Resilience Story: The Wheelin’ Sportswoman

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By Ed Pfueller, UOAA Communications and Outreach Manager

Elizabeth Shank was paralyzed in an accident at the age of 20 and has had an ostomy for the past year. She continues to embrace the things she loves most.

Shank, 50, became an outdoors enthusiast during her life with a wheelchair. For almost a decade, she had the dream of obtaining a specialized trackchair to facilitate her access to fishing, hunting and camping locations.

Shank’s spirit of resilience and determination caught the attention of the Mahoning County (Ohio) Federation of Conservation Clubs and they helped rally several civic organizations to the cause of raising the $24,000 for the trackchair.

She shed tears of joy earlier this year when they surprised her with (not only a new trackchair) but a customized trailer with her name and the logo “The Wheelin’ Sportswoman” emblazoned on it. “I can now go over rocks and get more places,” Shank says.

Her love of skeet shooting and hunting has only grown over the years by working with the National Turkey Federation and people dedicated to getting disabled veterans and other people like her access to the outdoors.

Shank has lived a very active life with her husband of 23-years and a 14-year old son. In addition to sporting pursuits, she has enjoyed horseback riding and volunteering with local nonprofits.

In 2007-2009 she was twice awarded 1st runner-up in the Ms. Wheelchair Ohio competition.

She started a new job about two years ago and was enjoying good health. Then, unexpectedly she was hospitalized with a serious intestinal illness.

Shank was diagnosed with ulcerative colitis. Because of the location of her T-12 L-1 spinal cord injury, she did not experience the pain symptoms of the sickness.

In July and August of 2023 her hospitalizations became more frequent and life-disrupting. “That’s when it finally beat me. It got to the point when I could not have any happiness, I’d get sick and my gut would retaliate and I’d end up in the hospital again,” Shank remembers.

“To me the ostomy has been a lifesaver.”

In the last incident, she was taken by ambulance to the hospital because of pain and it was determined she had pancolitis of the whole colon. “They said there is nothing else we can do for you, you’ll need to go to the Cleveland Clinic.” Ileostomy surgery came next. “I was not reluctant because I knew it would help me,” she says.

“Funny thing is, once I had that ileostomy that next morning they came into take my blood pressure and it was back to normal after being very high.”

Despite having her colon removed on September 19, 2023, the next month she was back out in the field hunting. Things were turning around for her with the help of the ostomy.

“I could be who I was before, not always feel down, always worried and not wanting to do anything or have fun,” Shank says with fondness.

Shank did experience some typical issues such as sores however and reached out to a Facebook group for women with ileostomies.

There she met Angie Davenport an ostomy advocate and UOAA volunteer.

“When I was down Angie was very helpful and sent me messages of encouragement,” Shank says.

“Although we haven’t met in person yet, I feel she’s a very close friend just from our interactions and being able to give her encouragement concerning living with an ostomy,” Davenport says.

Davenport is the race director for the Trumbull County Run for Resilience Ostomy 5k in Niles, Ohio this year on Ostomy Awareness Day, Saturday, October 5 to benefit UOAA. She is also founder of the nonprofit Blessed with a Bag.

“I’m hoping to meet her at one of our local ostomy support group meetings or the October race. She’s definitely an Ostomy Warrior and an inspiration to other ostomates,” Davenport says.

“I’m looking forward to going around the track. I just want to go and help her out, with everything she helped me with,” Shank says of the Ostomy 5k event.

The message of Ostomy Awareness Day resonates with Shank.

“To me the ostomy has been a lifesaver,” she says.

“I’m open about things and was a mentor for spinal cord injuries so would help others with an ostomy as well.”

“If somebody did not quite know or was having a hard time I could tell them my story and let them know it will get a little easier, but it takes time,” Shank shares.

Shank says she is not shy about her ostomy. “l will let people know if it’s talkative or releases gas I will say ‘hey she’s a little talkative today,” she laughs.

“It’s part of me and has helped me live my life fuller then when I was sick with the ulcerative colitis.”

As for the rest of her Fall plans besides Ostomy Awareness Day? “You can find me in the woods,” she says. It’s hunting season after all.

 

To learn more or sign-up for the Run for Resilience Ostomy 5k visit ostomy.org/5k. To celebrate the resilience of the ostomy community donate to the Niles, Ohio Ostomy 5k and UOAA here. 

A Milestone for Ostomy Awareness

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 10 Years of the Run for Resilience Ostomy 5k

By Ed Pfueller, UOAA Communications and Outreach Manager

When people without ostomies pay to put on a pouch, fill it with applesauce, and then run a 5k- you know you are onto something. It was 2014 in Durham, North Carolina, and what started a few years prior as the ‘Wanna Wear One’ challenge for medical professionals to learn empathy for ostomy patients had now evolved into a community-wide ostomy awareness event.

The idea for an Ostomy 5k started after Lara DuPree, a WOC nurse at the University of North Carolina, discovered that there was not a 5k for the patients she was most passionate about. She reached out to friend Angela Richardson, a WOC Nurse at Duke, to help change that.

“I was like, I don’t know anything about that, but okay!” Richardson recalls. ­­Richardson had seen her grandmother and patients initially wish for death over an ostomy and knew more needed to be done to educate against stigmas.

DuPree reached out to United Ostomy Associations of America (UOAA) and found that though they were not experienced in such events they were willing to help build enthusiasm. The event was a perfect celebration of Ostomy Awareness Day recognized nationwide every October.

The event soon had a location on a scenic greenway in Durham, but still needed funding. The duo reached out to their ostomy manufacturer contacts and also hit the streets asking local businesses, like run shops, many of whom did not know what an ostomy was. “Each person we talked to was another opportunity to raise ostomy awareness,” Richardson recalls. They also got in-kind donation items for a silent auction that raised over $1,000.

