By Ellyn Mantell

Welcome to my fantasy.

We all have our fantasies, so come along with me as I describe one of mine…new ostomates (those with ileostomy, colostomy or urostomy, all having had stoma surgery) would begin their adjustment to their new life with all of their questions answered, they would have knowledge and be welcomed into an Ostomy Support Group, they would have a connection with a Wound, Ostomy, and Continence Nurse (WOCN) and they would recognize what a gift, what a lifesaver an ostomy is.

My concern is that this is not the usual for ostomates, either new or even those who have them for many years. In New Jersey, particularly where I live, there are many resources available, and yet, even in our sophisticated arena, many ostomates leave the hospital uninformed and underserved. Prior to Covid-19, I visited patients in the hospital or in rehab facilities to answer their questions. I brought journals and pens so they could write their emotions, concerns, and observations, and refer back to their notes as they made progress. I am so anxious to return to that important undertaking as soon as it is safe to do so.

When I had my surgery in March of 2014, my surgeon told me I would be in the hospital for 5-7 days. However, I felt so well, so quickly, that I was able to leave 4 days later. That was pushing the envelope, but I was so used to recovering from abdominal surgeries, having had 22 before that, my ability to go into recovery mode was well-entrenched. The majority of patients need so much more time, and now, even 4 days is more than they are offered.

Back to my fantasy, and my pipe dream of a great transition for new ostomates:

How can questions be answered, and knowledge gained as needed? 

The majority of ostomies, even those performed in an emergent situation, require marking the abdomen for placement of the stoma (opening.) That is typically done by the Wound, Ostomy, and Continence Nurse (WOCN) and that is the person who comes to the patient’s room post-op to begin to prepare the ostomate for life at home. In an ideal world, the WOC nurse has written information to share, which once home, will make more sense, and provides contact information for any questions. Additionally, the ostomate is put in touch with the United Ostomy Associations of America to become part of a bigger group of kindred people.

How do we find Ostomy Support Groups in our area?

I am involved in three Support Groups, becoming president of one already formed when I had my ileostomy, and then worked with WOC nurses at two other hospitals in the area to form new ones. Until Covid hit, these were growing so nicely. But we are meeting virtually now, and staying as close as possible, knowing that the day will come when we are back together. It is wonderful to see “my people” who share my concerns, experiences and fears and accomplishments. We help each other in countless ways. People reach out to me through the WOC nurses in the area, United Ostomy Associations of America, The Phoenix Magazine, the American Cancer Society, three hospitals, and through word of mouth. Because I am so open and revealing about my ileostomy and Lily, my stoma, I believe my name pops into the minds of people when they know someone in need.

Ostomies are Lifesavers! “Read all about it!”

An ostomy provides the gift of health for many, many medical situations, including cancer, ulcerative colitis, Crohn’s disease, diverticulitis, motility issues and devastating organ injury. We live in good times for our supplies and the ability to try new and innovative appliances and accessories. The Phoenix Magazine is a great resource for all, and assists in wading through the confusion many feel. Motivational stories and practical guidance round out the offerings.

A final word about those we call our Angels…the Wound and Ostomy Nurses.

Establish a relationship with one, and if there is an Ostomy Clinic or Ostomy Center in your area, use it! These nurses are your connection to properly-fitting appliances, the correct supplies and accessories, questions and personal support, as well as the ability to refer to a Support Group. More and more are entering the private sector and providing services such as home visits, particularly to those who cannot travel to a clinic or office, and your surgeon may even have one in the office to help navigate the transition to life as an ostomate. We call our WOC nurses our Angels, and that is exactly what they are, ladies and gentlemen with big wings to support us!

 

Ellyn Mantell is a UOAA advocate and Affiliated Support Group leader from New Jersey. You can follow her personal blog at morethanmyostomy

A convex ostomy skin barrier can help prevent output leakage and skin issues. Unfortunately, some misconceptions about convexity may keep people with ostomies from using it.

A convex pouching system refers to the shape of the back of the ostomy skin barrier – the side that goes against your skin. A convex skin barrier is not flat, rather it is curved or dome shaped. Using an integrated convex skin barrier is often referred to as “adding convexity” to a pouching system. This convexity provides a gentle push on the belly, allowing the stoma to protrude up and outward. This can help output go directly into the pouch and not under the skin barrier (which can cause a leak).

Common reasons for using convexity are to prevent leakage and related skin issues, and to avoid having to change the pouching system more frequently. If your pouching routine or body weight has changed, chances are it’s time to consider using a convex skin barrier.

Flat Skin Barrier

Convex Skin Barrier

 

 

 

 

 

 

 

 

 

 

 

Below are a few myths or misconceptions about using convexity:

  1. All convexity is the same

Convexity should be chosen and customized based on your specific stoma and body shape. There are two main types of convexity: soft and firm. Soft convexity is flexible and conforms to your body as you move. Firm convexity is rigid and provides firm support around your stoma to help it stick out. In most cases, soft convex skin barriers are used on firmer abdomens, and firm convex skin barriers work best on softer abdomens. Someone may have a bad experience with convexity, only to learn that it was the wrong type for their stoma, body shape, or output. It’s important to know that the convex skin barrier opening needs to be close to the stoma in order to help the stoma protrude. This will also help reduce the possibility of leakage.

