Jasmine’s Story

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A year with an ostomy provides challenges and blessings

My name is Jasmine and I was diagnosed in 2016, at the age of 23 going on 24, with stage three colorectal cancer. I am a survivor. I went through multiple surgeries, chemo, radiation, and an ileostomy.

Many people think that having to wear an ileostomy bag would be unpleasant and very difficult. There is some truth in that at first, but I learned on the journey that it was a blessing.

Without an ileostomy, I would have not have been able to have my cancer (tumor-size of a peach) taken out. Without having my cancer out, I might not be here today. There are challenges that I faced such as my bag leaking. There were some nights when I would wake up and the stool would be everywhere. It was very frustrating but I managed to get through. One day I asked myself, “is this life?” Just like anyone else I would feel down. I knew it was ok to go through the emotions but I started praying to God that things would get better. My faith, family, and friends is what got me through.

Once I explained to my treatment team about what was going on, they insisted that I have a nurse come out two-3 days out of the week to help assist with my ostomy. Thanks to Johns Hopkins in Baltimore, they gave me resources as far as where to order good quality bags that were covered by my insurance and I ordered from a supply company. They started by giving me free samples to try and then I started to order them frequently because I liked the quality and they also provided a kit that included scissors, ostomy bag holder, and barrier rings. The scissors were for me to cut the baseplate to get it to the exact size of my stoma so that it could fit properly. This was all new to me but in due time it became the norm.

The barrier rings were great because it is what protects the skin because I had issues with my stool getting on my stoma. Whenever the stool would rub on my stoma it would burn so the rings help protect the stoma and leaks.

I do not regret anything I went through though because I came out a stronger person.

The advice I’d share would be to empty your pouch on a regular schedule to avoid overflows. I ate small frequent meals because I notice when I ate a lot, my bag would fill up. Make sure you’re drinking enough fluids throughout the day as well. I had to Introduce foods to my diet one at a time to determine how it would feel. I always made sure that I had bags everywhere I went.

I had the ileostomy for almost a year and I was told that it did not have to be permanent unless I developed problems down the road. In April of 2017 I was able to get it reversed (taken off).

Some other challenges from the cancer were that I had a section of my rectum removed and one of my ovaries removed. I cannot have kids on my own because both of my Fallopian tubes were removed as well so I will have to go through a surrogate, knowing this, I chose to freeze my eggs.

Being that a part of my rectum was removed I have complications from time to time. I am now 29 and although I still have complications I’m so happy to still be here and share my testimony with others as well as help any others who are encountering the same illness.

My recommendation to others with an ostomy and going through this process would be to be confident in your bag. I never looked at myself as disabled, I wore my bag with pride. There were a few times when I made a design on my bag to make it my own.

One thing I went through was being able to see who my real friends were through this process. I lost some friends in the process but gained even better friends. I had trouble dating due to the fact that people were intimidated by my bag and everything I had to go through.

I do not regret anything I went through though because I came out a stronger person. Life is too short to be down, I survived cancer, I was almost at the end of the road. I was in way too deep to just give up. Do not give up, I want those who see my story to reach out to me if they need to vent. It helps to talk to someone who actually went through the same experience.

With the help of my family real friends, and God I was able to go through this process gracefully.

What can I do with a Urostomy? What can’t I do?

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Don’t let an ostomy stop you from having some summer fun

By Annemarie Finn

When I received my bladder cancer diagnosis and the treatment plan, a radical cystectomy with an ileal conduit, I was devastated. Like so many, I went through many stages: Denial, Anger, Bargaining, Sadness and Depression, and finally, Acceptance. It felt like a double whammy. It seemed like the “cure” was worse than the disease. I would be forever changed. It was hard to wrap my brain around. It is one of the reasons I decided to write about my experience. I had no idea what to expect and did not know where to turn. I saw some videos of survivors with ileal conduits but, I did not relate with the speakers. They were 20-30 years older than I was. I really did not want to envision a life as an elderly person before it was time.

I can use a public restroom without having to sit on the gross toilet!

What would my quality of life be? I was terrified that life, as I knew it was over. Would I be able to work? What activities would I be able to do? What would I never do again? I had so many questions and fears.

So, what can I do now that I have a urostomy?

Honestly, I can do everything I could do before. When you first get out of surgery, you are hardly able to walk around your room. When you go home, the end of the driveway is a monumental trek. By persevering and trying to walk more everyday, I was able to go from measuring distance in feet to measuring in miles. Today, I try to walk 5-10 miles a day! I have hiked intermediate trails in the hills of Eastern Massachusetts. I have discovered miles of trails in my hometown that I didn’t even know existed. I am probably healthier than I was before I got sick.

Can you take a bath?

