Discovering Strength in the Struggle from J-Pouch to a Permanent Ostomy

If you asked me 20 years ago when I was in college if I thought I could be a strong ostomate, I would have just stared at you in shock. Strength and I were not the best of friends. In fact, it was one of the things I often questioned about myself. I had no idea what was something worth crying about.

That all changed three years ago when I was put to the test when I went from sudden rectal bleeding as a result of ulcerative colitis, to having to remove my colon in a matter of four months. During the next three years, I had four more operations from trying the j-pouch and failing, to finally getting a permanent ostomy just this past December.

Somewhere along the way, I found my strength.  I dealt with major emotional and physical changes faster than I could even process.  I had to adapt to a whole new way of life and a whole new way of looking at myself.

Somewhere along the way, I found my strength.

These three years have been incredibly hard. They have tested me in every way, broken me down to smithereens of myself, and caused me to question everything. The true strength that just suddenly overcomes you when you least expect it is something you don’t really understand until you are there and have no other choice. Life after that is forever changed.

Along the way, I started to feel strong. I was amazed by what both my body and my mind could accept and turn into a positive. I started to really take care of my physical health, and in the three years that I have been the sickest in my life, I became the most physically strong I have ever been by participating religiously in barre class. This physical strength, along with the help of the ostomy community, is what helped me to then discover my mental strength.

I literally stared death in the eye and won.  It is hard to even write that today.

Feeling very alone, I stumbled across some ostomy bloggers one night while scouring the internet.  Reading their patient stories blew my mind at the time, because I didn’t comprehend how they could just accept living with an ostomy.  But all that changed and I began to understand when I was so sick that it was no longer a choice if I wanted to keep being a mommy.  The decision to have a permanent ileostomy was the best choice I ever made.

This physical strength, along with the help of the ostomy community, is what helped me to then discover my mental strength.

I just had what I hope to be my final surgery and got my permanent ostomy on December 1, 2020. Since then, I have made some promises to myself. I want to be my absolute best version of myself now that I am able to really live again.  I want to help as many people with IBD and facing the possibility of an ostomy as I can.  I want them to see what I have come to see, that they too can use such an incredibly difficult period in their life to find their strength and their best version of themselves.

“God said to me, I am going to show you pain.  And then you are going to help other people who are in pain because you understand it” (Lady Gaga).

 

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”

 

Outdoor Adventure Does Not Stop with an Ostomy and IBD.

Hi my name’s Charlotte!

I grew up in New Hampshire as the youngest of three sisters. I had a pretty normal childhood and was raised by a wonderfully supportive family who fostered in me a sense of independence and love of adventure. In 2007, at the age of 17, I was diagnosed with ulcerative colitis. That diagnosis later changed to Crohn’s disease, and it changed my life forever.

My IBD progressed rather quickly and about nine months after my original diagnosis, I had my colon removed, a temporary ostomy, and a j-pouch created. I lived with my j-pouch for five years, and those were some of the toughest years of my life. Despite a failing jpouch, pooping my pants every day, and a variety of other debilitating symptoms, I was determined to continue living my life. I was able to graduate from high school, bike across the country while in college, and complete my academic coursework as an Occupational Therapy student on time (despite dropping out of college in my Sophomore year because of my Crohn’s disease). I was not going to let Crohn’s get in my way.

In 2013 after agonizing over the thought of ostomy surgery (I had been adamant for years that I would not have an ostomy), I finally told my surgeon I was ready, and underwent surgery for a permanent ileostomy. I felt prepared for ostomy surgery this time around because I went to local support groups in Boston to learn more about living life with an ostomy. I also found a surgeon who understood me and what I wanted out of life. My ostomy changed my life again, and this time for the better. I’ve had 3 stoma revisions and my Crohn’s does pop up every now and then, but I have so much more freedom in my life with my ostomy.

