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.

Embracing Life After Surgery 

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Before cancer came into my life, I was a very social person. My various professional ventures along with the diverse group of friends kept me on the go. Even though I dealt with anxiety it was mild enough that I was still a social butterfly.  

I was diagnosed with anal cancer on May 5, 2015, that’s Cinco de Mayo. We had the day planned, going to the groceries for Taco & Nacho Day. Watch mindless shows and spend the day together.  

Much like others like me, your caregiver becomes your world.

We were three years into our relationship, and this was not on our Bingo card of relationships… Or was it? That whole summer was spent in bed or on the couch sleeping. I couldn’t stand a lot of smells or people- so not much socializing.  

Much like others like me, your caregiver becomes your world. You are dependent on them for food, medical needs, and conversation. Chrisitan, my boyfriend, was all that and more. He was also my punching bag and took all my frustration and honestly, I don’t know where he put that energy.

It made our relationship stronger; it tested the relationship and us. He also helped me get back into the real world easier although it takes the caregiver longer to step out of his role. I don’t know if they ever leave completely.  

It took almost six months to decide or be convinced for the ostomy surgery. I had done hyperbaric chamber treatment, and we were hoping things would heal. We expected a miracle. My sphincter would not grow back.  

Diapers were not very convenient for work. I traveled quite a bit and changing on the go was a pain in the butt. Those changing tables in the bathroom don’t hold an adult! I finally picked a date for the surgery.  

My surgery was scheduled for April 1, 2016. If that date sounds familiar it’s because it’s April Fool’s Day. Yes, my surgery was a joke, and I wasn’t laughing. I didn’t have a mentor, buddy or a nurse to tell me what to do. My brain was in constant conflict between I don’t want anyone to see me, and I need to get back out in front of people. I wanted to act, public speak, or at best go shopping and try on clothes.

Go through the feelings and emotions. I denied that anything happened, got very angry, negotiated with my higher power, still dealt with a bit of depression, and I’ve accepted that this is my reality. It has allowed me to move forward faster.  

When I first started to go out in public, I would use surgical tape and bind my bag down. I was sure that if I taped it hard enough it would go away. I felt so self-conscious that I would wear shirts one size larger.

Then one day, in a support group, I heard about wraps. I had to look up this miracle device that would give me back my manly figure. As if they were security secrets that you had to find through a scavenger hunt.

I felt confident, strong, and back to me… Kinda. I felt like a piggy bank and that everyone was looking at my belly. Finally, Tommy the Ostomy and I had worked out the kinks, made peace, and became frenemies… Kinda.

Eight years later I am out more, I travel more, and still panic a bit. Tommy still manages to surprise me from time to time. Almost every day I put on my belly-bra to keep things tight and snug, and I watch my weight so things don’t pop out.

I still get panic attacks, I still think everyone is looking at me, and I still think I’ll wake up and It’ll be gone. Except I have more self-esteem, I share my story, and I look great in a tight shirt and jeans!

If I could share any words of wisdom if a new ostomate it would be go hunting online for patient stories and trusted information like this website. Find a support group and ask as many questions as pop in your head. Some things you’ll learn on your own but we’re here to help.

Another thing, go through the feelings and emotions. I denied that anything happened, got very angry, negotiated with my higher power, still dealt with a bit of depression, and I’ve accepted that this is my reality. It has allowed me to move forward faster.  

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. 

Do you speak stoma?

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A New Guide aims to help you find the right words to talk about your ostomy

By Joga Ivatury, M.D., MHA

The Speaking Stoma Guide is the first health communication guide for people with ostomies. This work was coproduced through collaboration with ostomates worldwide, UOAA, clinical experts, and health communication experts. This guide is freely available here on UOAA’s website, encompassing 11 communication topics areas including managing pouch leaks, communicating with friends and family, and intimacy.

This work has been inspired by our experience working with ostomates. We recognize that talking about your ostomy will not always be easy. We created the Speaking Stoma Guide to help. We hope this guide gives you an idea of things you could say if you are ever in similar situations and ways to manage challenging social situations that may arise. Each section has a big topic and has different situations that you may experience. In the next section, we will provide a snapshot of situations inspired by real people with ostomies.

Leaks
In this section, we have suggestions for what you might say to help manage the situation based on how much you want to disclose about having an ostomy. These phrases were produced directly from things ostomates told us. For people who did not want to disclose anything about having an ostomy (low disclosure), a person may say, “Can you show me how to get to the bathroom?” For high disclosure, a person may say, “Can you show me how to get to the restroom? My ostomy pouch has leaked and I need to clean up. Would you be able to find me an extra set of clothes? I really appreciate it!” Each section has several suggestions like this.

