After ostomy surgery, it’s natural to feel sensitive about how your body has changed and be concerned about how it might affect intimacy and your sex life in the future.

Wherever you are in your journey, your sexual well-being is an important part of who you are.

  • Sexual well-being is an important part of everyone’s life, regardless of whether you are in a committed relationship, enjoying or thinking about dating, not sexually active, or unpartnered.1 
  • It covers many areas including body image and self-esteem, sexual function, reproductive health, emotional and physical satisfaction, and can impact both your physical and mental well-being. 1, 2
  • Pleasurable, fulfilling and fun sexual and intimate experiences are not out of bounds because you’ve had ostomy surgery. And no matter what your relationship status, age, gender or sexuality, starting the conversation about sex is just as important as the discussions around diet, exercise, skin issues and generally living with your ostomy.

Here are some topics you can explore in more detail in A Guide to Intimacy after Ostomy Surgery:

  • If you’re not ready, don’t rush. For some, intimacy will be one of the most important aspects of life they want to resume post-surgery, and for others, it might be the last thing on their minds.
  • When you are ready….Communication is the key when it comes to intimacy. Make time to talk to your partner.
  • Enjoying intimacy with an ostomy is anything but boring! Refer to the Guide for tips to increase your, and your partner’s, enjoyment.
  • Sexual orientation: Whatever your gender identity and sexual orientation, there are so many different ways of expressing and enjoying intimate moments including holding hands, hugging, kissing, cuddling and lots more.
  • Common issues that can affect everyone. The most common issues reported to us from people following ostomy surgery are feeling they must resume intimate relationships straightaway, and a fear of disappointing their partner.1 Two very common conditions that can affect sexual intimacy – vaginal dryness and erectile dysfunction – can be experienced by men and women at all stages of life, and whether they have an ostomy or not.
  • Pregnancy with an ostomy: Many women with an ostomy worry that pregnancy will be an issue after surgery, but in the vast majority of cases, it shouldn’t be. Most women are able to enjoy a very typical experience.

For more information, download A Guide to Intimacy after Ostomy Surgery

  1. References: 1. A Cross-National Study of Subjective Sexual Well-Being Among Older Women and Men: Findings From the Global Study of Sexual Attitudes and Behaviors Publication Title: Springer. Publication Date: 4/2006 . Author: Laumann, Edward; Paik, Anthony; Glasser, Dale; Kang, Jeong-Han; Wang, Tianfu; Levinson, Bernard; Moreira, Edson; Nicolosi, Alfredo; Gingell, Clive. 2. What is sexual well-being and why does it matter for public health? Kirstin R Mitchell, Ruth Lewis, Lucia F O’Sullivan, J Dennis Fortenberry. Lancet Public Health 2021; 6: e608–13. Published Online. June 21, 2021. https://doi.org/10.1016/S2468-2667(21)00099-2.

Editor’s note: This blog 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.

By Lynn Wolfson

It is amazing what a boost one can get from dressing to feel and look good, especially those of us with ostomies. I know that when my hair is cut into an easy style that I can maintain, my nails are done and my clothes fit, I feel beautiful. When I feel beautiful, I am happy and share it with the world.

As an ostomy support group leader, I often hear from new ostomates struggling with what to wear after surgery. Many people may have their own style and should explore options to keep wearing the clothing they love. Too many others seem to lose confidence and motivation to dress in the more presentable ways they once did. Overall, I stress to dress so that you feel confident, comfortable, and good about yourself.

So, let us start with the pants. Depending on where the ostomy is located, this will determine whether one would be comfortable with zipper and button pants such as jeans. For me, I find that too restrictive, especially since I have two ostomies. Instead, I prefer either maternity pants, so I have belly room and my legs are not baggy or high elastic-waisted pants. I buy a variety of solid colors of the pants that I find most comfortable.

