Tag Archive for: Coloplast

Are you a new ostomate? Or a soon-to-be ostomate? No matter how far you are in your ostomy journey, adapting to your new situation is an inevitable part of the process. Talking to others who have already been in your shoes can help you in adjusting to this time of your life. That’s why we asked Josh Nelson, the first active-duty U.S. Airforce Pilot living with an ileostomy, to share his story and his experience with his ostomy journey to give insights on how getting an ostomy can be just the beginning of an exciting new chapter.

Before surgery

What was your life like before your ostomy surgery?

I was diagnosed with ulcerative colitis in November of 2017. Throughout the next year after my diagnosis, I tried maximum medical therapies starting with oral medications, then biologics, and then transitioned to combination therapies with biologics. Unfortunately, my body just did not respond to the medications, and the disease just took over my life. If you want to talk about quality of life with ulcerative colitis before I had the surgery – I didn’t have one. I was 145lbs. I was having 18 to 20 bowel movements a day. I wouldn’t leave my house. I knew where every bathroom, rest stop, and gas station were from my house to where I work. Any time I did leave the house, the only thing on my mind was, “Where’s the bathroom?” in case I had that sudden urgency to go. My wife and daughters left me alone. They wouldn’t even ask if I would go with them anywhere because they just knew I did not want to go anywhere. I had no quality of life. I was a prisoner in my own home, and that’s no way to live your life.

How did you feel when you learned you would be having ostomy surgery? What questions of fears did you have?

I made the decision to have an ostomy surgery in November of 2018, and I had about three days’ notice before the surgery was going to take place. The staff at the University of Minnesota Medical Center, where I was inpatient for 30 days prior to surgery, did a great job of introducing what life with a stoma will be like. My questions were, “What is a stoma?” “What are the appliances that I’m going to have?” “How do I care for this thing, and how do I recover?” and  “How do I slowly adapt to having an ileostomy and then getting my life back?” The WOC nurses were great, because they would just simply start to explain, “Oh, here’s what a wafer or barrier looks like,” “Here’s what a pouch looks like,” “Here’s what some of the accessories are.” They also explained, whether it’s ileostomy, colostomy, or urostomy, people do go on to live fully functional lives.

I definitely had some goals, but I had no fears when it came to having the surgery. I mean, okay, fine – I had maybe a couple fears of having surgery, but the stoma itself I was not afraid of. The reason for that is because I was kind of at my lowest of lows, and I thought to myself, “How could this be any worse than what I’m dealing with right now?” I remember my surgeon and the medical staff told me that once the surgery was done, I would no longer have the pain, and each day moving forward I could start to focus on getting my life back.

What advice do you have for people who are considering ostomy surgery?

My advice to anybody who is considering having the surgery is to keep an open mind. It will take some work. You will need to adapt to what you have. That means taking care of yourself physically, mentally, and emotionally because it is a step-by-step process. It is a big transition, but I’ve done everything I could to make sure my quality of life has improved. I do not regret my decision one bit. I have my life back and that’s what I think is most important.

Coming home

What was your experience like right after your ostomy surgery?

I had about five days in the hospital after surgery, and during that time I was focused on recovery, protecting my abdomen, and getting my strength back. The nurses did a great job of explaining step by step what it takes to change out the pouch and care for my stoma. Before I left the hospital, I needed to make sure that my pain was under control, starting to move around, and understood how to change my appliance by myself.

What were your goals after your surgery?

I focused on transitioning to home life again, figuring out how to slowly heal my body, and how to start eating foods again.

My goals were:

  1. Getting healthy food into my body so that my body can recover.
  2. Finding out what schedule I should be on for changing out my appliance.
  3. Observing my stoma area regularly to keep my skin healthy, prevent skin breakdown, and make sure that my stoma was healing properly.

What would you tell someone else returning home from their surgery?

  • Don’t be afraid of touching the stoma because your stoma doesn’t have any nerve endings you can feel.
  • It’s extremely important to have a solid understanding of how to change your pouch and ask for products before you leave the hospital.
  • Your WOC nurse will probably explain that what works best for you in the hospital may change after you go home and are healing up. Initially, it might be multiple times a week that you’re changing your whole appliance out because your abdominal area might’ve been swollen from the surgery, and as it starts to reside some of those wafers might fit differently.
  • Everybody’s different. Everybody responds to products differently. Those first couple of weeks to a month is just trial and error to find out which products work best for you. After you figure out your change routine, your quality of life can start to improve. You no longer need to worry about having multiple leaks or having multiple issues with your appliance, and you can start to focus on making other goals for your life with an ostomy.
  • Just take it day by day. Don’t think of the end state right away because it’s going to take time to get there. Create small goals on a day-to-day basis and then think long term and how to get there. It’s definitely a marathon; it is not a sprint. You’re going to learn something new every single day until you get comfortable living your life and understanding how to handle your ostomy.

Managing life with an ostomy

How has your life changed now that you have an ostomy?

