Category Archives: Ostomy

For the Love of Nursing

My love affair with nurses began at the age of 9. I was diagnosed with Crohn’s disease and spent 87 days inpatient at the Cleveland Clinic while doctors and nurses stabilized me enough to be able to return home. It was a nurse who held my hand and comforted me when the first IV I’d ever received was stuck in my hand. It was a nurse who administered pain medication to my broken body and helped me cope with learning about “chronic illness”, a big word for a 9 year old. It was a nurse who administered my TPN around the clock to keep me alive, and it was a nurse who emptied the hat in the toilet 30 + times a day when I had bloody diarrhea. It was the nurses who comforted my mom in the hall while she quietly broke down, and the nurses who brought my father pillows, blankets and midnight snacks every weekend when he stayed with me overnight. 31 years later, I still remember their names – Tina, Sandra, Paula , Jenny and Kris.

When I had my colectomy at age 15, it was the nurses who not only delivered expert care to all of my drains, catheters, NG tubes, and IV’s and PICC lines, but also they who encouraged me to empty my own ileostomy pouch, walk in the hallways and take ownership over my health and journey with chronic illness.

I wasn’t so sure at first, but on a bright sunny day in June of 1991, a young blonde nurse entered my room, pulled up the blinds, sat on my bed (ignoring my “DO NOT BUMP THE BED SIGN” – I was a bit of a difficult patient), and introduced herself as the ostomy nurse. ET nurse to be exact (now called a WOCN – wound ostomy and continence nurse). I immediately hated her. But as she worked with me to change my pouch and teach me the fundamentals I’d need to go home, she told me a story about a young girl who was born with a birth defect that led to years of incontinence, months in bilateral leg casts, and a permanent urostomy. That girl was her. That moment began a lifetime relationship.  And it cemented my desire to become a nurse myself one day.

Fast forward 4 years and 4 more surgeries for a failed jpouch. While in highschool, I did a work study program and obtained my nurse assistant certification before graduating. I worked in nursing homes and extended care facilities all through my junior and senior year, even while battling my own health issues. It was not a glamorous introduction to nursing, but it taught me a lot about what it means to be a “caregiver”. I had a mentally disabled women with dementia bite me. I had feces flung at me by a gentleman with Alzheimer’s. I walked in on an elderly female patient sharing an amorous tryst with another resident who was not her husband. I wiped a lot of butts, combed tangles out of the scalps of many, fed mouths that barely remembered how to chew, and watched several patients pass from this world to the next. And I did it all with a full heart and a passion to make a difference, even if to just one.

After graduation, I went off to college and enrolled in a BSN program. I miraculously completed two years, all while battling a leaking jpouch, abdominal abscesses, and an infected coccyx that almost cost me the ability to walk. At the end of my 2nd year, my parent’s divorce became final, and my father informed me that he would no longer be paying for my health insurance. I had two options. Continue school with no coverage, or get a fulltime job that offered benefits to ensure I continued to receive the care I needed. For a 19 year old with chronic illness that needed $800 worth of ostomy supplies each month just to be able to function, there really was no choice involved. I quit school and found a job.

But I was blessed to find a good one. I received an offer from the Cleveland Clinic Children’s Hospital to work as a PCNA (Patient Care Nurse Associate), and quite ironically, it was on the nursing unit where I’d received all of my care during my Crohn’s battles and ostomy and jpouch surgeries. What an honor to work with the amazing nursing staff who had helped me through one of the toughest battles of my young life. Those ladies taught me the ins and outs of floor nursing – the non-compliant patient, the distraught family member, the lack of a pee break in a 12 hour shift, the 5 minute lunch in the backroom standing next to the Pyxis, and so much more. They each had a unique personality and approach to nursing, and I learned something priceless from each of them. Probably the most important life lesson came during my second week on the floor,  when a young GI patient (of course I had a heart for him!) went down to the OR for a routine colonoscopy under anesthesia. He didn’t come back. He coded on the table, and as I accompanied his nurse Jenny over to the OR suites to walk his mom back to the unit, we had a heart to heart and I asked her if the pain I was feeling over losing a patient would ever lessen. She looked me square in the eye and said “NO. And if it ever does, then you are no longer good at what you do, and it’s time to move on.” I’ve never forgotten that moment and have applied it many times over in other areas of loss in my life.  The nurses of M-30 from 1996-2000 showed me the best and worst of what nursing could be, and that even at it’s worst, it was still a noble and anointed profession. Jenny, Kim, Molly, Mary Beth, Marianne, Caroline,Leslie, Jen, Kristen, Shannon, Lisa, Cheri, Dawn, Kelly, Kara, and Sue – I salute you!