Talking About Food
With an ostomy, some people have limitations on the food that they can eat. Some ostomates expressed embarrassment when they couldn’t eat the same food everyone else is eating. It’s hard to say “no” whenever someone offers you food. One participant noted that he once told a host on behalf of his wife: “Please don’t take offense. She doesn’t eat these things. It’s not your cooking.” For higher disclosure, a person may say “Thank you so much for inviting me. After my surgery I’m still figuring out the foods that make me feel best, so I ate before I came. Everything looks delicious!” In general, there are many people with and without ostomies that have dietary restrictions.

Public Restrooms
What do you do when you need to use a public restroom to care for your ostomy and there is a long line! For low disclosure, you may consider saying: “Excuse me, I have an emergency and need to get to a restroom right now.” This does not reveal anything to strangers except the urgent need. For higher disclosure, you may reveal the presence of your ostomy and the rapid need for its care. People in line can be helpful too. One of our participants recalls how a stranger helped her get to the front of the line during a pouch leak.

Talking to Friends and Family
Time with friends and family are vital to everyone. How do you address having an ostomy with them? Some of our participants suggested having a “code name” for the ostomy that they can use with their family and friends to talk it in public. Unfortunately, some people have disparaging comments or jokes about ostomies once they know about it. Some ostomates use humor back to deflect the situation. It is also ok to say: “I am not really comfortable joking about my ostomy like that, but I am glad you will be willing to help if I need it. I really appreciate it.”

Noises
Noises happen! People with ostomies have no control of when they happen. In the beginning, our participants noted that they felt awkward about the noises their ostomies made. It helped people to remember that no one knows that the noises came from the ostomy. It is ok to say nothing (low disclosure). It is also ok to say: “Excuse me, I have an ostomy pouch and sometimes it makes noises” (medium disclosure).

Sex and Intimacy
Some people are not sure when or how to tell a romantic partner about their ostomy. There is no right or wrong time. Some people may choose to tell someone immediately, while other people might wait to tell the person until they know the person better. Your comfort is what is most important. We have suggestions and real-life testimonies in the guide related to speaking about sex and intimacy while having an ostomy.

Talking to Clinicians
We also go through ways to manage different levels of challenging social situations or what we term as “difficulty.” For example, you are in a clinical visit with a new physician who is not familiar with ostomies. Our participants universally encountered this situation. They noted that they often are the most knowledgeable person about ostomies in a clinical visit. In the guide we provide some easy to remember suggestions about how to manage this situation and others.

What’s Next?
We are scientists and this work does not end here. We are actively working to obtain funding to test this guide to see if it makes a difference for people with ostomies. We have also translated the guide into Spanish and are pilot testing it with people who prefer to speak in Spanish. Our experiences with major grant organizations, however, has been underwhelming to say the least. Some reviewers talk about “osteotomies” (surgically created bone holes) instead of ostomies demonstrating their complete lack of basic understanding. Other reviewers assumed that existing information already contained a wealth of communication-related information for ostomates. Despite these, we are undeterred and will keep pushing forward for funding. We would appreciate any support for this work from anyone including the ostomy community, ostomy pouch manufacturers, and local/state health agencies to keep the momentum going! We would also appreciate your feedback on the Speaking Stoma Guide. Please feel free to email me at jivatury@austin.utexas.edu.

Joga Ivatury, M.D., MHA, is an associate professor of surgery Dell Medical School and the inaugural chief of colon and rectal surgery at UT Health Austin. The Speaking Stoma Project was funded through the Communication for Health, Empathy, and Resilience Grant Program and created in partnership with Dell Medical School and the Center for Health Communication at The University of Texas at Austin.

Sexual well-being and intimacy after ostomy surgery

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After ostomy surgery, it’s natural to feel sensitive about how your body has changed and be concerned about how it might affect intimacy and your sex life in the future.

Wherever you are in your journey, your sexual well-being is an important part of who you are.

  • Sexual well-being is an important part of everyone’s life, regardless of whether you are in a committed relationship, enjoying or thinking about dating, not sexually active, or unpartnered.1 
  • It covers many areas including body image and self-esteem, sexual function, reproductive health, emotional and physical satisfaction, and can impact both your physical and mental well-being. 1, 2
  • Pleasurable, fulfilling and fun sexual and intimate experiences are not out of bounds because you’ve had ostomy surgery. And no matter what your relationship status, age, gender or sexuality, starting the conversation about sex is just as important as the discussions around diet, exercise, skin issues and generally living with your ostomy.