Medical units of their respective hospitals also fundraised and challenged each other for the coveted “golden toilet trophy” engraved like The Stanley Cup! “It was a fun way to get people involved, a good conversation piece for anyone walking by the nursing station,” DuPree says.

A kids’ fun run and activities like face decorating, also make it a great family-friendly event. The organizer’s children grew up around the event and are now vocal and dedicated ostomy advocvates.

One ostomate runner that first year has since had a lasting legacy with the race, Sandi McBride.

McBride found “a ray of hope” in her fellow ostomates who completed the 5k alongside her. Sadly, McBride passed away four months later from Crohn’s disease complications. “The Ostomy 5k refueled her spirit and determination and she knew her ileostomy didn’t define her,” her daughter Keyla reported.

In her honor, the McBride Scholarship was created with a portion of the money raised each year. This gift enables a local person in need to attend a UOAA National Conference. “She was such a positive and inspiring person and had a big team of family and friends that came to support her that year and returned for several years after she passed,” DuPree says.

Lara DuPree and her mother Dani Osewalt.

After the success of the first year, the pair were excited to get the word out even more and found lots of enthusiasm at UOAA’s 2015 National Conference in St. Louis. “We wore our t-shirts all around and passed out pins to everyone who was interested,” Richardson recalls.

In the weeks leading up to the 2015 Durham race the importance of supporting the ostomy community became even more personal for DuPree, as her mother, Dani Osewalt, had ileostomy surgery after a return of colon cancer. DuPree balanced caring for her mother with organizing the race. Her mom was discharged on the day of the event, Ostomy Awareness Day. “It has to be symbolic of something,” DuPree thinks.

Osewalt is the 5k’s unofficial cheerleader, and the top fundraiser for the cause every year.  “I am beyond proud of the dedication Lara has for the Ostomy community that I am a part of. She inspires me, educates me and supports me as an ostomate and as her mother!” Osewalt says.

A Legacy Across the U.S.

In 2016, UOAA Executive Director Jay Pacitti worked to increase sponsorships and expand the event nationwide. “We had folks from all over the U.S. ask about starting an event. It was great to see people so passionate and willing to do what it takes to spread awareness through a 5k.” Pacitti remembers.

The event was also renamed the Run for Resilience Ostomy 5k. “We felt that the resilience just spoke towards persons living with an ostomy, rising above challenges and continuing to persevere through whatever it takes,” Richardson says.

2024 marks the 8th anniversary of the Birmingham, Alabama and Boise, Idaho Ostomy 5ks. This year events are also taking place in Arkansas, Ohio, Pennsylvania, Illinois, and Tennessee.

Millie Parker and her extended family participate in person or virtually each year.

Before the pandemic sidelined live events in 2020, UOAA volunteer Millie Parker usually flew to North Carolina with three generations of family members for the 5k. The Worldwide Virtual Ostomy 5k, now also in its 10th year, has allowed her to continue the tradition. “Now wherever we are, all 19 of us wear our Ostomy Awareness Day shirts each year to run, walk, bike, swim or kayak to celebrate my new lease on life,” Parker says.

Nationwide the Run for Resilience Ostomy 5k is the biggest fundraiser in support of UOAA’s programs and services. Since 2014 about 1,300 people have participated in the North Carolina event alone and it has earned almost $109,500. Nationally almost $494,000 has been raised in support of UOAA’s mission.

“The impact organizers Lara, Angela and now Jessica have made to the ostomy community and to UOAA over the past 10 years is absolutely amazing,” says UOAA executive Director Christine Ryan.

“It has been beautiful to see the ostomy awareness and communities that have blossomed around the Run for Resilience Ostomy 5k events all across the country,” says UOAA President Cheryl Ory.

Back in North Carolina, an impending Hurricane canceled the 5k portion of the event in 2022 but the popular silent auction was still a success. In 2023, despite pouring rain, smiles shined on the faces of participants crossing the finish line as a DJ welcomed them each in. Sponsors shared details of their ostomy products at their table displays and the Triangle Ostomy Support Group shared their local support resources.

Run for Resilience Ostomy 5k founders Lara DuPree, left, and Angela Richardson, center, had out a medal for the top female ostomate finisher at the 2023 event in Durham, North Carolina.

On Saturday, October 5, 2024 Lara, Angela and newest co-race director, Jessica Blakeslee, and their dedicated friends and volunteers are looking forward to celebrating 10 years of raising ostomy awareness at the Durham, North Carolina Ostomy 5k.

They look forward to encouraging ostomates to meet and celebrate their resilience. One of their favorite memories is when a supporter from Nebraska flew to North Carolina for the event. “She said, I’ve had my ostomy for 10 years, and I’ve never met somebody else with an ostomy, this is the first time. And she just started crying. She felt seen, it was amazing,” DuPree remembers.

They know ostomy awareness and education still has a long way to go and want their community to know that there is nothing a person with an ostomy can’t do.

Fittingly (despite the serious runners the timed race often attracts) the course record is still held  by an ostomate– Collin Jarvis.

UOAA wishes to thank all the volunteers and local and national sponsors that have made the Run for Resilience Ostomy 5k possible! Visit ostomy.org/5k to support the cause!

 

 

Show Your Short Bowel Syndrome Pride During SBS Awareness Month in August: Digital Sponsor, Takeda, Launches a New SBS GIPHY Page

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Educating yourself and engaging with others can help you take ownership of your Short Bowel Syndrome (SBS) care. We hope the following resources will help you feel more informed, empowered and connected to others this SBS Awareness Month and throughout the year.

Share your Pride during SBS Awareness Month!