Unfortunately, men do not have the same choices as women. They should find a brand of pants that are comfortable for them and get them in an array of colors. Stretchable waists can be found on various pants and shorts designs, so don’t feel like you have to resort to athletic wear if you don’t want to.

The tops for women are fun to shop.  I usually get a loose shirt or blouse that goes over the pants. I get multiple tops for each pair of pants so I can mix and match.

Men may still have to tuck their shirts in for business. However casually, they can wear a shirt outside their pants or shorts.

It helps to be beautiful on the outside, especially when I am not physically feeling great.

Since I live in Florida, I only wear pants when it is chilly or when I travel to colder climates.  Personally, I prefer wearing dresses that do not have a waist.  I find them very comfortable and cooler in our hot climate. However, these dresses are not appropriate for business. I do have more tailored dresses without a waistline to wear for business occasions. I generally prefer wearing dresses just below the knee as one of my ostomy bags hangs low.

Shoes should be comfortable. Wear sneakers whenever possible if that’s what you want to do. In Florida, I wear sandals with rubber soles. Up north, boots are a necessity.

Lastly, I get my hair colored and shaped once every six weeks to keep it looking fresh and easy for me to maintain. I also get my nails done every three weeks.

It helps to be beautiful on the outside, especially when I am not physically feeling great. It helps me to get myself going and not have that get back into bed feeling. It is all a matter of attitude!  When I dress for success, I feel good about myself and am successful in getting things done.

Choosing Ostomy Surgery

Before I got diagnosed with ulcerative colitis, I had zero health issues throughout my life, except for high blood pressure. Fast forward to age 26 and I started experiencing a lot of blood in my stool with no idea why. I can be a stubborn person so I didn’t tell anyone what was happening; not even the people closest to me. A few months went by and my mother noticed blood in the toilet pretty consistently and asked me about it. I told her that it had been going on for months and that I didn’t know why.

We ended up going to our local gastroenterologist and they did tests and I got diagnosed with ulcerative colitis. Obviously, I had no idea what it was but he said that I would need to change my diet and to watch what I eat. Fast forward a year or more and I had already been through two GIs and I was being sent to another. They said that I had a very severe case of ulcerative colitis. Meanwhile, around two years in I lost the ability to be able to hold my bowels in for longer than a few seconds. I was miserable, had lost a lot of weight, and also a lot of “friends”. This was also all happening during the COVID pandemic so I wasn’t able to see my doctors in person.

The final year before I got surgery I had lost 40-50 pounds, had been to the emergency department  countless times, as well as hospitalized 3-4 times. I ended up being super anemic and needed iron infusions as well as one blood infusion. That last year was the final straw. The summer of 2021 I ended up losing my bowels on myself 40+ times on my 20-minute drive home from work. I told my boss I couldn’t work anymore and that’s when I first heard about ostomies and started researching. I didn’t know what an ostomy bag was before then but after joining a subreddit on Reddit called r/Ostomy I started to see that an ostomy was the answer to my problem.

I went to my GI and told him that I’m done trying medicine, I’m done not being able to go out and experience life, I’m done with prednisone (which was wrecking my body), and  I’m done being physically, mentally, and spiritually drained. I was completely broken. He said that all he could do was refer me to a surgeon. I arrived at the surgeon’s office begging him for surgery and he said “I’ve never had a patient come into my office practically begging me for surgery, so yes we can do it.”

Getting an ostomy completely changed my life but I didn’t let it completely change me.

Two months later I was walking in for a total colectomy and a placement of a stoma. I was afraid but I knew I couldn’t keep living the way I was. So February 21 of 2022 I got Stoma Steve. It only took a few weeks to know that I made the right decision. I felt better immediately. Luckily, I had a lot of help between my spirituality, my support network, my family, the subreddit r/Ostomy, and the surgeon’s office. I couldn’t have done it alone.

