Category Archives: ulcerative colitis

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.

 

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.

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 ;^)