Here are some topics you can explore in more detail in A Guide to Intimacy after Ostomy Surgery:

  • If you’re not ready, don’t rush. For some, intimacy will be one of the most important aspects of life they want to resume post-surgery, and for others, it might be the last thing on their minds.
  • When you are ready….Communication is the key when it comes to intimacy. Make time to talk to your partner.
  • Enjoying intimacy with an ostomy is anything but boring! Refer to the Guide for tips to increase your, and your partner’s, enjoyment.
  • Sexual orientation: Whatever your gender identity and sexual orientation, there are so many different ways of expressing and enjoying intimate moments including holding hands, hugging, kissing, cuddling and lots more.
  • Common issues that can affect everyone. The most common issues reported to us from people following ostomy surgery are feeling they must resume intimate relationships straightaway, and a fear of disappointing their partner.1 Two very common conditions that can affect sexual intimacy – vaginal dryness and erectile dysfunction – can be experienced by men and women at all stages of life, and whether they have an ostomy or not.
  • Pregnancy with an ostomy: Many women with an ostomy worry that pregnancy will be an issue after surgery, but in the vast majority of cases, it shouldn’t be. Most women are able to enjoy a very typical experience.

For more information, download A Guide to Intimacy after Ostomy Surgery

  1. References: 1. A Cross-National Study of Subjective Sexual Well-Being Among Older Women and Men: Findings From the Global Study of Sexual Attitudes and Behaviors Publication Title: Springer. Publication Date: 4/2006 . Author: Laumann, Edward; Paik, Anthony; Glasser, Dale; Kang, Jeong-Han; Wang, Tianfu; Levinson, Bernard; Moreira, Edson; Nicolosi, Alfredo; Gingell, Clive. 2. What is sexual well-being and why does it matter for public health? Kirstin R Mitchell, Ruth Lewis, Lucia F O’Sullivan, J Dennis Fortenberry. Lancet Public Health 2021; 6: e608–13. Published Online. June 21, 2021. https://doi.org/10.1016/S2468-2667(21)00099-2.

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.

Dressing to Feel Good

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By Lynn Wolfson

It is amazing what a boost one can get from dressing to feel and look good, especially those of us with ostomies. I know that when my hair is cut into an easy style that I can maintain, my nails are done and my clothes fit, I feel beautiful. When I feel beautiful, I am happy and share it with the world.

As an ostomy support group leader, I often hear from new ostomates struggling with what to wear after surgery. Many people may have their own style and should explore options to keep wearing the clothing they love. Too many others seem to lose confidence and motivation to dress in the more presentable ways they once did. Overall, I stress to dress so that you feel confident, comfortable, and good about yourself.

So, let us start with the pants. Depending on where the ostomy is located, this will determine whether one would be comfortable with zipper and button pants such as jeans. For me, I find that too restrictive, especially since I have two ostomies. Instead, I prefer either maternity pants, so I have belly room and my legs are not baggy or high elastic-waisted pants. I buy a variety of solid colors of the pants that I find most comfortable.

Unfortunately, men do not have the same choices as women. They should find a brand of pants that are comfortable for them and get them in an array of colors. Stretchable waists can be found on various pants and shorts designs, so don’t feel like you have to resort to athletic wear if you don’t want to.

The tops for women are fun to shop.  I usually get a loose shirt or blouse that goes over the pants. I get multiple tops for each pair of pants so I can mix and match.

Men may still have to tuck their shirts in for business. However casually, they can wear a shirt outside their pants or shorts.

It helps to be beautiful on the outside, especially when I am not physically feeling great.

Since I live in Florida, I only wear pants when it is chilly or when I travel to colder climates.  Personally, I prefer wearing dresses that do not have a waist.  I find them very comfortable and cooler in our hot climate. However, these dresses are not appropriate for business. I do have more tailored dresses without a waistline to wear for business occasions. I generally prefer wearing dresses just below the knee as one of my ostomy bags hangs low.

Shoes should be comfortable. Wear sneakers whenever possible if that’s what you want to do. In Florida, I wear sandals with rubber soles. Up north, boots are a necessity.

Lastly, I get my hair colored and shaped once every six weeks to keep it looking fresh and easy for me to maintain. I also get my nails done every three weeks.