Over the years, it has consistently been nurses who have made a profound difference in every aspect of my life with chronic illness. I have some amazing physicians involved in my care ; I’m incredibly blessed. But it has been the nurses who have sustained me over the years.

Marlene, my surgeon’s right hand woman, who makes things happen when I’m sitting in the ER for hours on end, who responds to my emails not days later but minutes later, who gets me the prescriptions I need within hours, and who checks on me via Facebook when she’s off the clock, just because…

Mary, my dermatology nurse who squeezes me in on her lunch hour for a  same day Kenalog injection when I’m in agony because the abscesses and pyoderma have decided to flare, who held my hand as I cried after a particularly brutal examination, and who recognizes so delicately the dignity that I have all but lost as a result of this condition.

Paula, Coleen, Chizu, Nora, Joy, Roxanne, Aimee, April and all the other amazing WOCN’s who have graced my life with their presence – I am forever indebted to your knowledge, kindness, and inspiration. Thank you for walking me through ostomy management, open incisions, wet to dry packing, the healing of multiple wounds and so much more. You are THE LIFELINE for ostomy patients.

And to the nurses who volunteer their time at Youth Rally, who know that the best medicine comes not in the form of a pill or injection, but from storytelling, shared experience, laughter, and fostering independence.

As life often dictates, my plan to become a nurse didn’t quite come to fruition. But I never gave up my passion. I’ve held some amazing roles professionally ; I’ve been a development and support manager at the Crohn’s and Colitis Foundation, I was president at the United Ostomy Associations of America, and I worked for one of the largest ostomy supply manufacturers in the world. All of these positions included patient care and education in some way, shape or form, and it helped satisfy that passion I had for caregiving and healing . But I never have gotten over my regret of never becoming a nurse. There has always been a still small voice in the back of my heart whispering “You are a nurse. Finish your dream”. But something has always gotten in the way. Health, family struggles, finances.

But as I sit here, recovering from my 19th surgery, and approaching my 40th birthday, I am stirred so greatly inside by the NEED to fulfill my call. Someone, somewhere, needs a nurse with exactly my skill set and life experience. And I am doing myself and them a huge disservice if I do not answer that still small voice with a resounding YES. As it happens, a series of somewhat unfortunate events (death of a parent, loss of a job, health setback) have led me to a place where, for once, the timing is right and the pieces just fit.  Last month, I enrolled in nursing school and will start fulltime in January,  with really nothing but hope and a prayer that this time around, the dream will be realized. I have no idea how it all will work out with my finances, health challenges, and family obligations, but I feel like the risk of not following my dream is greater than the risk any of these things presents.

But one thing I know for sure was taught to me by all of the nursing angels I’ve encountered over the years; you can teach anatomy and physiology, you can teach assessment skills, phlebotomy, CPR, pharmacology, and so much more; but you cannot teach passion, instinct and intuition.  I know, deep down in my soul, I’ve always been a nurse. It’s just finally time to get the credentials to prove it.

