Discarding Pouches Discretely But With Dignity

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Lynn Wolfson, UOAA Director

As ostomates, we often feel self-conscious in public but deserve the same respect as anyone else. We don’t want to be singled out or face discrimination because of our ostomies. However, we also have a responsibility to leave a positive impression on others and the places we visit.

Recently, while flying, I had an unusual interaction with an airline attendant. Before I entered the restroom, she approached me to ask if I needed anything. Though her inquiry seemed strange, I assured her I was fine. After I left the restroom, she asked if I had disposed of any bodily waste in the trash. I was surprised by the question and said I hadn’t.

As a teacher, I saw this as an opportunity for education. I asked the flight attendant why she had asked such a personal question. She explained that she had noticed my ostomy through my clothing and that her grandmother had also had an ostomy, often discarding used bags in the trash without proper disposal. Her concern clarified her question. While the inquiry was inappropriate, it underscored how improper ostomy hygiene can reinforce negative stereotypes.

I explained that her grandmother likely had a colostomy, while I have an ileostomy with a drainable pouch. I suggested that her grandmother should have used a disposable bag, like a grocery or Ziplock bag, to seal or knot before disposal. This practice helps reduce mess and odor and allows ostomates to discreetly dispose of their pouches. It’s important for all ostomates to follow this practice at home, in others’ homes, and in public spaces. Many manufacturers provide plastic bags with the pouches for this purpose.

It’s crucial for us to carry or request a bag for disposing of our ostomy pouches and to knot these bags before discarding them.

For new ostomates, if you find yourself in a public restroom without disposal bags, wrap your used pouching system in toilet paper and place it in the wastebasket. To minimize odors, consider using one of the many deodorizers available from ostomy supply providers. Some deodorizers are drops that can be added to the bottom of the pouch, while others are air freshener sprays.

To minimize splashing when draining a pouch, try sitting backward on the toilet seat and placing toilet paper in the bowl before draining. It’s worth noting that at past UOAA conferences, hotels have commented on how clean and hygienic UOAA groups are for their cleaning staff compared to the general public.

Following my experience, I’ve advocated with the airline to consider adding a universal sign in the lavatories to provide guidance on the proper disposal of medical supplies. It would be beneficial if airplane restrooms included bags for this purpose, which could also be used for baby diapers, sanitary napkins, and tampons.

In summary, it’s crucial for us to carry or request a bag for disposing of our ostomy pouches and to knot these bags before discarding them.

Managing the Challenges of Pancaking

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By Janet Stoia Davis RN CWOCN FCN and Janice C. Colwell APRN, CWOCN, FAAN

 

What is pancaking?

For a person with a fecal stoma, emptying an ostomy pouch can at times be slow, messy and frustrating—especially if they find that stool is stuck at the top of the pouch around the stoma. When stool is thick and dry, a phenomenon called pancaking may occur. Thick stool exiting the stoma that does not fall to the bottom of the pouch can form into the shape of a pancake at the top of the pouch, hence the term “pancaking”.

Why can pancaking be a problem?

Thick pasty stool can remain over the stoma, making its way under the pouch adhesive and potentially lifting the adhesive/pouch. When this occurs, the stool contacts the skin around the stoma causing leakage. This leakage can damage the peristomal skin, lift the pouch from the skin, and result in odor and seepage of stool onto clothing.

Who is at risk for pancaking?

Anyone with a fecal stoma can experience pancaking, but it is more common among people with a colostomy. Colostomies are created in the colon or large intestine (they are given two, names which confuses people, but they are one and the same). The colon’s job is to absorb or “suck” water out of the intestinal contents, and as stool travels through the colon it becomes thicker. By the time it reaches the final section of colon on the left side of the body, it can be pasty and dry. Many colostomies are created on the left side of colon, making the stool pasty, dry, and thick. When stool is expelled from the stoma, it may not move away from the stoma, getting stuck at the top of the pouch leading to pancaking.

Individuals with ileostomies can also experience the challenges of pancaking, but it is less common and will depend on the consistency of their stool. In some cases, form-fitting clothes may constrict the pouch and flatten the stool, preventing it from falling to the bottom of the pouch.

What can be done to decrease instances of pancaking?

For some people, increasing fluid intake can make the stool less thick and pasty, which may allow it to travel away from the stoma and drop to the bottom of the pouch. Stool softeners can be taken orally to increase the moisture content of the stool which may also facilitate the movement of the stool into the bottom of the pouch. If an individual’s clothing fits snugly over the pouch, wearing a looser fit may also help decrease the incidence of pancaking.

Some pouching systems have a built-in filter that helps air escape the pouch and deodorizes the gas. However, if the filter removes all air from the pouch, it may create a suctioned environment that makes it difficult for stool to slide to the bottom. A sticker for the gas filter (provided with some pouches for underwater use) or a piece of tape over the filter may help avoid the vacuum effect in the pouch. This will vary by individual.

The use of an in-pouch lubricant can facilitate the movement of stool away from the stoma and into the bottom of the pouch. These lubricants can be applied to the inside of the pouch one or more times per day. This creates a slick surface on the inner lining of the pouch to help thick stool slide to the bottom of the pouch and prevent it from pancaking over the stoma. Lubricants can be used in both drainable and closed end pouches.

In addition to pancaking reduction, a lubricant may also make pouch empties faster and cleaner. Several companies make lubricant that can be used in the pouch. A new company, Revel, has placed special emphasis on pancaking and drain time reduction. Revel created a new type of lubricant using a technology called LiquiGlide that creates a long-lasting slippery surface on the inside of the pouch. Their product, It’s in the Bag, can last up to 24 hours, alleviate pancaking, and decrease pouch drain time. This product has been used by people with a fecal stoma who reported a decrease pancaking and emptying time as well as leaving behind an overall cleaner pouch.

Revel is a proud sponsor of United Ostomy Associations of America and dedicated to creating products that make significant improvements in the lives of ostomates. To learn more, visit https://revelostomy.com/

 

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

Access to Supplies with Medicare – The Never-Ending Story

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Panniculectomy with stoma re-site allows ostomate to thrive

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Colleen Reddington’s Ostomy Story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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.

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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.