Kara O’Neil’s Story

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Discovering Strength in the Struggle from J-Pouch to a Permanent Ostomy

If you asked me 20 years ago when I was in college if I thought I could be a strong ostomate, I would have just stared at you in shock. Strength and I were not the best of friends. In fact, it was one of the things I often questioned about myself. I had no idea what was something worth crying about.

That all changed three years ago when I was put to the test when I went from sudden rectal bleeding as a result of ulcerative colitis, to having to remove my colon in a matter of four months. During the next three years, I had four more operations from trying the j-pouch and failing, to finally getting a permanent ostomy just this past December.

Somewhere along the way, I found my strength.  I dealt with major emotional and physical changes faster than I could even process.  I had to adapt to a whole new way of life and a whole new way of looking at myself.

Somewhere along the way, I found my strength.

These three years have been incredibly hard. They have tested me in every way, broken me down to smithereens of myself, and caused me to question everything. The true strength that just suddenly overcomes you when you least expect it is something you don’t really understand until you are there and have no other choice. Life after that is forever changed.

Along the way, I started to feel strong. I was amazed by what both my body and my mind could accept and turn into a positive. I started to really take care of my physical health, and in the three years that I have been the sickest in my life, I became the most physically strong I have ever been by participating religiously in barre class. This physical strength, along with the help of the ostomy community, is what helped me to then discover my mental strength.

I literally stared death in the eye and won.  It is hard to even write that today.

Feeling very alone, I stumbled across some ostomy bloggers one night while scouring the internet.  Reading their patient stories blew my mind at the time, because I didn’t comprehend how they could just accept living with an ostomy.  But all that changed and I began to understand when I was so sick that it was no longer a choice if I wanted to keep being a mommy.  The decision to have a permanent ileostomy was the best choice I ever made.

This physical strength, along with the help of the ostomy community, is what helped me to then discover my mental strength.

I just had what I hope to be my final surgery and got my permanent ostomy on December 1, 2020. Since then, I have made some promises to myself. I want to be my absolute best version of myself now that I am able to really live again.  I want to help as many people with IBD and facing the possibility of an ostomy as I can.  I want them to see what I have come to see, that they too can use such an incredibly difficult period in their life to find their strength and their best version of themselves.

“God said to me, I am going to show you pain.  And then you are going to help other people who are in pain because you understand it” (Lady Gaga).

 

Charlotte’s Ostomy Story

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Outdoor Adventure Does Not Stop with an Ostomy and IBD.

Hi my name’s Charlotte!

I grew up in New Hampshire as the youngest of three sisters. I had a pretty normal childhood and was raised by a wonderfully supportive family who fostered in me a sense of independence and love of adventure. In 2007, at the age of 17, I was diagnosed with ulcerative colitis. That diagnosis later changed to Crohn’s disease, and it changed my life forever.

My IBD progressed rather quickly and about nine months after my original diagnosis, I had my colon removed, a temporary ostomy, and a j-pouch created. I lived with my j-pouch for five years, and those were some of the toughest years of my life. Despite a failing jpouch, pooping my pants every day, and a variety of other debilitating symptoms, I was determined to continue living my life. I was able to graduate from high school, bike across the country while in college, and complete my academic coursework as an Occupational Therapy student on time (despite dropping out of college in my Sophomore year because of my Crohn’s disease). I was not going to let Crohn’s get in my way.

In 2013 after agonizing over the thought of ostomy surgery (I had been adamant for years that I would not have an ostomy), I finally told my surgeon I was ready, and underwent surgery for a permanent ileostomy. I felt prepared for ostomy surgery this time around because I went to local support groups in Boston to learn more about living life with an ostomy. I also found a surgeon who understood me and what I wanted out of life. My ostomy changed my life again, and this time for the better. I’ve had 3 stoma revisions and my Crohn’s does pop up every now and then, but I have so much more freedom in my life with my ostomy.

In 2014, after graduating with my Master’s in Occupational Therapy, I was able to move to Alaska to take my life back and pursue a life of outdoor adventure (and work). I started sharing more about my ostomy with my community which increased my confidence. I worked to establish a collaborative medical team, including my surgeon, GI doc, and physical therapist/pelvic floor therapist who have helped me take control over my life and continue an active lifestyle. I’m a passionate OT working in Anchorage. I enjoy running, biking, skiing, climbing, hiking, backpacking, camping, and spending any time outdoors. My family, boyfriend, and friends are my greatest sources of support, and they inspire me to live my life fully.

