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.

 

 

How Coaching & Technology Reduced Hospital Readmissions Rates

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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 & Rectum, 57(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 rectum, 61(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.

Tips for Coping in a Crisis

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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.

How to Have a Thriving Social Life While Living With an Ostomy

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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.

Date Night with an Ostomy

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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!
~
Randy Snyder

 

Editor’s note: This 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.

Every Ostomate Has a Voice Worth Hearing

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Saturday, October 3rd, 2020 marks the 10th anniversary of Ostomy Awareness Day. In partnership with United Ostomy Associations of America (UOAA), Hollister Incorporated is proud to stand with the entire ostomy community in celebration. Every ostomate has a voice worth hearing and we aim to embody ostomy confidence of our worldwide community with #OstomateVoices.

Spread Positivity and Share Your Voice

We’re connecting and empowering our worldwide ostomy community to share their own unique experiences—their challenges, their achievements and the joys of their daily lives. Share your words of encouragement that have helped you along your ostomy journey. Your story might help someone who might be struggling. Using your words, we’ll create a unique social card that you can share with your friends, family, and community. Share your voice here!

Join Us for a Virtual Cooking Class

Join us for a virtual cooking class on October 3rd with private chefs Ryan Van Voorhis, a fellow ostomate, and Seth Bradley of Nude Dude Food™, one of Chicago’s most sought after private dining and catering services. Register today to connect with others in the community and cook a delicious meal. Register today!

For more resources on nutrition with an ostomy, check out UOAA’s Food Chart or download the “Eating with an Ostomy” Nutrition Guide.

Show Off Your Stoma Sticker

Stoma stickers are a great way to raise awareness, start a conversation, or show support. Order your free Stoma Stickers in time for Ostomy Awareness Day, shipped anywhere in the US.

Share a photo or video of your Stoma Sticker on social media using #StomaSticker to be part of the conversation. Or show off your Stoma sticker while running in your virtual Run for Resilience Ostomy 5K and share how you celebrated #OstomyDay2020.

Share your #OstomateVoices and personalize your next Instagram or Facebook Stories with the Hollister “Ostomate Voices” digital stickers. It’s easy – search “Ostomate Voices” in the GIF library when creating a Story and you’ll find the whole collection, including a UOAA lifesaver and Stoma Sticker!

For more resources and interactive ways to get involved, visit Hollister.com/ostomyawareness.

Editor’s Note: this blog post was provided by Hollister Inc. the exclusive Diamond Sponsor of UOAA’s annual Run for Resilience Ostomy 5K events that benefit UOAA, a 501(c)(3) nonprofit organization.

Keep pushing forward – Ostomy Awareness Day 2020

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It can be hard to talk openly about living with an ostomy, but at Coloplast, our mission guides us in our everyday work and our employees embody a passion around hearing real-life stories from people with intimate healthcare needs. We have gotten to know Joel through his story, his resilience to keep fighting, and we are proud to stand with the ostomy community in raising awareness of ALL people living with an ostomy.

Join us, Joel and ostomates across the nation in participating in the Virtual Run for Resilience for the 10th Anniversary of Ostomy Awareness Day (OAD) on Saturday, October 03, 2020.

Joel’s Story

I was diagnosed with Crohn’s disease at 17 years old. Nine years later I had a very bad flare up that put me in the hospital fighting for my life. When the doctors first told me that the best option was to have ileostomy surgery, I was so upset but I was in so much pain I was hoping that it would make me feel better. When I finally woke up from surgery and realized I had an ileostomy – I cried. I didn’t even want to look at it. It took some time, but I got used to it, my stoma saved my life.

After surgery, the scariest thing for me was not knowing how I was going to move forward in life with an ileostomy. As soon as I got out the hospital, I began to work out every day, even if it was for 25-30 minutes. In 6 months, I was able to build my strength up enough to complete and graduate an intense 4-month police academy. Today, I continue to do what I love and recently completed my personal training certificate.