I’ve had my ileostomy for over three years, and I can honestly say I haven’t looked back or had any regrets whatsoever to surgically remove my colon. I try to tell people my worst day as an ileostomate far exceeds my best day ever living under the umbrella of Inflammatory Bowel Disease. I am no longer bound by any type of medication. I have no special diet, nor do I have any restrictions, and my quality of life is through the roof. I could not be happier, and I do not regret the decision one bit whatsoever. But how did I get there?

First off, I accepted the fact early on that I was going to have an ileostomy for the rest of my life because it was a decision I made for a better quality of life. After accepting it, I could focus on moving forward versus dwelling on the “how’s” and “why’s” with ulcerative colitis.

Secondly, after trying multiple different products, I came across a Coloplast product that worked really well for me. Once I found the product that worked well for me, that gave me the confidence to continue moving forward with my life and not have to worry about having leakage or skin issues. I have a couple routines, I’ll change my pouch no more than twice a week, but no less than once a week. I observe how the wear and tear of my wafer and appliance is working.

On top of that, I wanted to do everything that I could to make sure that I am living the best life that I can. I made some personal decisions, such as eating better and taking care of myself. I exercise quite a bit, and I try to eat fairly well. I try to focus on eating healthy foods so I can get the nutrition that my body needs.

What are some other tips you want to share about managing life with an ostomy?

It’s important to understand that this affects everybody differently, and it’s up to you to determine what works best for you to adapt, overcome, and live your life with any type of ostomy. I reached out to local support groups, and I think that’s extremely beneficial because you get connected with like-minded individuals. No matter whether they have a colostomy, ileostomy or urostomy, you can touch base with them and share your fears and concerns. A lot of these people have lived decades with their ostomy, and they’re proof to you that you probably can too. Finding that help and resource is extremely beneficial in helping you understand how to navigate life now that you have an ostomy and what’s out there for you.

 

I hope this helped you to understand what it was like to be diagnosed with the disease, have a permanent ileostomy, and how I live my life moving forward. Thank you! -Josh

 

 

*Josh has received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare professional about which product might be right for you.

At Coloplast, we strive to provide innovative solutions to support people with intimate healthcare needs and make their lives easier. Now, we’ve got an app for that!

If you’re looking for additional support during your ostomy journey, download MyOstomyLife by Coloplast® Care. The app is designed to help you be successful and build confidence in managing your ostomy by providing you with personalized tools and resources for your daily life with an ostomy.

With MyOstomyLife, you can create a digital stoma journal to track your pouching changes over time and easily download to share with your nurse, if requested. The app also provides you with educational resources offering reliable product and lifestyle advice, tips customized to your ostomy type, and inspirational videos from other ostomates like Josh.

You can also easily contact one of our Coloplast Care® Ostomy Advisors for product and lifestyle support within the app. We’re here to help!

Download MyOstomyLife for free on your smartphone or tablet today to get started!

Have any questions about the app? Visit Coloplast® Care at www.ostomy.coloplastcare.us or call

1-877-858-2656.

Information provided in the app and from Coloplast® Care is for educational purposes only. It is not intended to substitute for professional medical advice and should not be interpreted to contain treatment recommendations. You should rely on the healthcare professional who knows your individual history for personal medical advice and diagnosis.

Editor’s note: This article is from one of our digital sponsors, Coloplast. 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.

 

By Jeanine Gleba, UOAA Advocacy Manager

Too many people living with an ostomy have the worry that due to a need for frequent pouch changes or a high output stoma they will run out of their monthly Medicaid allowable ostomy supplies.  For the past year, UOAA has been supporting efforts, led by Coloplast, to expand Medicaid coverage of extended wear products in states with remaining access problems across the country. 

UOAA’s advocacy work has included:

  • Raising awareness on this important issue
  • Recruiting Affiliated Support Group leaders that are also WOC nurses and other local clinicians to provide clinical support and insight
  • Sending letters to state divisions of Medicaid services urging them to review the ostomy supply policy regarding coverage of ostomy supplies for HCPCS codes and quantities, specifically for extended wear products. 

As the voice and leading organization advocating for people living with an ostomy, we know first-hand how important access to ostomy supplies are for our patient population. We share the patient perspective with testimonials from advocates as well as explaining patients’ unique needs, such as those who are unable to achieve normal wear time with a standard barrier. Improved access to extended wear barriers will assist those who do not have an optimal fit or have a high-output stoma and go through more standard wear barriers and pouch changes. For these individuals extended wear products would be the prescribed solution. 

As a result of the collaboration between Coloplast, UOAA, State Home Medical Equipment (HME)/Durable Medical Equipment (DME) Associations, local clinicians and other advocates, we have expanded patient access to extended wear products in seven states as noted in the above map. This is excellent news for Medicaid beneficiaries living with an ostomy in these states! (Note: States that are grey/light blue on the map were not seen to have any state Medicaid extended wear access challenges.)

More advocacy efforts are underway in Alabama, Arkansas, Georgia, Louisiana, Maryland, Missouri, Ohio, and Wisconsin to remove the current barrier to access in those states. These states have Medicaid coverage that is much less than the current Medicare standards.