In addition to my passion for the outdoors and exercise, I enjoy empowering others to learn more about themselves and how to thrive with an ostomy. When I first had my ostomy, there weren’t many resources out there, but I stumbled upon the Ostomy Outdoors blog which provided helpful resources for my outdoor journey with my ostomy. That’s in part why I created my blog, backcountryostomy.com, to support other ostomates returning to active lifestyles after ostomy surgery.  And I recently started my business, Restorative Ostomy Solutions to empower Occupational and Physical Therapists to feel more confident working with ostomy patients.

Through rehabing myself from six major abdominal surgeries, I have learned what it takes to pick myself up after each setback and continue on my life journey. Because life if so much more than my diagnosis and my ostomy!

How Coaching & Technology Reduced Hospital Readmissions Rates

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A research study about the benefits of perioperative self-management support for ostomates

 

Ostomates are not only dealing with intestinal concerns but are also at risk for a multitude of complications. Data shows that 38% of ostomy patients find themselves back in the emergency room or being admitted within the first 90 days post operatively [1]. This is one of the highest rates of readmission when compared to other types of surgery. The most common cause for re-admission is dehydration, at approximately 40% of post ileostomy readmissions [2]. We also know that 84% of ostomy patients develop skin issues. The causes of these can be chemical, mechanical, or microbial, and possibly avoidable. Ostomates also have significantly increased healthcare costs, especially when affected by peristomal skin complications, and leakage [2]. It is known that 25% of ostomates develop renal failure within two years. The complications these patients encounter require 7x more outpatient visits than the average patient. And 29.1% of ostomates experience readmission which costs approximately $16,000 per patient [1]. These statistics show that specialized care for these patients is imperative to improving patient outcomes in this patient population.

A recent study published by the American Society of Colon and Rectal Surgeons shows how one company, 11 Health and Technologies, is utilizing a novel care approach to improve the quality of life and outcomes in this type of patient. The company developed alfred: SmartCare, a unique care model designed to meet the specialized need of ostomates. The program consists of a SmartBag and SmartWafer, mobile application, patient coaches (who were/are also ostomates, trained to support this type of patient) and the nursing team. The patient wears the SmartBag and SmartWafer, which submits data to the mobile application and clinical dashboard. The data is visible to the patient, their coach, the nursing team and the patient’s clinicians to be used to identify trends and abnormalities in the values. The patient can see how much output they have expressed and what the temperature is of their peristomal skin. These data points can help to curtail oncoming hydration issues or infections. When abnormalities are identified, the coach can work with the patient to provide education and can escalate issues to the nursing team for medical guidance.

In the study, the outcomes of 66 new ostomates from 19 different states were monitored for the first 30 post-operative days. The study showed that close monitoring of ostomy output volume as well as perioperative self-management support can significantly reduce the rate of hospital readmissions in the first 30 days after ostomy surgery.

Patients and healthcare providers should be open to the use of innovative programs that use remote monitoring along with telehealth, as they can be beneficial in improving the outcomes of patients in the immediate post-operative period.

To read the full study, visit the Diseases of the Colon & Rectum online at: https://journals.lww.com/dcrjournal/Citation/2020/12000/Improved_30_Day_Surgical_Outcomes_in_Ostomates.17.aspx

Editor’s note: This article is from one of our digital sponsors, 11 Health and Technologies. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

[1] Tyler, J. A., Fox, J.P., Dharmarajan, S., Silviera, M. L., Hunt, S. R., Wise, P. E., Mutch, M. G. (2014). Acute health care resource utilization for ileostomy patients is higher than expected. Diseases of the Colon & Rectum, 57(12), 1412-1420.

[2] Justiniano, C. F., Temple, L. K., Swanger, A. A., Xu, Z., Speranza, J. R., Cellini, C., Salloum, R. M., & Fleming, F. J. (2018). Readmissions With Dehydration After Ileostomy Creation: Rethinking Risk Factors. Diseases of the colon and rectum, 61(11), 1297–1305. https://doi.org/10.1097/DCR.0000000000001137

[3] Taneja, C., Netsch, D., Rolstad, B. S., Inglese, G., Eaves, D., Oster, G (2019). Risk and economic burden of peristomal skin complaints following ostomy surgery. Journal of Wound, Ostomy and Continence Nursing, 46(2), 143-149.

[4] Fearn, Robert I. M.D., M.R.C.P.1,2; Gorgun, Emre M.D.3; Sapci, Ipek M.D.3; Mehta, Saahil N. M.D.2; Dinh, Binh B.S.2; Yowell, Quinn V. M.S.2; Eisenstein, Samuel M.D.4 (2020). Improved 30-Day Surgical Outcomes in Ostomates Using a Remote Monitoring and Care Management Program: An Observational Study. Diseases of the Colon & Rectum: December 2020 – Volume 63 – Issue 12 – p e581-e586.

