Tag Archives: Crohn’s and Colitis

When a Curse Becomes a Blessing

A couple weeks ago, I was asked if I would consider being the editor for the newsletter published by our women’s ministry at church. It was a no-brainer to say yes. I enjoy writing, I’m a stickler about grammar and spelling, and I’m pretty computer proficient. Sounds like a good fit right?

Then, once I’d committed, Kristen – the director of the women’s ministry said, “One of the things I’d like to implement is an article in each newsletter that highlights one of the ladies in our church. We all see each other, week in and week out, but never really get to know things about each other that are below the surface. Since you’re putting together the newsletter, why don’t you be the first woman we feature? “.  How could I say no? So I agreed. Simple enough.

Except that I hate writing that kind of thing. Or maybe it’s not that I hate it, but really that I don’t want to sound boastful when writing about my successes and accomplishments. I don’t think I’m one to toot my own horn, and I struggle to share about all I’ve been through in my short 35 years because the glory is all God’s. When I share with anyone about where my life has come from, how it’s been changed, and why I hold the hope that I do, I never want people to think that it’s at all because I think I’m such a strong, talented person. Truth is my past (and even some moments in the present) is littered with hardships that without the love and grace of Jesus Christ, I never would have overcome.

I’ve been incredibly blessed that He’s taken what at the time seemed to be a curse, and turned it around into the greatest blessing imaginable. From my sickness and suffering, I’ve been able to find my ultimate purpose.

 

Anyway – many people have asked if I ever finished the article. I did – and here it is in it’s entirety. Maybe I’ll write my memoir one day afterall…

 

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?

Unfortunately for Kristin Knipp, this was a reality. Diagnosed with Crohn’s disease at age 9, Kristin spent much of her childhood in the hospital. When she was 15, she had her diseased large intestine removed, leaving her with a condition called an ostomy. The ostomy is a surgically created opening in the abdomen through which doctors bring a portion of the bowel and the person then wears  a prosthetic ( called a pouch) that waste is collected in.

“My teenage years were trying, for sure. There’s a certain stigma attached to going to the bathroom ‘differently’, and when you’re a young person, that stigma seems magnified. It’s very isolating”, says Kristin. “For many years I asked ‘why me?’. I didn’t know Jesus back then, so no real answer ever came. In fact, the lack of answers, coupled with recurrent surgeries and medical trials, led to one very bitter young lady. I was mad- mad at my body, mad at my circumstances, and mad at God for allowing it. It wasn’t until I was 17 that things slowly began to fall into place.”

At 17, Kristin attended a summer camp for teens that had ostomies and other bowel and bladder diversions. For the first time, she met other kids that had experienced illness, surgery, and the same struggles she’d been facing. Finally, she didn’t feel alone. This camp, called Youth Rally, was ultimately the vehicle through which Kristin was introduced to Jesus.

“My second year as a camper, I met a young man who was also a Crohn’s patient and an ostomate. We were drawn to each other – initially because of teenage hormones and young love, but after camp ended and we returned to our respective homes, we maintained our friendship and I began to realize that we had a special relationship. Every time we talked, he offered me hope regarding whatever circumstances I was facing, and assured me after every conversation we had that he was praying for me. It wasn’t long before I realized that the thing that drew me to him most was his relationship with the Lord. In 1997, I visited him and his family in Tennesse, and it was there that I attended my first ever church service, and gave my heart to Jesus.”

It didn’t take long after welcoming Jesus into her life for Kristin to recognize how God had placed His hand on her  long before that moment, and had been weaving a tapestry that on the under side appeared messy and disheveled. But now that she could see it clearly, through spiritual eyes from God’s perspective, she began to see the answer to her “why me?” questions.

Kristin has returned to Youth Rally for the past 12 years to volunteer as a counselor and offer hope to teens facing life with an ostomy.  Volunteering with Youth Rally brought to Kristin’s attention the lack of support and resources for young people living with ostomy surgery, especially young adults, and in 2005 she founded YODAA (Young Ostomate & Diversion Alliance of America) a national network for young adults living with ostomy or diversionary surgery. Eventually the organization joined the United Ostomy Associations of America(UOAA) as an affiliated support group, and YODAA is still growing strong today.

In 2006, serving while serving UOAA as National Conference Planning Chair, Kristin was approached by the organization’s president about running for a national board of directors position. Kristin knew that it was something she was called to do.

“My life had come full circle”, she says. “At 15, receiving an ostomy had felt like a life sentence. Now, I was in a position to share my experience with an ostomy with others and let them know that it is indeed a LIFE sentence. Life is the key word. An ostomy gave me back my life, and this was my opportunity to use my experiences to change the course for others facing the same road. This was a significant answer to my WHY from so many years ago.”

 

Kristin threw her hat in the ring for the election, and was installed as the President-elect of UOAA in 2007. She served in that capacity for 3 years, and in January 2010, began her term as President of the organization.

“ While serving UOAA as president, I had the opportunity to travel the United States and abroad and use my God-given talents to work to improve the lives of ostomates around the world.  I’ve lobbied on Capitol Hill for legislation important to those living with an ostomy, I’ve been to Mexico and seen the plight of ostomates in foreign countries who have little or no access to specialized care and ostomy supplies. I’ve been honored to serve on a selection committee that extends scholarships and awards to people who’ve made a ‘great comeback’ from ostomy surgery, and have been blessed to be a spokesperson for several campaigns aimed at eliminating the stigma that is attached to ostomy surgery. God has granted me the influence to affect change and the responsibility to help others along their journey”.

Kristin now works for a company that makes specialized undergarments for people that have had ostomy surgery, and feels incredibly lucky to be able to combine her vocation with her avocation.

“Every day, I have the opportunity to minister to someone who’s in need of a little hope. It’s not traditional ministry – I don’t work at a church and I don’t have a title, but I have the love and grace of Jesus Christ in my heart, and I’m able to share it every day in the form of knowledge and encouragement to help others along their journey. My WHY has been answered, and no longer is Crohn’s disease or an ostomy a curse. It’s been my biggest blessing.”

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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