Ostomy Support for Colorectal Cancer Patients

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Whether Temporary or Permanent UOAA information and Support can help you Succeed in Life with an Ostomy.

By Ed Pfueller, UOAA

March is Colorectal Cancer Awareness Month. Colorectal cancer often has no warning signs or symptoms, and it affects more than 140,000 men and women each year. It is largely preventable with screening and treatable if caught early.

What can you do? Congress has introduced a bill Removing Barriers to Colorectal Cancer Screening Act (S668/H.R.1570). This act would fix a problem in Medicare that is a major deterrent to senior citizens getting screened. Currently, Medicare covers screening colonoscopies at no cost to the patient, but if polyps are removed during the screening procedure, beneficiaries are hit with unexpected costs.  Ouch!  This bill waives Medicare coinsurance requirements with respect to colorectal cancer screening tests, regardless of the code billed for a resulting diagnosis or procedure.

You can click here to help UOAA and other advocacy organizations advocate for final passage of this legislation in 2019.

You’ll also find that colorectal cancer survivors engage with United Ostomy Associations of America (UOAA) all year long.

If your cancer requires surgery you may have been told you’ll need an ostomy. In many cases, this is a temporary ileostomy (from the small intestine) or colostomy (large intestine). This may be required to give a portion of the bowel a chance to rest and heal. When healing has occurred, the colostomy can often be reversed and normal bowel function restored. A permanent colostomy may be required however when a disease affects the end part of the colon or rectum.

A colostomy is a surgically created opening in the abdomen in which a piece of the colon (large intestine) is brought outside the abdominal wall to create a stoma through which digested food passes into an external pouching system. A colostomy is created when a portion of the colon or rectum is removed due to a disease process such as colorectal cancer or a damaged area of the colon.

If you need lifesaving ostomy surgery remember-you are not alone. 725,000- 1 million people in the U.S. of all ages and backgrounds live with an ostomy. You too can do this, but it is critical to connect with UOAA resources. Especially seek out one of our almost 300 UOAA Affiliated Ostomy Support Groups in the U.S. before, or shortly after, your surgery. Peer support and preparation can put you on the path to success in what will be a challenging time both emotionally and physically.  Ask if the hospital has an ostomy nurse and insist on having your stoma placement marked before surgery. These and other self-advocacy tools are paramount and outlined in our Ostomy Patient Bill of Rights.

Our new ostomy patient guide is available to all who need it and is a great overview of what to expect. Our colostomy guide has even more in-depth information. You may feel too overwhelmed as you are discharged at the hospital to fully understand ostomy pouching systems and accessories and lifestyle considerations. If you have a question medical contact your doctor or nurse, in you have a quality of life question- UOAA likely has the answers.

Let’s clear up a few myths right from the start and learn some facts about living with an ostomy. After the healing period outlined by your surgeon you can swim, bathe, be intimate, travel, and embrace a new normal life. After some trial and error, you may also eat most of the foods you have been able to eat in the past.

Certified Wound Ostomy and Continent Nurse Diana Gallagher has outlined Tips for a Succesful Recovery After Ostomy Surgery for us that you should use as a roadmap for success.

Contrary to what it may seem from social media not everyone with an ostomy will be a candidate for a reversal operation. We also have a blog post to learn more Facts About Ostomy Reversals.

We do encourage you to read patient stories and tell your own story. People have ostomies for a wide variety of reasons and people with bowel diseases you may not have been aware of often have an increased risk for colorectal cancer. This includes ulcerative colitis, Crohn’s disease, pre-cancerous polyps, and hereditary syndromes such as familial adenomatous polyposis (FAP) or hereditary non-polyposis colon cancer (HNPCC), or Lynch syndrome.

Celebrate Colorectal Cancer Awareness Month and connect with Fight Colorectal Cancer or the Colon Cancer Alliance on how to make an impact. And even if your ostomy is temporary, remember to speak out on Ostomy Awareness Day on October 5th, donate or join our advocacy efforts, or a support group to give back to the next cancer survivor in need.

UOAA is proud to be a member organization of the National Colorectal Cancer Roundtable (NCCRT). The NCCRT is a collaborative partnership with more than 100 member organizations across the nation, committed to taking action in the screening, prevention, and early detection of colorectal cancer.

You Can Always Learn Something New

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By Karin, Newbieostomy

Whether you’ve been a part of the ostomy community for 20+ years or joined it yesterday, United Ostomy Associations of America’s (UOAA) National Conference is worth attending. There are two main themes that come up time and time again when talking to people about their experiences at the conference: education and friendship. You can read about the bonds that are formed at the UOAA conference in the post Ostomy Camaraderie.

Regarding education, it doesn’t matter if you just got your ostomy or you’ve had it for years, there’s always something new to learn because technology advances and our bodies change over time. If you’re like me, you’ve scoured the internet looking for answers to all your questions and have probably found quite a few answers hopefully here on ostomy.org or on my blog newbieostomy.com, but you might still have some other questions that are left unanswered.

Queue UOAA’s National Conference. Held every two years UOAA does a fabulous job of bringing in professionals to share the most up-to-date research and information. At the last conference in Irvine, California they brought in doctors, surgeons, WOC nurses, nurses who also have an ostomy, a geneticist, a pharmacist, a psychologist, scientists, a dietician, TSA officials, and people with inspiring stories, and probably others that I’ve missed – all who are happy to answer your specific questions and share their knowledge. That’s quite a toolbox for us ostomates to have all in one place! Here is a tentative program of what to expect at the upcoming conference August 6-10, 2019 in Philadelphia, PA.

Conference attendees speaking directly to TSA agents about traveling with an ostomy.

This year there are even suggested sessions and reserved meeting space for people with similarities. There is a Young Adult Track (Discount if 25 and under), Pediatrics Track and a Caregivers Track, so feel free to bring your family or partner along as well.

“As a first-timer it was great, so much info.” – Eric, first-timer

I lean toward the studious side, so I brought a notepad and paper to every session I attended to help me soak up and remember as much knowledge as possible. In addition to (or in lieu of) taking notes during sessions, I’ve taken pictures of the slides I thought were really valuable.

Don’t want to draw attention to yourself with your hefty notebook or by holding your camera up every time there’s a new slide? Some speakers might also be willing to share their powerpoint presentations with you if you reach out to them after the event, or they might let you record the sessions if you get there early enough to ask permission.