Dave Wolffe’s Story

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Excerpt from the story One Man’s Journey From Bladder Cancer

The day for my fourth cystoscopy had finally arrived. My doctor smiled and asked if I was ready for this exam. With a nod from me, turned off the lights, and guided the instrument into my body. He reiterated that there were cells in my bladder. I felt a large lump in my throat, and my face began to flush. Because these cells had been so aggressive and returned after the three previous treatments, there were no additional medications that could be used. He explained there were several other choices: (1) do nothing, (2) having a neo-bladder constructed, and (3) urostomy surgery. We would discuss these options in a few weeks.

Note: Each person is unique, and so are the methods used to treat this cancer.

An appointment was made for this consultation, and within two weeks I would see my doctor. In the interim, I had given careful thought to all three options. Doing nothing could be taking a huge risk. If the cells should travel into the muscles of the bladder, my life would definitely be in jeopardy. There was a chance these cells might metastasize to other organs of my body. We could wait and see if they did travel. However, this was not a chance I wanted to take. A neo-bladder, created from my intestines, would allow me to still urinate through my penis, but required much effort to adjust to, and a longer recovery time. It also brought with it the possibility of incontinence, or not working properly, necessitating additional surgery. The neo-bladder is also a relatively new form of treatment that many urologists choose not to use.

My final option was to have my bladder and prostate gland removed surgically. Compared to the construction of a neo-bladder, the recovery time was shorter. It had been proven to be successful in eliminating cancer and allowing patients to resume normal lives. This return to normalcy would occur after an initial adjustment period when the patient learns how to use and care for the Ostomy Pouch. Over time this would become routine.

After more consultation… My faith and confidence in my physician and in my decision to receive “external plumbing” (the ostomy pouch), gave me peace of mind up to the day of surgery.

Road to Recovery

My hospitalization would soon be terminating. However, before leaving I insisted on seeing the Ostomy Clinical Nurse Specialist (CNS) making sure that I felt confident applying and removing my ostomy pouch. Even though the hospital wanted to discharge me, I was persistent. Managing my ostomy pouch will be a lifelong endeavor. The CNS reviewed the process of changing the pouch and demonstrated it several times. Her patience, warm smile and reassurance made me feel capable of handling this task on my own and confident to be discharged from the hospital. (Keep in mind that it is a patient’s right to determine whether or not he/she is ready to leave the hospital)

On My Own

After then spending time in a rehabilitation facility It was great to finally be home, and feel independent. As a widower, I was fortunate enough to have met a woman whose companionship helped to avoid a great deal of loneliness. Had she not been there, returning to my empty house would have heightened my feeling of isolation. Thinking back, yes, I certainly could have managed by myself. However, her presence made my transition from the hospital, rehabilitation facility, to home that much easier. Many patients who are single, or don’t have family/friends to support them when returning home, can find this a mixed blessing. They may feel independent, yet experience loneliness. Anxiety may occur over fear they may lack the ability to manage by themselves. The services of a visiting nurse, physical/occupational therapist, or a mental health professional can be provided to alleviate these concerns. The availability of these services were discussed during my exit conference from the rehabilitation center.

Adjustments To Be Made

Anxiety arose as I continued on my journey to recovery. The first of these emotional hurdles, especially for newbies is attaching an ostomy bag securely, preventing leakage. Having a spare pouch and supplies, along with a change of clothes, solves this concern. My medical supplier provided a small pouch to carry these items. Initially, I had many questions about the ostomy pouch. However, when various concerns arose, (getting this device on properly, leaks, or supplies), my nurse responded to these questions promptly and gave me the reassurance I needed. Trust me, I continued to have questions for months after my surgery. By that time I built up enough confidence in using this device, and it became more routine. Ostomy nurses serve as a great resource. They also recommended a monthly support group. Knowing what others have gone through, and how they dealt with their post-surgical life, can be very helpful.

Thanks to my Ostomy Clinical Nurse Specialist (CNS), two additional Leak Prevention Supplies (LPS) were suggested: (1) A belt attaching to both sides of the bag to hold the wafer and pouch more securely in place, and (2) A U-shaped elastic barrier fitting around the bottom of the adhesive which attaches to your body and wafer. These items can be requested from your medical supplier, and may help give some peace of mind. These remedies have worked for me. Timing for emptying the pouch is another adjustment. This usually occurs when the bag is 1/3 to 1/2 full. For me, this point is reached hourly, possibly because my kidneys are located in the front of my body. For others, this may occur up to 2 1/2 hours. However, empty points are individualized.