Sponsored by Coloplast

Have you ever experienced skin issues under your barrier? While peristomal skin conditions are all too common, many are easily treated – and better yet, avoided – with the right knowledge, product fit, and support. Finding the right ostomy barrier to fit your individual needs can be a challenge and may involve trying a few different barriers to fit your unique body and stoma. Getting a nice snug fit between your stoma and ostomy barrier is key to protecting your skin, and helps you reduce the risk of experiencing a frustrating cycle of stoma leakage and resulting skin issues.

If you see an ostomy nurse – great! Every person’s situation is unique, so if you’ve worked together on a solution, or if you’re currently experiencing skin issues that may require a specific intervention, I highly recommend working with your ostomy nurse to find the routine that works for you. That said, below are some general tips that are relevant to anyone with an ostomy.

As the saying goes, “An ounce of prevention is worth a pound of cure” – meaning it’s preferable to take precautions than to suffer the consequences later. This is also true in ostomy care. So, what can taking precautions for peristomal skin health look like? While it may not be realistic to prevent skin issues 100% of the time (after all, things happen!) finding a well-fitted and comfortable pouching system for your stoma and body profile is a great place to start in reducing your chances of skin issues. I always like to explain proper fit like trying on shoes at the store. When buying a new pair of shoes there are different criteria to follow. For example, is this the right size? Is it too big? Too small? Does my foot move around too much or not enough? Does it chafe when I bend too much or too fast? All these questions can also be asked when selecting the fit of your ostomy barrier.

The right barrier?

While you might sacrifice comfort for a number of reasons when you’re picking a new pair of shoes, your ostomy barrier should be treated more like your favorite go-to shoe no matter the occasion – going out on the town, running on the trails, or enjoying a quiet night in. If your shoe doesn’t fit and move with your foot just right, you may find that you have blisters on your heels from walking in them for too long. Similarly, if your barrier doesn’t move with your body while you sit, stretch, and go about your day, you may also find blisters or painful sores underneath your adhesive. That’s why the adhesive of your product is also important to consider when finding the right barrier for you – there are a lot of options out there! For instance, there are options for more stability around your stoma, more flexibility, special sizes and shapes to better fit your body’s contours, more resistance to breakdown from stoma output, and a host of other options that your WOC nurse can help you navigate. No matter which option you choose, an ostomy barrier should move comfortably with your body and shouldn’t limit your activities or range of motion.

Does this fit just right?

A great question! Let’s continue referencing trying on shoes. If the shoe is too large, your foot slides around and can create some friction in some places like your heel or your toes. Ouch! If the shoe is too small for your foot, it’s too tight and is quite uncomfortable, which can also create some friction and maybe some sores, much like when the shoe is too big. So, how do we relate this to an ostomy barrier? Let’s discuss! An ostomy barrier needs to be snug to the stoma and measured properly. If the barrier size is cut too big, the risk of stool or urine on the skin from the fit not being appropriate can create irritation or even sores. If the barrier is too tight, the proper seal may not be achieved, and the improper fit could lead to irritation on the skin or even to the stoma if the fit is far too tight. Just like you would use a previous shoe size as a reference or a foot-measuring size guide at the store, utilizing a stoma measuring guide to size up your stoma may be key to getting the right fitting barrier. You want to make sure that the measuring guide fits snug around the stoma, but not too tight, and just close enough to the stoma so the skin doesn’t show through.

For illustration purposes only. Performance and experience may vary. Talk to your healthcare professional about what may be right for you. Please refer to product ‘Instructions for Use’ for intended use and relevant safety information.

What is a solution?

Finding the right solution may take a few tries to find the right fitting barrier for your body type and your stoma size. When finding the right fit, the goal is to reduce any peristomal skin irritation or issues you could experience from improper sizing. Utilizing a size guide or template that you created is helpful with each pouch change to stay consistent. If the fit of your barrier changes, like after surgery when your stoma swelling goes down, creating a new template may help reduce potential peristomal complications.

Making a routine for fit

Don’t forget to do a body assessment when you perform a stoma assessment. What is a body assessment? Let’s reference shoes again. Just like when you try on a pair of shoes from many years ago that used to be your favorite to wear, you may find that when you try them on, they no longer fit, and it’s time to go up a shoe size. Similarly, it’s important to observe your stoma and skin over time to make sure that the barrier you’re using still fits right. All bodies change over time, especially our skin. Fluctuations in weight and differences in skin texture may impact the fit of your barrier. One way to stay on top of your body assessments is to do an online check. Coloplast’s BodyCheck tool is a simple way to check in on your fit and assess your body and stoma profile. If you feel it has been a while since the last time you checked in with your WOC nurse for a barrier fitting, I’d certainly recommend scheduling an appointment, too. Current guidelines recommend an annual checkup with a WOC nurse, and this is a great way to get back on track with your fit.

 

Mackenzie Bauhs, CWOCN, is currently an employee and Ostomy Clinical Consultant for Coloplast. She obtained her bachelor’s degree at Carroll University in Wisconsin. She has worked with ostomy patients in the post-operative period at the University of Wisconsin Hospital and Clinics in Madison, Wisconsin as well as outpatient ostomy care at Rush University Medical Center in Chicago, Illinois.

