Category Archives: inflammatory bowel disease

Spreading the Hope of Youth Rally!

Remember your teenage years? Wanting the right hair and clothes, having a crush on that special someone – who didn’t know you existed? Recall feeling awkward and out of place…all alone? Remember trying to fit in? Now imagine that you had a chronic illness that required surgery to save your life. What if on top of all the “normal” adolescent issues, you used the bathroom through a pouch on your side, because your diseased intes­tine had to be removed. How’d you like to miss your birthday party, the big game, even prom, because you were in the hospital- AGAIN! Sounds like a bad dream, doesn’t it?

For thousands of teens across the nation, THIS IS REALITY.

A reality that I was all too familiar with. Diagnosed with Crohn’s disease at age 9, I spent much of my childhood in the hospital. When I was 15, I had my diseased large intestine removed, leaving me with a condition called an ileostomy. The ileostomy is a surgically created opening in the abdomen through which doctors bring a portion of the small intestine. I now wear a prosthetic (called a pouch) on my abdomen that my waste is collected in. There are other types of ostomies,too, depending upon the type of bowel or bladder diversion the person is in need of.

When I was 17, I attended my first Youth Rally. It was there that I met young people from all over the country who shared my very same experiences. For the first time, I didn’t feel alone, and the support and camaraderie I received through Youth Rally shaped my life’s work.

I’ve gone on to be a Rally counselor over 12 times, helped to start a support network for young adults with ostomies and diversions, and have  led the ostomy community in the U.S as the president of United Ostomy Associations of America. I now work for an amazing company that makes undergarments for people that have had ostomy surgery, helping them regain their confidence and active lifestyle.

My passion is to let others know that no matter the trauma a person has been through, there is always a purpose for the suffering, and a light at the end of the darkness. I want others to recognize that they too can rise from the ashes of disease and live life to it’s fullest, something I have been doing since 1993 when I first attended Youth Rally as a camper. Rally taught me that I was not alone, and that is what made all the difference.

By returning to Youth Rally as a counselor, I have the opportunity to use my experiences (with Crohn’s Disease and 14 subsequent surgeries and as a leader in the ostomy community) to bring a message of hope to other young ostomates who may not see the light at the end of the tunnel.

Would you consider making a donation to help me share the hope of Youth Rally with teens from across the country?

Thank you in advance for your support!

*** To make a donation, you can click on the Sponsor Me link on the right side of this page, or navigate to my Youth Rally Fundraising page ***

For more information about Youth Rally, see their website located here

Me & former camper turned CIT counselor Kristen K. Two KK's = twice the shenanigans!

Somedays…

having an ostomy really stinks. (Yes, literally and figuratively). Yesterday was one of those days. Due to my own bad judgement Sunday afternoon ( I ate pineapple on pizza at the in-laws after church), I had a partial obstruction for about 24 hours. The bloated feeling started around 8pm Sunday night, followed by the cramps, the nausea, and all the other loveliness that goes along with a bowel obstruction.  By 1:30am my pouch was leaking because my abdomen was so distended and hard. Nothing more fun than rolling out of bed at that hour, fumbling around to find the ostomy supplies, banging into the bathroom door (and waking the dog in the process), and trying to do a complete wafer & pouch change in the light provided by the plug in nightlight because if you turn on the light the dog will think it’s morning and you’ll never be able to go back to sleep.

I got up Monday morning and manged to put clothes on, make a lunch for Jaidin and get her ready and to school on time. Back home I came and went down to my office to try and work. I sat at my desk with the heating pad, hot tea, and prayed to the ostomy gods to PLEASE relieve my suffering. I answered  the phone with my right hand and massaged my tummy non-stop with my left , hoping with all hope that the blasted pineapple piece would just pop out of there already!!

But the ostomy gods were hell bent on trying to teach me a lesson. At about 10:30am, I discovered that my pouch was leaking – AGAIN, so I headed upstairs to change it. During this change I discovered the fire engine red skin around my stoma that I had missed  in the earlier change done by nightlight. Oh joy. I have some nerve damage in the peristomal skin since my last surgery, so I cant always feel when my skin is compromised. No bueno!

I finished my shift at work at 4pm and moved myself to the couch where I resided the rest of Monday evening. Finally at about 8pm I got a major “movement” and started feeling better. Crisis diverted and no Emergency Room trip.

Today I’m sore as all get out and feel wiped out.  All that from a couple little pineapple tidbits. I know – most of you are saying ” Why in the world did you eat the blasted pineapple, dummy?” (Mom- I see you reading). Well, I ate it because my diet is a bit like playing Russian roulette. 9 times out of 10 I can eat “problem foods” (pineapple, nuts, coconut, mushrooms, etc) with NO PROBLEM. But, occasionally – that 9th time out of 10, they give me an issue. After years and years of a restricted diet due to IBD, and having my ostomy for 19 years, sometimes I feel it’s worth the risk  in order to occasionally eat a food I enjoy. Maybe I’m hard headed. Or maybe some days having an ostomy really does stink…

Takin’ Steps Toward A Cure

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?

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…

Invisible Illness Awareness Week Brings Thousands Together Who “Get It”

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

Thought all my Crohnies may be interested in this link:

http://www.cleveland.com/health/plaindealer/index.ssf?/base/news/1216369870243350.xml&coll=2

Crohn’s and colitis give me my live TV debut

Yep, that’s right…I was on TV this morning. You can view the clip Here

It was a great interview, a wonderful way to get the word out about Take Steps  and raise awareness about Crohn’s and colitis.

However… hello?!? Is that really my face?? Please tell me those aren’t my chipmunk cheeks…

*sigh*  At least it was for a good cause ;^)

Tears and inspiration from a survivor and friend

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.

———————————————————————

“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