I didn’t want to mention this because I didn’t want it to be a focal point of my story, but at the time of my surgery I had over 5+ years clean from ALL mood or mind-altering chemicals so I didn’t go home from the hospital with any medicine besides Tylenol. Honestly, the recovery wasn’t bad but only a short few months after I developed a prolapse of my stoma. It was a big one but it wasn’t affecting my daily life (besides the anxiety it caused me) so they opted to wait to fix it until I decided whether or not I wanted to keep the stoma forever or get a reversal.

I want to be able to share with people that just because I have something like an ostomy doesn’t mean I can’t do the things I love. Being a bright light in a horrible disease is a blessing for me.

I researched reversals and with the help of family decided that I was going to keep the ostomy bag. So on January 10th of 2023 I got my rectum and anus removed and they fixed my stoma prolapse. Again, the recovery wasn’t bad but this time the hospital stay was horrible. I ended up getting straight cathed three times, I had an NG tube placed because Stoma Steve wasn’t pushing food out and my drain was bothering me for the month I had it. Again, I can’t thank the subreddit r/Ostomy enough because they were who I vented to and talked to for help and coping strategies because no one in my life except them knew what I was going through.

My Ostomy bag and stoma has saved my life. This year has been one of the best years of my life. I explored nature, started exercising, running/walking 5ks, fishing more, cycling, and many other things. I’m a Patient Care Technician in the Behavioral Health Unit in my local hospital. I love being able to help people on a daily basis. Being able to fulfill my purpose; which is helping other people, brings me joy daily. That is why I want to share my story.

I did no know about UOAA until I became interested in wanting to share my story and researched how to get involved with advocacy and sharing about ostomies. I would love to do the Run for Resilience Ostomy 5K on World Ostomy Day this year and get more involved with the UOAA community.

Getting an ostomy completely changed my life but I didn’t let it completely change me. A lot of people don’t understand why I’m so positive and happy most of the time. It is because I have been through a lot in my short 30 years of life and I don’t want to let the bad things outweigh the good things. I want to be able to share with people that just because I have something like an ostomy doesn’t mean I can’t do the things I love. Being a bright light in a horrible disease is a blessing for me.

Thank you for reading!!

When first presented with having a “bag” I was terrified. I had a lot of questions…. How will I wear my clothes? Will I still be able to run or lift weights? Will I ever date again? How can I go to the beach? And so many more. I really was not familiar with this at all.

How UOAA Helps: Connie contacted UOAA before surgery earlier this year and is now on the path to health and happiness in life with an ostomy. Donate to help the next ostomate in need.

I did my fair share of googling, but there are so many conflicting pieces of information out there. I also joined some Facebook groups to find some support.  That proved to be very confusing and often quite discouraging. In February of 2023, a week before my surgery, I met with an ostomy nurse for the first time.  That is when it hit me.  She showed me a practice stoma, put my markings on, and had me look in a mirror with a bag.  I realized I needed more information in order to navigate this the best I can.

Finding UOAA

I came home and searched for ostomy support groups in my area and found one. I immediately connected with them, and they shared UOAA’s information with me. I then went on to their website ostomy.org to gain as much knowledge as possible. I went into surgery with a positive attitude because I knew my life would be so much better afterward.

The people I talked to at UOAA’s office were so helpful! They answered all my questions, and I had a lot!  They directed me to many resources like a New Patient Guide and sent me links to videos and other information which I still use. It is reassuring to know that I can reach out with questions and that they will be there for support.

UOAA has been a lifesaver for me. I was overwhelmed following my ostomy surgery. I am so excited that I am feeling better. I am so appreciative of the connections I have been able to make and the educational materials I have received by contacting UOAA.

On February 23, 2023, I had surgery for an end ileostomy, total colectomy, rectopexy, and hernia and bladder repair. After a lifetime of being a prisoner to my colon and GI tract, a ton of medications, and a ridiculous daily twelve-hour ritual that dictated my days, I finally was given hope to improve my quality of life. The day after surgery I already knew this was the right thing for me, and I somehow felt “free” of all the meds and issues I had before.