  1. A convex skin barrier is uncomfortable or even painful

If your convex skin barrier is causing pain or discomfort, you are not wearing the right type of convexity. Based on your needs, and with guidance from a healthcare professional, consider trying some of the many convex barrier options available and see if they make a difference. The importance of addressing leakage should outweigh the fear of trying something different. Use the health of the skin around your stoma as a barometer. If your skin looks good, and you are not leaking, you’ll know you’re using the right type of ostomy skin barrier for a good fit.

  1. I have to wait to use convexity

You don’t need to wait a certain amount of time before using a convex skin barrier. Each person is different. Some may need to add convexity immediately after surgery, while others may not need to add it at all. There is no concrete rule, and it depends on the type of stoma you have and how well it protrudes. If your belly is soft enough, you can start right away. Again, it’s important to prevent leakage while keeping the skin around your stoma healthy, and trying convexity could help accomplish both goals.

  1. If my stoma is level with my skin, I need a convex skin barrier

In most cases this is true, but choosing a type of convexity can depend on your stoma output. There are always exceptions and everyone has different experiences. For example, someone who has a colostomy with formed stool and regular bowel habits may not need to use convexity, even if their stoma is flush to the skin. That’s because formed stool is unlikely to leak underneath the skin barrier. On the other hand, more liquid output can increase the chances of leakage.

Consider trying a convex ostomy skin barrier to see if it will help prevent leakage and skin issues, and increase your pouching system wear time (i.e., how long you can wear your skin barrier before it fails). Convex skin barriers come in both pre-cut and cut-to-fit options and are covered by most insurance plans. An ostomy nurse can help determine which type of convexity is right for you and when you should use it.

 

For more information on skin barrier convexity and other resources, visit the Hollister Ostomy Learning Center.

 

Terri Cobb earned her RN degree in 1991 and became a board-certified CWOCN in 2011. Currently on staff at the Cleveland Clinic in Cleveland, Ohio, her responsibilities include caring for ostomy patients of all age groups from the neonate and beyond. Terri interacts with patients in all phases of their journey from pre-op, to immediate post-op and through follow-up care. Financial Disclosure: Terri received compensation from Hollister Incorporated for her contributions to this article.

 

Editor’s note: This 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.

 

 

Ostomy Nurse Anita joins host Elaine O’Rourke (an ostomate and IBD patient) to discuss the different challenges that ostomates (ileostomy, colostomy) face with output. Learn what you can do about pancaking, high output, different consistencies, bag ballooning up, ostomy pouch options, filters or no filters, open and closed-end pouches and much more.

A good dose of humor is included! Nurse Anita, RN CWOCN offers private consultation: www.anitanurse.com.

 

 

Elaine works directly with people with Ostomies, Crohn’s Disease, Ulcerative Colitis. If you are struggling please reach out to her. Grab the free guide via www.ElaineOrourke.com (under IBD or Ostomy programs) “3 simple ways to eliminate fears about your ostomy” or “Hidden Causes: 5 mistakes even well informed people with IBD make”

By Molly Atwater

Ah, November… the leaves are changing colors and falling from the trees, the jack-o-lanterns have been put away and exchanged for candy canes, and the Black Friday sales emails have started trickling into our inboxes. That can only mean one thing: the holiday season is upon us! It’s safe to say that our celebrations in 2020 will be a little different than what we’re used to. A non-traditional Thanksgiving or holiday gathering can be hard on all of us now that the CDC is suggesting limiting gatherings to just those in your household. (They’ve got some suggestions on safer alternatives to consider here.) Regardless of how we’ll celebrate, there are still lots of cookies to bake, memories to make, and laughs to share. But what does that mean for those of us with ostomies? The holiday season is inherently stressful, but adding medical issues on top can feel overwhelming. But fear not – with a little extra planning and mindfulness, you can handle the next few weeks like a pro. Here are a few tips and tricks to make sure you have a HAPPY holiday!

Travel Prepared

If you must travel during this time, make sure you pack more than enough supplies. Odds are you won’t need all of them, but it’s always better to be safe than sorry. My rule is to figure out how many bag changes I expect to perform while I am away, and then pack double that amount of supplies.  That way, even if I have to do extra bag changes, I never have to worry about running out of my necessities. I also pack in-bag odor reducers and a small bathroom aerosol spray so I don’t have to feel self-conscious about any expected or unexpected ostomy smells.

If your holiday plans include traveling by airplane, pack your supplies in your carry-on. Airlines are notorious for misplacing luggage, so keeping your supplies with you at all times can save you a lot of worrying. Also, go ahead and download one of the UOAA TSA advocacy cards to make your security checkpoint experience easier. For even more peace of mind contact TSA Cares 72 hours before your flight for additional assitence. Don’t forget to throw an empty water bottle in your carry-on to fill up once you’re at your gate to prevent dehydration. 

