Category Archives: colostomy

Death of a Health Activist: When Your ‘Do Good’ Gets Burnt Out

Death of Health Activist

 

In 2004, I was invited to speak at my first ostomy conference. The topic I was to speak about was pregnancy with an ostomy, and I was ridiculously excited to share my story and experiences. My daughter was 18 months at the time, and after being told I’d never have a baby or carry full term because of Crohn’s disease and all the surgeries I’d had, in my mind, the opportunity to share publicly about my miraculous pregnancy was an “in your face!” to the Universe. That week in Louisville, KY speaking and interacting with ostomates from around the country ignited a flame in me, and was a “light bulb” moment for me. THIS. This is what I was supposed to do- use my story and experiences to affect change, to create a better future for those who live with IBD and ostomies.

So that’s what I did. I’d already been involved with a camp for kids with ostomies, diversions and other bowel and bladder dysfunctions, so a natural progression was to get involved with young adults with the same challenges. So I founded YODAA (Young Ostomate and Diversion Alliance of America), and teamed with the national ostomy association to provide programming for young adults at their national conference. From there things snowballed – 2 stand-alone national conferences for young adults, conference planning chair for the national ostomy association, then being elected president elect and president of that organization. That led to strategic planning meetings, more national conferences, nursing symposiums, speaking opportunities, leadership training weekends, international travel, publishing articles, and a public awareness campaign-  all of this while I worked a full time job for the Crohn’s and Colitis Foundation of America! From there I was offered a job in industry – an opportunity to work for a company that was making a new and high demand product for the ostomy community. Of course I took it! That led to more teaching engagements, speaking opportunities, WOCN conferences and travel. PHEW! I’m dizzy typing all of that!

I made my mark on the ostomy and IBD communities – all within a 7 year time period! And I loved EVERY MINUTE OF IT. Nothing made me happier than to meet someone new whose life had been impacted by the need for an ostomy, or by IBD.  Connecting them to resources and mutual support, and fanning the flames of hope in their hearts was deeply gratifying, and deeply personal. My passion and conviction were put to the test, but I never wavered. I was at the top of my game, and it felt imperative that I never disengaged, disconnected or stopped paying attention to the newest challenges facing the ostomy and IBD communities.

But it was very taxing on my body, mind and spirit. That kind of constant connection is exhausting. I ate, drank, slept and was married to Ostomy and IBD. In 2013, I began to notice I had an aversion to going to work. Where I once LOVED talking to patients on the phone, I now cringed every time I heard that familiar ring. Anxiety set in when I tried to talk to my employer about it, because how could I explain that I, Mrs. Ostomy, needed a break? I tried to talk, encourage and shame myself out of my funk, but nothing was working.  Eventually depression, a demon I had battled a time or two before, began to rear its ugly head. I started feeling like everything was hopeless – nothing I did mattered. The years I had volunteered my time and talents felt like they were wasted. I couldn’t see where I’d made an impact. My big picture had been shattered.

And then I got sick. Really sick. As in almost died. Multiple bi-lateral pulmonary embolisms (blood clots in my lungs for the less medically savvy). It took 6 months to recover, only to find out that I needed major abdominal surgery (again – this was # 17), to the tune of multiple hernia repairs, a stoma revision, and a total abdominal wall rebuild with mesh. Considering my work performance had deteriorated, I could hardly blame my job when they cancelled my contract. Fast forward through a difficult operation, month long hospitalization, 3 months of IV antibiotics at home, and another blood clot,  I started 2014  with the career and advocacy work I LIVED for heaped at  my feet as barely warm ashes. After recovering from surgery (finally), my immune system decided that my over decade long remission was due for an end, and since June of last year I have been dealing with a cutaneous form of Crohn’s disease that manifests itself as pyoderma gangrenosum around my stoma, and in deep, fistualizing ulcers in the skin of my perianal area.

I’ve learned some things through all of this, and I’d like to share them with you, in hopes that once again, my story and experiences can provide some guidance or hope for someone who needs it.

 

  1. YOU ARE NO GOOD TO YOUR CAUSE IF YOU ARE NOT GOOD TO YOURSELF. Self care is imperative. You have a right to be well, even when advocating on behalf of those who are sick. It’s ok to leave your own needs in the equation. When you feel fatigue setting in, pamper yourself. Reward yourself for doing good. I like hot bubble baths, lavender scents, martinis and music or a book. You may like a punk rock concert or a garden full of flowers or veggies. The point is to take some time JUST FOR YOU, and connect with yourself. Turn off the phone, silence the email and texts, and forget about the next project. Take this time to be thankful and grateful – remembering why it is you decided to become an activist in the first place.
  2. GET SOME THERAPY. It is grueling work to deal with a constant barrage of negative forces and news. People you are trying to help will be mean to you. The piece of legislation you worked long hours on may not pass. The advice you gave the new patient may not be taken. Patients will die, colleagues will experience hardship, and it can be devastating. It’s OK to ask for help for yourself. We spend so much time “being the help” for someone else that we forget there are resources out there to help us cope with the emotional fatigue that comes with bearing someone else’s burdens.
  3. EMBRACE DIVERSITY. Find something else you’re passionate about, and concentrate on that for a while. Probably best if that thing is not health related. I have a love for animals, and we rescued a pit bull a few months back. My passion for that issue is different than my resolve to fight Crohns disease and ostomy stigma, but it gives me an outlet for my ‘do-gooding’ and the rewards are similar.
  4. KNOW YOUR LIMITS. Finding balance is difficult for “normal” people. For those of us with our own health problems, who are trying to balance career, family, friends, and advocacy, it’s even harder. Set some hard limits for yourself, write them down, and vow to keep them. Say “When my commitment to health activism starts to impact X, Y, or Z, then I need to re-evaluate my priorities.” For example – I missed my daughter’s 6th birthday because I was in Mexico, representing the USA at an international ostomy conference. And for 3 years, I used ALL of my work vacation time for ostomy or IBD events – camp, conferences, speaking events. I justified it by telling myself that the community “needed” me. But the truth is my family needed me just as much, and I needed a true vacation!