Helpful Free Resources

UOAA sent me a welcome packet in the mail with a ton of info about nutrition, living with an ostomy, exercise materials, you name it. The coolest thing was the card to use with TSA when I fly… that is going to be a lifesaver, I think! I had many questions about getting back to my normal activities, and I was sent links to Youtube and even Instagram of people that have ostomies and have resumed, or even surpassed, their pre-ostomy fitness routines.

My experience has definitely been better with my local ostomy group and with UOAA by my side.

A link to an occupational therapist was also helpful. I started following and connecting with many of these people, as I have found inspiration in them. I have since called UOAA several more times seeking answers to my questions, concerns, or even worries. Each time they have promptly responded and provided me with continued optimism as I begin this ostomy journey.

UOAA Helped Me Feel ‘Normal’ Again

I think that the biggest thing is that UOAA helped me to feel “normal” and that I am not alone in this.  Starting out with an ostomy is pretty scary, and there are a lot of unknowns. So much of what you read is negative from people that have had problems or are just very discouraged with their situations. UOAA shares the successes, the positives, and the education so that you can learn and grow each day knowing that you don’t have to give up anything at all.

For me, I plan to get back to my full fitness routine once I am fully recovered. I already feel healthier than I have for so many years.  But I know I still have a lot of learning to do… from appliances (I still can’t figure out the best ones for me), to the different types of foods to eat, to stoma care (I still always want to make sure everything is okay), to traveling, exercise, clothing, wraps, connecting with other people with ostomies, and maybe even dating again in my future. My experience has definitely been better with my local ostomy group and with UOAA by my side.

Grateful to Learn More at the National Conference this Summer

I’m also very thankful to have been awarded a CARES scholarship (FYI, current scholarships have been filled) to attend UOAA’s National Conference in Houston. This assistance will allow me to continue on my journey in a healthy and positive way.

As a single 57-year-old mom, I have three grown children (one still in graduate school), a new granddaughter, and two younger children I adopted, one with unique medical needs – it has not been easy. Last year’s hurricane, coupled with the astronomical surgery costs, have me struggling greatly on a teacher’s salary. I have worked really hard to provide for other people, and I’ve never really done for me.

This conference is something I feel is important for me as I want to be able to live my life to the fullest. I strive to be the best Nana, mom, and person I can be. I want to embrace my body, my life with an ostomy, and continually improve my quality of life.. It will allow me to move forward, make connections, gain much-needed knowledge, be an advocate for myself and others, and to stay OSTOMISTIC!” 

One day I can even envision myself advocating for others in the ostomy world, being active in the ostomy community, and I would love to get to the point where I can even be an inspiration to others.

Connie, you are already inspiring to those of us at UOAA.

Please Donate to UOAA to put other people like Connie on a successful path.  Support quality of life resources, education and advocacy for people living with an ostomy or continent diversion. United Ostomy Associations of America inc. (UOAA) is a 501(c)(3) nonprofit organization and all donations are tax deductible. Thank you!

Shared by Connie Pollina of Naples, Florida

It’s been said before, but it is worth repeating: who you tell about your ostomy and when you tell them is completely up to you. This is the first and foremost rule you should keep in mind when it comes to sharing about your ostomy. Most likely others won’t know you have an ostomy unless you bring it up.  If you are reading this before your surgery, you will need to think about what kind of support you are looking for. As you decide to let people in on your new situation, consider who can offer you the support and friendship you need during this time.

Place of Work

There is no right or wrong way when it comes to sharing about your ostomy at work. It might be that no one needs to know about it, it doesn’t affect your work and you are receiving enough support from friends and family and other people outside of work. Or, your situation might be that you need to take frequent breaks to empty your pouch and so explaining a little bit about your surgery will help your employer to understand what’s going on. Again, feel free to be as specific or general as you want. It might even be helpful to write out a small script so you can go into this conversation with added confidence. Decide how much you want to share, and how willing you are to answer questions.