I am telling my story to tell you that you should never give up on something – even if it seems impossible. Stay strong, stay positive and keep pushing forward!

I am excited to walk, run with you all on Ostomy Awareness Day for the Run for Resilience and hope you will join in with me! I created this video, “Tips on Running with an Ostomy” for you all. I am always looking to connect, and support others so feel free to reach out to me if you need help, want to chat, or just need some support. You can find me on Instagram at @crohnically.fit

Join us for the Run for Resilience

Having an ostomy should not hold you back from participating in the run/walk. Our Coloplast® Care team is here to support you if you want to chat, just give us a call at 1-877-858-2656. We also have resources on our website on sports and exercise.

Coloplast is proud to be a part of the effort to build awareness that ostomies are lifesavers, visit our website to request a free sticker for OAD and join our contest for an opportunity to win some swag! We can’t wait to run/walk with you on October 03! Make sure to follow us on Instagram @coloplast.us for updates leading up to the event!

 

*Joel is a Coloplast product user who has received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare provider about whether this product is right for you.

 

Editor’s Note: this blog post was provided by Coloplast Corp, a Gold Sponsor of UOAA’s annual Run for Resilience Ostomy 5K events that benefit UOAA, a 501(c)(3) nonprofit organization

 

Lynn’s Journey to self-reliance: Knowing what to expect can help empower people living with Short Bowel Syndrome

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My journey with Short Bowel Syndrome (SBS) spans 61 years, and it has been full of twists and turns. I’ve often wished that I understood from the beginning exactly what it meant to have SBS – it is not temporary, rather it is chronic. That means it’s a lifelong condition, and it has frequently caused me to make adjustments to maintain my independence and lead a productive and meaningful life. Reaching independence and self-reliance took years of learning the importance of self-advocacy to get the information I needed from my healthcare providers, no matter how difficult it may have been to hear that information. Each symptom, diagnosis, ostomy and medical procedure that preceded my eventual SBS diagnosis posed new challenges. The more I knew about what lay ahead for me, the more I could take charge of my own life. As August marks SBS Awareness Month, I hope my experiences will help inform and inspire others living with this serious and chronic malabsorption disorder to speak up and ask for information and tips to help maintain as much independence as possible.

A very long time ago, before cellphones, DVD players, home computers, microwaves and color TV, I was born in New Jersey in February 1959. I was a very “clean” baby, with no dirty diapers, which soon raised concern among the medical professionals who started me on enemas and laxatives. I ate very little and projectile vomited most of what I did eat. My mother continuously tried to find out what was wrong with me. Despite many doctors advising her that it was a discipline issue, no diagnosis made sense. None of their theories panned out. Nothing worked. And so began a long journey of wishing we had known what I was living with much earlier on.

In the summer of 1963, my mother, in her desperation, called the White House, spoke to the switchboard operator and requested the name of the Kennedy children’s pediatrician. She then made an appointment with the chief of pediatric surgery. The doctors conducted multiple tests, but unfortunately, I was discharged before the test results were back as the hospital was dealing with another emergency patient! Consequently, my mother did not receive the results, and we left wishing we had more answers.

It took three more years, another hospitalization and my first surgery for a doctor to request those records and discover I should have been diagnosed with a rare, congenital condition called Hirschsprung’s disease back in 1963. Back then, my family and I didn’t know that this diagnosis would increase the likelihood of future gastrointestinal procedures and diagnoses, including SBS. In fact, after that first surgery, my doctors told me I would be fine. Yet, I developed a fistula and the treatment/surgery for that left me with an ostomy. It closed within a year, and my parents were told yet again that I was fine, and we had learned all we needed to know.

Throughout my childhood, I continued to experience episodes of vomiting and few bowel movements, which left me very thin. To stop the vomiting, I had a laparoscopic procedure as a young adult, which I hoped would be the last of my surgeries – if only I had known what lay ahead. My surgeries did not stop there as I had hoped, and I had a second and third ostomy. In 2002, I was placed on total parenteral nutrition (TPN) for the first time. At that time, I was only receiving TPN during my stay in the hospital while recovering from surgery. My body had tried to cover up the symptoms of malabsorption for more than forty years, and I was now seeing the effects of my severe nutritional deficits. I would return to needing TPN periodically over the next two decades.