Enjoy Meals with Peace of Mind

When it comes to eating, everyone’s post-ostomy diets are different. For some, ostomy surgery can open up foods that were previously off-limits, while for others, options might be more limited. Regardless of your digestive system’s abilities, take the opportunity to make your meals a little more festive! If you can eat things you’ve missed for a while, go for it! But if you’re dealing with more restrictions, all is not lost. Maybe you could make macaroni and cheese with turkey-shaped pasta or try your hand at some homemade applesauce.

Chew, chew, chew! A lot of the foods we eat over the holidays are out of our normal diet, so give your body some help with digesting. It’s not a ton of fun to step away from the festivities to deal with a blockage! If at all possible, it’s also helpful to stay on your normal eating schedule. With all of the uncertainties that come with the holidays, having one steady touchstone can really help.

Alcohol is a staple for some families’ celebrations, but it can be very dehydrating. That’s an issue for everyone, but it’s crucial for those of us with ostomies. Try to alternate your cocktails with a glass of water or your electrolyte beverage of choice. Don’t forget that with the weather cooling down, warm drinks like tea also count as hydration!

Trust Your Emotions

The holidays can be emotionally challenging for everyone, but for those dealing with chronic conditions, things may feel a little tougher.  If you are feeling blue, that is ok! All emotions are valid, so give yourself the time and space to feel sad or angry and to grieve what was.  But it’s also a great time of year to reflect on the things that you are grateful for, whether that’s your support system, your health, or even just for making it through this crazy year.

Some people don’t mind talking about their medical conditions, but if you’d rather not focus on your ostomy this holiday season, think of some ways to steer the conversation in a different direction. The questions people ask typically come from a good place, but you are fully entitled to a few hours without thinking about your health.  Brainstorming quick responses or coming up with other topics to bring up instead can help you feel more prepared if you do find yourself in a situation where you want a quick “out.”

Listen to Your Body

Dealing with chronic health conditions is exhausting, and putting on a smile when you aren’t feeling great makes it that much harder. Finding others who can accept and acknowledge that things are hard instead of offering common and well-meaning phrases like “it will get better” and “stay strong” can be extremely helpful and validating. Nobody wants to be a Scrooge during this time of year, but having a safe space where you can feel seen and heard can bring you back into the celebration faster than wallowing alone.

Find an outfit that makes you feel AMAZING with your ostomy! Since a lot of us have spent more time in sweatpants than ever before thanks to quarantine, take the opportunity to wear something that makes you feel confident. It doesn’t have to be fancy – maybe just your favorite pair of pajamas or an extra-festive mask!

Get Creative

If you can’t participate in some of your favorite holiday traditions, now is the time to get creative! There might be ways to augment some existing traditions, like making different cookies without hard-to-digest ingredients, or you can create brand-new ones.  Maybe it’s time to introduce a holiday movie marathon or invite your friends to join you on a wintery walk through the woods! Whatever you choose to do, I encourage you to find an activity that brings you joy.

The holidays might feel tricky to navigate, but with a little extra preparation, you can remove ostomy stress from your list of worries.  Whether you’re a new ostomate or a seasoned pro, I encourage you to find your own tricks for making this time of year as merry as possible. From all of us here at UOAA, we wish you a happy and healthy holiday season!

 

Molly Atwater is UOAA’s Director of Young Adult Outreach. After struggling with chronic constipation for decades caused by a collagen deficiency disorder, she underwent ileostomy surgery in June 2016. In addition to serving with the UOAA, Molly runs a social media account (“MollyOllyOstomy”) that aims to teach her more than 20,000 followers about life with an ostomy and other chronic illnesses. She lives in Northern Virginia with her fiancé, Thomas.

Excerpt from the story One Man’s Journey From Bladder Cancer

The day for my fourth cystoscopy had finally arrived. My doctor smiled and asked if I was ready for this exam. With a nod from me, turned off the lights, and guided the instrument into my body. He reiterated that there were cells in my bladder. I felt a large lump in my throat, and my face began to flush. Because these cells had been so aggressive and returned after the three previous treatments, there were no additional medications that could be used. He explained there were several other choices: (1) do nothing, (2) having a neo-bladder constructed, and (3) urostomy surgery. We would discuss these options in a few weeks.

Note: Each person is unique, and so are the methods used to treat this cancer.

An appointment was made for this consultation, and within two weeks I would see my doctor. In the interim, I had given careful thought to all three options. Doing nothing could be taking a huge risk. If the cells should travel into the muscles of the bladder, my life would definitely be in jeopardy. There was a chance these cells might metastasize to other organs of my body. We could wait and see if they did travel. However, this was not a chance I wanted to take. A neo-bladder, created from my intestines, would allow me to still urinate through my penis, but required much effort to adjust to, and a longer recovery time. It also brought with it the possibility of incontinence, or not working properly, necessitating additional surgery. The neo-bladder is also a relatively new form of treatment that many urologists choose not to use.