In 2014, after graduating with my Master’s in Occupational Therapy, I was able to move to Alaska to take my life back and pursue a life of outdoor adventure (and work). I started sharing more about my ostomy with my community which increased my confidence. I worked to establish a collaborative medical team, including my surgeon, GI doc, and physical therapist/pelvic floor therapist who have helped me take control over my life and continue an active lifestyle. I’m a passionate OT working in Anchorage. I enjoy running, biking, skiing, climbing, hiking, backpacking, camping, and spending any time outdoors. My family, boyfriend, and friends are my greatest sources of support, and they inspire me to live my life fully.

In addition to my passion for the outdoors and exercise, I enjoy empowering others to learn more about themselves and how to thrive with an ostomy. When I first had my ostomy, there weren’t many resources out there, but I stumbled upon the Ostomy Outdoors blog which provided helpful resources for my outdoor journey with my ostomy. That’s in part why I created my blog, backcountryostomy.com, to support other ostomates returning to active lifestyles after ostomy surgery.  And I recently started my business, Restorative Ostomy Solutions to empower Occupational and Physical Therapists to feel more confident working with ostomy patients.

Through rehabing myself from six major abdominal surgeries, I have learned what it takes to pick myself up after each setback and continue on my life journey. Because life if so much more than my diagnosis and my ostomy!

A research study about the benefits of perioperative self-management support for ostomates

 

Ostomates are not only dealing with intestinal concerns but are also at risk for a multitude of complications. Data shows that 38% of ostomy patients find themselves back in the emergency room or being admitted within the first 90 days post operatively [1]. This is one of the highest rates of readmission when compared to other types of surgery. The most common cause for re-admission is dehydration, at approximately 40% of post ileostomy readmissions [2]. We also know that 84% of ostomy patients develop skin issues. The causes of these can be chemical, mechanical, or microbial, and possibly avoidable. Ostomates also have significantly increased healthcare costs, especially when affected by peristomal skin complications, and leakage [2]. It is known that 25% of ostomates develop renal failure within two years. The complications these patients encounter require 7x more outpatient visits than the average patient. And 29.1% of ostomates experience readmission which costs approximately $16,000 per patient [1]. These statistics show that specialized care for these patients is imperative to improving patient outcomes in this patient population.

A recent study published by the American Society of Colon and Rectal Surgeons shows how one company, 11 Health and Technologies, is utilizing a novel care approach to improve the quality of life and outcomes in this type of patient. The company developed alfred: SmartCare, a unique care model designed to meet the specialized need of ostomates. The program consists of a SmartBag and SmartWafer, mobile application, patient coaches (who were/are also ostomates, trained to support this type of patient) and the nursing team. The patient wears the SmartBag and SmartWafer, which submits data to the mobile application and clinical dashboard. The data is visible to the patient, their coach, the nursing team and the patient’s clinicians to be used to identify trends and abnormalities in the values. The patient can see how much output they have expressed and what the temperature is of their peristomal skin. These data points can help to curtail oncoming hydration issues or infections. When abnormalities are identified, the coach can work with the patient to provide education and can escalate issues to the nursing team for medical guidance.

In the study, the outcomes of 66 new ostomates from 19 different states were monitored for the first 30 post-operative days. The study showed that close monitoring of ostomy output volume as well as perioperative self-management support can significantly reduce the rate of hospital readmissions in the first 30 days after ostomy surgery.

Patients and healthcare providers should be open to the use of innovative programs that use remote monitoring along with telehealth, as they can be beneficial in improving the outcomes of patients in the immediate post-operative period.

To read the full study, visit the Diseases of the Colon & Rectum online at: https://journals.lww.com/dcrjournal/Citation/2020/12000/Improved_30_Day_Surgical_Outcomes_in_Ostomates.17.aspx

Editor’s note: This article is from one of our digital sponsors, 11 Health and Technologies. 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.

[1] Tyler, J. A., Fox, J.P., Dharmarajan, S., Silviera, M. L., Hunt, S. R., Wise, P. E., Mutch, M. G. (2014). Acute health care resource utilization for ileostomy patients is higher than expected. Diseases of the Colon & Rectum57(12), 1412-1420.