In graduate school, I met my husband, and we now share a wonderfully supportive family. When we wanted to start a family, there were some severe issues with my pregnancies. My firstborn was delivered via emergency caesarean because I couldn’t stop vomiting. I was hospitalized seven times during my second pregnancy. And then when I finally went into labor, my blood pressure dropped drastically throughout the delivery. I’m happy to say that despite their dramatic entrances, my daughters are happy, healthy and successful – both are biomedical engineers, and one is also a doctor.

In April 2006, I participated in a colonic motility study, and what I’d learned in pieces over the years was finally confirmed: my colon was functionally deficient. Six years later, I found myself unable to eat due to severe abdominal pains and a pseudo-obstruction and was put back on TPN. I feared this would prevent me from traveling on a three-week family trip to Australia, but my husband and daughters learned how to properly store, prepare and administer my TPN infusions, so we could still travel. I am so grateful to have been able to enjoy that trip with my family despite my TPN, ostomy and needing to use a catheter. I would encourage families and caregivers of people living with ostomies and/or SBS to take every opportunity to promote their self-care and independence as much as possible. For me, traveling with my family is important. Learning how to pack and plan our trips in ways that help me maintain my independence has made a big difference.

In August 2013, I was once again faced with just how much I didn’t know about my condition when I was officially diagnosed with SBS. My doctor explained that, rather than solely due to the length of my bowel, my SBS diagnosis was based on my clinical symptoms. My intestines could not sufficiently absorb the nutrients my body needed, leading to malnutrition and dehydration. To maintain nutrition, I continued on TPN.

After finally reaching 145 pounds in September 2019, I was told to discontinue TPN. With SBS, however, I do not know how long this reprieve will last, and these unknowns are important motivators for me to self-advocate when it comes to talking to my healthcare providers. As much as possible, I think healthcare providers should be upfront about the ramifications of living with SBS to fill the gaps in understanding disease management. For me, I spent a lot of time learning as I went along, and my hope is that by sharing my experiences, I can encourage others to ask the tough questions every step of the way.

I am thankful my husband and daughters have always been there for me, helping me emotionally at every doctor’s visit. My husband especially helps me get through each learning curve and the occasional late-night clean-up from messy ostomy accidents. I even have a service dog who carries my medicine for me wherever I go – I consider him my personal ambulance. Without this wonderful support around me, my life would be much more complicated.

That support has helped me take an active role in advocating for myself and others with ostomies, feeding tubes and other GI issues. Each condition differs in how they affect us physically, yet many of us share common concerns. Though people like me may appear healthy on the outside, I want to increase awareness that SBS can be a hidden illness requiring a lot of medical maintenance, sometimes including an ostomy and feeding apparatus. I want to support those like me who also may feel overlooked. Because of that, I started a support group that focuses on ways to continue living our lives, discussing everything from travel to preparing for emergencies. I also advocate on the national level, attending National Institutes of Health conferences in Washington, D.C. I would encourage patients and caregivers to attend local support groups as well as regional and national conferences to meet other people with SBS to share experiences and tips.

These opportunities to connect with the community of patients and caregivers managing GI conditions help to remind me I am not alone. Our individual journeys to SBS diagnosis may involve varied GI conditions and symptoms, and it can feel challenging to find others who share our experience. Sometimes our family and friends forget that we are not quite as physically strong or have stamina unless we mentally prepare ourselves for individual occasions. But in our shared SBS community, we can truly feel related to, supported and understood. I may not have had all the answers along the way, but with support and community I don’t have to dwell on what I wish I had known. I can simply live and learn through each moment.

To join the community and learn more about others living with Short Bowel Syndrome (SBS), visit https://www.facebook.com/TakedaSBS. You can also engage with #shortbowelsyndrome on social channels, especially during the month of August, which is SBS Awareness Month.