Timing this process initially limited me from going places beyond one hour. For many of us, noting the location of bathrooms is something we typically make prior to leaving for a destination. Even before surgery, I spotted the location of the bathrooms. If you think about it, for many people who still have their bladder, nature calls them frequently. Whenever this need arises, they go on “bathroom alert.” We don’t have this urgency or stress of finding a bathroom as they do. We can anticipate when to empty our pouch and can plan our pit stops in advance. This is a positive of having an ostomy pouch. Think about that.

Ways to judge the timing of emptying the pouch also become routine. Checking your watch, cell phone, or clock helps the timing factor. Generally, If I were to go to a restaurant, at most, twenty minutes away from home, I’m able to wait until I have eaten my meal before emptying my bag. For others, gauging the timing may involve the length of events (movies, shows, etc.) or the time it takes to reach a destination. It’s an awareness that you will develop. During your recovery period, fatigue could be an issue. Initially, I tried to do too much, too soon. Don’t fight this feeling. You don’t have to prove anything to yourself or anyone else, about how well you are recovering. Listen to your body. If it’s telling you to rest, do that. Remember, the fatigue lessens over time, and your strength does return. For me, it took approximately four months.

Don’t Try to push yourself. If you do you might become frustrated and that doesn’t help. In fact it may extend your recovery time.

Pouch Changing 101

I had devised my own schedule for changing the ostomy pouch — every Friday and Monday. A rule of thumb is to change it every three-four days. You will decide what days, how often, as well as choosing a medical supplier that offers products that best suits your needs. After leaving rehab, one company had offered supplies to me. If you, like me, prefer their products, then stick with them. If not, check other distributors and request samples from them. Many people experiment with several companies before finding the products that work for them.

After experiencing a few glitches, (ie; tearing a pouch, or unable to remove the protective piece covering the wafer),you realize some possibly could be avoided in the future. Being aware of these mishaps helps to avoid future problems, and will make the process of changing your bag go more smoothly. In addition, once you have repeatedly gone through this part of your “life without a bladder” it doesn’t require too much thinking or time. Perhaps this thought may be difficult to believe, but it does happen.

Don’t get bent out of shape when things don’t go as planned. Use these experiences as problems to be solved.

You may find other obstacles to overcome. The good news, once these challenges are met and conquered, they make this part of your life more tolerable. It may seem as though you’ll never feel comfortable. The more you are aware of this process, and follow it repeatedly, the easier it is to make the required adjustments. Those who have traveled along this path can be very helpful. They have been for me. The more information you receive, the less stress you will experience.

Be patient with yourself don’t hesitate to ask any questions you may have.

Yes, there are adjustments to make and new roads to travel. Through knowledge gained from resources, along with your own experiences, make this continuing journey just another routine part of your life. However, it takes time and effort. HAVE PATIENCE!!

It has been several years since my surgery. I have learned a lot, and have made adjustments to my life. You can reach this point as well.

YES, THIS IS SOMETHING YOU NEVER EXPECTED. YES, THERE ARE ADJUSTMENTS YOU WILL NEED TO MAKE. YES, THIS PROCESS TAKES TIME. YES, THIS WILL BECOME ANOTHER ROUTINE PART OF YOUR LIFE.

Jerry Pittman’s Story

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A Second Opinion Leads to a Life-Changing Ostomy

In the spring of 2014, I had completed another colonoscopy for my ulcerative colitis. It was my fifteenth colonoscopy in twelve years and many prescriptions of drugs later to curtail the bleeding of the polyps in my intestine.

I had a very productive career and life with a CPA practice for 34 years. In Grapevine, Texas I served on the school board and as a city council member, and was named “Citizen of the Year.”  But bleeding and bathrooms were getting on my nerves, so I called the Mayo Clinic in Rochester, Minnesota, unbeknownst to my gastro doctor.  I told them that I wanted another opinion.

After four days of extensive tests, discussions, colonoscopy, the doctors at Mayo concluded that the polyps were entirely too large to remove by minor surgery without bigger risks, and that removal of my large intestine was recommended. Cancer was discussed at length including risks and possibilities with large polyps and various medical unknowns involving my circumstances.

My large intestine was removed January 4, 2015. The surgery was in my home town and I had a great ostomy nurse that taught me all of the intricacies of the ostomy pouch and supplies. I returned to retirement life again here in the Mountains of Texas where it is cool in the summer and we return to Grapevine for the winter where we had our careers.