[2] Justiniano, C. F., Temple, L. K., Swanger, A. A., Xu, Z., Speranza, J. R., Cellini, C., Salloum, R. M., & Fleming, F. J. (2018). Readmissions With Dehydration After Ileostomy Creation: Rethinking Risk Factors. Diseases of the colon and rectum61(11), 1297–1305. https://doi.org/10.1097/DCR.0000000000001137

[3] Taneja, C., Netsch, D., Rolstad, B. S., Inglese, G., Eaves, D., Oster, G (2019). Risk and economic burden of peristomal skin complaints following ostomy surgery. Journal of Wound, Ostomy and Continence Nursing, 46(2), 143-149.

[4] Fearn, Robert I. M.D., M.R.C.P.1,2; Gorgun, Emre M.D.3; Sapci, Ipek M.D.3; Mehta, Saahil N. M.D.2; Dinh, Binh B.S.2; Yowell, Quinn V. M.S.2; Eisenstein, Samuel M.D.4 (2020). Improved 30-Day Surgical Outcomes in Ostomates Using a Remote Monitoring and Care Management Program: An Observational Study. Diseases of the Colon & Rectum: December 2020 – Volume 63 – Issue 12 – p e581-e586.

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.

Two ostomy community leaders discuss effective ways to stay positive when times get tough.

Living through a crisis is hard for anyone, but there is an extra layer of concern for people with ostomies. Hollister sat down with two influential people in the ostomy community to find out how they cope during challenging times.

Amber Wallace is the creator of the Ostomy Diaries YouTube channel and social media platforms, and Dr. Paul Wischmeyer, MD is a critical care, perioperative, and nutrition physician at Duke University School of Medicine in Durham, North Carolina. Both Amber and Paul live with an ostomy.

Q: How can people with ostomies stay healthy both physically and emotionally when facing a crisis?

Amber: The best way to take care of your emotional health is to take care of your physical health. Continue to take your supplements. Stick to a schedule and make checklists. During a difficult time, I do the same things at the same time every day and that helps. It’s also important to get enough rest and exercise, even if you have to find a routine online. Grief and anxiety can manifest physically if you don’t put those things into practice.

Paul: I agree with taking the proper supplements. Some of us with ostomies absorb vitamins differently, so it’s important to consult your doctor before starting a regimen. Exercise is also very important. As a senior in college, I was doing research with a doctor at Mayo Clinic. One day he said, “Paul, you’re getting soft and look a little out of shape – do you want to keep getting sick? You should start running and taking better care of yourself.” I had never had anyone say that before and was motivated (and a little miffed) so I started running and ran almost every day for a year. And when that same doctor performed my tenth surgery to remove my failed ileal pouch, it took only four hours instead of eight. Afterwards he said, “Your abdomen looked like you never had surgery – your adhesions were gone! Whatever you did in the last year, you should definitely keep it up!” I haven’t stopped running and exercising since.

Q: What can we do to stay healthy if we have to travel during a health crisis?

Amber: It’s important to keep a change of ostomy supplies on your person when traveling and make sure to stay hydrated. We all have leak stories. One time I was hiking in the Great Smoky Mountains and my pouch fell off. I had to change it in a porta potty! And, of course, I use hand sanitizer constantly, especially on my phone.

Paul: I’ve had leaks on planes and have had to run to the washroom with it pouring down my leg. Never a dull moment with an ostomy some days! I keep supplies in a small kit. I also always wear an ostomy belt, which helps keep my pouch secure. When my wife and I travel now we wear masks and bleach wipe everything we have to touch.

Q: Where should people turn when having a really bad day?

Amber: Stay connected with nature and focus on things that are beautiful. Take a moment and be still. Keep grounded and turn to your faith. It’s OK to cry and let those emotions out. Recognize it, feel it, and embrace it. There’s a myth that if you ignore depression it will go away. You have to deal with it before you can move ahead. Last year after my wedding I was feeling down and didn’t know why. I was too ashamed to tell anyone. So I decided to speak to my doctor. He ran some tests and it turned out that my vitamin levels were out of whack. Never be ashamed to talk to your doctor, that’s what they’re trained in.