Takeda is excited to share that we recently launched an SBS-dedicated GIPHY channel. Visit www.giphy.com/SBSStrong to find SBS-related stickers and GIFs. You can also search for them via your GIF keyboard wherever you use GIFs – for example, on Instagram, Facebook, WhatsApp, SMS, TikTok, X (Twitter), and more. Here are a few examples from our GIPHY Channel:

Continue reading for informational and support resources for the SBS community. Get started here and learn more about SBS.

Finding an SBS Specialist and Knowing What Questions to Ask

Short bowel syndrome is a serious and chronic malabsorption disorder that occurs when parts of the intestine are removed surgically and the remaining intestine may not be able to absorb enough nutrients from food and drink. Certain new symptoms that arise after intestinal surgery may mean it is time to connect with an SBS specialist.

Because SBS is rare, it can be difficult to find a healthcare provider (HCP) who has experience managing and treating SBS. We developed the HCP Locator Tool to help identify HCPs in local areas around the United States who have knowledge and experience in managing this rare condition. If you haven’t yet connected with an SBS provider, you can check this link to see if there is a medical provider with SBS experience in your local area.

Not all people who have parts of their intestine surgically removed will be diagnosed with SBS. Knowing what symptoms to look for after intestinal surgery may help reduce the time to an SBS diagnosis. Click here for a list of SBS symptoms that may arise after surgery.

Once you have identified a healthcare provider with SBS experience, it can also be challenging to know what questions to ask. Take our Gut Check Questionnaire to help prepare to speak with your doctor.

Establishing SBS Management Goals, Including Maintaining Essential Nutrition and Hydration

Managing short bowel syndrome can be complex, but working with your healthcare team to establish a set of management goals that are individualized to your distinct needs can be an important part of self-advocacy. Some goals might include:

  • Improving intestinal adaptation following resection surgery
  • Weaning off of the parenteral support that some people with SBS require after surgery in order to meet their nutritional needs
  • Making adjustments to daily tasks (e.g., using the bathroom, sleeping, etc.) in a way that can potentially improve day-to-day routines

You can learn about managing SBS here.

Although there is no “one-size-fits-all” SBS diet, your doctor will work with you to develop nutrition and hydration goals that are specific to your needs. This downloadable PDF illustrates how each section of the intestinal tract is responsible for specific functions that help absorb nutrients and fluids to promote digestion.

Staying adequately hydrated is critical for people with SBS. Read important information about the signs of dehydration and tips about staying hydrated in this digital booklet featuring Oral Rehydration Solution (ORS) recipes.

Connecting with Others

Living with a rare and serious digestive disorder like SBS can be isolating. As part of our continued commitment to the SBS community, we are always looking for ways to help people living with this condition to connect with one another. We are proud to provide people with SBS who are reliant on parenteral support the opportunity to connect with an SBS Mentor through our SBS Connect program. SBS Mentors are available to share their own experiences with the condition and its treatment.

There are a number of online and live communities where you can connect with others living with SBS. For example, you can find our SBS-specific Facebook community at https://www.facebook.com/TakedaSBS/.

And, again, you can now include SBS-specific stickers and animated GIFs in your online conversations. Bookmark www.giphy.com/SBSStrong and watch for new content in the months to come.

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

Access to Supplies with Medicare – The Never-Ending Story

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Words of Advice from UOAA’s Advocacy Committee Co-Chair Sue Mueller and Advocacy Manager Jeanine Gleba

UOAA often hears from the ostomy community about their struggles with getting quantities of ostomy supplies that are over the Medicare allowable limits. UOAA recognizes that the process to obtain supplies beyond the maximum amount is difficult to navigate and is not well understood.  

Medicare’s coverage of ostomy supplies is explained in their Local Coverage Determination (LCD) policy (A52487) and the allowable quantity limits are in LCD policy L33828.  According to their policy:

“The quantity of ostomy supplies needed by a beneficiary is determined primarily by the type of ostomy, its location, its construction, and the condition of the skin surface surrounding the stoma. There will be variation according to individual beneficiary need and their needs may vary over time. The actual quantity needed for a particular beneficiary may be more or less than the amount listed depending on the factors that affect the frequency of barrier and pouch change. 

The explanation for use of a greater quantity of supplies than the amounts listed must be clearly documented in the beneficiary’s medical record. If adequate documentation is not provided when requested, the excess quantities will be denied as not reasonable and necessary.”

According to our conversations with the Center for Medicare and Medicaid Services’ (CMS) billing contractors the quantities listed are reasonable and necessary for 80% of the patient population. The key for the small population who require quantities of supplies that exceed the usual maximum amount, is the information documented in the medical record that explains the need for the increased amount.  What are the factors that affect the greater frequency of changes for you? You must determine what documentation is missing from your medical record that medically necessitates having the greater quantity and then work with your medical professional to get the missing information included in your records and have your supplier submit them to Medicare. Please note that a letter from a nurse or doctor is not sufficient nor is just having it listed on your prescription. The justification of your need for additional supplies must be in your medical record. To learn more read UOAA’s blog “Know What’s In Your Medical Record”.

Any claim that goes over the allowable quantity is automatically denied in the Medicare billing system. It must then be appealed and the supplier has to show the documentation that proves medical necessity etc.  Appeal denial is so frequent that most suppliers no longer advance the increased amounts while waiting for an appeal decision and do not automatically file appeals. They only submit claims for the allowable limits and then the consumer has to pay out of pocket for any overages. 

Given the cumbersome frustrating process, before you deal with the hassle, UOAA suggests that you consider being re-evaluated by an ostomy nurse. Together you can evaluate why you need more supplies and determine if you need a different pouching system or can find another work around.  For example someone who uses 3-5 pouches per day may benefit from changing to a drainable pouch. If there isn’t an ostomy nurse in your local area, some facilities have telemedicine options or UOAA has a self-pay virtual ostomy clinic. There are many different types of supplies available to meet varied needs of ostomates and remedy the challenges that occur over the lifetime of an ostomy. A certified Wound Ostomy Continence (WOC) nurse is the ideal person to assess your situation and make recommendations. 