My final option was to have my bladder and prostate gland removed surgically. Compared to the construction of a neo-bladder, the recovery time was shorter. It had been proven to be successful in eliminating cancer and allowing patients to resume normal lives. This return to normalcy would occur after an initial adjustment period when the patient learns how to use and care for the Ostomy Pouch. Over time this would become routine.

After more consultation… My faith and confidence in my physician and in my decision to receive “external plumbing” (the ostomy pouch), gave me peace of mind up to the day of surgery.

Road to Recovery

My hospitalization would soon be terminating. However, before leaving I insisted on seeing the Ostomy Clinical Nurse Specialist (CNS) making sure that I felt confident applying and removing my ostomy pouch. Even though the hospital wanted to discharge me, I was persistent. Managing my ostomy pouch will be a lifelong endeavor. The CNS reviewed the process of changing the pouch and demonstrated it several times. Her patience, warm smile and reassurance made me feel capable of handling this task on my own and confident to be discharged from the hospital. (Keep in mind that it is a patient’s right to determine whether or not he/she is ready to leave the hospital)

On My Own

After then spending time in a rehabilitation facility It was great to finally be home, and feel independent. As a widower, I was fortunate enough to have met a woman whose companionship helped to avoid a great deal of loneliness. Had she not been there, returning to my empty house would have heightened my feeling of isolation. Thinking back, yes, I certainly could have managed by myself. However, her presence made my transition from the hospital, rehabilitation facility, to home that much easier. Many patients who are single, or don’t have family/friends to support them when returning home, can find this a mixed blessing. They may feel independent, yet experience loneliness. Anxiety may occur over fear they may lack the ability to manage by themselves. The services of a visiting nurse, physical/occupational therapist, or a mental health professional can be provided to alleviate these concerns. The availability of these services were discussed during my exit conference from the rehabilitation center.

Adjustments To Be Made

Anxiety arose as I continued on my journey to recovery. The first of these emotional hurdles, especially for newbies is attaching an ostomy bag securely, preventing leakage. Having a spare pouch and supplies, along with a change of clothes, solves this concern. My medical supplier provided a small pouch to carry these items. Initially, I had many questions about the ostomy pouch. However, when various concerns arose, (getting this device on properly, leaks, or supplies), my nurse responded to these questions promptly and gave me the reassurance I needed. Trust me, I continued to have questions for months after my surgery. By that time I built up enough confidence in using this device, and it became more routine. Ostomy nurses serve as a great resource. They also recommended a monthly support group. Knowing what others have gone through, and how they dealt with their post-surgical life, can be very helpful.

Thanks to my Ostomy Clinical Nurse Specialist (CNS), two additional Leak Prevention Supplies (LPS) were suggested: (1) A belt attaching to both sides of the bag to hold the wafer and pouch more securely in place, and (2) A U-shaped elastic barrier fitting around the bottom of the adhesive which attaches to your body and wafer. These items can be requested from your medical supplier, and may help give some peace of mind. These remedies have worked for me. Timing for emptying the pouch is another adjustment. This usually occurs when the bag is 1/3 to 1/2 full. For me, this point is reached hourly, possibly because my kidneys are located in the front of my body. For others, this may occur up to 2 1/2 hours. However, empty points are individualized.

Timing this process initially limited me from going places beyond one hour. For many of us, noting the location of bathrooms is something we typically make prior to leaving for a destination. Even before surgery, I spotted the location of the bathrooms. If you think about it, for many people who still have their bladder, nature calls them frequently. Whenever this need arises, they go on “bathroom alert.” We don’t have this urgency or stress of finding a bathroom as they do. We can anticipate when to empty our pouch and can plan our pit stops in advance. This is a positive of having an ostomy pouch. Think about that.

Ways to judge the timing of emptying the pouch also become routine. Checking your watch, cell phone, or clock helps the timing factor. Generally, If I were to go to a restaurant, at most, twenty minutes away from home, I’m able to wait until I have eaten my meal before emptying my bag. For others, gauging the timing may involve the length of events (movies, shows, etc.) or the time it takes to reach a destination. It’s an awareness that you will develop. During your recovery period, fatigue could be an issue. Initially, I tried to do too much, too soon. Don’t fight this feeling. You don’t have to prove anything to yourself or anyone else, about how well you are recovering. Listen to your body. If it’s telling you to rest, do that. Remember, the fatigue lessens over time, and your strength does return. For me, it took approximately four months.

Don’t Try to push yourself. If you do you might become frustrated and that doesn’t help. In fact it may extend your recovery time.

Pouch Changing 101

I had devised my own schedule for changing the ostomy pouch — every Friday and Monday. A rule of thumb is to change it every three-four days. You will decide what days, how often, as well as choosing a medical supplier that offers products that best suits your needs. After leaving rehab, one company had offered supplies to me. If you, like me, prefer their products, then stick with them. If not, check other distributors and request samples from them. Many people experiment with several companies before finding the products that work for them.

