By Elaine O’Rourke, Ostomy & IBD Health Mentor
When you are able to talk honestly about sex and intimacy, it will help build a healthier relationship. A chronic illness or an ostomy can bring up different issues around relationships, whether you are single or in a partnership.
You may wonder when to tell a potential partner about your medical history or how to rediscover passion within your current relationship. You may need to get creative with how you are having sex and pleasuring each other.
How to communicate effectively
This is the key to everything in life! So needless to say it is the key when you are in a relationship. Yet, it can be so difficult to communicate effectively.
Personally, I try to express, with compassion, what I am experiencing and being open to hearing their perspective. This will help open the dialogue about sex and intimacy.
It is so important to get comfortable talking about your ostomy, IBD or any chronic illness with your partner. If you’re not feeling sexy, desirable or if it’s painful to have sex then your partner needs to know. Likewise, your partner may be having difficulty accepting your new body and feel guilty about that.
Seek help if you need it. As an Ostomy/IBD Health Mentor I help people with many of the emotional issues that arise.
Check out this video clip from my talk on “Intimacy” at the Girls with Guts retreat last year.
Your partners perspective
It can also be really difficult for your partner to witness you go through so much pain. It’s important to nurture your partner too. Ask them if they have questions about your ostomy or how things work. They might be feeling nervous and afraid. By opening the conversation you are helping them to voice how they are feeling and how they are dealing.
The act of sex includes sexual intercourse. But this may not be possible for everybody. Or you might discover that it feels very different depending on what surgery you have. It might be painful or you may not be able to have an erection or ejaculate. (See videos on Pelvic Floor Physical Therapy and Men’s Health with IBD or Ostomy).
If you are in your head and worried about what your partner thinks, or if you are embarrassed or self-conscious about how you look, then it will be really hard to let go and enjoy sex. Feelings of being inhibited need to be addressed. This is an area included in my ostomy and IBD programs.
Rekindling your relationship
Practicing patience and knowing you have to give your body time to heal. Your partner needs to know how you are feeling. If you are dating someone you need to explain to them what’s going on. It’ll either make or break a relationship.
If sexual intercourse isn’t possible then get creative with other ways of pleasuring each other through oral sex, touching, kissing, cuddling, sex toys.
Before sex I always empty the pouch. I’m not taking any chances! You will feel much better about things and your partner will be grateful too.
If a position doesn’t work for you then you have to let your partner know. Know your boundaries.
Take your time to get to know each other again, to become familiar with how your bodies work together now. Be patient with each other. And make it fun. Remember the more comfortable you are about your body, the more comfortable your partner will be.
If you are having a flare up, or going through cancer treatments then chances are you are not feeling sexy at all and a cuddle is all you can handle.
Intimacy requires really opening up more and letting someone see you for who you are. Being able to share you fears and worries, being vulnerable, honest and authentic.
Intimacy is different to the act of sex but when combined then it makes a really healthy relationship.
Intimacy creates sensitivity. When you are intimate you become sensitive to yourself and to others.
When to tell someone about your ostomy or illness
Each relationship is going to be different. It may also depend on how long you’ve had your ostomy or illness.
Personally I wouldn’t intend to tell someone on a first date that I have an ostomy but if the timing is right then I might.
Most importantly, is to honor how you are feeling. It’s all about what you are comfortable with. You want someone to form an opinion on your personality and not based around your ostomy or diagnosis.
Sometimes, just having an ostomy has been a great way to NOT have a one-night stand!
If you are having a one-night stand then tell the person beforehand. But try not to go into a feeling of rejection if they don’t want to proceed. They are probably doing you a favor in that case! (See video below on Overcoming rejection with Chronic Illness or Ostomy).
I’ve found that when I explain the events leading to my ostomy how ill I was and then there is more empathy and understanding of why I’ve an ostomy and all that I’ve endured.
Blog and video on Sexual Issues with an Ostomy has great information along with the https://elaineorourke.com/sexual-issues-with-an-ostomy-or-ibd/
UOAA has a sexuality guide which explains the types of surgeries, and how they affect sexual function and the emotional component as well.
Make sure to grab your FREE GUIDE: ‘3 simple ways to eliminate fears about your ostomy” by visiting Elaine’s website www.ElaineOrourke.com
Elaine O’Rourke is an Ostomy/IBD Health Mentor and the creator of the program “Surviving To Thriving: Overcoming Ostomy Challenges So You Can Live a FulFilling Life”. She is a certified Yoga Therapist & Teacher since 2003, Sound Healer, EFT & Reiki Practitioner, Recording Artist and International Retreat Leader. Her lighthearted and fun personality shines through her teachings/programs as she loves to inspire others. She is a contributing writer to the national Phoenix Magazine and UOAA, presenter at the UOAA National Conference and speaker at Girls with Guts retreat.
YouTube: Elaine O’Rourke Yoga, Ostomy, IBD
Embracing Ostomy Advocacy and Giving Back
By Angie Davenport
I’ve had my ileostomy for 38 years due to ulcerative colitis but I only recently went public to encourage other ostomates. Over the years I’ve helped many individuals by word of mouth while keeping my ileostomy private to the outside world. I have always wanted to be a blessing on a wider scope though to others with ostomies.
I was first diagnosed with ulcerative colitis in 1980 when I was three months pregnant. At first, I thought it was pregnancy symptoms. After a major episode, I was treated with medication for ulcerative colitis. My son, James was born a few weeks early due to complications.
After the birth of my son in March of 1981, everything was under control and I eventually relocated from Warren, Ohio to Atlanta, Georgia. While living in Atlanta I had a major setback with ulcerative colitis and I had to fly back to Ohio immediately and went directly to the hospital.
