking up speed on the stretches of even gound. And some days I’m the crew…helping a new “rider” get their bearings, sharing my story and encouraging them to “keep peddling”.
Truth be told, I’m not positive of my destination. But I’ve learned that it doesn’t so much matter- I’m on an incredibly scenic journey and I’m going to keep peddling to wherever it leads.
Here’s a quick recap of the weekend events:
Arrived in NYC on Thursday afternoon. Hooked up with Julielyn and Paul and did “touristy” things like Times Square, met Spiderman, and we visited the World Trade Center site. Checked in for the ride, attended ride meetings, then headed out on the town and met up with a sorority sister I hadn’t seen in about 12 years ( Hi, Laurie!). Then back to the hotel and bed because I had to be up at the butt crack of dawn.
Got the the starting Pier in Tribeca at 5am Friday. Made coffee, set up breakfast, helped unload gear truck and set up bike racks, etc. Opening ceremonies, riders departed. Tore down above mentioned items, helped reload gear truck, then headed upstate to camp 1. Arrive at camp, help clean dining hall (nasty) and bathroom/showers (nastier). Help unload gear truck (again), set up tents with the guidance of the Tent Fairy, got text from friend Julielyn (rider) who was in ER getting breathing treatment next to the rider (Yoni) who got hit by a deer!, passed out towels, took a much needed shower, ate dinner, attended crew meeting, chased tumbleweeding tents across the field (it was a bit windy) , got in my tent and collapsed in exhaustion. Awoke at 1am to the sound of rain. Had to pee (of course!), so walked to bathroom with flashlight in rain with one contact suctioned to my eyeball and other eye barely functional (fun times). Back to tent, wonder if I should pack up my stuff so it doesn’t get wet…should I get out rain gear in case it starts storming and I must make a run for the pavillion. Decide I am too tired to care, try to go back to sleep. Hear scary noises coming from surrounding woods and have ridiculous thoughts of Camp Crystal Lake and the Blair Witch Project.
Get up at 5 in the morning, make Gatorade and icewater for riders, pack up my stuff, help take down tents, clean up, tear down bike racks, load gear truck (again), then head to breakfast at the Elk’s club. Eat, then head upstate to Earllton. Arrive at camp 2. Unload gear truck (again!), set up canopies, tents, bike racks, snacks, Gatorade, water, yada yada. Rest a bit (nice weather this day) and check out campsite. See lots of double wides and garden gnomes.
Riders start arriving, direct them to tents, hand out towels. Eat dinner, listen to Solid Gold ( 4 men, 50+ yrs old, singing 50 Cent…classic..), hang out with riders and crew, talk, collapse in tent exhausted.
Awake at 5am, shower, eat breakfast, tear down camp, load gear truck (yet again), head upstate to Saratoga Springs and Skidmore College. Set up rider holding area, unload gear truck (for the LAST time!), await riders. Riders finish ride, I get teary-eyed several times, take lots of photos. Then closing ceremonies. I address crowd on behalf of UOAA, get teary-eyed again. Barbeque dinner, then goodbyes.
Through out all of this, the reflections from above were flowing through my mind. I just gave you the nuts and bolts of all that happended. But like the T-shirts say …
“It’s so much more than a ride”…
The Big Easy April 26, 2007
This past Sunday I headed off to New Orleans to do a site visit for a conference I am planning for 2009.
After an uneventful pair of flights (Cleveland to Charlotte, Charlotte to New Orleans) I met Ken (UOAA’s current president and my “boss”) at the airport and we cabbed it to downtown. The Sheraton is located right in the downtown area almost between the French Quarter and the Garden District. We checked in and were informed that we had been upgraded to Executive Suites. Pretty cool! However…of course they upgraded us…the rooms were comped to begin with, and they want us to throw a $50,000 conference their way. Duh! The room was great, but really, if they wanted to wow me, they should have put me in the Presidential suite with the whirlpool tub. ( I am just kidding…I’m NOT a hotel snob. I was quite appreciative of my free executive suite 
)
We dropped our stuff off in our rooms and then headed out to find some dinner. We ended up at this place called The Gumbo Shop. YUM! is all I have to say about that. I had a traditional Creole meal – Chicken Andouille gumbo, Chicken Espagnole with rice and garlic potatoes, and bread pudding with whiskey sauce. And of course I topped it off with an authentic New Orleans praline that I purchased on the walk home! (I bought a whole box and have been eating them since I got home. I believe I’ve found the newest form of crack! 
)
Back in the room, I enjoyed the view from my floor to ceiling window, chatted on the phone, answered email and proceeded to pass out. I do believe it was a Creole-induced coma
Monday morning we met with the hotel sales manager to talk business, view all the meeting space, etc. The hotel is beautiful, spacious, and has a full-service Starbucks in the lobby, which gets them my vote!
After our meeting, we consulted with the concierge about things for us to do in the area. I REALLY wanted to take a ghost and cemetary tour of the city, where they show you all the “haunted” spots, and tell stories like that of Marie Laveau ( famous voodoo priestess). But alas, we found out the tour was a 2.5 hour WALKING tour, and since yours truly only brought strappy platform sandals and high heels, we decided against the walking tour.