Increasing the number of pouches is not the solution for every problem. For example someone with a high-output stoma producing greater than 2L of liquid stool daily will want to first consider looking at their diet by working with a dietician and reading UOAA’s Eating with an Ostomy information. In some situations the solution may be adding medications or the timing of medication and eating.  This is why it is important to consult with your medical team or obtain a medical team that is responsive to your needs.

After you have consulted with your medical team and determined that you have a justifiable need that can be documented for more pouches, then pursue the Medicare appeal process with your supplier. Be prepared to purchase your additional supplies while you wait for the Medicare decision. Try to get your needed supplies at the lowest cost through discounts and free supplies. UOAA lists lower cost supply resources here.

If your appeal is denied, another resource is your local State Health Insurance Assistance Program (SHIP). They can assist you with correcting billing issues, and filing complaints and appeals. With your permission, SHIP will work with Medicare directly to help solve problems on your behalf. Find your local SHIP here.

The information we just discussed applies to people with traditional Medicare, if you have a Medicare Advantage plan you should follow the appeal procedure of your plan. You may also request a case manager who is an employee of the plan for assistance with the process. The decision-making process is different with Medicare Advantage plans. 

UOAA has been advocating on this issue for many years and we will continue to beat this drum with the Centers for Medicare and Medicaid Services (CMS) and their coverage jurisdiction Medical Directors until improvements are made.

 

Panniculectomy with stoma re-site allows ostomate to thrive

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Colleen Reddington’s Ostomy Story

I’m interested in sharing my story because I know I am lucky to have a smart nurse practitioner for a sister who has advocated for me and helps me advocate for myself. When I was researching and looking for patients who had experienced the same non-cosmetic abdominal plastic surgery as I had, I was only able to find one person in the US. It has been so life-changing for me and I think others may benefit from it as well.

I was diagnosed with stage IIa rectal cancer in August 2019 after my baseline screening colonoscopy at 50. I wasn’t surprised; I knew something wasn’t quite right and hadn’t been for a while. That fall I underwent radiation treatment and oral chemotherapy in preparation for Low Anterior Resection surgery in January 2020.

My tumor was removed along with about 80% of my rectum and 13 lymph nodes. I had clear margins and a temporary ileostomy. I had a distinctly unfortunate ileostomy situation – I also live with epilepsy and I wasn’t immediately aware that the ileostomy was spitting out most of my epilepsy meds before they could metabolize into my system. As a result, I had six tonic clonic seizures in six weeks (usually I have one or two a year) and I was a bit of a mess. Add in severe skin breakdown due to seal problems and there was no way I could start cleanup chemo. We decided to reverse the ileostomy earlier than expected, after just 8 weeks, at the end of March 2020.

This has been nothing short of life-changing. Prior to this surgery, I had so much difficulty getting a good seal that I dared not even shower with the appliance on.

I started what was supposed to be eight rounds of chemo in May. After two rounds I discovered I had a rectovaginal fistula. I opted to push through and deal with it later. As it was I had yet to regain bowel control and was dealing with many of the issues of LARS (Low Anterior Resection Syndrome).

I made it through four rounds of chemo before I was hospitalized for severe constipation. We decided I’d gotten all the good I was going to get from chemo and made plans to have surgery for a temporary colostomy in preparation for surgery to repair the rectovaginal fistula. The colostomy diverts everything, giving that area a break and hopefully ensuring greater success in repairing the fistula. Because the colostomy helped and in light of the incredibly high rate of recurrence for rectovaginal fistulas, I decided to keep it and pass on the fistula repair surgery.

But an interesting thing happened – when I got the colostomy my quality of life really improved! I no longer needed to wear a diaper. As time went on, I was still dealing with severe skin breakdown and problems getting a good seal. I have been overweight all my life and the fact my belly was soft with dips and valleys didn’t help. Additionally, because of carrying so much weight in my belly my colorectal surgeon was limited in the length of gut he had to work with and the stoma profile he was able to create.

My sister Madonna is a nurse practitioner and she suggested that I consult with a plastic surgeon to work with my colorectal surgeon. She thought perhaps they could do a panniculectomy and stoma re-site to give me a better landscape to work with. My colorectal surgeon had not done this before.

To make it even more unique, my sister was the charge nurse on the Trauma/ICU Step-down Unit when my colorectal surgeon was doing his residency over 20 years ago. She already had a plastic surgeon in mind (one she had sent her patients to) so when I approached my colorectal surgeon with this possible solution to my seal/skin issues he trusted her judgment and agreed to it.

Unfortunately, due to the pandemic my surgery was delayed twice. I had it in March 2022, almost a year after I initiated the process.

This has been nothing short of life-changing. Prior to this surgery, I had so much difficulty getting a good seal that I dared not even shower with the appliance on. I used so many extra products and changed it out at least twice a week. Now, I use just the flange and it lasts all week – even through being in the pool five days a week, some days twice; through showers after every pool session.

I do have a parastomal hernia that my colorectal surgeon minimally repaired while re-siting but getting rid of the excess belly fat has even helped with managing that. I feel like I have my life back, without the anxiety, stress, and physical pain of a low-profile stoma and inadequate seal can cause.

Prior to this surgery, my stoma was placed almost parallel to my belly button which added to the trouble. The panniculectomy removed 10 pounds of belly fat and my bellybutton too. The surgery is not done for cosmetic reasons so some of the steps a plastic surgeon will take in doing a tummy tuck (like preserving the bellybutton) are not done in a panniculectomy.