Paul: Well, as I shared before, exercise has been a true lifesaver for me. When I’m down I also often turn to my family. Being vulnerable is hard especially when you’re sick. I often have trouble loving myself with a body that could turn on me and threaten my life at any moment. Just a few years ago, I was sick again and needed three surgeries and a prolonged hospital stay (almost a month). My wife slept every night at my bedside in the hospital. Through that I realized that perhaps I am loveable no matter what. When feeling depressed, another resource I often use is to connect to the ostomy community on Instagram and other social media. I’ve seen so many people get support from others all over the world. It’s definitely healing to share your story…and to hear others and know you are not alone.

Q: A crisis can present problems with participating in milestone events, such as graduations and funerals. How can people still stay connected?

Amber: If it’s a death, you can honor them by the way you live your life and stay positive. That’s how you can keep their memory alive. If it’s a graduation or birthday, plan something with the person or people when you’re feeling better or the crisis is over. Connection is so important. Check-in with people, even your happy friends. You never know what they’re going through. Gratefulness works too, I write down one thing I’m grateful for each day and put it in a jar.

Paul: I agree about gratefulness. In our family, we play a game every night called “3 GOOD THINGS” where we all go around and name three good things that happened each day. At our hospital, we are spending conscious time thanking people for the little things they do. Getting out of your head and thanking someone else is so essential and therapeutic. It’s so important especially if you’re down. Gratitude is as rewarding to yourself as it is to the one you’re thanking.

 

This is an excerpt from “Tips for Coping in a Crisis” in the Hollister Incorporated Ostomy Learning Center. Read the full article here.

 

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.

 

Getting to a place where you feel confident in yourself and your new routine might take some time. There are many factors to consider following your ostomy surgery, but there are also many resources available to you while you are adjusting to normal life. Having a thriving social life is not out of the question, and with some time and patience with your body, you will be living your best life.

Beginning Stages

In the beginning, it will be important to keep some sort of a journal or diary as you experiment with new foods and beverages. Figuring out how different foods and beverages affect your body will influence your social life with regards to dining out. It might be helpful to eat smaller meals more often throughout your day as you record what foods tend to cause more gas or which foods are harder for your body to break down. Remember to drink lots of water and chew your food well.

As you move from blander and softer foods to a more regular and high-fiber foods, you will notice more regularity in your bowel movements. Understanding your body’s schedule will be key in planning outings, dates, and events. As you begin to venture out of the house more, remember to bring extra supplies with you and locate the restrooms should you need one with short notice.

Getting Out There

As your confidence builds, and your ostomy becomes routine and normal to you, saying ‘yes’ to more things will become easier and easier. If you were an active person before your surgery, you will be able to resume your active lifestyle. Whether going to the gym, running along the beach, hiking through a forest, or playing a pick-up game of basketball, exercise is key to keeping you mentally, emotionally and physically fit. While you will need to be cautious in the beginning so you can fully heal, there are few limitations on what your body can do with ostomy. If you are having a hard time figuring out what clothing or specific products will help to keep things in place during your activities, Coloplast has put together solutions for a variety of different sports and activities.

Making friends aware of your new ostomy can be intimidating at first. Preparing an informative, concise story to tell people may help ease your mind. Connecting with your friends and family can help you to stay positive and hopeful and will make the transition back to regular life much more manageable. Share as little or as much as you feel comfortable about your ostomy, but keep in mind that talking about it can be beneficial to both parties.

If you are in a romantic relationship, it is likely that your partner is already aware of your surgery and new ostomy. Good communication and honesty about your feelings and your partner’s feelings will be vital to the future of your relationship. It may take time for you to feel ready to be sexually active following your surgery, but exploring this as a couple and in the timing that works best for you will go a long way in helping your relationship succeed.