The materials and resources presented are intended to be an educational resource and presented for general information purposes only. They are not intended to constitute medical or business advice or in any way replace the independent medical judgment of a trained and licensed physician with respect to any patient needs or circumstances. The information presented or discussed may not be representative of all patient outcomes. Each person’s situation is unique, and risks, outcomes, experience, and results may vary. Please see complete product instructions for use, including all product indications, contraindications, precautions, warnings, and adverse events.

Editor’s note: This article is from one of our digital sponsors, Coloplast. 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.

What is more important: fit, flexibility, stretch capability, or adhesion?

If you cannot decide, or there are two or more that are just as important, you are not wrong. Why not have all in one for your barrier selection? You can have fit, flexibility, stretch capability, and adhesion in one pouching system!

Fit

When selecting a barrier, many considerations can come into play. When considering fit, proper application and sizing is important to help reduce leakage and create a seal around the stoma. Utilizing a stoma measuring guide or template with each pouch change is beneficial to help obtain the proper fit. Stoma size can change after surgery, so measuring is key.  Deciding between a precut or a cut-to-fit barrier is also important to consider, as it depends on which option provides the best fit to your body.

Flexibility

A flexible barrier will move, bend, and stretch with your body allowing you to be comfortable as you go about your daily activities. Flexibility with stability helps achieve a seal around the stoma along with the proper fit. In day-to-day movements like, getting in and out of your car, vacuuming, getting a spice off the top shelf, or even a sport you enjoy playing, flexibility is important to move with your body.

Stretch capability

Can you have flexibility without stretch capability and vice versa? What if these two worked hand in hand to create the best seal and optimal comfort to help you with your daily activities? Think back to reaching to get a spice off the top shelf in the kitchen. You need to have flexibility in the barrier to obtain the stretch, but then when back in a normal standing position the ability for the barrier to go back to the original shape after completing the stretch—how is that obtained? Teamwork!

Adhesion

Lastly the ability for the barrier to have adhesion to the skin. This can be a challenge outside of the barrier itself. For example, what if there is a small area of irritation, moisture, or the landscape is not perfectly flat (which is very common)? The adhesion is important to provide the tact to the skin so that the barrier has all the capabilities: fit, flexibility and stretch! Good adhesive security is obtained by gentle warmth using the body heat of your hands, and a nice gentle pressure with application from the inside (near the stoma) all the way to the edges of the barrier. This helps activate the adhesive into those small nooks and crannies that our skin has even if we can’t see them with the naked eye.

Essentially, there are many questions that may come up when deciding on the best barrier fit for you. Let’s go back to the original question that was posed: What is more important: fit, flexibility, stretch capability, or adhesion? The answer can be any of the above, and it all depends on your own lifestyle and personal needs. Things to keep in mind when you are considering your barrier options are, “Does this barrier have a good fit to my body?”, “Does the barrier allow me to stretch without compromising the seal?”, and lastly, “Does this barrier give me the security to enjoy my activities?”. There are options available for many body types and challenges. Reach out to your WOC nurse so they can help you answer the questions that are important to you!

 

Mackenzie Bauhs, CWOCN, is currently an employee and Ostomy Clinical Consultant for Coloplast. She obtained her bachelor’s degree at Carroll University in Wisconsin. She has worked with ostomy patients in the post-operative period at the University of Wisconsin Hospital and Clinics in Madison, Wisconsin as well as outpatient ostomy care at Rush University Medical Center in Chicago, Illinois.

The materials and resources presented are intended to be an educational resource and presented for general information purposes only. They are not intended to constitute medical or business advice or in any way replace the independent medical judgment of a trained and licensed physician with respect to any patient needs or circumstances. The information presented or discussed may not be representative of all patient outcomes. Each person’s situation is unique, and risks, outcomes, experiences, and results may vary. Please see complete product instructions for use, including all product indications, contraindications, precautions, warnings, and adverse events.

 

Editor’s note: This article is from one of our digital sponsors, Coloplast. 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.

 

 

Have you ever wondered what you should be doing to fill your time as you recover from ostomy surgery?

After my first surgery at the age of 17, and even after my third surgery at the age of 23, I spent most of my time lounging around my parents’ house, waiting for the day that I would be cleared by my surgeon to return to “normal” activity. My parents would coax me out of the house to go on one walk a day, but I spent almost all of my time watching television and YouTube videos and sleeping.

Fast forward to age 30. At age 30, I ended up having my sixth major abdominal surgery. And by this point in time, I had been working as an Occupational Therapist (OT) in a hospital setting for six years. For six years, I had been helping other individuals recover and rehabilitate from major illness and injury. I had also spent years recreating in the mountains and enjoying a highly active lifestyle. So when I found out that I needed a stoma revision, I knew that my recovery would look very different from my previous surgeries. I knew that in order to improve my recovery time, decrease my risk for complications, and get back to the mountains, I had to put in more work.

For those who are less familiar with the rehabilitation professions, “Occupational Therapists enable people of all ages to live life to its fullest by helping them promote health, and prevent – or live better with – injury, illness, or disability” [1] and “Physical therapists [PTs] are movement experts who improve quality of life through prescribed exercise, hands-on care, and patient education” [2]. Although I’m an OT, seeking out my own rehab professional to work with was the best thing I could have done.