It helps to be beautiful on the outside, especially when I am not physically feeling great. It helps me to get myself going and not have that get back into bed feeling. It is all a matter of attitude!  When I dress for success, I feel good about myself and am successful in getting things done.

Caring for an Ostomate with Memory Loss

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By Sarah Biggart (Convatec me+™)

Frequently I speak to callers about the challenges of caring for an ostomate with memory loss. Often time, people who were previously self-sufficient, independent ostomates become pre-occupied with their pouch; sometimes even pulling on it, which could cause numerous issues1,2.

This could be in the future for some of us, and a reality some caregivers are facing now as they care for and support loved ones.

If you are assisting a loved one, and you see them tugging, pulling, scratching or playing with their appliance, the first thing you should consider is that there may be a reason for this behavior. Their peristomal skin may be itching or burning, or they might be experiencing pain or discomfort around the stoma3. For someone who may have trouble communicating, this could be their way of letting you know something is wrong.

If this is a new behavior, contact your local ostomy nurse or healthcare provider. It’s important to rule out any medical issues they may be experiencing.

If the issue is determined to be purely behavioral, we have some suggested tips and tricks that may help as you care for and support your loved one.

Pouch Change Tips1,2,3:

  • Create a safe, relaxed environment. Take your cues from your loved one considering where they are the most comfortable. Maybe instead of standing in the bathroom, try laying down on the bed with soothing music or a favorite show playing in the background.
  • If evenings can be tough, a morning pouch change before eating breakfast may make more sense for you.
  • Keep ostomy supplies organized and clearly labeled for people who may be able to handle pouch changes independently or for rotating caregivers.
  • Use a calendar or the My Ostomy Journey App to track pouch changes. Do not wait until there is a leak to change the pouch. A leaking pouch may contribute to skin breakdown issues.
  • It may be necessary to store pastes, powders and sprays securely, as patients may attempt to tamper with or ingest these items.
  • Try ostomy accessories designed to simplify pouch changes.

Daily Living Tips1,2,3:

  • Many people with memory loss find comfort in routine. Find a rhythm to ostomy related tasks, such as emptying the pouch, and use the same verbiage each time to bring familiarity. Coordinate with the entire care team to ensure everyone is aligned with using similar language and prompts.
  • Staying occupied may help with keeping hands away from the pouching system. Things like puzzles, sorting items and folding something, may be just the thing to help.
  • Try an Ostomy wrap. Employing the “Out of Sight, Out of Mind” principal, a wrap helps to keep the pouch concealed and supported. A good ostomy wrap is made from a soft and stretchy wicking fabric and helps to keep sweat and moisture away from the skin and the wearer cool and comfortable.

Feeling isolated while providing care for loved ones is a common challenge, we encourage utilizing groups for ostomy support.

And remember that caregivers need care too. You may find comfort in your local Ostomy Support group Find one near you on the UOAA support group finder: https://www.ostomy.org/support-group-finder/.

 

Ruth and her family were confused and stressed when they had to take on the care of their 99-year- old mother’s ostomy.

“My mother has had a colostomy for nearly 60 years. She is now 99 years old with dementia, but had been independently keeping up with her stoma and pouch until just a few years ago. When family members started taking on the task of assisting her, we had to scramble to get up-to-speed since we never paid attention to the details of changing her “appliance” or emptying and re-closing the pouch.”

Ruth connected with me+™ to learn more about how to use ostomy products and accessories, and received follow up product samples and ongoing support.

“Erica was compassionate, truly listened to the problems we were encountering with my mother’s situation, and suggested products that addressed each of those challenges. The bottom line is Erica made me feel supported in my mother’s care, and that she cared that our family wanted my mother’s quality of life upheld when other healthcare providers wrote her off due to her age and mental condition. Erica contributed to us honoring my mother’s wonderfully rich and productive life at a time when that’s not evident to a stranger’s eye. We are so grateful for the support we’ve received through Convatec’s me+ Clinical Support Nurse Team.”

 

If you have questions about product sampling or nurse support available through the me+™ program, please contact us at 1-800-422-2211 or cic@convatec.com.  We look forward to helping you soon.

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.