This article was created and sponsored by Takeda.

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

Swimming with an Ostomy

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Having an ostomy should not prevent you from swimming. Below are some helpful tips to get you feeling confident in the water, whether it’s in your own backyard pool or at a beach.

  • You can swim or be in the water while wearing your pouching system. Remember, your pouching system is water-resistant and is designed not to leak with the proper seal. Water will not harm or enter your stoma.
  • Prior to swimming, make sure your seal is secure.
  • Empty your pouch before swimming. Also, ensure your wafer has been on for at least an hour prior to getting wet. If you are nervous about output, eat a few hours before jumping in.
  • If you use a filtered pouch, use a filter cover sticker on your deodorizing filter to prevent water from entering the pouch. You can remove the cover once you are dry.
  • Wear what makes you feel the most comfortable. Swimming with an ostomy should be fun and worry-free regardless of what you’re wearing. Shop with confidence knowing there are so many options that could work for you.
  • Always carry extra supplies in case you are somewhere where supplies may not be available.
  • For extra peace of mind, use barrier strips if you will be swimming for an extended time.

me+ Team Member Tip: “I tell people who are scared to swim with an ostomy to spend a few hours in the tub on a lazy day. If your pouching system holds up to that, then the pool should be a breeze.” ~Sarah B.

Editor’s note: This 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.

Ostomy Diet Guidelines After Surgery

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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.

Ostomy Myths vs Reality

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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.

Dating With An Ostomy

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Don’t Let Your Ostomy Stop You From Dating!

Easing back into the dating scene may feel scary and impossible, it’s normal to want to take your time and get comfortable with your daily routine before tackling dating. It is possible, however, and going on dates might actually help to increase your comfort and confidence.

Finding the Perfect Date Location

When you are ready, choose a location that is familiar to you. If it’s not too far from home and you already know where the restrooms are, you will feel more in control of the situation and it will ease your mind. You can choose to keep the first couple of dates casual and relatively short to ensure your comfort.

You might even want to get together with a close friend who knows about your ostomy and go out shopping for a new outfit, something that will make you feel positive and bold. If the location of the date is unknown to you, use this time to also stop by and get a feel for the environment. It’s fine to want all the information ahead of time so all you need to worry about during your date is seeing if there’s a romantic spark.

Are Things Beginning to Heat Up?

Of course if things are beginning to heat up with someone, you will probably want to think about sharing about your ostomy. Remember that it’s completely up to you when and how to do this. It may be helpful to write down what you want to communicate beforehand to help with your confidence and directness. Feel free to keep it short and then offer to field some questions that your new partner might have. Remember, if a romantic interest can’t accept you as you are, they are not the one for you.

More Resources

If the idea of ostomy sex makes you nervous, it may be helpful to talk to someone who has been down that road before. Speak with someone who has experience living with an ostomy to find out how they navigated similar situations. Your nurse may have information of local networks or support groups. You can start your search to meet others in your situation on our website.

Find our additional information on intimacy and your stoma.

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.

Maintaining Healthy Peristomal Skin

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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.

Ostomy Awareness Day: Ostomies are Life-Savers

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“Bottom line, I have my life back and I’m only looking forward.” – Josh Nelson

Ostomies are Life-Savers – and Coloplast is proud to be a part of helping spread the word on Saturday, October 5th for Ostomy Awareness Day!

For many people, it’s not often that intimate things – like an ostomy – are discussed openly … but at Coloplast, our passion centers around hearing real-life stories from people with intimate healthcare needs. As we listen, we strive to uncover unmet needs and respond with innovative product solutions to make life easier for people living with an ostomy. We bring this passion to listen, respond, and make life easier to work every day – and we’re proud to stand with the ostomy community in raising awareness of the amazing resilience of people living with an ostomy.

Do you live in the Twin Cities? Lace up your shoes and join our team for the Virtual Run for Resilience!