I already knew a lot of the basics of how to rehab myself, but having someone else who I would be accountable to and who I could bounce ideas off of was a bonus. I knew from my training as an OT that one 30-min therapy session prior to abdominal surgery, reduces the risk of complications by 50% [3]. So the first thing I did was set up an appointment with a pelvic health therapist prior to my surgery. I was able to find a local pelvic health PT to work with, although, both OTs and PTs may specialize in pelvic health. I sought out a pelvic health therapist because of her specialty training in digestive and urinary systems and the interaction between the abdomen and pelvic floor. In my time working as an OT, and in my time spent working with many PTs, I’ve learned that there are fundamental areas that ostomates should be targeting after surgery to improve their outcomes. Working with a therapist in the following areas can be quite beneficial:

Therapeutic Breathwork. Breath is necessary for life. If you aren’t breathing properly, you certainly won’t be getting back up on your feet and recovering from surgery any time soon. Breathing properly can also help decrease the pressure in your abdomen (i.e. intra-abdominal pressure) which decreases your risk for parastomal hernia and other complications.

Mobility Training. Focusing on walking in a strategic manner following surgery can also set you up for success in the long run. Not only is walking good for building up your endurance again, but it is a great way to begin engaging your core in a gentle manner.

Core Recovery. After surgery, your abdomen can be very tender. But it’s important to begin exercising in order to coordinate your abdominal muscles again and gain strength so that you will be less likely to injure yourself in the future.

Functional Daily Activities. Finally, as you go about your day-to-day routine, some tasks will feel more difficult than they used to. For example, bending to put on your socks can be painful and can pull at your incision. Working with a therapist on strategies to increase your independence and return to the daily activities you enjoy is invaluable.

I’m lucky that I decided to become an Occupational Therapist. It has enabled me to empower myself with knowledge about the human body and recovery from surgery. But you don’t have to be a therapist to have a positive recovery experience and lead a fulfilling life. If you’re feeling stuck, seek out a rehabilitation professional. You deserve quality care and support to feel confident and strong after surgery.

Wishing you well on your ostomy journey,

Charlotte

As you start your journey to recovery, you’ll experience that life after ostomy surgery is a new reality. No matter how far after surgery you are, you will need to adapt to your condition and cope with your new situation. If you’re looking for additional support during your ostomy journey, consider enrolling in Coloplast’s free online support program, Coloplast® Care! It is a personal product support program designed in collaboration with nurses to provide you with individualized product support and lifestyle education, and product access coordination. Coloplast Care is available when you need it – whether it is through our online educational resources offering reliable product and lifestyle advice, news and tips customized for your situation, or over the phone with our team of dedicated Ostomy Advisors. We’re here to help!

Visit us at www.ostomy.coloplastcare.us or call 1-877-858-2656.

Information from Coloplast® Care is for educational purposes only. It is not intended to substitute for professional medical advice and should not be interpreted to contain treatment recommendations.

About the author:

Charlotte Foley, MS OTR/L, CBIS, received her Occupational Therapy degree at Boston University and began her career in the adult Inpatient Rehabilitation setting. She now works in the adult Acute Care setting at Providence Alaska Medical Center in Anchorage, Alaska. Because of her own personal and professional experience, Charlotte founded and runs her own education and consulting business, Restorative Ostomy Solutions, to empower individuals to feel strong and confident as they recover from ostomy surgery.

Charlotte has received compensation from Coloplast to provide this information.

Editor’s note: This article is from one of our digital sponsors, Coloplast. 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.

 

References

[1] AOTA (2021). What is Occupational Therapy? Retrieved from

https://www.aota.org/conference-events/otmonth/what-is-ot.aspx.

[2] APTA (2021). What Physical Therapists do? Retrieved from

https://www.apta.org/your-career/careers-in-physical-therapy/becoming-a-pt.

[3] Boden, I., Skinner, E., Browning, L., Reeve, J., Anderson, L., Hill, C., Robertson, I., Story,

D., & Denehy, L. (2018). Preoperative physiotherapy for the prevention of respiratory complications after upper abdominal surgery: pragmatic, double blinded, multicentre randomised controlled trial. British Medical Journal, 360:j5916. http://dx.doi.org/10.1136/bmj.j5916

When Paige started seventh grade, she was excited to meet new friends and begin new classes, like most 12-year olds! Her life quickly changed when she began to experience medical complications. At the beginning of seventh grade, Paige started having to make frequent visits to the bathroom, as much as 12 times a day. Paige and her family sought out answers and treatment at a nearby hospital where the doctors found a parasite in her colon called cryptosporidium, which causes diarrheal disease.

Due to her Ulcerative Colitis diagnosis at the age of 10, the parasite was life-changing for Paige, as it destroyed her colon. “They told me that with how bad my colon was, I should have died.”