After experiencing a few glitches, (ie; tearing a pouch, or unable to remove the protective piece covering the wafer),you realize some possibly could be avoided in the future. Being aware of these mishaps helps to avoid future problems, and will make the process of changing your bag go more smoothly. In addition, once you have repeatedly gone through this part of your life without a bladder” it doesn’t require too much thinking or time. Perhaps this thought may be difficult to believe, but it does happen.

Don’t get bent out of shape when things don’t go as planned. Use these experiences as problems to be solved.

You may find other obstacles to overcome. The good news, once these challenges are met and conquered, they make this part of your life more tolerable. It may seem as though you’ll never feel comfortable. The more you are aware of this process, and follow it repeatedly, the easier it is to make the required adjustments. Those who have traveled along this path can be very helpful. They have been for me. The more information you receive, the less stress you will experience.

Be patient with yourself don’t hesitate to ask any questions you may have.

Yes, there are adjustments to make and new roads to travel. Through knowledge gained from resources, along with your own experiences, make this continuing journey just another routine part of your life. However, it takes time and effort. HAVE PATIENCE!!

It has been several years since my surgery. I have learned a lot, and have made adjustments to my life. You can reach this point as well.

YES, THIS IS SOMETHING YOU NEVER EXPECTED. YES, THERE ARE ADJUSTMENTS YOU WILL NEED TO MAKE. YES, THIS PROCESS TAKES TIME. YES, THIS WILL BECOME ANOTHER ROUTINE PART OF YOUR LIFE.

By Ellyn Mantell

While walking this morning it occurred to me that for many Ostomates, the heat is very challenging. Ileostomates, in particular, are prone to dehydration because our stoma is always productive. In Mother Nature’s inimitable creation, the colon, or large bowel, is responsible for absorbing fluids and allowing them to be reabsorbed into the body. Since ileostomates either no longer have a colon or it is no longer being used, the precious fluids are flushed from the body through the stoma. Hence the rapid filling and refilling of the pouch, which can be worse in the heat.

Naturally, drinking water is advised. UOAA’s new ostomy nutrition guide recommends you “Make a habit of drinking water throughout the day. At the same time, limit or avoid beverages with added sugars and artificial colors and sweeteners.”  Many of us may have difficulty drinking enough to support our anatomy, so we need to be mindful of symptoms that we are lacking the hydration/dehydration balance.

Some symptoms of dehydration include headache, fatigue, dark or decreased urine, lack of concentration, dry mouth, feeling disoriented, shortness of breath, dry skin, stomach cramps. Additionally, leg cramps, loss of appetite, drowsiness, tingling in fingertips and muscle weakness are all concomitant to dehydration.

Learning to live with the chronic dehydration possibility presented to ostomates is certainly attainable. For me, since I do not have a high blood pressure issue which might preclude adding salt, it means adding it frequently at meals. It is strange to servers at restaurants when I ask for the salt shaker, and many have asked if I mean the pepper shaker? We have become a salt-resistant society. But there are those of us who need it for our fluid balance. Additionally, I have a handful of a salty snack before bed, such as pretzels, since nighttime muscle cramps can be very painful and cause sleep deprivation. I keep a bottle of tonic water in the refrigerator, as well as a jar of pickles for those times when nothing else works. For muscle cramps I recommend an over the counter foam moisture. The manufacturers recommend using it prophylactically at night, but I have found it usually very fast-acting when I have foot or leg cramps, so I apply as needed.

Many Ostomates swear by sports drinks like Gatorade, but truthfully, although I have a bottle in the refrigerator at all times in case of fever, I find it difficult to drink. However, if presented with the option of drinking it or winding up in the Emergency Room for fluids, I will imbibe gladly! It’s recommended you dilute sports drinks to reduce the sugar content as well. At some of our Support Group meetings I have heard of many different electrolyte balancing drinks and powders, so you may find one that works for you.

UOAA recommends you drink 8–10, eight-ounce glasses of water/fluid daily. If you have a urostomy this also helps prevent UTIs and keeps urine diluted. Concentrated urine also can cause odor.

View UOAA’s Eating with an Ostomy Guide for more hydration tips such as avoiding excess caffeine, eating foods with a higher water content and sipping your liquids slowly.

It has been recommended that Ostomates drink more than simply water, since it flushes through the system and little gets absorbed before it exits through our pouch. Drink with meals, since food slows down the transport of fluids. Bring fluids with you when you are out and about, since being busy may cause us to forget the responsibility we have to stay hydrated. Lastly, in addition to feeling awful when we are dehydrated, being in that state puts a great deal of pressure on our kidneys, and can lead to kidney failure and lightheadedness, which can lead to falling.

Although this sounds ominous for summer fun, being mindful and smart will help us to relax and enjoy ourselves…after all, with the Covid experience, we have learned to grab the good and be grateful we are as healthy as we are!