 

36 Hours Out. Not for the Faint of Heart.

I’m 36 hours out of surgery #19, and things are not going as I expected. (Do they ever?). I’ve got A LOT more pain than I anticipated. I had a procedure like this once previously, and I don’t recall the discomfort being anywhere near this bad – however, I also had a major abdominal wall rebuild and stoma relocation at the same time, so I spent a month in the hospital on a PCA pump, with a nurse changing all the dressings in the perianal area, so perhaps my memory is a bit skewed 😉

At any rate – YOWSERS! Any time I move, the gauze packed in and covering the wounds rubs and it FEELS LIKE SANDPAPER IS BEING RAKED OVER THE RAW TISSUE. Sorry for that visual – I’m just keepin’ it real. And then there’s peeing. It feels like acid is being poured over my lady bits. I’ve been given a lovely peri bottle to use to “ease the discomfort”. HA! Suffice to say, I have a gained a whole new perspective on the pain that must be experienced by burn victims, and cannot imagine this type of agony over an entire limb, or whole body.

Now, don’t fret – I have good ol’ Percocet to help me with the pain. However, it seems in my old age, that one Percocet does ABSOLUTELY NOTHING, but two Percocets KNOCK ME ON MY ASS. So what’s a girl to do? Walk around with sandpaper on her privates, or lay (sitting is not yet an option) comatose on the couch watching Netflix? I have vacillated between the two today. I think I am higher than a kite right now because I just wrote an entire blog about sandpaper and acid on my perianal area. Don’t do drugs kids – they lead to oversharing.

Sorry to those I’ve just scarred. Crohn’s disease is relentless, and it’s extraintestinal manifestations aren’t for the faint of heart. Deal with it.

I have to.

 

Surgery #19

You read that right. Bright and early Tuesday morning, I will undergo my 19th surgery at the Cleveland Clinic. 

Most of you know that I haven’t really been “healthy” for about the last 2 1/2 years, but I haven’t elaborated publicly about what’s going on specifically. The long and short of it is that my immune system is attacking my skin, both around my stoma and in the perianal area. Not a fun thing to talk about or endure, but nothing about Crohn’s disease or chronic illness is glamorous or sexy. This “attack” comes in the form of painful, deep abscesses that eat away at my skin, leaving painful open wounds and fistulas. I have been on Humira for 7 months to try and combat the aggressive nature of this immune war, and it has helped. The abscesses have lessened in frequency and severity. But they’re still occuring, and I’ve been left with some areas that just won’t heal. So on Tuesday, my colorectal  surgeon is going to excise those areas, believing that removing that diseased tissue will make way for healthy tissue to granulate together and close over.

I wish I could say that, after 18 surgeries, this’ll be an easy one. But the truth is, none of them are easy, and NO, you don’t get used to having surgery, even if you’ve averaged one every other year of your 40 years of life. If anything, the older I get, the harder it gets. Physically, I just don’t recover like I used to. Anesthesia is a real bitch. It wipes me out – not just for hours, but weeks. The “fog” is hard to shake. And my almost 40 year old body doesn’t heal at the rate at which it once did. It’s been through the ringer, and it tells me “Listen- we have done this 18 times. We’re gettin’ real tired of bouncing back. I know you have this, this, and this planned, but um, too bad. You’re going to have to chill while we get our act together.” So, I’ll chill. I won’t like it. But I’ll chill, and hope my body will get it’s crap together quickly, because those of us who’ve done this before know that the hardest part of recovery is the mental battle.

Healing ravaged tissue will be the easy part (hopefully). Antibiotics, packing/dressing, and lots of protein. I know the drill. Well. But the mental aspect of healing and recovery is daunting. Even after all of these years. A positive attitude is hard to hold on to when life repeatedly knocks you down. I once described the phenomenon as “losing my mojo”. I’m a decently optimistic person, I’m more self-aware than most, and I’m generally confident in my abilities, but every time I have a health setback, all of that goes out the window. For whatever reason, I no longer feel capable. I second guess. I need reassurance. I feel needy. I forget I’m a gutless Wonder Woman and instead, feel more like a gutless wonder. 

Recovery from my last surgery took 4 months. It was a good 5 months after that before like myself again. I CANNOT deal with that again. I. JUST. CAN’T. There are too many exciting things on my horizon, and I won’t be ready to tackle them head on if I’m not 100%.  Would you pray with me, and for me, for a successful surgery, quick and easy recovery, and the support and encouragement I need to battle the days ahead? Thanks friends.

 

gosling

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.