We did end up on a Super City bus tour that took us everywhere! We started out in downtown and toured all the neighborhoods. We even saw some of the areas decimated by Katrina. We went north to lake Ponchatrain and then came back down via the Garden District, past Tulane and Loyola. Beautiful architecture, magnolia blossoms, and Mardi Gras beads were everywhere ( St. Charles in along the parade route). The tour driver was so knowledgeable about the city, giving us history of Creoles, Cajuns, the cities wealthiest occupants, as well as famous people that have inhabited the city through the years. He talked alot about Katrina and pointed out various landmarks and places of interest along the way. I think the best part was his snippet about the cemetaries and how the plots and tombs are utilized. The tour was a 2 hour history lesson and I enjoyed every second of it!
After the tour we walked over to the famous Cafe Du Monde and had beignets and cafe au lait. WONDERFUL! We sat on their outside patio, talked about love, life and UOAA business and listened to great street musicians play and sing. It was a laid back, relaxing afternoon…and really gave me a nice opportunity to get to know Ken better.
That evening we headed down Bourbon street in search of dinner. After passing Huge A$$ Beers to Go and Big Daddy’s Topless and Bottomless, we decided that we’ll not need to plan any programming for ‘09. I mean really…what else do you need for a successful conference? ( I am totally kidding, of course) We ended up in this place called Yo Mama’s for dinner. Yes, it was as hole in the wall as it sounds, but had a really cool vibe…and surprisingly enough, great food!
When we got back to the hotel, I was really tempted to go back out on my own and explore, but I knew Jon ( not to mention my mother and grandmother) would freak out if they knew I ventured out into a strange city by myself…afterdark! Oh the horrors! So I went downstairs and hung out in the lobby and at Starbucks by myself for a while. I chatted with a few nice folks in town for a disaster recovery conference, but mostly I people-watched, one of my favorite things to do. I love watching people interact, imagining the stories behind their lives, wondering about their dreams, etc. I went back upstairs at about 11pm, packed up most of my stuff and went to bed.
Tuesday morning we met with another hotel rep, had breakfast and headed to the airport. It took me all day to get home, thanks to a two hour layover in Charlotte. Jon and Jaidin picked me up at the airport and suprised me with a huge bouquet of brightly colored daisies! I love walking out of baggage claim to find two smiling faces and pretty flowers to greet me!I had a fantastic time in the Big Easy, and I think it’s pretty probable that we’ll be having a conference there in 2009. Now all I have to do is convince Ken that our next site visit should be sometime in mid-February next year. Can you say “Mardi Gras”?
Sad March 27, 2007
http://news.yahoo.com/s/ap/20070327/ap_on_go_pr_wh/tony_snow_cancer_12
I must admit, I shed a few tears today when I read this story. I know you’re asking “what kind of a dork cries over Tony Snow?” Me, apparently. But let me explain why…
I’m a big Tony Snow fan. I’ve watched him on TV and listened to him on the radio for years. And I’ve always kind of had a ‘married lady’ crush on him . And finally…dream come true…I got to meet him last month.
As president-elect of the United Ostomy Associations of America, I was privileged to be invited to attend the Great Comebacks Awards ceremony in Washington, D.C. ( www.greatcomebacks.com ) Great Comebacks is sponsored by Convatec and The Crohn’s and Colitis Foundation of America and is a national award honoring someone who’s made a Great Comeback from ostomy surgery. ( Many of my friends are current or past honorees!) It was a fun trip…I got to lobby on Capitol Hill and meet some CCFA and ConvaTec brass, and the past and present honorees got a tour of the White House and an impromtu meeting with George W. (Marvin, the younger Bush brother, has ulcerative colitis and an ileostomy) But one of the highlights of the week for me was meeting Tony Snow.
Many people know of Tony’s battle with colon cancer a few years ago. But most people don’t know that he battled ulcerative colitis for years before that, and his IBD eventually led to his colon cancer. He even had an ileostomy for 9 months while recovering from his colon resection to treat the cancer.
Tony was this year’s Great Comebacks honorary award recipient. During the reception before the awards dinner, I had the opportunity to meet and talk with Tony. He was so personable and welcoming. He asked me all about my involvement with UOAA and CCFA. I, of course, was tongue tied. But we got to shake hands and take a picture together…it was a ‘pinch me’ moment!
While accepting his award, he talked about his faith and all the people who had helped him in his journey to make a “comeback”. His wife and 3 young kids were in the audience, beaming. And at that moment, to me, he was just Tony…another survivor, a fighter, a conqueror. And I had all the more respect for him.
I watched with interest last week as news circulated that he was having surgery to investigate a ‘mass’ in his abdomen. I prayed that it wasn’t cancer, for so many reasons. I have dear friends that are colon cancer survivors. I’m sure everytime they hear of another survivor’s recoccurence, it’s a blow to their spirit. I hurt for Tony’s family and friends and the fear they must have been experiencing. And I hurt for Tony, not the celebrity, but the man who had fought so hard ( like so many of the people I know) to remain in the game of life.
So when I read this morning that it was indeed cancer, I cried. I can’t totally explain why…other than that my heart hurt..for my friends who are survivors, for Tony’s family, and for the man who was once an icon to me but is now so much more than that.