Family and Close Friends

Hopefully, you aren’t trying to go through this life-changing experience alone. Family and/or friends should be the foundation of your support network. Having someone you trust at medical appointments with you can be helpful for your morale, but also to have another set of ears to remember details and information that you may have missed. When you decide to let other people close to you in on the reality of your situation, ask the person who was with you at those appointments to be there to support you. It’s amazing how much more confident we can feel having the energy of a loving and loyal person at our side.

Romantic Partners

If you are in a committed relationship prior to your surgery, then it’s likely they will be informed of your ostomy and the changes to your body. While it can be scary to let people in and tell them about your ostomy, it can be even scarier to be alone in the process. Going through this with a partner by your side can be so beneficial to your recovery process, and can also help to strengthen your relationship.

Dating after your ostomy can seem daunting at first, but as you heal and become more and more comfortable with your new routine, your confidence will grow.  Keep in mind that it’s completely up to you when to tell a new romantic partner about your ostomy. As with your workmates, you may want to take the time to figure out what you want to say before you say it. It’s okay to keep it short and basic and then decide if you want to take some time to answer questions.

Confidence

The more confident and comfortable you are with your ostomy, the more this will show when you speak about it. Be patient with yourself and allow yourself time to heal and get used to the changes and new routine that an ostomy brings. Try to focus on the positive things that having an ostomy surgery has done for you and your body. It may be helpful to speak with others who are in a similar situation.  Talk to someone who has gone before you and find out how they told people about their ostomy.

It’s up to you who you tell, when you tell them and how you do it.

Visit the Coloplast Care site for more information on sharing about your ostomy at work.

 

Information from Coloplast® Care is for educational purposes only. It is not intended to substitute for professional medical advice and should not be interpreted to contain treatment recommendations. You should rely on the healthcare professional who knows your individual history for personal medical advice and diagnosis.

Editor’s note: This blog 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.

For people who have recently come to accept or are still struggling to manage one ostomy the news that they may need to have a second stoma and pouching system could be overwhelming. Please know you are not alone. Many people are able to thrive in life with two ostomies, or multiple diversions.

When UOAA hears from those with questions for a double ostomate we often refer them to ostomy community friend Jearlean Taylor.  Jearlean wanted to share some advice and invite all double ostomates to her talk and open discussion entitled “Life as a Double Ostomate” on August 12, 2023 as part of UOAA’s National Conference in Houston, Texas.

Sharing with the community of double ostomates is so refreshing and exciting. It is true “we are not alone”. We can live our life as a double ostomate with joy.

I am Jearlean from Baltimore, Maryland. I am a double ostomate, fashion model, author, motivational speaker, entrepreneur, and ostomy advocate.

My life has had some unexpected outcomes. I guess you can say “life” happened. At the tender age of 3 years old I developed a rare form of cancer (Rhabdomyosarcoma). Because of the tumors I had to undergo ostomy surgery, which left me with two permanent ostomies (colostomy & urostomy).

If you or a child come to find you need a second ostomy my advice is to ADAPT. I had to learn to adapt. As I got older it was two major things for me to adapt; body and mind. When we hear two ostomies we get scared, but when we accept what we can’t change it says we are survivors. I adapted to new ways of taking care of my body (ostomies) and keeping my mind positive. Those still adapting to having two ostomies reflect how far you have come and where you are now. Celebrate each moment.

A Common question or statement I get is “you had your ostomies that long. How did you adapt?” The moment I learned to deal with my medical circumstance when my mom explained that I was not different from anyone else. I am beautiful with my bags. I can be, do, and follow my passions and dreams. I can live a full and vibrant life. It happened just as she said. Because of what she instilled in me, I BELIEVED IT.

When we hear two ostomies we get scared, but when we accept what we can’t change it says we are survivors.

Sharing with the community of double ostomates is so refreshing and exciting. It is true “we are not alone”. We can live our life as a double ostomate with joy. We are more than our ostomies.