People often ask if you are able to bathe with a bag. It is very nerve wracking initially to expose your stoma. They are fairly active. I call my stoma, Squirt, when he (yes, it’s a he) acts up. He does spray urine. Picture a male toddler squirting. That’s what it’s like. We have no control over it. That’s why we wear a pouch.

As you can see, a urostomy after a radical cystectomy is a life changer, but in a good way.

You can wear your urostomy bag in the shower. You do not need to cover it or keep it dry. It is a good idea to dry the skin around it with a hair dryer on low when you are done. You can even take your bag off and shower without it. I am over two years out from my surgery and that is how I prefer to do things on my change day. I change my bag every 3 days. I prepare all of my materials (bag, ring, barrier, paper towels, remover spray) then remove my bag. I then take a shower. I wash the skin around the stoma with just water or soap for sensitive skin. Just make sure you do not leave behind any lotion or any residue that would affect the barrier sticking to your skin. I keep paper towels ready to catch any drips when I am done and dry the skin with a hair dryer on the cool setting. I then just put on my prepared bag. I have some skin issues and find this helps with the itching and discomfort. It feels so good not to have the bag on for a while.

What about swimming?

I am a water rat. I can be in the water for hours, literally hours. It doesn’t matter if it is in the ocean, a lake, or a pool. I have done them all. Personally, it has not affected the amount of time I am able to wear a pouch. I am still able to go 3 days. I am able to swim, kayak, and paddleboard with my urostomy. I even just float. It has not interfered with my love of water at all. Even better, I can wear a regular bathing suit. I have worn tankinis for years, and not because of my urostomy. I no longer have a toned teenage body. I don’t even have a toned 30 something body. I like 2 piece tankinis as they hide a multitude of sins. After I got my urostomy, I decided to buy regular 2 piece bathing suits. Ironically, I am much more comfortable with my new imperfect body than I ever was before. My family laughs at me because, where I was self-conscious before, I now show off my body. Maybe it was having so many strangers looking at my most intimate body parts in the hospital or maybe I am proud of my battle scars. You cannot see my bag with my bathing suit on. It’s honestly no big deal.

There are so many other things I have been able to do since my urostomy. I ride my bike. I participated virtually in the Norton Cancer Institute Bike to Beat Cancer, a 35 mile bike ride. I did it in steps but I gave myself a pass since it was only months after my surgery. I garden, do yard work, spread mulch, work, travel, you name it. As you can see, it has not limited me in any way. Because of my urostomy and thanks to my night bag, I can sleep through the night without having to get up to use the bathroom. That means I can drink up until I go to bed! I can sit through long car rides and movies with said night bag. I can use a public restroom without having to sit on the gross toilet! I can write my name in the snow!!! That is not conjecture, I actually did it. My sex life is good. I am planning a European vacation. Both of those will be the topics of future blogs.

What about what I can’t do

The list of what I can do is long. What about what I can’t do. I can’t pee like I used to. I am careful about lifting. I had a hysterectomy with my radical cystectomy so no more children for me. Since I was in my late 50s when I had my surgery, it’s not really an issue but, I am trying to be honest here. That is something to consider if you are younger. Definitely talk to your doctor if you want children. I can’t play the piano, but I couldn’t before. That’s about it.

As you can see, a urostomy after a radical cystectomy is a life changer, but in a good way. You can still do what you did before and even try new things. Even better, it is a life saver. Go out and live your best life. That’s what I am doing.

 

 

How to Deal with Peristomal Hernias

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By Elaine O’Rourke, Ostomy/IBD Health Mentor

Peristomal hernias are something that every ostomate should be aware of. Although a hernia can occur for a wide variety of reasons, there are some common factors to take into consideration, such as weight, age, level of fitness and other health issues.

Nurse Anita Prinz, CWOCN, is my guest in this must-watch video and we discuss hernias in detail. She shares a very informative slide show as well as showing different types of hernia belts and ostomy products that are useful if you have a hernia.

You will see and learn what hernias look like, how they form and preventive tips.

There are a great variety of hernia support belts on the market which can make a big difference. But you should be fitted/sized for your hernia belt as every body and stoma is different.

It is so important in the weeks following surgery not to lift or do anything strenuous. Even coughing can cause a hernia. Always proceed with caution especially when you are starting to exercise. If you are trying to get in shape and have not been active before surgery then you are advised to wear a hernia belt.

You might benefit from one-on-one instruction from someone such as myself who is trained and knows how to exercise safely and strengthen and engage the core with an ostomy. Hernias do not go away so you should consult your medical professionals to get more advice. Surgery can be done but be aware that hernias can reoccur.  Ask questions and be well informed.