“I have learned more in these few days than I have in the almost 6 years with my permanent ostomy.” – Daniel, first-timer

Wow. Right?

That’s pretty powerful.

With dozens of sessions offered, it’s can be hard to choose which one to go to if a couple of them conflict with each other. Luckily, each person has their own needs and interests so it’s likely that someone you know will go to a different session from you, which gives you both an opportunity to share what you’ve learned.

You might think that the sessions are only useful to a first timer, but not so. Derek has gone to every conference and has had his ostomy for almost 20 years, yet he still chooses to attend the “Basic Colostomy” session because there’s always something to learn and the other people who attend might ask a question he hasn’t thought of. While there are many repeat (basics) sessions offered every conference, the UOAA does a great job of bringing in new speakers to talk on different subjects as well. This year UOAA is also highlighting talks that will be of interest to both the new and experienced ostomate.

Like Derek, I also found value in the sessions from this conference even though I went to a ton of sessions at my first conference in 2015. I was happy to see new sessions offered, and to be able to attend a couple sessions that had conflicted with something else I’d prioritized hearing. I went to at least one repeat session that I noticed was really similar, but even there, I felt like I gained new knowledge and perspective because my brain can only hold so much information (even if we take notes).

In addition to attending the educational sessions and exploring the ostomy product exhibit hall, there was a hospitality area open every day where you could put a pushpin in the map of the United States to show where you’d come from, ask questions of local volunteers, and talk to members of the UOAA Advocacy and Communications team. There was also a free stoma clinic where attendees could sign up for an appointment to meet with a WOC nurse to troubleshoot pouching and skin troubles. On top of that, there were great speakers at the opening and closing ceremonies, and a really fun closing night party complete with dessert, dancing, and a perfectly executed fashion show.

This year the conference is at the Philadelphia 201 Hotel in the heart of the city and there are even more social events such as a free improv comedy show and music act, a Roaring 1920s Casino Night, and plenty of free time to explore an awesome city with new friends.

Dating Life

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The Black and White of it? Support is Everything.

By Tricia Hottenstein  stomamama.com

I recently shared an article about a little boy who was bullied so badly that after twenty-six surgeries, he decided to take his own life. It hit me so hard. I read it with tears rolling down my face, my heart hurting for his loved ones and my soul hurting for the things he must have felt. I read it after spending a long weekend in the hospital and after undergoing three of four surgeries in just two months. I read it knowing the hurt of bullying and the feeling of people looking at me with any variant of disgust when seeing or talking about my ostomy bag. I read it after writing and sharing what was basically a diary entry of overwhelming emotions. It is by no means comparable, but it made me think a lot about the strong support system around me. I know that my mindset is shaped so greatly by those handpicked few who always have my back and in the midst of this article, fresh in my own rehashed wounds, my gratitude for life and the way it all works out has increased. I can’t be certain I’d have made it through the last few months had they happened to me a year ago when I was already down and struggling. Support is everything.         

I’ve had an ex who was (and still is) really supportive and caring, and one who made me cry and feel worthless in a hospital room. I’ve also had an ex who couldn’t hide his lack of understanding or his overly dramatic gags when he saw me changing my bag. The embarrassment and disrespect was the exact reason why I decided to mention my stoma the very first time I met my boyfriend. I had since decided that anyone who was less than understanding would be an immediate no. I was afraid of dating with an ostomy, but I was no longer willing to feel like a burden or anything less than sexy. I would be okay being single and building myself back up on my own.

And then practically out of nowhere, I was on a date. I was nervous in spite of it going so well, or maybe because it was. I spent many moments of conversation wondering if they were the right moments to bring up the surgery. I speak so freely of my bag to everyone. I answer questions from coworkers, friends, family, and strangers without thinking twice. This is my bag; it saved my life! It is worth talking about. But how do I casually bring this up without awkwardly ending a date? What if his response wasn’t what I wanted it to be? Although, that’s the point, right? I’m old enough, I’ve been through enough. No more on the fence with anything. It is black and white and I’m not moving forward with any more gray.

“Tell me something about yourself that would surprise me.” To be honest, I don’t even remember if he eventually answered the question. All I know is he stared at me. This moment of oh shit in my mind as he was staring at me, half laughing, shocked to be put on the spot. So I just went for it. “I don’t have a colon!” More stares, more shock. I explained the scenario in a nutshell. The disease, the surgery, and the bag I’ve had for several years.

“Well… I guess…that’s kind of shitty, huh?” The words hung in the air before we both laughed. And in all honesty, my reaction to that response could have been a variable one depending on many factors. But really, how better to respond? Because I don’t want someone who will constantly feel sorry for me, or who will treat me any differently. Rather, I want someone who will make me laugh, who will be understanding and upbeat, and who will continue on with the conversation afterward as if it is no big deal. Sure, there were questions to be asked, but not a single one of them seemed to really matter. And there it was, in black and white and bar lights: this glimmer of hope.

As it would turn out, it couldn’t have come at a better time. A few short months later, I was back in hospital gowns and waiting rooms. And not once did he flinch. Not when I delivered awful news, not while he sat next to me in pre-op, not when my bag leaked in the middle of the night or I got frustrated and had tears running down my face. The reality is, most of the time I didn’t even have time to process things before he was reassuring me I’d be okay and distracting me with nonstop laughter.

When I’m in the trenches, when I’m alone, when I think too much, it is easy to go to a place of overwhelming emotions. I have spent more than half of my life with this disease, and surgery went so well that I thought the rest of my life would be smooth sailing. I was finally meeting people who had never known me as sick. It sounds so irrelevant, but it is a huge deal. I remember several years ago when a family member introduced me as “the sick one.” It was intended to be harmless. Intended simply as a way for their friend to put a face to the person they had obviously spoken of. The person undergoing IV therapy, taking twenty-some pills a day, piling up medical debt, and seeing the best physicians while still unable to leave the house most days. It cut through me and it scarred deep. But post-op, there was this moment in life where that was no longer me. Now I was strong. I was an adventurer. I was healthy.