References:

  1. DementiaUK, Caring for a person with a Stoma and Dementia. https://www.dementiauk.org/information-and-support/health-advice/caring-for-a-person-with-a-stoma-and-dementia/. Accessed November 13th, 2023.
  2. United Ostomy Associations of America, Inc, Dementia Stoma Care. https://www.ostomy.org/dementia-stoma-care/. Accessed November 13th, 2023.
  3. McGrogan M. How holistic assessment and appropriate product selection will enhance quality of life for ostomates with cognitive impairment. WCET® Journal 2021;41(1):33-35

Ostomy What? Post Surgery Ostomy Advice

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By Lisa Febre

You’re not alone, as a new ostomy patient I was overwhelmed. Here is how I learned how to take it slow, keep it simple, and learn about this new normal.

I awoke from surgery like many new ostomates: confused, frightened, angry, overwhelmed, sad, and anxious. A cancer diagnosis and a colostomy were more than I could handle for one morning. It’s a lot to take in, and I just wasn’t ready to face any of it.

Until I had my ostomy, I did not know what this was. Sometimes I would hear vague references on a tv show to “a bag,” but no proper descriptions or explanations. I had a bag and no idea what it was or what to do with it. Afraid to look at it, I thought I might see something so gross it would prevent me from taking care of myself. Would I need to rely on someone else to take care of me from now on? Did all my independence just go out the window with one surgery?

Though knowledgeable and well meaning, the ostomy nurse at the hospital left me feeling overwhelmed. The information she was sharing came at breakneck speed. Words like “flange,” “wafer,” “stoma,” “output,” and “pouching system” were being thrown around as if I already knew what they were. Demonstrations of things like ostomy powders and barrier tape only confused me more. All I remembered from the half-hour spent with the ostomy nurse was how to measure my stoma and how to cut the barrier to size.

Types of ostomy bags or pouches ileostomyThe ostomy nurse had a lot of information to cover in a short period, and she thought all of it was important. Afraid of failing, I was certain that I was going to make terrible mistakes. I doubted my ability to do any of this.

Amidst my stress over the new colostomy, I was also recovering from major abdominal surgery. A colectomy is a dramatic change to the body. In my case, I had a large vertical incision that needed care, along with the sutures around my new stoma. Five days after surgery, I was still easing into my post-op life with a soft-solids diet, gradually introducing new foods according to the nutrition guidelines my surgeon and nutritionist had set for me. Exhausted, sore, depressed, and worried about the future, I had a lot on my plate.

Learn About Your Ostomy Supplies

Videos to the rescue. The ostomy supply manufacturers offer “how-to” videos on YouTube and elsewhere for their products, which are straightforward and helpful. I spoke with a customer support representative from the medical supply service a few days after I got home, and he gave me the best advice: “keep it simple until you get the hang of it. Then you can try the fancy stuff.” His explanations were simpler and this time, he instilled me with confidence. He took the time to answer my questions and used language that made it clear to me that this wasn’t rocket science.

Don’t be afraid to make phone calls to the ostomy supply companies. Their customer service people can be the most helpful people you’ll encounter with your ostomy. Also get the New Ostomy Patient Guide from UOAA that has images and articles to help you adjust to all the new terminology and information.

Get to know the parts of your pouching system. Hospitals will send you home with a particular brand, so begin there but know you can sample a variety of products. I had a 2-piece, filtered, drainable system with a flat barrier (wafer). I decided to stick with what the surgeon had stuck on me, copying that for a few weeks. Thankfully, it can take up to a week after surgery for the gut to work again, so I had time to get to know the appliance before having to deal with output.

Take it Slow

Caring for the colectomy and ostomy incisions was no different from other surgeries. Follow the hospital’s discharge instructions, which are to keep the sutures dry when bathing (there are excellent waterproof dressings readily available online and at your pharmacy). It’s a good idea to trim your barrier adhesive patch to avoid your midline incision until it is fully healed. Even though the sutures around your stoma are being exposed to output, don’t panic. Gently wash the area with each appliance change.

Your surgeon will give you important instructions regarding lifting limits. This usually entails not lifting over 5 pounds for several weeks. They will also advise you to walk as much as possible. Movement aids in jumpstarting your digestion, so walk every day! Always follow your doctor’s instructions: many people are at high risk for parastomal hernia. Your surgeon will tailor your lifting and activity limits to your personal needs, and it is in your best interest to follow those instructions diligently.

Keep it Simple

Keep things as simple as possible as you adjust to your new ostomy. Don’t burden yourself by wondering about all the extra items floating around in the “Starter Kit.” When people in your support group talk about tricks and tips, don’t worry, you’ll soon reach a point when you’re the one giving the advice. It’s overwhelming in the beginning, but before you know it, you’ll become familiar with all the accessories, too. As your body recovers, and you settle into your new normal, you’ll gain confidence in caring for your ostomy. For a month after surgery, I only dealt with the wafer/barrier and pouch. Simplicity helped me feel confident.