After several weeks of treatments in the hospital, my doctor came into my hospital room one night and said we have to do surgery or you won’t make it 24 hours. I’ll never forget my mom crying and praying for God to give her my disease so I could have a normal life.
When I received my permanent ileostomy in March of 1982 I was a young 23-year-old single mom. It was the day before my son’s first birthday. I had never heard of an ostomy. When I woke up in ICU I was devastated, ashamed and frightened. I thought my life was over.
Once I became strong enough physically and mentally I moved back to Atlanta. I was still feeling ashamed and frustrated until my physician in Georgia recommended I attend the local United Ostomy Association (the precursor to UOAA) support group.
While living in Atlanta I became very involved with the UOA group and completed the visitor training program. I enjoyed visiting new ostomates at the hospital. I felt the freedom to be involved because no one really knew me in Atlanta. I remained active until I relocated back to Ohio in 1985. That same year I married my high school sweetheart and we will celebrate 36 years of marriage in November.
Although I was very private about my ostomy I was very successful in my career. I became the first African American female officer at our local bank and functioned in several positions without the exposure of my ileostomy. After the downsizing of my employer, I later worked 10 years at Great Lake Cheese until retiring in 2016.
What is my purpose in life? How can I make my mom proud?
I’ve enjoyed my life as an ostomate. I love traveling, cruising and shopping. I was known in the business community as a person that loved to dress. I taught Dress for Success at the bank for all new tellers.
The past few years were filled with so much grief, with the most current being the death of my mom on July 4th 2019, only three days after my 60th birthday. I was feeling the deep void of losing a brother and both parents within 4 years, depression was setting in. I had support but I felt helpless and lost. What is my purpose in life? How can I make my mom proud?
Most will remember 2020 as a horrific year with so much sickness, death and devastation from a deadly pandemic. For me, I utilized the time to seriously seek God for a purpose in my life and being quarantined turned out to be a blessing in helping me find my purpose.
I knew my testimony would bring awareness and hope to so many people.
I became more involved via social media with other ostomates. I’ve met some wonderful friends and it became rewarding to encourage others that had shared similar experiences as me. My heart was really saddened when I read an article about a young man that had gone to court for the right to die because he didn’t want to live with an ostomy. I wept. Also seeing how some individuals can’t afford the basic ostomy supplies and had to use grocery store bags and tape to secure their ostomy bags was heartbreaking. I knew then, that there was so much more I could do for the ostomy community. I knew my testimony would bring awareness and hope to so many people.
As a member of Jearlean Taylor’s Ostomy Stylzz Facebook Group I participated in a virtual fashion show. She is a personal inspiration to me and that show boosted my confidence to a much greater level. I felt a relief to go public. I chose August 14th, 2020 to go live on Facebook and share my story. I felt such freedom once I finished. There were family members, coworkers, church and community friends that responded and supported me in disbelief. For the past 38 years, they never knew I had an ostomy.
One family friend messaged me and told me that he was scheduled for surgery but has canceled many times, but because of my video he felt he could now go through it. I still check on him to make sure he’s not having any problems. That made going public all worth it. But what else could I do?
I decided to participate in the Run for Resilience Ostomy 5K. I registered over 20 walkers to participate virtually in several cities and I exceeded my fundraising goal by almost 100%. The highlight of the day was my local mayor stopping by to present me with a proclamation from the City of Warren in support of ostomy awareness. Our local newspaper also highlighted the event.
…because of my video he felt he could now go through it.
After posting my Ostomy Awareness Day photos and story on Facebook I was contacted by so many family and friends willing to support me in the future.
With the pandemic still active, I’ve been limited in getting out in the public but I do try to make an effort to encourage other ostomates daily. I’ve connected with my local Affiliated Support Group leader and I’m looking forward to greater things once we can meet publicly.
On, March 6, 2021 I will be a 39-year ostomate.
I’m on Facebook and I have a Youtube video discussing my ostomy journey.
I’m free, living with my ostomy!
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.
Below are a few myths or misconceptions about using convexity:
- 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.
- 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.
- 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.
- 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”
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.
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.
Why they Happen and What to do
Elaine O’Rourke and Ostomy Nurse and Phoenix Magazine columnist Anita Prinz discuss ostomy leaks, reasons why they happen, what to do and how to help with skin breakdown. There is lots of valuable information in this interview for even those who have had their ostomies for many years. Elaine has had her ileostomy since 2005 due to Crohn’s disease and has had her fair share of leaks over the years until finding the right pouching system for her. If you are having persistent leaks then you should always consult with an ostomy nurse who can help find a solution for you.
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!
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.
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.
United Ostomy Associations of America
P.O. Box 525
Kennebunk, ME 04043-0525
Call us toll-free at: 1-800-826-0826.
Our Information Line hours are Monday-Friday, 9am to 3pm (Wednesday until 2pm) EST. If you have an emergency, please dial 911 or contact your local medical professional.
Please understand that UOAA is a private, nonprofit, advocacy and informational organization. We are not a medical facility and we do not have medical or legal professionals on staff. Therefore, UOAA does not provide Medical, Mental Health, Insurance or Legal Advice.
Would you like to share your personal patient story with us, write a blog of interest to the ostomy community, or share the trusted educational resources of UOAA on your social media channels and encourage ostomates in need to reach out to local UOAA Affiliated Support Groups? If so, consider becoming a UOAA Social Media Ambassador. For more information please contact UOAA’s Communications and Outreach Manager at email@example.com
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