Even with the seal/skin problems, I’ve always been grateful for my colostomy. But now I feel like my colostomy is really doing what it’s meant to do – helping me be in control and do whatever I want to do.

I have the option to reverse my colostomy at any time, but I won’t – it essentially takes care of the rectovaginal fistula (which remains stable since getting the colostomy) and also gives me bowel control, which I never regained after my temporary ileostomy reversal. I realize it wasn’t a long time but with only 20% of my rectum remaining, I’m not confident I ever would.

In addition to my water aerobics routine (I go M – F every morning and again in the afternoon three or four days for a total of 8 – 9 hours per week).  I now shower also multiple times a day. I couldn’t do that before – I was only able to shower twice a week (when I changed my appliance) and resorted to sponge baths the rest of the time. Before, in addition to the flange and pouch, I used stoma powder, paste, and strips. Now I just need the flange and pouch and it gets me through a week. I’m saving money and creating less garbage. I’m also saving time. I used to have to let my flange “cure” for an hour before moving; now it takes about five minutes and I’m up and about.

Even with the seal/skin problems, I’ve always been grateful for my colostomy. But now I feel like my colostomy is really doing what it’s meant to do – helping me be in control and do whatever I want to do.

 

Our Ostomy Story- Chris and Alexa

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A couple’s story of Crohn’s disease, caregiving, and family

Our battle with Crohn’s disease began back in the spring of 2006, one week after we started dating in high school. I was 16, and my now husband, Chris, was 17. We first met each other on the tennis court a few years before this- a love we still share to this day. Being just 16 and surrounded by a relatively healthy family, I had never experienced the wrath of any chronic illness, personally or by association. Chris had also been a healthy kid, which is why he and his parents found his worsening symptoms to be so alarming. As teenagers, we didn’t yet realize he had a serious condition that would need managed for the rest of our lives.

His first hospitalization happened the week after he asked me to be his girlfriend. I remember being very surprised and clueless as to why he was in the hospital. He and I practiced tennis together almost every single day, and I hadn’t noticed that anything was wrong. (To fully appreciate this journey, you have to realize that Chris does not complain about anything. Ever. He works really hard and refuses to make excuses- a trait that is both very admirable and very frustrating). Little did I know, Chris had been suffering from severe abdominal cramping, bloody diarrhea, frequent bowel movements, and weight loss for a few months, eventually landing himself a stay in the hospital. After undergoing a full GI work-up including colonoscopy and biopsies, Chris was diagnosed with ulcerative colitis (UC). He was discharged from the hospital the day before my junior prom, and he still put on a tux and attended with a smile on his face. He had joked that he was going to make it to the prom even if he had to bring his IV pole with him.

For the next year, Chris was treated with a mix of immunosuppressant medications, steroids, and blood transfusions without any improvement.

I felt so out of control. Being a patient is tough, and being a caregiver is tough- both in very different ways.

That following spring, he was referred by his local GI specialist to Cleveland Clinic for another assessment. Seeing how severe his disease was even after aggressive conservative treatment, Cleveland recommended he undergo extensive surgery by having a total proctocolectomy with ileoanal anastomosis and creation of a J-pouch with a temporary diverting ileostomy to definitively treat his UC. Chris was only 18 years old.

Chris had that first operation, which was successful, and was thankfully able to have his ileostomy reversed 3 months later. He traveled the long 4 hours back home from Cleveland and made it just in time for my high school graduation. He healed well after that second surgery and was able to begin schooling for diesel mechanics while I went to college. We got engaged before I started grad school, and he got a job working as a diesel mechanic. We then got married at 22 and 23 years old, excited to be finishing up with school and moving back home to start our adult lives. Unfortunately, for the next couple of years, he continued to have a slow progression of the same symptoms he was experiencing before his J-pouch surgery, meaning more severe abdominal cramping, bloody diarrhea, very frequent bowel movements, and weight loss. In addition to these symptoms, he developed a new complication: perianal fistulas. These symptoms persisted, leading to another scope and biopsies confirming a new diagnosis of Crohn’s disease.

Following this new diagnosis we were referred back to Cleveland Clinic for more treatment, which included multiple new medications, steroids, and transfusions. While Chris’s J-pouch surgery would have been somewhat curative for ulcerative colitis, it made it harder to effectively manage his Crohn’s. Chris continued to have this active disease in a surgically constructed reservoir (i.e. the J-pouch) making his condition, and the accompanying complications, very difficult to treat. No matter what medications he tried or how high the dosage, his health continued to deteriorate.

Over the next several years, Chris’s body went on to form a complex network of fistulas, which required multiple procedures for seton placement. He had tried hyperbaric oxygen therapy to help with the healing of his external fistulas and wounds. Unfortunately this treatment did not work.

Our kids have also been involved in everything concerning Chris’s ostomy, particularly in the beginning when it was new.

He experienced constant leakage and stool draining from multiple holes. This had become a nuisance for Chris. He also developed strictures at the inlet of the J- pouch which then resulted in endless ileoscopies for dilation to prevent obstruction. He had spontaneous bleeding due to the inflamed and ulcerated state of his intestines. There had been instances where Chris would start hemorrhaging a few hours after having a scheduled ileoscopy, causing us to rush to the ER in the middle of the night for an emergency ileoscopy to stop the bleeding. This happened on a couple of different occasions, leading to more hospital admissions and ICU stays for low hemoglobin and low blood pressure.

I started to panic with every procedure, wondering if everything would go routinely or if we would be surprised with unexpected problems.