After surgery, your stoma will be inflamed. For 8-12 weeks after surgery, as it heals, it will change size before settling into its permanent size. Each time you change your barrier, use the stoma template that comes with your supplies. And don’t worry if your stoma bleeds a little – this is completely normal and should stop quickly. If the bleeding is heavy, it won’t stop, or you know for a fact you cut your stoma on a sharp edge, call your doctor or ostomy nurse.

Don’t be afraid: stomas move before and during output. Your stoma is a living piece of your intestine and intestines move! It is normal for it to retract and pucker. It will let you know when something is about to happen. This is very useful when you’re not home; you’ll feel more confident about knowing when to find a bathroom.

Find the Supplies that Work Best for You

By the end of the first 6 weeks, I was feeling much surer of myself with taking care of my colostomy. Then, I tried all kinds of pouching systems along with many accessories. When I changed brands, I went through the process all over again, speaking to sales representatives and using all the free samples they sent me. Just remember you’ll need a prescription for your supplies from your surgeon, so once the hospital sets you up with a supply company, give that to them. And if/when you change brands, you’ll need a new prescription for that. Don’t worry, it sounds confusing now, but your supply company should handle these details for you.

Be Kind to Yourself and Embrace Peer Support

It’s normal to be overwhelmed in the beginning, so aim to keep things simple. If your ostomy nurse was like mine and raced through the material, it’s difficult to feel confident on your own. Hit reset and try to copy what the surgeon put on you after surgery. Your home health aide may or may not have experience with ostomies, so do your own research and practice with sample supplies. Join a support group as soon after surgery as you can. Armed with information, experience, and support, you, too, will find the confidence you need to care for your new ostomy.

 

Lisa Febre is the author of “Round the Twist: Facing the Abdominable,” a memoir about her diagnosis and treatment of Stage-4c Colon Cancer, which hits bookshelves in September 2023. She had a descending colostomy for 10-months. To learn more visit her at UOAA’s National Conference in August or visit  lisafebre.com.

 

 

‘UOAA Has Been A Lifesaver for Me’ Says New Ostomate

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When first presented with having a “bag” I was terrified. I had a lot of questions…. How will I wear my clothes? Will I still be able to run or lift weights? Will I ever date again? How can I go to the beach? And so many more. I really was not familiar with this at all.

How UOAA Helps: Connie contacted UOAA before surgery earlier this year and is now on the path to health and happiness in life with an ostomy. Donate to help the next ostomate in need.

I did my fair share of googling, but there are so many conflicting pieces of information out there. I also joined some Facebook groups to find some support.  That proved to be very confusing and often quite discouraging. In February of 2023, a week before my surgery, I met with an ostomy nurse for the first time.  That is when it hit me.  She showed me a practice stoma, put my markings on, and had me look in a mirror with a bag.  I realized I needed more information in order to navigate this the best I can.

Finding UOAA

I came home and searched for ostomy support groups in my area and found one. I immediately connected with them, and they shared UOAA’s information with me. I then went on to their website ostomy.org to gain as much knowledge as possible. I went into surgery with a positive attitude because I knew my life would be so much better afterward.

The people I talked to at UOAA’s office were so helpful! They answered all my questions, and I had a lot!  They directed me to many resources like a New Patient Guide and sent me links to videos and other information which I still use. It is reassuring to know that I can reach out with questions and that they will be there for support.

UOAA has been a lifesaver for me. I was overwhelmed following my ostomy surgery. I am so excited that I am feeling better. I am so appreciative of the connections I have been able to make and the educational materials I have received by contacting UOAA.

On February 23, 2023, I had surgery for an end ileostomy, total colectomy, rectopexy, and hernia and bladder repair. After a lifetime of being a prisoner to my colon and GI tract, a ton of medications, and a ridiculous daily twelve-hour ritual that dictated my days, I finally was given hope to improve my quality of life. The day after surgery I already knew this was the right thing for me, and I somehow felt “free” of all the meds and issues I had before.

Helpful Free Resources

UOAA sent me a welcome packet in the mail with a ton of info about nutrition, living with an ostomy, exercise materials, you name it. The coolest thing was the card to use with TSA when I fly… that is going to be a lifesaver, I think! I had many questions about getting back to my normal activities, and I was sent links to Youtube and even Instagram of people that have ostomies and have resumed, or even surpassed, their pre-ostomy fitness routines.