Meet Others Like You

You are not alone in this new change to your body. There are many people living with an ostomy already out there who are interested in connecting and sharing their stories. It can be helpful to talk to someone who is in a similar situation and who will understand the ups and downs of this new routine. Getting connected to a group or network that shares your story can be radically healing and help with your confidence and self-esteem, not to mention broaden your social network. If you aren’t ready to venture out to a group just yet, you may want to begin by watching and hearing stories from others living with an ostomy to see how they were able to travel, date, go back to work, stay active, and enjoy a healthy sex life.

Whatever stage you are at in your recovery and healing process; if you are adapting to a new routine with your pouching system or working your way to sexual confidence with a partner, know that it is possible. While it may feel daunting to say yes to a date or go out to dinner with a group of friends, with just a little extra planning and the support of others, you can have a thriving social life with an ostomy.

 

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.

Are you feeling nervous at the thought of date night after ostomy surgery? You’re not alone. With a little planning ahead, you can be sure to have a great night out.

My first question would be, what are your plans for the evening? Plans might be different for a first date versus dining with a long-term partner or spouse. You might be considering an outdoor outing following dinner, such as a walk. Or you may need to keep in mind if there is a potential for intimacy at the end of the night.

Keep in mind where you will be throughout the evening. Will you be in a place where you won’t have access to a bathroom, or do have access, but have concerns about odor? There are certain foods or drinks that will cause an increase in output, gas and a potential embarrassing smell. Check out tips and tricks for diet here, but keep in mind that everyone will react differently; so you will need to try things out. I don’t entirely follow all the “food rules”, but I do limit carbonated drinks and monitor how much I eat. I’m lucky, my stomach can handle most foods. I do not get blockages and am not too concerned about potential odors.

If you fear odor that may accompany emptying your pouch, I recommend carrying a small bottle of odor eliminating toilet spray. You spray it in your toilet before you empty, and it helps hide the odor. Now that doesn’t solve the problem entirely, but in combination with a lubricating deodorant you can empty with more confidence.
If you do end up having a little more output than expected without access to a bathroom, I find using one of the Ostomysecrets® wraps to both hide the potential bulge from your shirt or leverage extra support in case you fear an accident. The wrap can also prevent self-consciousness if your shirt “accidentally” comes off during the date or evening.

If you are hoping to avoid the bathroom altogether, keep in mind, how much you eat will also drive output. If you eat a lot, then you could potentially be in and out of the bathroom all night.

Bottom line: plan ahead thinking about where you’re going, what your plans are and you’ll be able to face the evening with even more confidence!
~
Andy Snyder

 

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My name is Jodi Capobianco, I am 54 years old and have a permanent ileostomy.  Five years ago I was diagnosed with severe off-the-charts constipation and was to receive a temporary loop ileostomy.

I am so thankful that I did not let having an ostomy get in the way of me missing out on this awesome adventure.

Shortly after my surgery, I began having problems. To make a long story short, my colon became diseased and they removed it giving me a permanent ileostomy.  Unfortunately, shortly after my colon was removed I developed an abscess.  I actually ended up developing seven more before an amazing surgeon figured out that I had a leak.  He performed a small bowel resection and made my loop ileostomy an end.  That was over two years ago.  I was so weak when I came home I was using a walker.  I can honestly say life is now amazing. In fact, I just got back from rafting the Colorado River in the Grand Canyon for eight days.

There were no bathrooms, heck there was no nothing just the big outdoors. I went with my husband, our trip started on a Saturday morning when we flew from Boston to Arizona. I was pretty pumped when my ostomy was not an issue while going through security.  Not that it is a big deal to be patted down, but it was nice to be able to skip it.  When I fly I try to limit my intake so I am not having to empty on the plane.  I also stay away from anything carbonated when I am out, so no bubbles.  We arrived in Arizona after traveling for about 9 hours. We headed to our hotel, where of course our room was not ready and got lunch.  I knew I would be near a bathroom for the afternoon and evening so I ate what I wanted.

