Tag Archives: ileostomy

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?

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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.

 

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…

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.

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…