I am 76 today and walk with my dog 3 to 10 miles each day.  I play golf anytime I can. I am very active in my small town and I play the organ at our church each Sunday. I am not overweight and enjoy eating most anything.  I find it necessary to chew every piece of food very well.  I avoid nuts, corn, kale, popcorn, and tough fruit skins.

I love life and I am so happy for the decisions I made.

Every Ostomate Has a Voice Worth Hearing

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Saturday, October 3rd, 2020 marks the 10th anniversary of Ostomy Awareness Day. In partnership with United Ostomy Associations of America (UOAA), Hollister Incorporated is proud to stand with the entire ostomy community in celebration. Every ostomate has a voice worth hearing and we aim to embody ostomy confidence of our worldwide community with #OstomateVoices.

Spread Positivity and Share Your Voice

We’re connecting and empowering our worldwide ostomy community to share their own unique experiences—their challenges, their achievements and the joys of their daily lives. Share your words of encouragement that have helped you along your ostomy journey. Your story might help someone who might be struggling. Using your words, we’ll create a unique social card that you can share with your friends, family, and community. Share your voice here!

Join Us for a Virtual Cooking Class

Join us for a virtual cooking class on October 3rd with private chefs Ryan Van Voorhis, a fellow ostomate, and Seth Bradley of Nude Dude Food™, one of Chicago’s most sought after private dining and catering services. Register today to connect with others in the community and cook a delicious meal. Register today!

For more resources on nutrition with an ostomy, check out UOAA’s Food Chart or download the “Eating with an Ostomy” Nutrition Guide.

Show Off Your Stoma Sticker

Stoma stickers are a great way to raise awareness, start a conversation, or show support. Order your free Stoma Stickers in time for Ostomy Awareness Day, shipped anywhere in the US.

Share a photo or video of your Stoma Sticker on social media using #StomaSticker to be part of the conversation. Or show off your Stoma sticker while running in your virtual Run for Resilience Ostomy 5K and share how you celebrated #OstomyDay2020.

Share your #OstomateVoices and personalize your next Instagram or Facebook Stories with the Hollister “Ostomate Voices” digital stickers. It’s easy – search “Ostomate Voices” in the GIF library when creating a Story and you’ll find the whole collection, including a UOAA lifesaver and Stoma Sticker!

For more resources and interactive ways to get involved, visit Hollister.com/ostomyawareness.

Editor’s Note: this blog post was provided by Hollister Inc. the exclusive Diamond Sponsor of UOAA’s annual Run for Resilience Ostomy 5K events that benefit UOAA, a 501(c)(3) nonprofit organization.

Top 10 Ways to Raise Ostomy Awareness

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A Decade of Shining a Positive Light on Lifesaving Ostomy Surgery

By Jeanine Gleba, UOAA Advocacy Manager

“Ostomates Unite and Help Place The Ostomy In A Positive Light! Celebrate UOAA’s Ostomy Awareness Day!”  These were the words that were spread when UOAA announced the first National Ostomy Awareness Day on July 25, 2010. A decade later, UOAA continues to sponsor and celebrate this day annually in the United States by raising awareness about this life-saving surgery and increasing national visibility of those living with ostomies. Starting in 2014, and all subsequent years, UOAA has been celebrating Ostomy Awareness Day on the first Saturday of October, which coincides with World Ostomy Day every three years. This year National Ostomy Awareness Day will be held on Saturday, October 3, 2020. 

The idea for an awareness day was originally suggested by Ally Bain, who worked with UOAA as a summer intern in 2010. (Flash forward, this is the same Ally instrumental for the Restroom Access Act (aka Ally’s Law).  The awareness day began as an experiment in social media to see what kind of grassroots support they could get for ostomy recognition. UOAA sent out a request on social media asking all followers to show their allegiance to the cause by changing their online status to the slogan above and make their profile picture UOAAs logo.  The immediate response was so strong that they were also contacted by friends at Talkin’ Bout Guts, to host a 24-hour live podcast in honor of ostomy awareness. Thousands participated that year.

In recent years, UOAA has also named an Ostomy Awareness Day Champion. This year’s champion is Robin Brown, pageant winner Mrs. Washington, who uses her stage platform to raise awareness for ostomy surgery “all in the hopes that it can be a light for someone stumbling in the darkness”.  Her ostomy story and journey from farm girl to the title of Mrs. Washington World America is inspiring. Watch her special video message for Ostomy Awareness Day!

Over the years, celebrations have been centered around several different themes including Bouncing Back into Life, Navigate the Journey Together, Speaking Out Changes Lives and, most recently, Ostomies Are Life-Savers.