 

Ellyn Mantell is a UOAA advocate and Affiliated Support Group leader from New Jersey. You can follow her personal blog at morethanmyostomy

A patient who did not know what to expect walks you through the process (with photos)

By AnneMarie Finn

According to UOAA information on this website, a urostomy is “a surgically created opening in the abdominal wall through which urine passes. A urostomy may be performed when the bladder is either not functioning or has to be removed. There are several different types of surgeries, but the most common are ileal conduit and colonic conduit. Reasons for surgery include bladder cancer, spinal cord injuries, malfunction such as chronic infection of the bladder and birth defects such as spina bifida.” Great definition, but what does it mean? When I was told I would need a radical cystectomy, leading to an ileal conduit I had no clue. The following is my experience.

Because of bladder cancer, my bladder needed to be removed and a new way to pass urine created. Due to the location of the tumor, my urethra was also removed so my surgeon and I settled on an ileal conduit, a conventional urostomy. It is called ileal conduit because a piece of the ileum, or small bowel, is used to make a passage for urine to go from the kidneys and ureters out of the body. The other end is brought out through a hole in the abdomen where urine exits through a stoma (more on that shortly). It is known as an incontinent urinary diversion because you cannot control the urine. As a result, a collection bag or pouch hangs from your abdomen to catch the urine. The pouch is not visible as it is worn under your clothes. Still not clear? It wasn’t for me either.

A couple of days before surgery, I met with an ostomy nurse at the hospital where I would be receiving my surgery. She marked where the stoma would be placed. She saw how I wore my pants. She had me sit, stand, lay down, and bend over, She drew a mark with a marker about 2.5 inches to the right and 3 inches down from my navel and covered it with a waterproof dressing. This would guide the surgeon as to the optimal spot to place the stoma. The surgeon had the ultimate call on where the stoma went, depending on the surgery itself. I also met with a nurse for a pre-op appointment. They went through the typical exam and then explained the ERAS protocol to me. ERAS, Enhanced Recovery After Surgery, is used at my hospital for radical cystectomies. They no longer use a bowel prep. You drink a high carbohydrate drink in the hours prior to your surgery. They get you up walking and feed you by the day after surgery. The goal is to keep your bowels working. This reduces the length of hospital stay and the number of complications.

This is major surgery. It is considered one of the most complex cancer surgeries performed. My surgery took 7 hours. They removed the bladder, urethra, uterus, cervix, fallopian tubes, an ovary, and some lymph nodes. When I woke up, I had a bag, a large incision with more than 30 staples and a Jackson Pratt (JP) drain on my abdomen. I also had intermittent pneumatic compression (IPC) devices on my legs, my spa legs. Blood clots are a common side effect of a radical cystectomy. Because of that, I also received daily prophylaxis blood thinner shots in my belly for 30 days. I was not in a great deal of pain which was easily managed with Tylenol. I was definitely weak, but otherwise ok. I went home in 4 days, on my own with my urostomy.

The stoma is the badge of the urostomy. My stoma is about one inch in diameter. It is pretty round, It sticks out. It sometimes moves in and out. You can’t feel it. It has been described as looking like a rosebud. It is red. This is where the urine exits the body. You have no control over it. Sometimes it will also expel mucus. Some people name them. I did.
Rudolph, my red, round stoma

You use a urine collection pouch, or bag, to catch the urine. The hospital will send you home with some so you do not need to have them on hand before you get home. There are many different brands. In fact, until I found what worked best for me, I tried most of them. My pouch is about 8 inches long, 6-7 inches wide and has a 1-2 inch closable spout on the bottom. It also is a deep convex bag as my stoma does not stick out very far and it helps protect my skin. I prefer the clear bag so I can see the stoma and center it when I put it on. There are both one and two-piece bags. I have used both. One-piece pouches have the bag and a skin barrier attached. The skin barrier has adhesive, also called a flange or wafer, that sticks to your skin. There is a hole that goes over the stoma. Some are pre-cut, some are not. If not, you must cut a hole slightly bigger than your stoma before putting it on. There are also two-piece systems. The bags are separate from the skin barrier. They are attached by a Tupperware-like seal. You can leave the skin barrier on and take off the pouch.

Front and back of 1 piece, deep convex pouch

I change my pouch every 3 days. I like to remove the old pouch and take a shower with it off. I feel so free. To remove, I use an adhesive removal spray and wipes to clean the skin. I shower and wash the area around the stoma with soap and dandruff shampoo, which contains Zinc. Some people wash with a vinegar and water combo. If I change without showering, I just use plain water to rinse. After showering, I use a hairdryer on the lowest setting to dry the skin around the stoma so the wafer sticks to it. Drying your skin is important. I have some skin issues so I also use a skin barrier protective sheet, that I cut a hole to match the opening of the wafer, and a cohesive seal.