Paige went through a variety of treatments to save her colon. This started with receiving Remicade as an IV treatment…Paige’s body did not respond well. The next step in treatment was to try a j-pouch, again her body did not respond well to this treatment, but a j-pouch was tried one more time with the same outcome. After her two failed j-pouch operations, Paige continued to be sick and only had 8 feet of intestines left. Her mother, Cristy, discussed with her doctors to do something different since the j-pouch was not working, and that’s when Paige had surgery to receive a permanent ileostomy. After months of hospital stays, her life was saved with her ostomy. Paige’s journey doesn’t stop there. After being discharged from the hospital, Paige had trouble finding a pouching system that helped provide a secure fit to her body.

“We left the hospital with an ostomy pouching system that had a 12-hour wear time, at best,” says Cristy. “I went mama mode and searched for a better product. Luckily, we found a great gal on the other end of the Coloplast® Care phone line who answered all our questions and gave us just that!,” she said.
Once Paige found a pouching system that worked for her and started to gain her confidence back, she saw the need to create more resources for teenagers living with an ostomy, because there wasn’t much out there!

“I play volleyball, I go to camps that are just like me (Youth Rally), I attend high school dances, I go on dates…I do it all! Coloplast helped me find the best fit for my body. They may be able to help you too. I have used Coloplast for 4 years now and I still feel confident in my pouch.”
According to Paige, living with her ostomy is not always easy. Along with the physical challenges, there are mental challenges from her experiences as well. Paige encourages anyone experiencing mental challenges to speak up and find someone to talk with.

To help other teenagers living with an ostomy, Paige and Cristy contacted Coloplast, and they partnered together to create a care guide specifically for teenagers!

Throughout this booklet, Paige hopes to share the tips and tricks that worked for her as well and provide answers to common questions.

Download a free copy of this teen resource here: https://www.coloplast.us/landing-pages/teen-booklet/

*Paige is a Coloplast product user who has received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare provider about whether this product is right for you.

Editor’s note: This article is from one of our digital sponsors, Coloplast. 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.

The ostomy community is understandably very concerned about how the COVID-19 outbreak is affecting their daily lives, health, support networks, and access to ostomy supplies.

In this time of great uncertainty, UOAA recommends all individuals consult with their own primary care physicians with questions concerning their risk factor or if they exhibit any symptoms. Please follow the Center for Disease Control (CDC) website for actual up to date information. We recognize that many people living with an ostomy or continent diversion are older people and those with chronic disease and are therefore at higher risk of developing serious illness. Please also see CDC guidelines for people at risk

UOAA is also hearing from many Affiliated Support Groups who have prudently decided to cancel their upcoming meetings. Members should expect that their meetings will be canceled for the foreseeable future. Affiliated Support Groups are each independently run and members should contact their local leaders if they have any questions about their meetings. Community guidelines are also available from the CDC to assist leaders in deciding steps they should take to address public health concerns.  

UOAA reached out to the major ostomy manufacturers to see if the outbreak is currently impacting their production or supply chain. As of March 4, 2020 none of the manufacturers reported any issues in their operations as a result of the COVID-19 outbreak. Read our previous blog post for statements from individual manufacturers on this topic. Check with your distributor to see if there are any shipping delays due to increased demand of all goods at this time. 

If you develop a fever, cough and have difficulty breathing always contact your healthcare provider. They will determine if you are a candidate for a COVID-19 test. Medicare and private insurance should cover a test to see if you have coronavirus if requested from a physician. Additionally, Medicare is offering telemedicine options so people can stay home as much as possible during this crisis. Contact your private insurer to discover any additional benefits they may be offering at this time. For frequently asked questions and facts about this virus follow updates from the CDC on the latest COVID-19 guidelines.

UOAA will update this blog post with any information that may affect our community. 

Updated: 4/10/20

The coronavirus is spreading around the world and some in the ostomy community are concerned if it will affect their access to ostomy supplies. UOAA reached out to the major ostomy manufacturers to see if the outbreak is currently impacting their production or supply chain. As of April 3, 2020 none of the manufacturers are currently reporting any issues in their operations as a result of the COVID-19 outbreak.

As with any natural disaster personal preparation is key and there are many steps you can take now to be prepared for any unexpected impact in your life or community. For those who become ill or have a compromised immune system, always contact your physician with any concerns. If you are on Medicare Part B (Medical Insurance) and become ill it covers a test to see if you have Coronavirus. For frequently asked questions and facts about this virus follow updates from the CDC on the latest COVID-19 guidelines.

These are the latest statements and information from leading ostomy product companies, they will be updated as needed.

11 Health

At 11 Health we understand that the challenges of COVID-19 extend beyond the needs of patients who are suffering from the virus. Our ostomy patients tell us that hospitals are cancelling their appointments and people are struggling to access their doctors and nurses; a big issue for people suffering from a chronic illness. That’s why we have launched our free 12 week remote patient monitoring Alfred SmartCare program to support ostomates using our patient coaches, tele-health nurses and dedicated app to provide a pro-active and preventative wellness program. We encourage you to visit us @ www.11health.com

With regard to access to supplies, we continue to safely manufacture and distribute. We currently have stocks in house of all Alfred SmartCare products and moving forward we do not anticipate any issues with smartbag supply.