To commemorate the 10th anniversary, here are 10 ways you can join the movement to raise ostomy awareness this year:

  1. Help shine a positive light on ostomy surgery and go “live” on your own at 7:00PM EDT on October 3rd with people all across the United States. Hit the “live” button on your personal social media accounts (Facebook, Instagram or TikTok) to shine a light on yourself and tell everyone how your ostomy saved your life or that of a loved one. If you are a medical professional, share how your work helps save lives. 
  2. Participate in our 7th annual Run for Resilience Ostomy 5k. This year our local Ostomy 5k events will be held virtually along with our annual worldwide virtual Run/Walk, so you can walk or run in your favorite place or at home. Visit www.ostomy5k.org to register or donate for one of these events. You can also join UOAA’s “United Advocates Smashing Stigma” team too!
  3. Create a fundraising team through one of our Ostomy 5k events and challenge your family, friends, Affiliated Support Group members, colleagues and coworkers to raise ostomy awareness and funds for a good cause! Have your teammates share the team campaign and see who can get the most donations. Better yet, ask your employer to match any donations raised! 
  4. Make a donation to the “Ostomy Awareness Fund” as a tribute to the 10th anniversary. Donate a minimum of $30 and receive a special bandana with the “Ostomies Are Life-Savers” graphic image.   These bandanas are also a great pet accessory.  Share a photo with UOAA of your pet raising ostomy awareness!
  5. Participate in some of the events we have planned with partners such as the Facebook Live Event that will be co-hosted with Crohn’s and Colitis Foundation on October 3rd. 
  6. Raise awareness and spread the message that ostomies are life-savers using our infographic. We encourage you to share, post or print it wherever possible. 
  7. Our Operation Ostomy – A Life Saver campaign continues to spread the message that we are saving lives one ostomy at a time. Please use our 10th Anniversary Ostomy Awareness Day logo for your profile picture on your social media accounts. Use the hashtags:  #OstomiesAreLifesavers #OstomyDay2020 and tag UOAA on Facebook @uoaainc  Instagram @uoaa_ or Twitter @uoaa. 
  8. Get your Federal, State or Local elected officials to pass a proclamation declaring October 3, 2020 as the 10th anniversary of this special day. Use our sample proclamation or take action here.
  9. Use our sample letter to the editor to share with your local media why ostomies are life-savers.
  10. Aside from Ostomy Awareness Day, October is full of fun fall activities. Carve a pumpkin (or paint) in an ostomy theme. “Shine a light” in your carved pumpkin and raise ostomy awareness in your neighborhood.

For more information and the latest ways to get involved including activities from some of our sponsors visit https://www.ostomy.org/ostomy-awareness-day/.

With your help we will carry on breaking the silence and shining a positive light on what has saved so many lives.

Robin Brown’s Story

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Living with an Ostomy and IBD led her to become an Unexpected Beauty Queen and Advocate

 

Hi Everyone! My name is Robin Brown, I’m a 40-year-old wife, momma & farm girl. I also happen to have an ostomy and the title of Mrs. Washington World America!

My relationship with my guts has been a long battle….even as a child I suffered from severe ulcerative colitis symptoms but I wasn’t officially diagnosed until I had my first bowel resection at age 21 as result from an infection following an appendectomy. I lost my marriage and some guts but I finally got some answers…or so I thought. The next ten years were a rollercoaster of medications, treatments, alternative therapy and surgeries(15 to be exact.)

I was miserable. My family was miserable. But, I’d had enough and didn’t want any more treatments. Soon I was back in the hospital and one doctor reviewed ALL my info and said he knew exactly how to fix me…OK, just one more surgery then. Well, he was right…he fixed me!! I was no longer having incontinence issues, I could eat again (personalized diet plan) and was feeling great compared to the previous ten years. End of story right?!

WRONG! Less than a year after surgery I was in an accident where I was crushed between our off-road truck and the back wall of our garage. It was a literal and figurative blow that nearly took my life. I had holes in my large intestine, holes in my small intestine, a shattered pelvis, four broken bones in my back and an aortic aneurysm. I had to undergo countless operations, hours of physical therapy and I was even put into a coma while doctors worked fixing one piece at a time.

After everything began to heal I realized how broken I was. After the accident, I lost myself. I had worked as a medical assistant for years and loved working in healthcare. Now that was gone. I was finally a mother after trying for nearly ten years. Now I couldn’t even lift my two-year-old son for a hug. I took great pride in being a partner to my husband. Now I needed him to help me sit on the toilet. I was stressed and depressed. My UC symptoms worsened by the day and now that I had shortened guts it caused a multitude of other problems like rectal prolapse (twice!) which led me to finally agree to get my colostomy pouch. I cried, a lot.