Protective Sheet with hole cut out and Cohesive Seal

Some people use powders, paste, barrier wipes, etc. I do not. It took a lot of trial and error to find what worked best for me. You need to find what works for you. One of the best ways to do this is to work with an ostomy nurse. They can help you navigate ordering and finding the best system for you.
At night, I use the urinary drainage bag they sent me home with from the hospital. For me, it works the best. There are several brands of night bags and even jugs. I put it on the floor next to my bed inside of a small wastebasket. This has been key as the drain has opened (or been left open) and the wastebasket collected the urine, preventing a rug catastrophe. I am a very active sleeper and I am not really hindered too much from my bag. I am able to sleep on my back, sides, and stomach. Don’t be afraid to sleep. People add their own tubing and tube placement strategies. Use whatever works for you. I also highly recommend a waterproof mattress pad. Mattresses are expensive. I also use the night drainage bag on long car trips. I don’t have to stop and use those disgusting public toilets. I even used it during the Avengers finale. I was probably the only person in the theater who did not have to get up to use the facilities during the movie! People were actually jealous.

Night Drainage Pouch

I honestly can’t even feel my pouch. I empty it every 1-2 hours, depending on how much I drink. Sometimes there is a “ghost” feeling where my bladder used to be making it feel like I have to pee. Ah, the good old days. It is actually a weird sensation drinking a lot and not feeling like I have to go. The bag is not noticeable under my clothes. I really do wear what I wore before surgery: jeans, sheath dresses, shorts, and bathing suits. I am still sexually active. Having gone through this experience with my wonderful caregiver, my husband, has brought us closer. Most importantly, I am cancer-free.

Chances are you will be able to return to your normal diet not too long after your operation. It is good to keep in mind that foods that were good and healthy for your body before your operation are still good for you. A well-balanced diet is recommended for most individuals.

Although your ostomy nurse more than likely will give you tips and advise you on your health and diet, here are some alternative helpful suggestions for maintaining a proper diet after your ileostomy or colostomy surgery.

Start Small

Ease your way back to proper nutrition with small quantities of food. It is recommended to eat 3 or more times per day in smaller quantities and portions. Try to eat these meals at the same time each day to help regulate bowel movements. Eating more frequently and in smaller quantities will help aid your body’s ability to process food and help with unnecessary gas.

For the first several weeks after your surgery, eating simple and bland soft foods will be easier to digest. Keep in mind that chewing your food well also adds to the ease of digestion – the more broken up it is, the easier it will be to process. Take your time with introducing high-fiber foods back into your diet as these will be harder to digest and can cause blockages.

If you are trying new foods it is advised to try them slowly and one at a time. This will help you to have a better understanding of how your body works with the new foods and if any will cause excess gas, constipation, strange odors, or diarrhea. Slowly incorporate them into your diet and make note of how your body responds to them. Remember that every body is different and what affects someone else may not affect you in the same way, this is why it can be helpful to keep a journal or diary of how your body responds to different foods.

Drink Lots of Liquids

It is important to drink lots of liquids with an ostomy. If you have an ileostomy, even more specific ileostomy dietary guidelines will be helpful. Dehydration can happen as you lose more fluids daily after an ileostomy, due to the fluid not being reabsorbed into the large intestine. Make sure to hydrate even more on hot and humid days or if you are participating in active sports. (Sports drinks and other high electrolyte drinks can help with this.)

Coffee and tea are fine to drink, but water and juices are still better sources of liquid, so be careful not to use coffee or tea as a substitute for water.

Can I Drink Alcohol With my Ostomy?

Alcohol is fine in moderation, you may want to try one drink (or even a half) and wait and see how it affects your body. Like other carbonated beverages, beer may cause extra gas and uncomfortable bloating but every body is different and what affects one person, may not affect you in the same way.

Ostomy Problem Foods

Even though you can still enjoy most of the foods you loved before surgery, there are some foods to be aware of after your ostomy, specifically foods that are hard on digestion and can cause blockages. The following is a list of common foods that can cause problems, as they don’t break down easily:

Nuts
Seeds
Popcorn
Dried fruit
Mushrooms
Raw-crunchy vegetables

Eat these foods in small quantities and be sure to chew them well. If you think you have a food blockage, you should call your doctor or ostomy nurse. Having an ostomy certainly doesn’t mean you have to completely change your diet. By steering clear of a short list of problem foods and making sure to stay hydrated, you can get back to enjoying the foods you love.

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

Let’s Debunk These Common Ostomy Myths

 

 

 

After ostomy surgery, you may find helpful tips from other people living with an ostomy in online communities, support groups, forums and more. Weeding through the fact and fiction can be difficult. We asked certified ostomy nurses to outline some of the most common myths they hear to provide you with the truth about living with an ostomy.

 

Myth: Only use the ostomy pouching system that you were fitted with in the hospital or doctor’s office.

Fact: In the weeks and months following ostomy surgery, you may find your stoma and body changing. In the first few weeks and months post-surgery, your ostomy pouching system may need to be changed also.

 

Myth: All ostomy products are the same. It doesn’t matter what type of pouching system you wear.