The frustration when that all came crashing down was audible. Suddenly I was right back down to the some of the lowest points in my life. I was again “the sick one.” Somehow even when things had been slowly going downhill, I was blinded enough by the highs to be shocked when I was back to square one. I was angry. I felt sorry for myself and felt alone despite the people around me. I started to prepare myself again for the life full of battles, ready to sink back to that person who laid in the fetal position on the sofa, unable to eat or move or laugh from deep within my belly. I just kept thinking, over and over, that this is my life. I had a whole other vision for it after my ostomy surgery, but this person, right here, in a hospital room getting bad news? This is my life.

Until the person next to me, the person who responded to the news of my ostomy when we first met with a poop joke, responded with another poop joke. The kind that made me laugh so hard that all the ugly tears shook off my face. And as he wiped the remnants of them away, he reassured me. With a few simple words, he reminded me of my actual life. Reality. Yes, I am the sick one. But I’m also the healthy one. In black and white, that is my life. Some days I will be an adventurer. I’ll feel healthy, I’ll laugh, and I’ll enjoy the smooth sailing. And some days I will be sick. I’ll be a warrior. I’ll look for hope and rely on others. And their support will be everything.

 

UOAA Resources:

Emotional Concerns

Sexuality

Living with an Ostomy

 

Top 8 Signs Your Peristomal Skin is Irritated or Damaged

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Learn how to spot peristomal skin irritation and damage.

 

After your ostomy surgery, your healthcare team likely taught you how to care for your peristomal skin and what it should look like when it is healthy. Ideally, it should be intact without irritation, rash, or redness. The skin around your stoma should look just like the skin on the other side of your abdomen, or anywhere else on your body, free of redness, irritation, or damage. Healthy skin should be the rule, not the exception.

However, if your peristomal skin is irritated or damaged, there may be some signs of a peristomal skin complication (PSC), such as:

  1. Discomfort, itching, soreness, or even pain around the stoma
  2. Recurrent leakage under your pouching system or skin barrier
  3. Excessive bleeding of your stoma – it’s normal for your stoma to slightly bleed after you wash it, but the bleeding should resolve quickly
  4. A bulge in the skin around your stoma
  5. Skin color changes from normal pink or red to pale, bluish purple, or black
  6. A rash around the stoma that is red, or red with bumps – this may be due to a skin infection or sensitivity, or even leakage
  7. Wart-like, pimple-like or blister-like bumps under the skin barrier – this type of irritation can happen any time, even if you’ve used the same product for months or years
  8. Any type of wound or scratch on the peristomal skin

Peristomal Skin Complications — Potential causes and what to do

Irritated and damaged peristomal skin can occur for a variety of reasons. It can be caused by anything from a poor-fitting pouching system, to frequent skin barrier changes, to an allergic reaction to anything that contacts the skin, such as soaps or products used to prepare the peristomal skin. Some studies report up to 75 percent of people with an ostomy experience a PSC.* Although it is a common issue, it should not be ignored.

If you experience any signs of a PSC, contact your stoma care nurse. You should work with your healthcare team to determine the exact cause and the appropriate solution.

For more information on maintaining healthy skin and other topics, click here to visit the Hollister Ostomy Learning Center.

 

* Rapp CG, L Richbourg, JM Thorne. Difficulties Experienced by the Ostomate After Hospital Discharge. JWOCN. 2007;34(1):70-79.

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. This information should not be used to seek help in a medical emergency. If you experience a medical emergency, seek medical treatment in person immediately.

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

Alan Thompson: A Law Enforcement Career Not Deterred

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I am Alan Thompson, a New Jersey native who moved with my wife, Vita, to Florida in 2015. I recently joined the Daytona area chapter of the United Ostomy Associations of America; however, I am not a new ostomate, I had ileostomy surgery when I was 30 years old in 1986. I suffered from ulcerative colitis for about four years prior to the surgery and thankfully I never needed serious follow-up medical attention. I view the ileostomy surgery as a positive event in my life that ultimately motivated me to have a successful career in Federal Law Enforcement.

My first symptoms of ulcerative colitis occurred in 1982, when I was a clerk for the Postal Service in Phillipsburg, NJ. The symptoms significantly worsened in 1984 resulting in hospital stays that included hyperalimentation. I was even initially quarantined at a rural New Jersey hospital. The local gastroenterologist did not have a handle on my illness, but thankfully my Mom shared with me an advertisement in Parade magazine that described ulcerative colitis (UC) which matched all my symptoms. I was given Prednisone and Azulfidine to manage the UC. At first the medications worked but ultimately the UC symptoms kept coming back at shorter and more intense intervals. By 1986, I realized that surgery was my only hope. We had two small children and I had nearly exhausted my sick leave with the Postal Service. Vita and my parents, Madeline and Jessie Thompson, were very supportive through this entire ordeal.

Alan Thompson with wife Vita on Capitol Hill in 2017.

I met with Dr. Robert Riether in Allentown, PA. We first tried ileoanal anastomosis surgery in May 1986 at Lehigh Valley Hospital. But by September my condition worsened, and it became clear that an ileostomy was needed. During this tumultuous time, Vita became pregnant with our third child. My surgery was performed on September 19, 1986. I am eternally thankful for Dr. Riether who unfortunately, passed away at a young age in 2006.

Overcoming UC motivated me to reach new heights with my career. I eventually became Superintendent of Postal Operations in Flemington, New Jersey. In 1989, I took a test to become a Postal Inspector, which is a federal law enforcement position that enforces criminal laws related to the U.S. Mail. I passed the test and started the arduous process to become an Inspector which included an intense assessment interview, background checks and a medical physical. At the time, the maximum age for starting a career as a Federal law enforcement agent was 35, which meant that I needed to complete this process and commence a three to four-month training regimen in Potomac, Maryland by March of 1991. Unfortunately, due to budget reasons the training classes were suspended and I “aged out”.
In 1992, the maximum age for commencing a Federal Law Enforcement changed to 37 years old. I now had up to March 1993 to get into a Postal Inspector class. I had another round of background checks and another physical. The local postal doctors knew I had an ileostomy but found me to be in good shape to become an Inspector. I made it! I was slated to start at the Inspection Service Training Academy three days before my 37th Birthday.

To celebrate my potential advancement and spend time together as a family before I left, Vita and I took the kids on a long ride to the Camden, NJ Aquarium on February 26th. We travelled through a snowstorm and came back to a message on the answering machine. A doctor in Washington DC rejected my application because of my ileostomy. I was devastated. I made several calls and wrote letters to the postal hierarchy with little or no response from them. I heard that other Federal Law Enforcement Agency doctors were consulted, and no one had been known to have previously entered Federal Law Enforcement training with an ostomy. Fortunately, I still had my job as a Postal Supervisor.