My (not so) Perfect Body

I’ve seen a lot of articles and stories about body positivity lately, and it’s had me thinking about my journey to self-love, and learning to be appreciative of my body, instead of constantly cursing myself for what it doesn’t do and has never looked like.

Swimsuit season is upon us, and for many who are overweight, underweight, normal weight, and live with any type of disease or illness that can affect appearance, this can be a high anxiety time. I know I’ve sat on the beach or at the pool, dreading having to get up and walk to the water, anticipating glances from judgemental bystanders because my body doesn’t look like what they’d prefer to see.

This year though, I’m resolving to walk talk, be proud, and love myself, because…

They don’t see the 9 year old girl diagnosed with Crohn’ s disease, who spent 3 months in the hospital, and had nary an ice cube pass through her lips for 86 straight days.

They  don’t see a 10 year old body bloated from prednisone, or hear her “friends” calling her Cabbage Patch Kid.

They don’t see the 15 year old whose colon is ripped from her body, and the stomach that is fashioned with an ostomy pouch to save her life.

They don’t see that teenager standing in front of the mirror, disgusted by what she sees, asking questions no teen should have to ask – “Will I live through highschool?” “Will I get to go to college?” “Will a boy ever think I’m pretty, let alone date me?” “Will I ever be able to have sex?” “Can I have a baby, be a mom, hold a career?”

They don’t see the 5’9, 98 lb body that graduated highschool ravaged by pouchitis, Crohn’s disease and anorexia. How every single rib was visible in that chest, and how the knees were wider than the thighs – They don’t see that, do they?

They don’t see that young woman at college, so desperate to fit in and be normal. They don’t see her self-destructing with alcohol, or crying herself to sleep at night after a person she trusted violated her body in the worst kind of way.

They don’t watch as this 19 year old is wheeled off to an emergency surgery that makes an ostomy a permanent fixture in her life. They don’t see the emotional breakdown, or the physical fight to regain “normal”.

They don’t you see the countless stoma revisions, hernia repairs, packing of wounds, infections and bowel obstructions this body has endured.

But they also don’t see as this 24 year old woman walks down the aisle on her wedding day, tall and proud and feeling beautiful.

And they don’t see this body as it grows and nurtures another human life for 9 months, even after doctors said that would never be possible. They don’t know the trauma that pregnancy put this body through, and the multiple surgeries it’s taken since then to try and repair the irreversible effects.

They don’t see that this body nourished that baby for 6 months from its breast, and they don’t see the 12 years that this body has been fighting to stay well enough to continue to care for this child.

They don’t see the multiple blood clots in both lungs that almost killed this body at age 37. They don’t see the results of a pulmonary infarction that means that this body now functions with only 80% function in its left lung.

They don’t see the most recent (and hopefully last) surgery this body has conquered – how doctors used mesh to rebuild an abdominal wall that had been disintegrated by the 16 previous surgeries. They don’t see the massive infection that destroys this body for a month after that surgery, or the weeks upon weeks of IV antibiotics and recovery, only to result in another surgery and open wound.

They don’t see the Crohns disease that, having destroyed the intestines, is now plaguing the skin on this body. They don’t feel the pain , see the embarrassment, or understand the grief.

You, passers of judgement, have never seen this body hold the hand of someone who is hurting, hug a friend, or walk alongside someone who is struggling to find their own way to self-love.

You don’t see this body, that is 5 months from turning 40, and understand that it’s seen and experienced more that most bodies twice its age.

This body isn’t perfect. Its arms are a bit flabby. It carries extra pounds and is soft and snuggly. The thighs touch, and yes, they jiggle.  It has a booty, and it has a belly, because artificial abs just don’t “hold it all in” like they should. It’s covered in imperfections – cellulite, stretch marks and lots of scars.

So, no, in your eyes, this body is far from perfect. But I LOVE this body, and I’ll not let a sideways glance from you cause me to curse it with ONE. SINGLE. NEGATIVE. THOUGHT.

This body has fought, struggled, warred, and is still standing.

It’s not perfect.

Nope.

IT’S MIRACULOUS.

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!