Fact: There are a large variety of ostomy products available to fit the needs of each person living with an ostomy.

 

Myth: Your stoma should not change size a few months after surgery.

Fact: In the weeks and months following ostomy surgery, your stoma may change in size and appearance.

 

Myth: Having skin irritation is a normal way of life with an ostomy.

Fact: If the skin around your stoma becomes damaged, it could be painful and lead to infection. Prevention is the key to maintaining both healthy peristomal skin and your comfort.

 

Myth: If you have an ostomy, your significant other will not love you the same way.

Fact: It is common to have anxiety about relationships following ostomy surgery. Be open and honest with your partner about any concerns you have. Remember, having an ostomy is nothing to be ashamed of.

 

Myth: Odor is a part of life when you have an ostomy.

Fact: You will become more comfortable with your ostomy pouch over time, and will gain confidence in its ability to retain odors.

 

Myth: Now that I have an ostomy, I am no longer able to enjoy the foods I love.

Fact: Right out of surgery, you may be more sensitive to foods than you will be in six months. Slowly add different foods to your diet, and pay attention to your body’s response.

 

Myth: I have a colostomy or ileostomy so I shouldn’t be passing anything from my rectum. 

Fact: The colon or rectum may produce mucus even after ostomy surgery. If you have questions about your output, contact your healthcare professional.

 

Myth: I can’t get my pouch or wafer wet, which means I can’t enjoy water activities or bathe with my pouching system in place.

Fact: You can shower, go swimming, or even get in the hot tub with your pouching system in place. If using a pouch with a filter, cover the filter with the covers provided.

 

Myth: Don’t shower without your ostomy system off.

Fact: You can shower with or without an ostomy system in place.

 

Myth: An ostomy prevents you from wearing stylish, form-fitting clothing. People will be able to see that I have an ostomy.

Fact: Before you had ostomy surgery, did you notice an ostomy pouch on other people in public? Probably not. Try a wrap or special undergarments to help conceal your pouch and increase your confidence.

 

Myth: Insurance doesn’t cover ostomy care, so I am paying out of pocket for my supplies.

Fact: Contact your insurance coverage provider to understand what your insurance plan covers and pays for ostomy supplies.

 

Myth: You should rinse and/or reuse your pouches.

Fact: It is not recommended to rinse or reuse ostomy systems, pouches or wafers. Water can make the barrier break down faster and damage the filter of the filtered pouches.

 

Myth: People living with an ostomy cannot fly, because the cabin pressure can cause the pouch to fail.

Fact: People living with an ostomy can fly, ride in a car, or use any other mode of travel.

 

More information from ConvaTec

Editor’s note: This educational article 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.

How to Keep the Skin Around Your Stoma Healthy

 

 

Keeping the skin around your stoma, or peristomal skin, healthy is important. You can steer clear of many complications by following these simple suggestions from:

Bath and shower tips:

  • You can bathe and shower just as you did before surgery, with your pouch on or off—the choice is up to you.
  • Because soap residue can cause your skin barrier to lift, avoid oil-based and moisturizing soaps.
  • Soap and water will not flow into the stoma and cannot damage it.

Choose a well-fitted ostomy barrier:

  • To help keep the skin around your stoma healthy, it is important that your skin barrier fits properly. Choose a well-fitting pouching system to help prevent irritating stoma contents from coming into contact with your skin.
  • Your ostomy nurse can teach you how to use a measuring guide to determine the size of your stoma and select a cut-to-fit, pre-cut ormoldable barrier.
  • Your stoma size will change up to 10 weeks after surgery, so you will need to measure it periodically.
  • Changes to the abdomen caused by pregnancy, exercise, weight gain/loss or certain medical conditions may also require a new pouching system and/or size.

Changing your pouching system:

  • Make an easy-to-follow schedule for your pouching system. This will ensure your skin barrier is changed before the adhesive has eroded, reducing the chance of urine or feces coming into contact with your skin. Your schedule should be personalized based on your system type and the advice of your doctor or ostomy nurse.
  • At each skin barrier and pouch change, make a habit of looking at the skin around your stoma. Redness, swelling or a rash are signs of irritation. If you see any of these, or other signs of irritation, notify your healthcare provider.
  • Never rip or tear off your skin barrier. Instead, remove the skin barrier gently by beginning with one corner of the barrier and slowly pulling off the remaining adhesive. Adhesive releaser spray and remover wipes can make pouch changes easier and ensure clean skin, ready for your next skin barrier.
  • Make sure your peristomal skin is completely dry before replacing your pouch and skin barrier. Dry skin ensures a good adhesive seal and helps reduce the risk of fungal infection.
  • A skincare routine including skin barrier foam, spray or wipes can help ensure healthy, comfortable peristomal skin for years to come.
  • In hot, humid locations, consider using a pouch with a fabric backing. This will keep the pouch from sticking to your skin and causing skin irritation.

For more information click here.

 

Editor’s note: This educational article 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.