Over the next several months we fought and secured another physical from a gastroenterologist with Vita’s advocacy on my behalf, the doctor approved of my candidacy to become an Inspector. I believe strongly that letters that we sent to New Jersey Senators Bill Bradley and Frank Lautenberg helped my cause. Our daughter Jessica, at age 11, also wrote a letter to Congresswoman Marge Roukema urging her office to intercede. That letter really turned things around and ultimately, I was granted an exception to the Federal law enforcement maximum age requirement and I was accepted in the next training class that commenced in September of 1993.

Under the heading of things happen for a reason, I learned after my initial rejection that my Mom had been diagnosed with colon cancer in February of 1993. She and my Dad didn’t want to tell me because I was headed to the training academy. My Mom ended up with a colostomy which, with my Dad’s hands on help, she lived with until she passed away in 2006. She always said that my having an ileostomy gave her the courage to handle a colostomy. Obviously, Mom inspired me too!

I passed the training academy and commenced a career in New York City as a Postal Inspector. My assignment was mail theft investigations which required surveillances during all times of the day. Firearms and Defensive Tactics training and annual physicals were also requirements. I also participated in the initial Anthrax investigation and assisted the Secret Service on a protection detail for President Clinton. Having an ileostomy certainly presented some difficulties but it never interfered in my daily activities that included investigating and arresting thieves and testifying on behalf of my agency. Ultimately, I became a Team Leader in New Jersey. In 2006 I transferred over to the USPS Office of Inspector General and continued investigating and supervising mail theft investigations in New Jersey and New York.

At the time of my mandatory retirement in September 2013, I was an Assistant Special Agent in Charge for the last five and a half years of my career. All told I had 33 years with the Postal Service. At no point after I was accepted into the training class in September 1993 until my retirement 20 years later did anyone mention my ileostomy. I am sure that upper management must have known about it, but I let my work speak for the opportunity that was given to me in 1993.

One tip that I can offer is that I quickly recognized foods to avoid and realized early on that weight control was essential in managing my ileostomy. I currently work out at least six days a week riding a bike and doing some weight training. I recently took up golf with low expectations and I love meeting those low expectations. Now as a retiree in Florida, I am grateful that I did not accept the rejection and instead pushed and advocated for the opportunity to demonstrate that my ostomy would not interfere with a career in law enforcement.

Top 5 Ostomy Concerns

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You may have questions about your ostomy, how to care for your stoma, and how to keep living the life you want to live – but you don’t have to figure it out on your own. Hollister Secure Start services offer free support for people living with an ostomy, regardless of the brand of products used. Below are five common questions we are asked from people in the ostomy community like you.

I’m having leakage under my pouching system.

To help solve the issue, we would ask several questions including the current pouching system being used, and the frequency of it being changed. Other questions that would assist us in problem solving might be—How are you preparing your skin before putting on your pouch? If the products are not being properly applied, it could cause adherence issues. Are you cleaning out your pouch or do you put anything in it? Most important, where is the leakage occurring? If it’s always in the same area, evaluate the area for any creases or uneven surfaces such as scar tissue, incisions, or your belly button that may cause an uneven surface under the barrier. If this is the cause, you might try a barrier ring as a filler to even out the surface area. However, make sure that the stoma size is correct in the barrier. You’ll know it’s a correct fit when the barrier fits where the skin and the stoma meet. There should be no skin exposed between the stoma and the opening of the barrier.

 

My skin is irritated and weepy.

This can be a problem for many people with an ostomy. A person should not have skin breakdown, open wounds, or a rash under the barrier. Where exactly is the skin breaking down? How long has it been going on? Is there a situation that may have led to this irritation, such as leakage or was your barrier removed too quickly? What product are you using to prepare your skin for the barrier? Try using stoma powder to absorb moisture from broken skin around the stoma, which may help allow the skin barrier to get better adherence. The cause of the skin irritation needs to be addressed in order to find solutions.

 

I am noticing an odor and I’m concerned others will too.

There can be an odor associated with emptying your pouch versus odor caused by leakage and we need to determine which one you are experiencing. A lubricating deodorant is a great choice for neutralizing the odor of the stool when the pouch is emptied. You might also consider a pouch that has a filter, which neutralizes odor caused by gas in the pouch. Make sure that no stool drainage gets on the outside of your closure system. If neither of these situations is the issue your barrier might be starting to lift off the skin, which can allow odor to escape and can be the beginning of a leakage.

 

My pouching system is not staying on. What can I do?

It may be a problem with your barrier seal. Make sure you have one that you can count on. Everybody is different when it comes to wear time. A good rule of thumb is to determine how many days you can rely on the product to provide a secure seal without experiencing leakage. Monitor the back of the barrier when you change the pouching system. If you see stool or urine from the stoma that has leaked under the barrier, it’s a sign that the barrier seal is compromised and the barrier can begin to lose adherence to the skin. If this occurs then the barrier should be changed. It’s important to change your product on a routine basis, which can be determined by the lack of stoma drainage under the barrier as well as the condition of your skin.

 

It is important that my pouching system is discreet. What can you recommend?

When a pouch fills with gas or drainage it will start to balloon out and might show under clothing. A pouch with a filter can help release the gas. Also consider emptying your pouch when it’s a third to a half full. When a pouch is full it could cause weightiness on the barrier, which might lead to leakage. When it comes to discretion, it’s important that you find the right pouching system for your body. Hollister offers both one- and two-piece systems. For a person with a colostomy or ileostomy, there are drainable and closed-end pouches in various lengths and options of transparent, ultra-clear and beige pouch films. Those with a urostomy can also choose from pouches with transparent, ultra-clear or beige film depending on the product they are using.

 

As always, it’s important to follow up with your healthcare professional or Wound, Ostomy, and Continence Nurse for clinical or medical advice.

 

Have a concern that wasn’t mentioned here?

Check out the helpful tips from Hollister Incorporated, Routine Care of Your Ostomy or go to Hollister.com and navigate to the Ostomy Care Resources to find accessory sheets, helpful brochures and videos.