Make sure to grab your FREE GUIDE: “3 simple ways to eliminate fears about your ostomy” by visiting Elaine’s website www.ElaineOrourke.com

Nurse Anita is available for a private consultation. www.AnitaNurse.com

About Elaine

Elaine O’Rourke is an Ostomy/IBD Health Mentor and the creator of the program “Surviving To Thriving: Overcoming Ostomy Challenges So You Can Live a FulFilling Life”.  She is a certified Yoga Therapist & Teacher since 2003, Sound Healer, EFT & Reiki Practitioner, Recording Artist and International Retreat Leader. Her lighthearted and fun personality shines through her teachings/programs as she loves to inspire others.  She is a contributing writer to the national Phoenix Magazine and UOAA, presenter at the UOAA National Conference and speaker at Girls with Guts retreat. 

YouTube: Elaine O’Rourke Yoga, Ostomy, IBD

Facebook: https://www.facebook.com/ostomyibdlife/

Instagram: https://www.instagram.com/ostomyibdlife/

Web: ElaineOrourke.com

Moisture Math & My Ileostomy

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By Sarah Biggart

ostomy pool side

Though having ileostomy surgery 15 years ago gave me my life and freedom back, it does bring its own unique set of concerns and challenges in daily activities and pouch changing schedule. I typically change my full appliance every fifth day.

Change day is day one, and I change my entire pouching system again on day five. I feel confident in my appliance, and this changing system has worked really well for me. Leaks are few and far between; however, as is true for most ostomates, they do happen occasionally. Leaks can happen to all of us, although my longest stretch without a leak is five years – not too shabby!

For me, my daily routine includes showering, exercising, getting sweaty – and weather permitting – swimming and jacuzziing in our community pool with my friends, family and neighbors. Even while doing all of these regularly, a five day wear time holds up for me.

So now, let’s talk what I like to call “Moisture Math”, and the moisture related variables that may affect my wear time.

Travel & Convenience:
If I am going away for the weekend, or traveling, I will do a full pouch change the night before I leave. I have always been a “better safe than sorry” girl, and being an ostomate has reinforced that mindset. If I can get away with not having to do a full pouch change in an unfamiliar setting, I will, just for my own ease and comfort. I’ve been held up traveling before, and it can feel stressful and uncertain. When you’ve had to sleep in an airport, just the added comfort of knowing I have a few days before needing to do a full change is just one less thing to be concerned about. So when setting off on a journey, I like to start with a freshly changed system.

Weather:
I live in a very mild climate, not too much heat and humidity at any given time. My Ostomysecrets® Underwear keeps my pouch away from my body, and it helps limit complaints about excessive heat and moisture. I am a person who enjoys travel and adventures! Sometimes I wind up in warmer, muggier parts of the world. On those sweaty days, walking and exploring in the heat, moisture math joins the pouching equation. A couple of summers ago my family, friends and I spent 10 days in Florida, in July. Between walking an average of 10 miles each day enjoying Walt Disney World, swimming in the pools, afternoon downpours daily and being a general sweaty mess, I went to a very strict every other day change. It was more moisture than I typically deal with, and going back to my better safe than sorry mentality, it seemed like my best course of action. My sting free ostomy care products helped to make frequent pouch changes more gentle on my peristomal skin. I would do my changes at night in our room, in the air conditioning, so that my wafer had plenty of time to adhere to my skin before heading back into the sweltering Florida heat.

Daily Activity:
We all find our own way of managing our changing schedule, most Ostomy Nurses (WOC nurses) would recommend 3‐5 days of wear time. What I would definitely advise against is waiting until you HAVE to change due to a leak. Before you realize you have a problem, waste is coming into contact with your peristomal skin, and that may lead to skin damage. Above all, you want to keep your skin healthy, happy and intact. So when would my daily activity impact my wear time? Again it’s moisture math! I mentioned earlier that I like to swim and jacuzzi; a quick dip for an hour or so is very different than a big day out that involves being in a wet bathing suit all day. If I am planning a big day out on the water, in the pool, at a beach or waterpark, I figure that in to my changing schedule. For example if day one was Thursday, and day three is a big day out involving water, when I get home, I’ll typically shower and do a full change.

I’m always mitigating risk, and making smart, informed decisions regarding my ostomy. Adjusting my routine accordingly to moisture variables helps to keep my peristomal skin healthy allowing me to enjoy whatever life brings my way. Whether you are new to the ostomy world, or a seasoned pro like myself, planning ahead – just a little – may help you to experience life to the fullest.

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.

New Ostomates Deserve Our Best

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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

Nurse Shares 4 Common Convex Ostomy Skin Barrier Myths

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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 Output Challenges

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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”

Holidays with an Ostomy

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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.

Dave Wolffe’s Story

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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.

The Heat is On! Hydrate with an Ostomy

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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