By this time, we were traveling to Cleveland every 2-3 months for scopes and appointments, which became extremely mentally and physically exhausting for both of us. While I realize I can never begin to understand the excruciating pain Chris was experiencing, I was sort of in my own kind of emotional pain in seeing the person I love the most in this world suffer from such an awful disease. While Chris remained totally collected and level headed with each added layer of dread, I was having a hard time sitting back and watching it all happen, knowing there was absolutely nothing I could do but hold his hand in this never-ending nightmare.

I felt so out of control. Being a patient is tough, and being a caregiver is tough- both in very different ways. Luckily, our bond as a couple was already very strong, and we became more solid with each piece of bad news. It had gotten to the point where we would almost laugh about things, because what else was there to do? If we didn’t laugh, we’d cry, and we could not start that.

Something we were blessed with (other than our awesome marriage and a side of humor) was the love of an extremely supportive family. It was very difficult to navigate Chris’s condition as it was, but we had also been going through this while starting a family of our own and both working full time. Not to mention Chris was working a manual labor job while enduring all this misery.. can you imagine? My parents, brother, and sister-in-law stepped in to take care of us, our two small kids, and two pups whenever we needed them. They were available at a moment’s notice whether it was to watch our kids while we were in Cleveland or to help with things around the house that we just physically couldn’t get around to doing. It truly took a village to make sure everything and everyone was cared for, and we can’t even begin to express the love and appreciation we have for them. They always showed up, and having that safety net of support was so valuable, especially during that time in our lives.

Since Chris had tried and failed countless conservative treatments over the course of several years, it was then recommended he have surgery for a diverting ileostomy so that his J-pouch and fistulas could have a chance to rest and heal. Chris was not exactly thrilled with the thought of having an ileostomy, but he had run out of treatment options without any promising new therapies on the horizon. Knowing that an ileostomy was going to be a potential end result based on previous discussions with his care team, Chris was able to process his thoughts and emotions surrounding the upcoming surgery. Honestly, I think having the time to mentally prepare for such a surgery was a huge benefit in how we were all able to cope moving forward.

He had the surgery for a diverting ileostomy in January of 2020, just before the pandemic. We had hoped that he would improve with this surgical intervention, but his fistulas continued throughout that following year. He also developed a pyoderma, which is a large and painful ulcer, on his abdomen right beside his new stoma. As a result of this and the relentless fistulas and strictures, his doctors recommended he have another surgery, a major surgery, to hopefully improve his quality of life. So, one year after receiving his diverting ileostomy, Chris had an abdominoperineal resection (APR) operation. In this long, 8 hour surgery, he had his J-pouch, anus, and perianal fistulas removed. This surgery also meant that his ileostomy would be permanent without the option of ever reversing it. It would be a part of him for the rest of his life.

Our focus is on making something positive out of something that could easily seem like a burden or embarrassment.

It has now been 3 years since his APR surgery and permanent ileostomy, and Chris is healthier than ever (Shout out to the wonderful surgeons and specialists at Cleveland Clinic! We’re so very thankful for you). While the initial thought of living with an ostomy seemed daunting for Chris and for me, we have come to really appreciate everything it’s done for us. Cleveland visits are now just once a year instead of every 3 months, and Chris is only on one medication for therapeutic management. His ostomy is functioning very well and hasn’t given him any problems. Chris can change his ostomy appliance so quickly that it doesn’t even seem like an inconvenience.

Our kids have also been involved in everything concerning Chris’s ostomy, particularly in the beginning when it was new. They have grown up seeing him do bag changes and have loved helping him get all of his supplies ready, and we welcome their questions with age appropriate answers. They were too young to remember how sick their dad was, but we don’t dwell on that part.

Our focus is on making something positive out of something that could easily seem like a burden or embarrassment. They are now 9 and 6 years old and are not ashamed that their dad wears a bag on his belly. When our daughter was in second grade, she actually took it upon herself to read “Awesome Ollie” to her class so she could educate her friends on what an ostomy is (this is an AMAZING kid friendly book we had used to prepare our kids for Chris’s ostomy surgery).

We were very impressed with her confidence and maturity to be able to share this information with a class full of kids. It was all her idea.

We are so grateful for this ostomy and the freedom it has given us. It’s like we have a new lease on life! Chris’s positive attitude throughout this entire ordeal has been such a blessing as well. He has never let his disease dictate his life, and there is so much to be said about that. Chris will gladly talk about his experiences if it means helping someone that is struggling with a similar situation, but he is not one to draw attention to himself. He never brings up how tough or terrible that part of his past was. He is such a wonderful example for our two kids, and I am proud that they will grow up seeing how great life can be despite difficult and less than optimal situations. Having an ostomy or a spouse with an ostomy is certainly an adjustment, but it doesn’t have to be a negative thing. It really is all in your mindset- just ask Chris! Even though Crohn’s is a disease that will never go away, the ostomy has been a life saver.

This is our new normal, and we are so blessed we get to experience it.

Where Should I Purchase my Ostomy Products?

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Quick Reference Guide for Ordering Supplies and Insurance Reimbursement

• Ostomy supplies are special products and may not be available at your local drugstore.
• Contact your insurance provider to understand what your insurance plan covers and pays for ostomy supplies, and where you can purchase and order supplies (usually through a supplier or retailer).
• Connect with a trusted retail supplier for help understanding your insurance allowables. With your permission, they can even contact your insurance on your behalf.
• Do you need help finding a supplier for your ostomy products? Call the me+ team to learn more about your options (1-800-422-8811).

Still not sure which ostomy products to buy?

With me+™, you never have to figure it out alone.

Navigating and maximizing your health insurance, finding a retailer, and feeling confident in your ostomy supply purchases may feel overwhelming. The me+ support team is available so that you don’t have to figure it out alone.

You have the right to choose the Retail Supplier that best meets YOUR needs.