 

Need someone to talk to?

Hollister Secure Start services is here to help! Call us today at 1.888.808.7456.

 

Nothing contained herein should be considered medical advice. Medical advice can only be provided by an individual’s personal doctor or medical professional.

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

Know Your Ostomy Pouching System & Supplies

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Expect More – Take Control of Your Health Care

Part 3 in Series

By Jeanine Gleba and Keagan Lynggard-Hysell

The Choice is Yours

Having the right ostomy supplies for your individual lifestyle and stoma type plays a huge role in the quality of your life. As a new ostomate I fell victim to the common misconceptions that daily leakage and skin irritation were normal occurrences that came with the territory of having an ostomy, when in reality I was going through unnecessary struggles due to the fact that I wasn’t using the best products for my individual situation.

For those unfamiliar with my story, shortly after my diagnosis of Crohn’s disease in 2005, I was rushed to the Emergency Department with a bowel perforation and underwent my first ostomy surgery. After the operation, I endured many complications due to several different infections and the severity of my disease. I was hospitalized for a consecutive 8 months and would face 5 more surgeries within that first year of my diagnosis, all resulting in either a colostomy or ileostomy. Being in the hospital for essentially the first year of having a stoma, I was limited to the ostomy supplies provided by the hospital. Once I made the transition home and was receiving home health care I continued using the same supplies I had been using in the hospital simply because it was all I had ever known.

For the first few years of living with my ostomy I was isolated by the insecurities fueled by daily pouch leaks, chronic skin irritation, and the fear of experiencing a leak or unexpected odor in public. It wasn’t until I got to the point where my peristomal skin was so excoriated and I could no longer keep a pouch on for longer than a few hours that I finally made an appointment to see a WOC nurse.

During my appointment, not only were my skin issues addressed, but my WOC nurse introduced me to a new ostomy appliance and accessories that would work best for my individual stoma and lifestyle. I was given a product catalog which my WOC nurse had marked with tabs on the new products we used that day so I could order them for the upcoming month as well as any samples of other supplies I was interested in trying in the future. That day, I left my appointment feeling comfortable and confident in my new ostomy appliance.

As time went on, I no longer experienced the daily leakage or skin irritation that I had with my previous appliance, and this drastically improved my quality of life. I was no longer worried about odor, or ruining my clothes, I felt more confident in public and was able to participate in the activities I had once restricted myself from doing out of fear that my ostomy appliance would not stay on properly.

As ostomates, we are fortunate that manufacturers continue to improve our ostomy supplies. For the last 13 years that I have been living with my ostomy I have benefited greatly from product innovation and feel confident in the ostomy appliance I wear today.

As an ostomy patient advocate, I am often invited to share my story with nursing students, WOC nurses, as well as other health care professionals. By providing the patient perspective, I encourage them to educate their patients on the supply options available and that a patient’s ostomy appliance plays a huge role in their everyday life.

It’s important to remember that our stomas may change, our bodies may change, and more often than not- our ostomy supplies may change- and that is okay! The most important thing to remember is to seek out the most optimal pouching appliance for you so that you may live the life you love and want to live.  The most important thing to remember is, whatever works best for you and your individual stoma.

Know that you have Ostomy Product Choices

As listed in the UOAA Patient Bill of Rights, ideally before patients are discharged from the hospital they should be informed of the pouching  system that has been prescribed to them as well as have an understanding of the ostomy supply ordering process.   In addition to the pouching system prescribed, patients should be provided with information on the supply choices available to them once they are home.

When in the hospital, your ostomy supplies are included as a part of your treatment of service. To keep costs down, the hospital only has a small selection of ostomy products from a particular manufacturer vendor that they contract with.  As a result patients are initially limited to whatever ostomy supplies the hospital uses. Know that you are not locked into any pouching system and that you have many choices to find the ideal system for your stoma and lifestyle.  (It should be noted that many patients stay with their initial hospital brand and are very satisfied with these supplies.)

Before you leave the hospital be sure to get the product codes for the specific ostomy supplies used while in the hospital. Request that extra ostomy supplies be sent home with you upon discharge to ensure you have enough on-hand until your first order arrives at home, or until your first home nurse visit if you will be receiving home health care. Don’t forget to ask about being enrolled in one of the discharge programs that are sponsored by ostomy manufacturers.

It is completely normal for your stoma size to change in the weeks following surgery, so what was initially prescribed in the hospital might need to be altered.

As always it is strongly encouraged that you work with an ostomy nurse to find the best products to meet your needs and particular situation. Manufacturers’ also have WOC nurses available to discuss any issues or answer your questions if you do not have a WOC nurse/OMS available in your area. Their services are free of charge and they are dedicated to helping you.

When you are ready, feel free to experiment with different manufacturers  or different types of products. It may be helpful to order a product catalog from your medical supplier, so you can see the different products available and what assortment you have to choose from. Also, either you or a family member can call the manufacturer’s toll free 800 number and request product samples, or ask your supplier for a sample.

Know Your Pouching System

In the ostomy world, it is wonderful to know that there are many different styles and types of pouching systems available, and that manufacturers are continually improving their styles and selections.  Manufacturers listen to ostomy nurses and to patients as they seek to improve the lives of ostomates.

It is good to understand the basics of pouching systems and then advance your knowledge as you become familiar with your own system. Once you gain confidence in the terminology, you can begin to explore options for yourself.  Please use this link to learn about the different types of options available. Another excellent resource is here.

Know Supplier Options

The major manufacturers do not sell supplies directly to ostomates. Furthermore, ostomy supplies are rarely available for purchase in chainstore pharmacies such as CVS or Walgreens. Before you begin ordering ostomy supplies, itis important to do your research (read online reviews too) and carefully consider your options when choosing your supplier (Under Medicare these are known as Durable Medical Equipment providers.). Some things to consider when choosing your supplier: affordability (reasonably priced), reliability (on-time delivery) and reputation (quality service).  You should also know the answers to these questions before deciding on your supplier:

  • Do you want to shop at and support a small local medical/surgical supply house or order from the convenience of home through a large mail-order house (aka national online vendor)? There are pros and cons to each but typically national vendors carry a wider range of products, many (but not all) accept Medicare assignment and due to higher volumes can offer lower pricing.
  • Do they accept your health insurance?
  • What are the prices before and after your deductible is met?
  • Do you have to submit the claim for reimbursement to your insurer or do they directly bill the insurance company for you?
  • Do they carry all of the products that you need for your unique pouching application system?
  • Do they stock and keep current with the latest available in ostomy technology and do they suggest new products?
  • If you are on Medicare, do they “accept assignment”?
  • What is the return policy or how do they handle product issues such as defects or incompatibility?
  • Do they only ship in quantities for 30 days (1 month) or also offer 90 day (3 month)?
  • Do they charge shipping?
  • Do they impose their own quantity limits on supplies?
  • How long does it take to receive orders?
  • Do they help rectify insurance denials and work on appeals?
  • Do they work with your doctor to renew your prescription or if you need a change to your supply order?
  • Do they have personalized customer service with helpful reps knowledgeable about ostomy supplies?
  • Do they offer free ostomy nurse consultations to give you tips and guidance?