 Hollister Incorporated Statement on the 2019 Novel Coronavirus

In response to the global health emergency concerning the spread of the 2019 Novel Coronavirus (COVID-19), Hollister Incorporated has taken steps to protect our Associates, and seeks to ensure that our customers experience no disruption to the supply of their products. Hollister is diligently cooperating with our suppliers across the globe to identify any potential impacts the coronavirus (COVID-19) may have on our suppliers as well as our own operations.
At this time, based on the information received to date, we do not anticipate an impact to our ability to supply or to our other business operations.
Hollister Incorporated continues to monitor this public health threat and considers the guidance provided by the World Health Organization, the US and European Centers for Disease Control and other sources in managing our overall ongoing response to this public health emergency.
We reassure you that we are taking appropriate measures to help ensure our customers, our Associates and our operations are cared for during this critical time. We continue to monitor the situation closely.
For additional inquiries, please contact corporate.communications@hollister.com.

3/24/20 Secure Start Services A Message from the Hollister Incorporated Family – COVID-19

Coloplast Statement

4/3/20

We hope you are doing well. We realize at this time, many of you may be dealing with lots of changes in your personal or family lives related to the COVID-19 outbreak. How can Coloplast® Care help you in this time of uncertainty? We aim to be the connection that builds your confidence in living with your intimate healthcare condition.
At this time, more than ever, assistance from Coloplast® Care may be more crucial as people stay home. The Coloplast Care team is still here for you, and we have extended our hours to six days a week to better support you.
Our Care Advisors are available by phone from 7 am to 7 pm Central Time, Monday – Friday and additionally 9 am to 1 pm Central Time on Saturdays
Here’s how to reach the Ostomy team

Call: 1-877-858-2656
E-mail: Care-us@Coloplast.com

We are here to support you with wellness information, product access information, and ostomy product samples. We also have some great educational resources for you available online, 24 x 7.

We have a number of educational resources available for you at our website, and encourage you to visit our resources: www.ostomy.coloplastcare.us

Concerns about access to supplies

We continue to safely manufacture and distribute our products. Currently, the COVID-19 outbreak is not impacting our ability to supply our ostomy and continence products, so we encourage you to continue to order your supplies as you regularly would.

At a time when many are concerned about receiving their medical supplies, Care Advisors can help coordinate product access by helping match you with product dealers who meet your insurance needs. If you are having trouble reaching your dealer or getting your medical supplies, please call us and we will ensure that you can continue to receive the products you need.

To read more about the initiatives that we have put in place globally and for updates related to the coronavirus, please visit our website. Let Coloplast Care be your reliable source of information for your intimate healthcare needs.

Kind regards,
Your Coloplast® team

ConvaTec Statement

At ConvaTec, we understand that the COVID-19 (Coronavirus) situation is impacting everyone. We’re doing our part to be socially responsible while still ensuring that our customers can contact us and receive the support they need.

To keep employees and customers safe, we’ve adjusted our work arrangements, including work from home where possible, to maintain social distancing.  As always, our me+ team of Wound, Ostomy and Continence Certified Nurses and product specialists are available, by phone or email, to answer any questions or concerns you may have.

If you have any questions or concerns, please contact our ConvaTec me+™ Support Team at 1-800-422-8811 (M-F, 8:30AM – 7:00 PM Eastern Time) or email cic@convatec.com.

ConvaTec Ostomy Care Global Impact
Our Ostomy products, whether produced by ConvaTec or in partnership with outsourced partners, are not manufactured in countries with high levels of reported cases of Coronavirus, this includes China. The situation is changing daily and therefore, ConvaTec has a dedicated team tasked with continually reviewing the situation, maintaining close collaboration with our suppliers and logistics partners, and communicating changes as the situation evolves.

Nu-Hope Statement

It is our recommendation that ostomates keep at least 1 box of spare pouches at all times. (This recommendation is independent of the COVID-19 outbreak). We do not recommend stockpiling supplies as this will stress the supply chain and likely cause delays and disruptions to your regular orders. Nu-Hope offers ½ boxes for sale through certain dealers.

Safe n Simple Statement

Safe n Simple would like to assure all of the ostomy community that we are well stocked on supplies and do not foresee any issues or concerns with being able to provide products needed during the Coronavirus outbreak.

“Bottom line, I have my life back and I’m only looking forward.” – Josh Nelson

Ostomies are Life-Savers – and Coloplast is proud to be a part of helping spread the word on Saturday, October 5th for Ostomy Awareness Day!

For many people, it’s not often that intimate things – like an ostomy – are discussed openly … but at Coloplast, our passion centers around hearing real-life stories from people with intimate healthcare needs. As we listen, we strive to uncover unmet needs and respond with innovative product solutions to make life easier for people living with an ostomy. We bring this passion to listen, respond, and make life easier to work every day – and we’re proud to stand with the ostomy community in raising awareness of the amazing resilience of people living with an ostomy.

Do you live in the Twin Cities? Lace up your shoes and join our team for the Virtual Run for Resilience!

You, your family, friends, and pets are invited to join Coloplast employees, ostomates in the area, and their families for a “virtual 5K” run/walk/roll along the Mississippi River in Minneapolis, MN – starting at our US corporate office. Attendees should plan to arrive by 10:00 AM to gear up for the race. There will be groups of people both running and walking, so you can move at the pace at which you are most comfortable!