Being home, then in and out of the hospital, and no longer able to have a 9-5 job I decided to start a little online business selling skincare and cosmetics. Not really to make money but just to feel like I was doing SOMETHING! I had to get out of this funk. I was hiding. Hiding from my husband, even though he had an easier time accepting things than I did. Hiding from my reflection- because every time I saw myself I felt depressed and sad. I was hiding from the world by wearing bulky sweatshirts in the middle of summer so no one would see my bag. Then one day in my online makeup group I shared a bit of my story. The response was amazing and beautiful and that’s when things began to shift. One afternoon I received a message from an old friend suggesting I compete in a Mrs. Beauty pageant since the focus is so much on what you do to inspire rather than just what you look like. Me? In a pageant? Probably not. Then a few weeks later the same suggestion from another. Ok universe…I hear you. I decided to apply for the Mrs. Washington America pageant and was quickly named Mrs. Mason County.

Great! What in the heck did I sign up for? Before surgery, I swore off swimsuits and anything tightly fitted. Now, not only will I wear a swimsuit on stage but I’m going to ask to be JUDGED?!?! What on earth was I thinking? Now, in addition to volunteering and fundraising, each queen must have a platform. Something they want to bring awareness to and are passionate about. The obvious choice for me was gastrointestinal disease and ostomy awareness and education, but that’s not the most beautiful platform and can make people uncomfortable. As quickly as the idea came, fear and doubt began to creep in and I promptly began thinking of other ideas.

At my first pageant event, a holiday party to meet all the other queens, we were introduced to a designer that would be custom designing an opening number dress for each of us! As I chatted with the designer I quietly mentioned I had a colostomy bag and could we design something to hide it as much as possible because I wanted to feel beautiful. A short while later I bumped into a sister queen at the elevators. She introduced herself and wanted to know if she could ask a personal question…of course, I said! She asked if she overheard my conversation correctly that I had a colostomy bag? Yes, yes I do! “Really?!? Where, I don’t see it?” She continued, “are you happy you made that choice? What’s the hardest part? Does it hurt?” A million questions rolled off her tongue at once and then she shared her struggles with GI disease and the fact that an ostomy has come up in her doctor’s appointments and she was terrified and thought life would be over¬– until she met me! I knew right then, I had the right platform and that by sharing my story I could help others in ways I never dreamed.

At that moment a woman approached. She wanted to let me know her husband has an ostomy and seeing me on stage gave them so much hope and even though I didn’t win they were cheering for me! Again, I had to thank the universe for letting me know I was exactly where I was supposed to be.

In the months leading up to the pageant, I began volunteering at hospitals and schools, sharing about differences and acceptance. I had the opportunity to be a speaker with a major medical company to share my ostomy journey and provide input to how they can better serve our community. I even went live on Facebook and showed my bag to the world!

In a few short months, I became empowered and proud of my body and my spirit again. I walked the stage in a swimsuit like I was a supermodel, rocked a gorgeous FITTED gown with grace, and with a smile heard myself say the word bowels, as it proudly rang through the pageant auditorium.

Guess what? I didn’t win. I did not even place in the top 10. I went to the coronation party with a stage smile and promptly excused myself with my best friend by my side. She knew I needed to cry. As we reached the bottom of the grand staircase I could feel the tears of disappointment welling, and her hand grasping tighter to my arm letting me know I just had to keep it together for a few more seconds. At that moment a woman approached. She wanted to let me know her husband has an ostomy and seeing me on stage gave them so much hope and even though I didn’t win they were cheering for me! Again, I had to thank the universe for letting me know I was exactly where I was supposed to be.

Soon after, I applied to represent Washington at the Ms. World International pageant after a few weeks and committee meetings later, I was selected! I am now Mrs. Washington World America and I couldn’t be more proud to represent my state and the ostomy community at the upcoming pageant.

I never thought I’d have an ostomy. I never dreamed this farm girl would be a beauty queen. I never imagined my trials would become my triumph and my story of hope. Throughout my life, many have attempted comfort me with the words “everything happens for a reason.” This honestly just kept me waiting for a moment of clarity and answers but that moment never came. I found no reason! I think sometimes bad things just happen and it’s up to us to give them meaning and purpose. For me this is it. Sharing my story, my triumphs, my tragedies. All in the hope that it can be a light for someone stumbling in the darkness.

 

Robin Brown will be this year’s Ostomy Awareness Day Champion for UOAA. Check out all the ways to get involved and join with her on Saturday, October 3, 2020.  