Tip: Be sure to have a back-up supplier in case your normal provider has a disruption in service or is waiting for your type of supplies on back-order.

Know what Information is Needed to Order Supplies

It’s helpful before you place an order to have all of the information about your pouching application system ready. The most important thing to know when placing an order is the order number for your particular supplies and accessories. The order number will tell the supplier what kind of pouch and accessories that you use. If you are ordering for the first time or switching suppliers,  be sure to know the type of ostomy appliance and any other accessories that you use. Include the pouching system product, size, and product number. Download the UOAA Know Your Ostomy Supplies Checklist tool to have handy.

Know Your Ostomy Supplies checklist

Conclusion

Knowing your current ostomy appliance and accessories, where and how to purchase them, that options are available in product selection, and that you have a choice in all of these decisions helps to make you in control of your ostomy health care.  In addition, utilizing the resources available to you through your ostomy manufacturers, suppliers, and ostomy nurses will help provide the best experience with your supplies.

It is important that you are able to advocate for the right ostomy supplies that work best for you and your individual stoma so that you can feel confident and live well with your ostomy.

Please note: UOAA does not endorse particular products, manufacturers, or suppliers, and is not responsible for any content expressed in sponsor websites.

Beauty and the Ostomy: Total Skin Health

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Skin Hydration Beauty Tips for Living with an Ileostomy

BY ELLYN MANTELL

As a self-avowed makeup and skin care junkie, I strongly believe that looking good is greatly related to feeling good. In fact, makeup and attention to my skin has helped me to get through the years of misery that led to my eventual ileostomy four years ago. As I reflect back, I remember asking my husband to search my handbag for lip gloss when visiting me in the hospital with peritonitis, as soon as I was brought into my room post-surgeries and the like. As soon as I felt well enough to walk around my house, I was applying my skin care regimen and blush, so everyone knew I was fighting my way back. My suitcase, always at the ready for another surgery, contained my stash of the perfect lip color to brighten my pale face for visitors, including my physicians making early morning rounds. Somewhere along the way, I recognized that my ability to heal had a great deal to do with the colorful smile I could put on my face!

It is my belief that although we ostomates can live a very full and fulfilling life, some things will just take a little extra attention, and looking our best may be one of those areas. With that in mind, I am planning on contributing information about beauty and fashion, and have named my blog/post/column Beauty and the Ostomy! Look for it in the next Phoenix Ostomy Magazine. In our case, the ostomy is not “the beast” but the beautiful incarnation of our body to heal itself and our spirit, and our appreciation of our stomas is parallel to Belle’s appreciation for her Beast!

What does an ostomy do to our system that impacts our facial appearance, you may be wondering? I believe that our loss of fluids, particularly for ileostomates, is major, so we need to talk about moisture and hydration. Although I am always looking for new products to rejuvenate and enhance the aging skin, I am very aware that all ostomates need to be mindful of how to get well-needed moisture and hydration into the skin, regardless of our age.

From childhood, my skin has always been on the dry side, and I accepted that reality into adulthood. But a very lovely aesthetician informed me that with proper treatment, I could have much healthier skin, since skin that holds moisture, has more of a chance of fighting illness. The glow of healthy skin reveals a canvas ready to be painted or just admired by itself. Whether valid or not, I became determined to make some important changes, and I truly believe good skin care yields results, and that is wonderful!

How Do We Absorb this Very Valuable and Sometimes Unattainable Moisture?

Like anything worth doing, there are steps to absorbing moisture. First, we must drink lots of fluids, primarily water. Many beverages do not add hydration, and may even leach hydration from our bodies. Some believe coffee, tea and soft drinks are culprits. I believe, however, that in moderation, they are fine, as long as lots of water is added to the daily diet. I love hot water, with or without lemon, and drink it all day, along with cold water, with or without lemon. UOAA’s Diet & Nutrition Guide even has recipes for hydration drinks and more ostomate specific information. You may be interested to know that fatigue is lessened, especially midday, by binging on water, rather than a fattening treat.

In caring for our skin, ostomates should use a gentle cleanser most nights, but 2-3 times a week, an exfoliant is a great addition to the routine. The exfoliant can be chemical (vitamin c or acids) or natural, such as grainy or mealy. The skin will glow and the new soft skin will let you know your skin is ready to receive moisture!

Serums are a vehicle of introducing treatment to the skin, and can add vitamins, minerals, usable acids, etc. Every day I read more and more about the addition of serums to beauty regimens, and since they are light and easy to apply, I use them morning and night.

Next, we need to use moisturizing products, and there is a myriad from which to choose. Lotions are lightweight, and wonderful for younger skin, which requires less hydration and may be producing much-needed oils, whereas creams are recommended for the aging skin.

Lastly, sunscreen every day, and oh, by the way, sunscreen, even when it is cloudy! The debates go on about what is the appropriate designated number of SPF (Sun Protection Factor) but my sources tell me 30-70 is best, taking into consideration that any less than 30 isn’t worth the product, and any higher number than 70 is just loading on more chemicals. And if we are in the sun for a long period of time, we should reapply as the day goes on. Be sure to wash off sunscreen and all makeup before bed, apply a night cream for optimal hydration…and let your skin breathe and rebuild during sleep!

(editor’s note: Peristomal skin issues are a whole different issue beyond beauty regiments and critical to medical wellbeing the link above has more information on that topic.)

Please write to me at ellynmantell@aol.com with any beauty and fashion questions you have. I am very interested in what interests YOU!