 

It’s been a few years since I’ve done any ostomy or IBD related advocacy or projects, and I’ve had a really good time off, connecting with my spirit, evaluating my mistakes, and recharging for the next chapter. I was down, but I’m not out. Like the Phoenix, I feel like it’s time to rise from the ashes and see what this new life has for me. Time to get back in the game.

In response to negative press about ostomies…

Here I go playing devil’s advocate again…
Much Facebook drama has been stirred up over the Cincinnati police using pictures of colostomies as a “scare tactic” to try and set teens and young adults on the straight and narrow. I posted my reply in an earlier status and you can go back & read it if you like.
As a result of the “outrage” several organizations have launched positive awareness “campaigns” encouraging people to write to the Cincinatti police with their positive portrayal of an ostomy, and encouraging ostomates to post pictures of themselves, many with their pouches hanging out, to prove that they are still attractive and sexy.

Let me be the first to say that I am ALL FOR THIS! I’ve spent the greater part of my life since the age of 17 involved in organizations that support ostomates, and work to promote positive portrayal of ostomy surgery.

But what strikes me about all of this is WHY does it take something negative like this to prompt people to be “loud and proud” about their ostomy? Shouldn’t we all be positive, loud & proud every day? I’d venture to say that our every day actions and positivity, shown to our friends, family, and strangers alike would go a long way in negating the stigma that many associate with ostomy surgery. If we were just matter-of-fact about our medical challenge, sharing it openly and honestly in a positive light to those around us, perhaps the public at large wouldn’t have such a skewed perception of our reality. Unfortunately, far too many hide their ostomy, hide the reality of it’s life saving ability, and only bring it out when it’s in response to something negative like the recent events in Cincinnati. Why? Why not be proud EVERY day?

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!

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.”

Whether misinformed or underinformed, I’m still angry…

I had (and still have) the  most amazingly wonderful WOCN in the world (don’t argue with me – I know most of us ostomates feel that way about our “special” nurse – but Paula IS the bomb!) Let me tell you why.

Back in 1991, some 20 years ago, when I had my first of 14 surgeries, Paula was THE NURSE that changed my life. Literally EVERYTHING I knew about ostomies was due to Paula educating me. There was no internet for me to Google ostomy and get freaked out by all the images that appeared, no online dicussion board to post my questions to, and no Facebook to “connect” with other ostomates. No one told me about the UOAA. My parents had never even HEARD of an ostomy, and certainly we’d never met someone who had one. So what I knew, I learned from Paula.

She helped me find the right type of pouching system. She showed me how to clean my skin, prepare the pouch, and complete all the steps to attach the pouch correctly to my abdomen. She told me what to look for as far as excoriated skin and a fungal infection. She showed me how to empty the pouch, how to fold it up and tuck it in my underwear to keep it secure. She told me it was perfectly fine to get the pouch wet – in a shower, bath, swimming pool, hot tub, ocean or lake. She told me I could wear anything I wanted, eventually have a normal diet, and live a perfectly normal life.

I never knew the extent to which I was blessed to have her until I started volunteering in the ostomy community. Not everyone even gets a WOCN, let alone a spectacular one like Paula. Not everyone comes home from the hospital and finds their first box of ostomy supplies waiting for them on their front porch. Not everyone gets told that getting the pouch wet is ok,  and that wearing it sideways is probably going to breakdown the wafer and cause skin irritation. Not everyone knows they can wear regular clothing, go out to eat and lo and behold, still have sex.

Whether others were misinformed or underinformed, I don’t know. All I know is that through all the work I did with UOAA, and with my job at Ostomy Secrets now, EVERYDAY I hear from someone who doesn’t have the basic information needed to live with an ostomy. Even with the wealth of information and support available online, even with 300+ support groups nation-wide, even with 3 major ostomy supply manufacturers that  all offer patient education materials,  and even with hundreds of professionally-trained, certified Wound Ostomy & Continence nurses working in our hospitals and clinics, people are STILL not getting basic information that is critical to a good quality of life with an ostomy.

And it makes me angry.

 

United Ostomy Associations of America PSA

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.

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