Before the run/walk/roll begins, we will have two guest speakers. Kiza Olson and Josh Nelson, who both have ostomies, will tell their stories, including how an ostomy was a lifesaver for them. Watch this short video from Josh* encouraging you to join us:

This event is open to anyone who wants to help support ostomy awareness. Looking for more information? Check out our Facebook event page. Feel free to join our team and sign up for the event at no cost on the Coloplast team page.

To help you prepare for the run/walk, brush up on some tips on sports and exercise with an ostomy on our Coloplast® Care site.

Don’t live in Minneapolis?

Visit the Coloplast booth at one of the 8 Run for Resilience events nationwide!

If you plan to participate at one of the run/walks held nationwide, make sure to stop by the Coloplast table and meet our local representative! We’ll be handing out free temporary tattoos so you can wear the “Ostomies Are Life-Savers” slogan proudly on your sleeve.

We’re proud to be a part of the effort to build awareness that ostomies are life-savers – and a key contributor to really feeling like you can “have your life back” is finding the right product fit. As bodies change over time – aging, gaining or losing weight, getting new scars or a hernia – it’s important to check that you still have the right fit. That’s why we developed BodyCheck: in 8 easy steps, this online tool will identify the best combination of product(s) to provide a secure fit to your individual body profile. At our booth, we’ll have information on using BodyCheck to ensure you still have a secure fit – and a free magnet reminding you to check your body as things change.

Take a selfie!

If you get the temporary tattoo or magnet –  we’d love to see how you display them! Snap a picture and share with us on social media with the hashtags #OstomyAwarenessDay #OstomiesAreLifeSavers  #RunforResilience

 

*Josh is a SenSura Mio user who has received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare provider about whether this product is right for you.

Editor’s Note: this blog post was provided by Coloplast Corp, a Gold Sponsor of UOAA’s annual Run for Resilience Ostomy 5K events that benefit UOAA, a 501(c)(3) nonprofit organization

Many people with an ostomy find that once their stoma has settled and they are in a normal routine, they are able to live their life with few ostomy related issues. However, as you are adjusting to life with a stoma, you may experience some problems that are quite common. We have put together a list of some common ostomy related problems and solutions so you can be well prepared if and when they occur.

Many ostomates continue to live with stoma issues and problems unaware that there are solutions available to them. Learning how to care for your stoma and understanding these common problems will help you to find normalcy and routine after your surgery. Access to this information will help you to take charge of your life and increase your confidence.

Before we get into the common problems and solutions, it might be helpful to mention proper cleaning and application. With proper care of your stoma and the skin around your stoma you may reduce the risk of the below problems. Proper care begins with proper application. Make sure your barrier hole fits tightly around your stoma, and that the skin is clean and dry for application. When removing your barrier, it is important to lift it gently off of your skin while using your other hand to press down on your skin. Ripping the adhesive off quickly can cause redness and irritation that can lead to other problems. To clean your stoma and the area around it, use a soft cloth or towel and warm water. Be gentle when cleaning, as aggressive rubbing or wiping can irritate the skin. It is not necessary to use soap, as soaps can leave residue and irritate the skin. When changing your pouching system, it can be helpful to use a small hand-held mirror to see all around it. If there is leakage, use the mirror to check all areas of your barrier and stoma for gaps and creases. Once you’ve identified the problem area, it will be easier to address.

Leakage

Two of the main factors of leakage problems are: how you prepare your skin before you apply your barrier, and your barrier size. You should make sure to clean and dry your skin completely before applying a new pouching system. If you are having trouble getting the area dry, an absorbing powder might be a good solution for you. If your pouch gets too heavy and tends to pull away from your skin, or if your barrier does not fit correctly, a protective seal between your stoma and the barrier can prevent leakage and seal the pouching system.

Skin Problems

The skin that surrounds your stoma is called peristomal skin­—it should be smooth and healthy and look like the rest of your skin. If it is red or irritated, you should address the problem immediately. If you have problems with adhesive residue or are unable to get the area completely clean before application, you may want to try to use an adhesive remover.

Odor

New sound and smells coming from your pouching system can be embarrassing and induce anxiety. Many new pouching systems have filters to neutralize the odors caused by gasses in your pouch. What you eat can have an effect on gasses you produce. It is recommended to avoid carbonated beverages and limit high-fiber foods. If the filter in your pouch gets blocked, you may experience ballooning. Ballooning happens when air from your stoma cannot escape the bag and it fills up like a balloon. Depending on the type of system you are using, you may want to release air from it throughout the day. If the odor is strong when you are changing your pouch, you may want to try a lubricating deodorant which can help mask, the smells during a pouch change. Simply place 6-10 drops into the pouch when you change and empty it and spread it around inside the pouch by rubbing the inner sides together, avoiding the filter. This helps the output to make its way more easily to the bottom of the pouch.

Should you need more assistance dealing with a problem you are having with your ostomy, consult your healthcare professional. For more assistance and personalized support, check out Coloplast® Care, which is an ongoing comprehensive support program that gives people with an ostomy support throughout their life.

Editor’s note: This article is from one of our digital sponsors, Coloplast. 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.