Tips for a Successful Recovery after Ostomy Surgery

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By Diana Gallagher, MS, RN, CWOCN, CFCN – Facilitator for the NWA Ostomy Support Group

updated 11/3/2022

For many, ostomy surgery is lifesaving but their initial feelings on living life with an ostomy are negative. For individuals with years of unresolved incontinence or inflammatory bowel disease, however, life after surgery is frequently viewed as a positive improvement. For them, an ostomy is the promise of a return to a normal life.

As you prepare for surgery, or recover from emergency surgery, the following are important tips to help you transition into your new life and embrace living with an ostomy.

Select a surgeon with valuable experience in the type of surgery that you are facing. General surgeons as well as specialty surgeons can perform ostomy surgery. Specialty surgeons are those who have completed additional education, training, and fellowships within the specialty. These surgeons will be identified as Colorectal or Urology Surgeons. You can find a local physician through the website for the American Society of Colorectal Surgeons or by contacting the American Urological Association.

See an Ostomy Nurse. BEFORE surgery, your surgeon may refer you to a specialty nurse, like a Certified Wound Ostomy and Continence Nurse (CWOCN). If not, you will need to find a specialty nurse. This nurse will help ease your transition into living with an ostomy. Although education may be provided during your hospital stay it can be difficult to focus and remember because of anesthesia, surgical pain and stress. Your ostomy specialist will provide comprehensive education including practice pouch changes before surgery. In addition, he/she will identify and mark the best location for your ostomy. This is important because during surgery it is difficult for your surgeon to know where the waistband of your pants sits, where creases or irregularities exist and other special considerations to consider when selecting that optimal site.

Attend a United Ostomy Associations of America (UOAA) affiliated support group (ASG) meeting in your community if possible. You may think that you do not need a support group or feel that you are the type of person who does not feel comfortable in a group setting. Put those feelings aside; listening in the beginning is a good start. Join your local group, even if you don’t initially find someone your age with a similar story, there is a lot to learn. UOAA affiliated support groups are truly one of the BEST places to obtain the necessary education, helpful hints, support, and resources and many groups offer online meetings. Don’t feel that you are alone.

For more details search this website for trusted ostomy information including a New Ostomy Patient Guide, specifics on the major ostomy types, ileostomy, colostomy, urostomy and resources on topics such as diet and nutrition, sexuality emotional concerns, IBD and ostomy and much more.

FAQs

 

Determine which supplies will work best for you. Learn about the different ostomy pouching systems. In the beginning, you will most likely receive sample products from a number of companies. It is helpful to keep the 2 piece products from each manufacturer separated; wafers from one company will not necessarily snap onto a pouch from another company. The sampling program will help you try a variety of products to learn which ones work best for you.

Order your regular supplies. Once you know what you like best, an order can be placed through a distributor. There are countless distributors to choose from and depending on insurance, your supplies can be delivered monthly or every three months. The first time that you order, it is logical to order a month’s worth of supplies. As your expertise develops, you may fine-tune your list. Insurance normally pays 80% of supplies that are medically appropriate. If you have a secondary plan, the remaining 20% may be covered. Check for a list of the established limits for each product. Reorder supplies so that you are never without the supplies that you need.

Select a place to keep your ostomy supplies organized. Many people keep their basic supplies in a bathroom drawer, others buy a plastic organizer with several drawers that can be moved about. Excess supplies can be stored in a closet but regardless of where you choose to keep supplies, it is best to avoid temperature extremes and high levels of humidity.

Be prepared. In addition to the extra supplies that you keep on hand at home, always keep a small pouch with all the supplies necessary for a complete change with you. Like your other supplies, these should be kept away from temperature extremes and humidity. Hopefully, you will rarely need to make an unplanned change, but being prepared, makes most ostomates feel secure and confident. If you anticipate an occasional return to the hospital, keep a bag packed with your preferred supplies. The hospital may not have the brands that work best for you.

Promptly consult your ostomy specialist for any problems. This might be a decrease in normal wear time, a change in your stoma, or a problem with your peristomal skin. A good practice for all is to hydrate properly to avoid complications.

Recover from surgery and LIVE life to the fullest. Having an ostomy does not change who you are or what you are able to do. After recovery, work to strengthen your abdominal muscles to help prevent hernia risk and enjoy all your old activities including swimming. Every October UOAA holds the Run for Resilience Ostomy 5k where people of all ages prove living with an ostomy does not need to be limiting.

Advocate for yourself. You will find that not everyone is knowledgeable about ostomies. Educate others when possible but always be willing to advocate for yourself and others. You can also help to advocate on the national level by supporting UOAA’s advocacy program and taking part in events like Ostomy Awareness Day held on the first Saturday in October. UOAA works toward a society where people with ostomies and intestinal or urinary diversions are universally accepted and supported socially, economically, medically, and psychologically.

Share your experience and tell your story. Your story has the power to help others as they begin their journey. Connect with others in person or online and offer to help the next person who has this life-saving surgery.

 

For updates on the latest ostomy resources,blogs, events and advocacy sign-up for UOAA’s monthly E-Newsletter or become a part of the official UOAA community with a national membership. For more information contact United Ostomy Associations of America at  info@ostomy.org or 1-800-826-0826.

How to Change Your Ostomy Pouch

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Basic Tips for Changing your Ostomy Appliance

 

By Wendy Lueder

 

If you feel overwhelmed by changing your appliance, please know that your feelings of anxiety will diminish over time. I know it can be difficult at first but it will become more routine with practice. Knowing just what you’re going to do can be helpful so here are some basic guidelines that you may wish to use.