You, your family, friends, and pets are invited to join Coloplast employees, ostomates in the area, and their families for a “virtual 5K” run/walk/roll along the Mississippi River in Minneapolis, MN – starting at our US corporate office. Attendees should plan to arrive by 10:00 AM to gear up for the race. There will be groups of people both running and walking, so you can move at the pace at which you are most comfortable!

Before the run/walk/roll begins, we will have two guest speakers. Kiza Olson and Josh Nelson, who both have ostomies, will tell their stories, including how an ostomy was a lifesaver for them. Watch this short video from Josh* encouraging you to join us:

This event is open to anyone who wants to help support ostomy awareness. Looking for more information? Check out our Facebook event page. Feel free to join our team and sign up for the event at no cost on the Coloplast team page.

To help you prepare for the run/walk, brush up on some tips on sports and exercise with an ostomy on our Coloplast® Care site.

Don’t live in Minneapolis?

Visit the Coloplast booth at one of the 8 Run for Resilience events nationwide!

If you plan to participate at one of the run/walks held nationwide, make sure to stop by the Coloplast table and meet our local representative! We’ll be handing out free temporary tattoos so you can wear the “Ostomies Are Life-Savers” slogan proudly on your sleeve.

We’re proud to be a part of the effort to build awareness that ostomies are life-savers – and a key contributor to really feeling like you can “have your life back” is finding the right product fit. As bodies change over time – aging, gaining or losing weight, getting new scars or a hernia – it’s important to check that you still have the right fit. That’s why we developed BodyCheck: in 8 easy steps, this online tool will identify the best combination of product(s) to provide a secure fit to your individual body profile. At our booth, we’ll have information on using BodyCheck to ensure you still have a secure fit – and a free magnet reminding you to check your body as things change.

Take a selfie!

If you get the temporary tattoo or magnet –  we’d love to see how you display them! Snap a picture and share with us on social media with the hashtags #OstomyAwarenessDay #OstomiesAreLifeSavers  #RunforResilience

 

*Josh is a SenSura Mio user who has received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare provider about whether this product is right for you.

Editor’s Note: this blog post was provided by Coloplast Corp, a Gold Sponsor of UOAA’s annual Run for Resilience Ostomy 5K events that benefit UOAA, a 501(c)(3) nonprofit organization

How Will You Celebrate Ostomy Awareness Day?

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National Ostomy Awareness Day is celebrated this year in the US on Saturday, October 5, 2019. At Hollister Incorporated, we are proud to stand with the broader ostomy community to show how we are #AllinforOstomy. We invite everyone to join together in spreading awareness or engaging in activities that can impact the day-to-day lives of people living with ostomies and their caregivers.

Participate in a Run for Resilience Ostomy 5K Event!

For some, the best way to celebrate and support ostomy awareness is to get out and enjoy the day, even better to do so together with the people we care about. In that spirit, we celebrate Ostomy Awareness Day again this year by supporting United Ostomy Associations of America (UOAA) as the exclusive Diamond Sponsor of the annual Run for Resilience Ostomy 5K events. The events help increase awareness about ostomy and continent diversion surgery and encourage positive dialogue. Bring family and friends with you to participate in one of these fun events nationwide. Many feature kids’ activities, a DJ, a division for people with ostomies, and awards. Visit ostomy5k.org to find a run near you. While you’re there, stop by the Hollister booth and say hello!

If you can’t make it to one of the live events, you can still participate by registering for a Virtual Walk, Run, or Roll at a location near you. Even a treadmill counts! This year Hollister Associates will participate in a virtual event near our Hollister Incorporated headquarters in Illinois, and at our distribution center in Stuarts Draft, Virginia.

Gearing up to participate in one of these events? Get in the mood with the All in for Ostomy playlist on Spotify.

Show off your Stoma Sticker on Ostomy Awareness Day or Any Day!