Convatec works with a group of Preferred Retail Suppliers to provide you with excellent customer service and dependable supply delivery. Our Preferred Retail Suppliers will:

  • Help you manage product orders in line with your insurance
  • Facilitate your insurance billing process to ensure you get the proper reimbursement for Medicare, Medicaid or private insurance
  • Help you select the right products to suit your personal needs
  • Ship your products straight to your home in discreet packaging
  • Send you timely reorder reminders
  • Protect your privacy in accordance with U.S. HIPAA guidelines

To learn more about Preferred Retail Suppliers that work with your insurance, contact our me+ support team at 1-800-422-8811, cic@convatec.com or fill out this form.

My Ostomy Journey App

Fit is so important, especially when it comes to your body and the ostomy products you’re using.

We know that there is no one-size-fits-all product that works for everybody or every stoma. Download the My Ostomy Journey app to discover and sample products to fit your body by answering just a few simple questions. It’s free to download and works on either a phone or tablet. Download now to get started today!

The reimbursement information provided by Convatec is intended to provide general information relevant to coding and reimbursement of Convatec’s products only. Coverage and payment policies for the same insurer can vary from one region to another and may change from time to time because of ongoing changes in government and insurance industry rules and regulations. Therefore, please confirm HCPCS Codes with your local DME-MAC, private insurer, or Medicaid agency before processing claims. Convatec does not guarantee coverage or payment of its products listed herein.

Editor’s note: This blog is from one of our digital sponsors, Convatec. 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.

Ostomy Advocate Makes a Splash in Commercial

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Advertising students at BYU put a spotlight on ostomy awareness in creative commercial. 

The students could focus on anything they wanted for a final advertising project at Brigham Young University in Utah, but they knew they wanted it to be meaningful. After spending days thinking about a direction for the project Art Director Jane Reese and Copywriter Nate Nielson made a connection that they both had family members with ostomies. “We didn’t know until we were much older because they were very private about it and it felt like some kind of “secret”. That’s when we came up with the idea of “uncovering” your story,” says Nielson of the ad they conceived with the brand Hanes in mind.

Jane Reese has had eight family members with a colostomy. “A lot of people do not know what they are and we wanted to spread awareness and help do whatever we could,” Reese said during a break in the filming.

“We wanted the ad to highlight the emotion that our family members felt and at the same time illustrate that it’s normal to have medical conditions and no one should feel embarrassed or shamed by them,” Nielson says.

When Nate Hadlock, who is a member of UOAA’s Patient Advisory Board learned about the project he jumped at the opportunity to be involved.

“Ostomies often change a lot about a person’s life and how they view themselves, so seeing a beautiful video like this, along with the overwhelmingly positive response to it, can give ostomates new courage and confidence,” Hadlock believes.

The beautifully produced film project features Hadlock and several other ostomates living life to the fullest. Hadlock is seen in the commercial diving and gliding through the water swimming while wearing a Stealthbelt cover over his ostomy pouch. The image itself is powerful because of the hesitancy some ostomates may experience because of misinformation about swimming with an ostomy.

“I am extremely grateful that I was able to be a part of this project. The actual film day of making the ad was so much fun! The students could not have been more professional or treated me better. It was a special moment in my life! ” Hadlock says.

Hanes-Uncover Your Story from jane reese on Vimeo.

Nielson credits getting Hadlock on board with encouraging other people to be featured in the project. We wanted to show people of all backgrounds, because these conditions, can affect anybody,” Nielson says.

A voiceover of the Maya Angelou Poem ‘One Human Family’ is featured in the ad and reminds us that we are “more alike than we are unalike.”

“Though we all have different marks, scars, and stories, underneath we are all human. Everyone deserves to be proud of who they are,” Reese said of the project on a post on LinkedIn.

Hadlock feels that the message of the ad itself and the project as a whole can really help with ostomy awareness. “Ostomates need to see that they belong in this world as much as anyone else. If I had seen this ad 14 years ago, when I received my ileostomy, it would have changed my entire outlook on ostomy life and what I was going through,” he says.

In a YouTube video Hadlock shares a special behind-the-scenes look at the filming and more reflections on the project in the context of the often negative portrayals of ostomies on TV and in popular culture.

“Ostomies often change a lot about a person’s life and how they view themselves, so seeing a beautiful video like this, along with the overwhelmingly positive response to it, can give ostomates new courage and confidence,” Hadlock believes.

I have already been contacted by multiple people about how this “ad” has legitimately helped them, or somebody they know! Hopefully, ostomates who see this will realize, even if only a little bit more, that they are beautiful, capable, worthy of love, and definitely not alone.”

Other students who worked on the film came away with a new understanding of the ostomy community.

“I had my eyes opened to a whole other world- a world that so many around me live in daily, but that I had no idea of its existence. I was able to meet amazing people who shared with us their journey with an ostomy. If you are struggling with shame, embarrassment or any other thing because of your ostomy, know this: you are SO strong and you are capable of anything you put your mind to! “ says director Taylor Steadman.

Though the company Hanes was not involved in this project the ad has the look and feel of a full-scale professional production and is a credit to the talents of the student team.

“We wanted the ad to highlight the emotion that our family members felt and at the same time illustrate that it’s normal to have medical conditions and no one should feel embarrassed or shamed by them,” Nielson says.

“I’m very grateful for the opportunity to work on such an important project, and I hope that my cinematic choices made in this commercial helped capture the experiences and feelings of these incredible individuals,” said Spencer Nelson, Director of Photography.

Hadlock feels that helping with this project was a chance to do something uniquely meaningful. “I spent decades not wanting to ask for help or talk about the medical side of my life with anyone. However, becoming more active in this community has taught me so much and truly changed my life. I have also seen the tangible and intangible ways that my own advocacy can help others.”