Annemarie Finn’s Story

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Bladder cancer and urostomy surgery do not stop Annemarie from living her best life.

I am a bag lady. I am highly educated and employed, yet carry a bag wherever I go. I don’t leave home without it. Because of bladder cancer, I have a urostomy. Like many other women, it took some time for my diagnosis. At 57, many of the symptoms I experienced were attributed to my age: menopause, UTIs, kidney stones, fibroids, etc. Thanks to the fibroids, I was scheduled for an ultrasound. It was my gynecologist who found the bladder tumor. She referred me to a urologist. In fact, she insisted. Her office called to make sure I followed through. I met that week with a local urologist. He did a scope. I saw him look at the nurse, concern written on both their faces. He started talking about surgery and apologizing for the diagnosis. In my naivete’, I had gone to the appointment by myself. I don’t remember him even saying the words, but I had bladder cancer.

Scans and a transurethral resection of a bladder tumor (TURBT) were scheduled for the following week. Usually an outpatient procedure, I was in the hospital for 4 days due to heavy bleeding after the TURBT. The tumor was large and the doctor couldn’t get it all but he thought it had penetrated the muscle. Unfortunately, the pathology was inconclusive so he did another TURBT the following week. The outcomes were exactly the same so we both decided my best chances were for a second opinion at Dana-Farber Cancer Institute in Boston. Throughout our discussions, he explained what my future might entail. It looked likely that they were going to have to remove the bladder and I would either have a new “bladder” or a bag. Quite honestly, I had no idea what it entailed, but I was horrified.

Dana-Farber is an amazing place. I had a whole team in place: a medical oncologist, an oncology urologist, a nephrologist, among others. The plan was an MRI to confirm the tumor’s pathology, a nephrostomy tube, chemotherapy and, if the cancer had not spread, a radical cystectomy. If it had spread, I would not need surgery but would be eligible for palliative care. Who would have thought surgery is the best case scenario. Due to claustrophobia, and despite anesthesia and Ativan, I moved so the MRI was inconclusive. I needed another TURBT. Thanks to my new amazing surgeon, the tumor was removed and the passage to my kidney was cleared. The pathology of the tumor showed no spread to the muscle and an ultrasound showed no more kidney hydronephrosis. Even better, I would no longer require chemotherapy. I did try immunotherapy with BCG but it did not work. The cancer was aggressive so we had to treat it aggressively. My radical cystectomy was scheduled for January 25, 2019.

It took me a long time to get there. I even asked what would happen if I did not receive the surgery. I would be dead in a year.

Wow, that was sobering. Because of the proximity of the tumor, I did not qualify for a neobladder. I would have to have a urostomy. Every time I talked about it, or even thought about it, I cried. I felt like I was going to be a freak. I offered my husband a divorce if he wanted one. I was devastated and frightened. I have learned that fear of the unknown and our imaginations are far worse than the reality. While so much of what had happened to me was out of my control, I did have control over one thing: HOW I handled everything. I decided knowledge was power. I was fortunate. My hospital had a class for urostomy candidates. For the first time, I was able to see an actual urostomy pouch. I was given hands-on instruction on how to change a bag. I met ostomy nurses (the best people in the world!) who would be helping me.

I decided I would be the one to handle my changes, right from the start. I would take control.

My surgery lasted 7 hours. I needed a transfusion but things went well otherwise. The surgery was not easy. People have described it as feeling like you were hit by a bus. I never really had any pain. It was easily managed with Tylenol. However, I was so weak. I eventually needed an iron transfusion. The one thing I wish I had gotten for my return home was a shower chair. Showers were the worst for me. It took me two months to feel more like myself and another month before I felt ready to return to work. I also cannot say enough about getting a good ostomy nurse. I have been described as a delicate flower (surprising to those who know me). I have very sensitive skin. The nurse was a Godsend to me in trying to manage all of my skin issues. After my visiting nurse visits ended, I continued to see the ostomy nurses at the hospital where I had my surgery. It took a year but, through trial and error, I finally have gotten a handle on things.

I had a few leaks. They were usually caused by user error. They were not the huge floods I expected. Honestly, none of this was as awful as I expected. So many people said this would be my “new normal”. I can’t stand that term. I call it my new reality. There isn’t anything normal about having a urostomy. However, it is very doable. I now wear two-piece bathing suits. I didn’t before. I am wearing the same clothes as I did before. I can kayak, hike, ride my bike, swim for hours, anything I did before. I was here for the birth of my first grandchild. I am back to work, a job that I love. I am not shy about talking about my bag to others. It is not a secret. In fact, I am kind of proud of it. I am alive and life is good.