By wearing a “stoma” where people can see it, you can start a conversation, raise awareness, and show support for the ostomy community on Ostomy Awareness Day and every day. Place the sticker over your clothes on the lower right or left side between your navel and hip, where ostomies are typically located. Then, take a photo or video and share it on social media with the hashtags #AllinforOstomy and #OstomyAwareness. Because any day is a good day to support and celebrate ostomy awareness, Stoma Stickers are available for order year round! Visit stomasticker.com to order a free educational Stoma Sticker, shipped anywhere in the US.

Visit www.hollister.com/ostomyawareness to learn more!

 

Editor’s Note: this blog post was provided by Hollister Inc. the exclusive Diamond Sponsor of UOAA’s annual Run for Resilience Ostomy 5K events that benefit UOAA, a 501(c)(3) nonprofit organization.

Gwendolyn’s Journey with Short Bowel Syndrome

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Working with Takeda to Educate Others about Gastrointestinal Disorders

 

Ten years ago, I would have introduced myself as Gwen. Today, I am Gwendolyn, a version of me that’s been to hell and back with Short Bowel Syndrome, or SBS. A me who’s come to know a strength she had no idea she possessed. Gwen, before SBS, was career-driven, rushing through life. Everything for me was fast-paced—work, home, and family. But that was ten years ago, before SBS barged in and reshaped my entire life, stripping me of my identity. With August being SBS Awareness Month, I am sharing my story about living with SBS and an ostomy, as a way to drive awareness of this disease among others like me who are impacted.

I’m your typical New Yorker. What comes up, comes out. But not when it comes to SBS. It’s not the prettiest of conditions, is it? Intimate details aside, no one really understands what we’re going through. When I was diagnosed, I felt so isolated. To this day, I still have flashbacks of being in that hospital bed, wondering why. I wasn’t comfortable discussing what I was going through. No one deserves to feel alone with SBS. We are not hopeless. I don’t believe that. I’d like to believe that what I’ve been through is for a reason. Maybe sharing my story is my reason—to help people see that SBS can be a beginning, and not an end.

I entered the workforce shortly after completing high school. In 1991, I began working in construction. The minute I walked onto a job site, I felt at home. I started out as a temporary receptionist and after various projects, I worked my way up to office manager. I worked in construction for over 20 years. Come 2009, I was the administrative manager for the largest construction project in the country. I was happily married, living in the Atlanta suburbs, and enjoying any time I got to spend with my precious granddaughter. Life was good. I really felt like I had arrived. In fact, I was so focused on my job and being everything to everybody that I wasn’t giving the pain I’d been experiencing the attention it deserved.

By then, I’d undergone three separate abdominal surgeries: one to remove my appendix at age four, another to address a small bowel fistula at age 27, and finally a hysterectomy at age 40. For years, I’d been experiencing intense abdominal pain, which I’d alleviate with a pain reliever here and a pain reliever there. Until, one day, the pain relievers stopped doing the trick, and I’d just about had enough. I decided to finally seek medical attention. Turns out, I had quite a bit of scar tissue and adhesions leftover from my past surgeries. After talking it over with my doctors, I decided to go ahead with surgery to clean it up.

As far as I knew, the surgery was a success. I was released from the hospital on my 54th birthday. Two weeks later, my daughter came over and found me, incoherent, with a greenish fluid seeping through my surgical dressing; my temperature had spiked to 104 degrees. I was rushed to the hospital and immediately sent into surgery. I had developed a bad sepsis infection as a result of multiple fistulas found within my small bowels. I underwent two additional surgeries, which required the removal of portions of my small bowel, and was placed in a medical coma. While in the coma, my husband made the decision to have an air ambulance fly me to a larger facility where I was immediately rushed into surgery—again. This surgery would end up costing me additional portions of my small bowel and my colon as well.

I remember waking up days later and having no idea what had happened. So where am I? At a different facility, and in critical condition, so bad that they’d previously advised my daughter to say her goodbyes. My abdomen was completely opened and connected to wall suction. I also was left with an ileostomy. I’d have to now receive nutrition via total parenteral nutrition (TPN) twenty-four hours a day, seven days a week. At no point did anyone say a thing about SBS.