That’s why I’m grateful to be involved in advocacy efforts with UOAA and why I plan to be a part of many more projects like this video in the future,” says Hadlock.

How to Stay Hydrated from a Marathoner with an Ostomy

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Ileostomate and athlete Collin Jarvis shares his recommendations for staying hydrated when you’re physically active. 

My name is Collin and I had ileostomy surgery in 2014 when I was on the Cross Country and Track & Field teams at the University of California – Berkeley. Staying hydrated was always an important aspect of my athletic performance, but after I had surgery, it became even more critical for me to drink enough fluids. Why? Because having an ileostomy can meaningfully reduce the body’s ability to get hydrated.1,2

Over the last decade I have continued to compete as an endurance athlete. Below are my top three tips for new ostomates looking to stay on top of their hydration:

Tip #1 – Make sure you are getting enough hydrating fluid throughout the day 

It can be challenging to keep up with fluid intake, especially when living with an ileostomy.3 I know this from personal experience!

Start by talking to your clinician about how much fluid you need on a daily basis. They will be able to point you to the best resources for your specific needs. General guidance is available online, but every body is unique. Keep in mind that the resources you come across online are going to be calculating fluid needs for a person who has all of their internal organs. So once you identify that baseline, ask your doctor if you need to increase your fluid intake above that level. In my case (i.e., as someone who is extremely active and has had their entire large intestine removed), I take in about 20% more fluids than what the average online calculator recommends.

Tip #2 – Be aware of when and how you are taking in your fluids 

Make sure to spread out the volume of liquid that you’re drinking as evenly as possible. In other words, take small and frequent sips throughout the entire day. This is important because our bodies are not perfectly efficient at absorbing the fluids that we put into them.

For example, you may have determined that you need around 100 ounces of liquids each day to meet your hydration needs. However, if you were to wake up in the morning and drink all 100 ounces right away, you would end up urinating most of that water out. In addition, drinking too much water at one time can dilute your body of the electrolytes it needs to properly absorb water which can exacerbate dehydration. Spreading out your fluid consumption evenly throughout the day is going to allow your body to work most effectively.

Keep reading on Hollister.com.

Hollister Incorporated is a proud sponsor of United Ostomy Associations of America and dedicated to delivering the highest standard of quality in ostomy care products. To learn more, visit www.hollister.com/ostomycare or call 1.888.808.7456.

 

References:
1. Justiniano, Carla F et al. “Readmissions With Dehydration After Ileostomy Creation: Rethinking Risk Factors.” Diseases of the colon and rectum vol. 61,11 (2018): 1297-1305.
2. Chen, Sophia Y et al. “Predicting the Risk of Readmission From Dehydration After Ileostomy Formation: The Dehydration Readmission After Ileostomy Prediction Score.” Diseases of the colon and rectum vol. 61,12 (2018): 1410-1417.
3. Absorption of Water and Electrolytes (colostate.edu) – http://www.vivo.colostate.edu/hbooks/pathphys/digestion/smallgut/absorb_water.html

 

Collin received compensation from Hollister Incorporated for his contribution to this article. The testimonials, statements, and opinions presented are applicable to the people depicted. These testimonials are representative of their experience, but the exact results and experience will be unique and individual to each person. Please make sure to consult with your healthcare professional for further guidance and instruction. The information provided herein is not medical advice and is not intended to substitute for the advice of your personal physician or other healthcare provider. 

Steve Hubbard’s Ostomy and Crohn’s Story

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I’m 75 years old and this is my 56th year of living with Crohn’s disease and an ileostomy.

I first started getting sick at 18 years old in 1967 right after graduating from high school. I was starting to get weak all the time, losing weight, couldn’t eat without getting sick and there was blood in my stool. My parents took me to the University of Stanford Medical Center.

The doctors there weren’t sure what was causing me to be so sick. I was down to around 65 lbs and so weak. They thought it was ulcerative colitis and they began treating it as such. When I wasn’t improving they called in a Colitis and Crohn’s specialist that was visiting the hospital from Germany. He diagnosed it as Crohn’s disease and started treatment right away by injecting a lot of steroids into me to help me gain the weight I needed for the first operation. Because I was so young they tried removing small sections of my colon at a time hoping they wouldn’t have to fit me with an ostomy.

The flange was made was solid rubber and it came with see-through plastic bags. The ostomy equipment nowadays is truly a godsend.

(Steve with his two daughters at his grandson’s wedding)

I had to stay in the hospital for around three months after each operation but after four major surgeries within two years time, I was finally fitted with my ostomy. After receiving my ostomy I was devastated because I was an athlete in school and didn’t know if I’d be ok to play sports or other things I loved to do again.

In the sixties having an ostomy was something kind of new and the only ostomy equipment we could find required a drive that was over two hours away. The flange was made was solid rubber and it came with see-through plastic bags. The ostomy equipment nowadays is truly a godsend.

By 1970, I had recuperated enough to get married. In 1972 we moved to San Diego after my first child was born. Then in 1973, I began to get very,very sick. With input from the WOCN specialist, they realized that they had to reconstruct and move my ileostomy to a different location on my lower belly.

After I woke up from the operation there was a priest next to my bed. He told me that he was giving me my Last Rites because I had passed away during the operation.

My mission has always been to never give up on anything and not use my ostomy as an excuse.

I recuperated and then my second child was born in 1974. After everything that I’ve lived through, here I am at 75 with two kids, two grandkids and two great-grandkids.

I played so many different sports with my ostomy including water skiing, kayaking and tennis. My mission has always been to never give up on anything and not use my ostomy as an excuse.

I hope this inspires people with an ostomy to never give up so you too can live a full life. I have no regrets. Ostomies are life-savers.