My experience has definitely been better with my local ostomy group and with UOAA by my side.

A link to an occupational therapist was also helpful. I started following and connecting with many of these people, as I have found inspiration in them. I have since called UOAA several more times seeking answers to my questions, concerns, or even worries. Each time they have promptly responded and provided me with continued optimism as I begin this ostomy journey.

UOAA Helped Me Feel ‘Normal’ Again

I think that the biggest thing is that UOAA helped me to feel “normal” and that I am not alone in this.  Starting out with an ostomy is pretty scary, and there are a lot of unknowns. So much of what you read is negative from people that have had problems or are just very discouraged with their situations. UOAA shares the successes, the positives, and the education so that you can learn and grow each day knowing that you don’t have to give up anything at all.

For me, I plan to get back to my full fitness routine once I am fully recovered. I already feel healthier than I have for so many years.  But I know I still have a lot of learning to do… from appliances (I still can’t figure out the best ones for me), to the different types of foods to eat, to stoma care (I still always want to make sure everything is okay), to traveling, exercise, clothing, wraps, connecting with other people with ostomies, and maybe even dating again in my future. My experience has definitely been better with my local ostomy group and with UOAA by my side.

Grateful to Learn More at the National Conference this Summer

I’m also very thankful to have been awarded a CARES scholarship (FYI, current scholarships have been filled) to attend UOAA’s National Conference in Houston. This assistance will allow me to continue on my journey in a healthy and positive way.

As a single 57-year-old mom, I have three grown children (one still in graduate school), a new granddaughter, and two younger children I adopted, one with unique medical needs – it has not been easy. Last year’s hurricane, coupled with the astronomical surgery costs, have me struggling greatly on a teacher’s salary. I have worked really hard to provide for other people, and I’ve never really done for me.

This conference is something I feel is important for me as I want to be able to live my life to the fullest. I strive to be the best Nana, mom, and person I can be. I want to embrace my body, my life with an ostomy, and continually improve my quality of life.. It will allow me to move forward, make connections, gain much-needed knowledge, be an advocate for myself and others, and to stay “OSTOMISTIC!” 

One day I can even envision myself advocating for others in the ostomy world, being active in the ostomy community, and I would love to get to the point where I can even be an inspiration to others.

Connie, you are already inspiring to those of us at UOAA.

Please Donate to UOAA to put other people like Connie on a successful path.  Support quality of life resources, education and advocacy for people living with an ostomy or continent diversion. United Ostomy Associations of America inc. (UOAA) is a 501(c)(3) nonprofit organization and all donations are tax deductible. Thank you!

Shared by Connie Pollina of Naples, Florida

Young Ostomates to Gather in Houston for #UOAA2023

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Among the general public there is still a perception that people living with an “ostomy bag” or pouch are older seniors or at least middle-aged. Those searching on social media however will soon discover that younger people with an ostomy are not only  visible, but sharing and embracing “ostomy life” in a whole new way.

Allison Rosen and friends at the Waterwall Park close to the Royal Sonesta Houston Galleria, the site of the UOAA 2023 National Conference. 

Many young adults with an ostomy have never had the opportunity to meet another person they could truly relate to.

What if there was a place where online ostomy friends could meet in person, socialize, laugh, cry and just be together? Well, that place is UOAA’s National Conference August 10-12, 2023 in Houston, Texas.  

Attendees of all ages will get to experience a large ostomy product exhibit hall and sign-up to sample products and see a WOC nurse at the free stoma clinic. Former Miss Texas and current J-Poucher Magen Cherry will provide the keynote welcome. 

Ostomy experts will also speak and be on hand to answer surgery-specific questions for people with an ileostomy, colostomy, urostomy, j-pouch or continent diversion. Young adults, along with Caregivers, IBD Patients, LGBTQ+, and kids/parents will be offered even more specialized sessions and tracks.

Young Adult Track 

After its successful debut in Philadelphia, the Young Adult Track is back for this year’s conference! Designed for ostomates in an earlier stage of life, the track features topics like, dating and sexuality, body image, managing school/work, navigating parenthood, exercise, and staying active all while juggling ostomy care and other chronic health conditions. 

Sessions range from formal presentations and panel discussions to off-the-cuff conversations and opportunities to connect with fellow young ostomates. The Young Adult Track offers participants the opportunity to learn new things while forming friendships and bonds that extend well beyond the weekend of the conference.