I was admitted in May of 2009. I ended up going home in April of 2010. My body couldn’t seem to hold off the ongoing infections. It seemed that everything that could possibly go wrong did. Let me tell you, I cried a lot. I couldn’t help but think, Why me? What had I done to deserve this?

My husband came to visit every day after work and stayed with me in the hospital on the weekends. One day he came in and I was having one of my uncontrollable crying spells. He lost his temper. He said to me, “What the hell are you doing? You are not doing anything to help yourself!” He spoke the truth; no sugarcoating it. I got angry. But you know what? I needed to get angry. I needed to feel something other than self-pity. I stayed angry for a long time after that day—not at him, not at the doctors, but at myself for not doing my due diligence. It was hard for me to admit that. As an administrator, I was used to surveying contracts, invoices, as well as familiarizing myself with the details. Yet when it came to my health and being my own advocate, I felt I had failed. But that didn’t mean I couldn’t start now. My husband helped me see that. He got me out of bed every single day to walk. He would wrap me up in blankets, place me in a wheelchair, and take me outside in the dead of winter in order for the sun to hit my face.

I managed to make it back to see my original gastroenterologist in April 2010 after I was discharged from the acute care facility, who for the first time diagnosed me with Short Bowel Syndrome (SBS), or what he called “short gut.” After my diagnosis with SBS, it took me a long time to come to terms with it; no one told me how different my life could be. I had no choice but to do a little soul searching, and it was there I met Gwendolyn. Gwendolyn wasn’t scared; she wanted some answers. Gwendolyn knew that, in terms of healthcare, there had to be more options out there.

After I was discharged, I returned to the hospital in May of 2010 in order to reverse the ileostomy and close the opening in my abdomen. I prayed that, afterwards, things would go back to normal. Boy, was I wrong. I had lost 75 percent of my small bowel and 25 percent of my colon.

I was tired of relying on TPN. By that point my doctor and I reduced the amount of time for my infusion requirements at home. There were nights I couldn’t bring myself to connect to TPN, and my husband had to do it. I got tired of wearing the backpack if I went out, and people asking, “Are you going camping?”

My infectious disease doctor recommended a gastroenterologist he thought would be a good fit. He was right. At my first appointment with her, she listened to my case and evaluated treatment options that would help me reach my treatment goals.

To help monitor my health and stay where I want to be medically, I keep a daily log, which includes voids, bowel movements, when I take my medication, daily activities, and what foods I’ve eaten. I even log my blood pressure and temperature. I see my gastroenterologist every two months. A log takes the burden of remembering off my shoulders, and all of my doctors seem to appreciate the effort. I have an amazing medical team. My gastroenterologist. My infectious disease doctor. My therapist. My nephrologist. And my primary care physician. But my surgeon, he was a gift. The last time I saw him was in April of 2017. I had been his patient for eight years. Before I left his office, he gave me some of the best advice to date; he said, “It’s time to go ahead and live your life.” I can hardly talk about that man without crying. He saved my life, in more ways than one.

The reality is, I have good days and bad days. On my good days, I spend that time making cupcakes for my granddaughter. I make a mean cupcake. I do laundry. I go out with friends. That’s right—I leave my house! I don’t go anywhere without my little toolkit. Inside my purse, I’ve got baby wipes, disinfectant spray, odor eliminator, rubber gloves, and hand sanitizer. But you know what? It works for me.

While I don’t miss some of the old Gwen, I do miss her tenacity. So I’m working on getting a little of the old me back—saying “yes” to opportunities and working on relationships with others.

When I was diagnosed with SBS, I wish that I had done more research to learn what the future could be like living with SBS. I think that would have saved me a lot of pain and heartache. So I’m going to tell you what I wish someone would have told me. If you’re not comfortable with where you are, do something to get where you want to be. If you feel like something is wrong, do something about it.

To learn more about Short Bowel Syndrome (SBS), please visit shortbowelsyndrome.com. You can also engage with #shortbowelsyndrome on social channels, especially during the month of August, which is SBS Awareness Month.

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