That night was the orientation for the trip. I learned we would on the bus for about three hours the next morning with no bathroom break. Departure time was 6:45 am.  I decided not to eat breakfast but brought a bagel with me. I ate about an hour into the trip. I knew I would be able to use a porta-potty at the boat launch.  On the morning of the trip I changed out everything.  I ended up using wafers that were precut.  I usually cut my own but I did not want to have to deal with that. I used closed-ended bags that were waterproof. I am usually a drainable girl, but again I knew there really would not be a place to drain anything especially during the day. I also used three brava strips for reinforcement, and I use a ring under my wafer.

I had two complete changes in my dry bag, then in my shorts or pants I had three bags in a zipper pocket, I also kept a bag in my backpack in case we went hiking.

We were all given two dry bags for our stuff, one we could get to during the day and one we could not.  In my day bag, I had enough supplies to do two complete changes, 5 disposable closed ended bags as well as five bags I could put the disposable bags in.  The first night when we stopped at camp I was given my own ammo box.  This was a metal box that sealed.  I was able to put all my waste into it.  In the morning I would give the box to the trip leader, she would empty it and then when we stopped at camp for the night she would discretely give it back to me. The only bathroom in the camps were either behind a tree or rock and they consisted of a yellow bucket with a toilet seat on it to pee in and a metal bucket that contained waste.  I would pee in the yellow bucket but luckily did not have to deal with the smelly bucket for pooping in.  I would simply pop bags on and off when I needed to.

When we arrived at the camp for the night, which generally was a large sandy area by the side of the river, we all helped unload the boats.  Once the boats were unloaded, one would find their campsite for the night, lay out a tarp and sleeping pad. This is when I would take a minute to get organized. For me, this consisted of placing two closed-ended bags and baggies in a plastic cup near my sleeping bag.  This was so I could change in the middle of the night if I needed to. I also would place my headlamp nearby so I could find it easily in the dark and see what I was doing.

When popping a pouch on and off, I would place a small baggie (I used the blue ones that came with my bags) under the disposable bag so when I unclicked and popped it off it went right into that bag.  Next, I would pop on a new pouch and be good to go.  For the most part, I changed bags when we got to camp, right before bed, once in the middle of the night and when I woke up.

Having the precut wafers and closed ended pouches made all the difference in the world.

During the day I would set myself up as follows:  I had two complete changes in my dry bag, then in my shorts or pants I had three bags in a zipper pocket, I also kept a bag in my backpack in case we went hiking.  I would change bags after breakfast before getting on the boat and when we stopped for lunch.  I was generally good until we got back to a camp.

To change I would hide behind a rock or a tree or sit on my sleeping bag with my back to everyone.  I also had a small package of biodegradable baby wipes with me.

There were two times I had to change everything.  The first was three days into the trip.  I got off the boat and my skin itched.  This is generally a sign for me that something is leaking.  I had been in the water a ton this day so I was not surprised.  I peeled off all the adhesive from the brava strips as best I could, dried the area off, and put on a new wafer and popped on another bag.  The second time was two days later.  I knew that this time I really needed to wash the area and try to get a bit of the adhesive off my skin.  So, I went down to the river with a small washcloth that I had packed.  I took everything off and dipped the washcloth in the river and then scrubbed my skin as best I could.  I dried the area, covered my stoma with the cloth and went back to my campsite where I put on a new ring, wafer, brava strips and pouch. I did this all while trying not to get any sand on my skin.  Having the precut wafers and closed ended pouches made all the difference in the world.

The last day on the river was a half day.  Once we got off the boats we are onto a bus for three hours.   Luckily there was a real bathroom stop.  Here I just switched out bags.  We got back to the hotel and into the shower I went.  I had so much adhesive on my skin.  I used a ton of adhesive remover, then took a face cloth and washed the whole area.  My skin looked pretty good for being engulfed in adhesive for 8 days lol.  It took a while to get all the adhesive off.  It felt amazing when it was.  Obviously, when I got out of the shower I dried off and put on a new ring, wafer and bag, no brava strips.  My skin was very happy for this.

I am so thankful that I did not let having an ostomy get in the way of me missing out on this awesome adventure. I refuse to let anything get in my way of living.  I attribute the success of this trip to closed-ended bags, precut wafers, being organized but also for patting myself on the back and having an awesome attitude.