”If you’re looking for peers in your age range who truly “get it,” look no further — we can’t wait to see you in Houston!” says co-organizer Molly Atwater-Pulisic (Molly Olly Ostomy). The young adult group typically meet informally after hours in the hotel lounge and go on city outings together as well.

You’ll want to stay at the Royal Sonesta Houston Galleria to not miss out and be close to all the action. A special UOAA group rate is available. 

The young adult track is awesome, because we make fast friends and are able to relax and talk openly and casually about personal, ostomy-related topics that are sometimes difficult to share with people in our usual daily lives. -Nate Hadlock

Local Houstonian and ostomy advocate Allison Rosen is helping to plan a Texas themed evening of line dancing, drinks and desserts. “I am looking forward to meeting virtual Ostomy friends in person for the first time! Meeting others who understand I know will be life changing!” Rosen says. 

Young Adult Track attendees will have a dedicated meeting room starting with a meet and greet on the morning of Thursday, August 10 ending with FAQs Saturday afternoon before the closing party. A special Friday night gathering just for the Young Adults is also being planned with track sponsor Hollister. 

If this all feels a bit overwhelming don’t worry you’ll be embraced with open arms. Unofficial social chair Alyssa Zeldenrust has made it her mission to greet and connect young ostomates since first attending the conference in 2011. In a testimonial video she shares why she keeps coming back. “All of us are on our second chance at life, so it’s extra special to all be together and it’s a very joyous atmosphere.”

She’ll also be speaking on Ostomy FAVE Things along with other conference veterans Chloe Moody and Nate Hadlock.

“I’ll be sharing tips, “tricks”, and experiences that have helped me through my medical journey. As many ostomates have done for me since my first conference in 2017, this year my goal is to help others feel welcome and have breakthroughs of their own,” Hadlock says.

Those active on social media may see some other familiar faces such as Kristen Furey, The Furey Fighter. “I’m excited to share my journey with Advocacy and what it has done for me in terms of growth and acceptance with an ostomy!” Furey says. “I am most looking forward to attending my first UOAA ostomy conference and being around so many other people who have similar health conditions and an ostomy! Knowing they have walked the same journey that I have and hearing from them firsthand their experiences with an ostomy!”

Speaking on Parenthood it will also be the first conference for Meghan Brown (@EMC_Brown)  “I am most looking forward to meeting longtime ostomy friends and experiencing my very first conference, as well as hearing some of my closest ostomy friends speak!”

“For my talk, I’m excited to share more about my experiences of pregnancy with an ostomy and what life looks like now with a very curious three year old and wild 20 month old. I’ll shed a little light into the funny but important conversations I’ve had with my three year old about my ostomy, and how we maintain an open dialogue around all things ostomy.”

Molly Atwater-Pulisic will be joined with Collin Jarvis in leading many of the other topic discussions. Check out the full conference schedule. Young Adults between the ages of 18-25 get the special price of $135.00 for all three days. 

Caregivers Track

Partners or caregivers of ostomates are also encouraged to attend UOAA’s National Conference this summer. Register and you’ll be welcomed for all the social events and food and drink opportunities and receive access to the informative Exhibit Hall.

Special sessions are also exclusive to caregivers on Friday August 11. 

The Caregivers Track that morning will feature a Caring for a Male Rap Session and a Caring for a Female Rap Session. 

An important session on Caregiver Stress – How to Cope will be available that morning a well. 

Pediatric Track

The youngest of ostomates and their parents/caregivers will also have a special track at the conference.. This day-long  program is held on Saturday and will be led by pediatric WOC Nurses and ostomy parents. 

Some session highlights include: 

Advice from an Ostomy Parent with Julie Hubbard

Dietary Considerations in GI/Ostomy Patient with Erika Kay, RDN, LD 9:15am to 10:30am Ask the Expert: Gastroenterology Care of the Pediatric IBD Patient with Dr. Allison Wyatt 

Ask the Expert: Surgical Management of the Pediatric IBD Patient with Dr. Rueben Rodriquez

Ostomy Complications and Pouching Techniques with WOC Nurse Maryanne Lewis

Ask the WOC Nurses with Barbara Richardson, Erika Guidry and Sharon Wallace

Exercise and Activities for Children with Ostomies with Tenille and Rebekka Smith

Children between the ages of 5-17 are just $25 and the one-day rate for parents is $125.00

Volunteers from around the country are working hard to create a life-changing experience for the young ostomate community. Register by May 31st to get the early bird discount. Please spread the word, invite a friend and discover your people this August in Houston.