  1. To start, wash your hands!
  2. Set out your equipment within easy reach on your bathroom countertop. You will need: an old bath towel on the floor and Kleenex tissues (without any lotion!) to catch any unwanted output while changing; plastic bags for clean-up; a washcloth if you don’t shower; clean bath towel; pencil and stoma measuring guide; scissors or x-acto knife if you don’t use the new “moldable” skin barrier wafers; a skin barrier wafer; Stomahesive or HolliHesive paste or product such as Eakin Cohesive Seals (preferred by this writer) a new pouch; a tail closure if you use a drainable pouch that doesn’t have the built-in Velcro closure ; hair dryer and finally, a swivel make-up mirror.
  3. Empty your pouch as normal. DO NOT rinse your pouch out when emptying. This only reduces adhesion. If you get this advice, ignore it. Rinsing out pouches is an obsolete suggestion that is totally bothersome and no longer valid for modern ostomy equipment. Empty your pouch while sitting comfortably and normally on the toilet. Put some toilet paper in the bowl first to avoid any splashing. If you use a tail clip, carry an extra one with you in case you accidentally flush yours down the toilet
  4. While holding a corner of the tape that holds your appliance to your body, gently push your skin in toward your body to remove the appliance. Pushing your skin inward is far less harsh on it than if you pull the appliance off and away. Try it and feel the difference. You only need to use an adhesive remover if: A) you have worn the skin barrier wafer a very short time and the adhesion is still very strong and/or B) your skin is irritated or tender and can be easily damaged. I personally prefer the spray adhesive removers as they leave less residue. However, I only use them if I have worn the barrier for less than two days between changes.
  5. Put the old pouch, wafer and other waste (not the tail clip!) into a plastic bag for disposal. Sealable sandwich bags work great.
  6. Clean the skin around the stoma with a washcloth and warm water or by getting into the shower and using your hands. Be gentle. Do not use scented or cream soaps as they will diminish adhesion of your skin barrier. Any waste coming out of the stoma will merely wash down the drain.
  7. Pat your skin dry with Kleenex and for best results use a hair-dryer on low setting to complete the job. The cleaner and dryer your skin is the better your skin barrier will adhere.

Measure your stoma with a measuring guide (usually supplied in the box with your skin barrier wafers) using the make-up mirror placed on the countertop to get a better look. This is especially important if your surgery is recent as your stoma will become smaller over a period of months.

For all Skin Barriers except StomaHesive Wafers measure right up next to the stoma. For StomaHesive Wafers add an eighth of an inch space between the stoma and the wafer hole. Only this brand of wafer is “stiff” and could damage your stoma if it is too close. All other types of skin barrier wafers are more flexible and won’t damage the stoma if placed right up next to it. If your stoma is oval take two measurements, one each of the larger and smaller diameters.

  1. Trace the correct size and shape onto the back of the wafer with the starter hole in the middle. Cut out the hole either with your scissors or more easily by using an x-acto knife.

There are new moldable skin barrier wafers that you do not need to cut but merely manipulate to create the correct size opening. This is especially helpful if your stoma is oval and is highly recommended by this writer. Follow the manufacturer’s directions to create the perfect size opening for your unique stoma.

  1. If you use paste, peel the paper from the wafer and apply the paste only by the width of the tubes opening around the cut circle in the wafer. Allow alcohol to evaporate for approximately thirty seconds. Unfortunately paste is poorly named. Paste is really merely caulking and has no adhesive property.

If greater protection is needed than paste can afford (such as for ileostomates who have a caustic output), try using an Eakin Cohesive Seal or similar product instead of paste. these seals have the consistency of silly putty, and lasts far longer and will not wash away from heavy output.

Small dabs of paste or small pieces of Eakin Seals are great to fill any dimples in your skin that you may have. The flatter the surface of your skin around the stoma, the better the seal. Do fill in those dimples if you have them.

  1. While leaning slightly backwards to smooth out your skin, remove paper backing from the skin barrier and apply it slowly and carefully over the stoma. Use the magnifying side of your mirror to see that you are correctly setting it in place. Remove the paper backing from the surrounding tape and smooth it out on your skin being careful not to create any wrinkles as they may latter dig into your skin.
  2. If you use a two-piece system, snap the new pouch onto the wafer. Never tug down on the appliance to see if it is secure. Instead, feel with your finger all around the “Tupperware” closure to make sure the pouch and wafer are as close to each other as can be. If you detect any space, push the pouch toward your body until you feel it close the gap. You may hear a series of clicks as you apply the pouch.
  3. If you use a tail clip, apply now. Hold your appliance in place with your hand for a full five minutes to ensure a secure seal. All skin adhesives are more effective if held in place after first application as the heat from your hand improves adhesion. If your stoma is flush to your skin, use a skin barrier wafer with built-in convexity. The convexity will gently push the skin toward your body around the stoma giving it some extra length. When the stoma thus protrudes a bit more, its output goes more easily into the pouch. The new adhesives and skin barrier wafers stay put well for days.

Some bleeding is normal when touching your stoma, but report any unusual color, size, shape, or bleeding to your Ostomy nurse. Try different products. Call your Ostomy nurse or ostomy supply companies and ask for free samples. You may have to shop around to find products that leave you feeling comfortable and secure. You should be no more aware of your appliance than you are of your underwear. Always follow any special instructions provided by your health care professional as they know your specific situation better than any general guidelines an article such as this could provide

If your abdomen is very hairy, you may want to gently shave off the hair under your skin barrier wafer. Be careful not to cut or damage your skin.

These suggestions are gleaned from years of helping ostomates cope and are just that, suggestions. They come from over thirty-five years of experience, but are in fact just the input from a layperson. I’m not a nurse, I’m an ostomate. Your healthcare professionals always know best and you need to follow their advice, not mine.
Bottom line: Your appliance should be comfortable, stay on for at least a few days between changes, odor-free (not odor resistant) and leak extremely rarely. If not, go see an ostomy nurse and change your routine until you find the products that work well for you. Best of all, studies done at Duke University verify that the longer you’ve been an ostomate, the better it gets. Problems do diminish with time and experience. You should be able to forget you’re an ostomate and get on with doing the things you really enjoy. There’s no stopping you.

Additional Tips for ileostomates only:

Try changing first thing in the morning when output is at its slowest. Many ileostomates report that eating four to five marshmallows right before changing stops all output from the stoma for several minutes. I personally have found this to be true. As marshmallows are pure sugar, please don’t try this if you’re a diabetic.
As the output for ileostomies is far more caustic than for colostomates and urostomates, don’t put off changing your appliance when needed. There are two indications you need to change, one is “itching” and the other is a “burning” sensation. If you itch, it may be merely dehydration. Drink a glass of water. If the itching continues, you need to change. If you feel a burning sensation on the skin around the stoma, change as soon as possible. The output from your ileostomy is caustic and will damage your skin. Avoid the vicious cycle of damaged skin -> poor adhesion due to damaged skin -> leakage -> damaged skin.