I also try to give encouraging tips for dressing with an ostomy for comfort and peace of mind. Remember.

  • We are beautiful from the inside out
  • Work with your body type and comfort
  • Look for clothing that YOU like ,and what is comfortable for your ostomies
  • Shopping for clothing; take a family or friend along for support
  • Try on multiple items of clothing, even the clothing in your closet
  • Consider ostomy accessories (ostomy wraps, stealth belt, hernia belt, fitted tops, high waist undergarments, etc..)

We have the ability to make a difference and change lives even through our struggles. You may have an ostomy, dealing with chronic illness, feeling down and inadequate at times, but remember you are more than you have become.  Our situations, challenges, and unforeseen circumstances does not have to dictate who we are or who we can become. My purpose is to inform everyone that “life” happens to us all; good, bad, and indifferent. I want to show people even through our struggles, pain, disease, and even having ostomy we have a purpose in life.

“DIFFERENT TO MAKE A DIFFERENCE“

 

You can find Jearlean online at jearleantaylor.com and across social media. Meet her and a whole community of double ostomates at UOAA’s 8th National Conference August 10-12, 2023, In Houston Texas. 

Written by Danielle Gulden and Joe Teeters

We all know that “laughter is the best medicine”!  This year’s Ostomy Awareness Day Champions, Danielle Gulden and Joe Teeters, not only love that phrase, they live it! These two best friends, and co-founders of Double Baggin’ It are IBD warriors and permanent ileostomates. They’re also comedians, speakers and Two Best Friends without Buttholes!  They truly believe in the power of laughter, humor, advocacy and awareness! Which is why they LOVE Ostomy Awareness Day!  For them, every day is a chance to raise awareness.  But Ostomy Awareness Day is a special day to reflect and celebrate their life-saving surgeries and the lives they were given back! They share their stories so that future, new and veteran ostomates know that they are not alone!

Danielle and Joe have each been living with Inflammatory Bowel Disease for over 29 years.  Although their IBD and ostomy journeys have been quite different, their positive outlook on life and ridiculous sense of humor are the same!

Prior to 2014, Joe and Danielle had no idea the other existed…so, let’s rewind a few decades and learn about the journey of each of these Two Best Friends Without Buttholes!

Growing up, Danielle was a very healthy child, an extremely outgoing teen, and an adventurous free spirit! Spontaneity was her specialty, and travel was always her first love!  Joe, on the other hand, always had “poop problems.” He was always pooping and known as “Joe the Pooper” by his siblings. Like Danielle, he was an outgoing, active, and social teenager.

Fast forward to Danielle’s late teens and early 20s. By the time she was a sophomore at The Ohio State University, Danielle’s health drastically changed! She saw her busy social life dissolve; she’d make plans and have to cancel. Spontaneity was no longer an option, and the idea of traveling was now a nightmare!

Danielle had to drop out of classes because of her poor health.  Her symptoms and pain were becoming harder to ignore. She was in the bathroom around 25 times a day and became extremely malnourished and anemic.

You can hide your bag, but don’t ever let your bag hide you!

After being misdiagnosed for 6 years with a gluten intolerance, a colonoscopy in April of 1999 showed severe ulcerative colitis.  From 1999 until 2007, Danielle’s life was a constant barrage of colonoscopies, radiological tests, bloodwork and pharmaceutical cocktails.   She did the research and finally decided to have ostomy surgery.

After high school, Joe enlisted in the Naval Reserves. He passed the military physical and was cleared for training.  While away, Joe’s poop problems became more pronounced, and the pain was gradually becoming more than just an annoyance.

When he returned home after 5 months, he was in the best physical shape of his life. On the outside he looked healthy, but inside something was wrong. Joe was initially diagnosed with irritable bowel syndrome, then a colonoscopy in 1993 lead to his diagnosis of severe Crohn’s Disease. Two years later he had his first intestinal resection. Joe’s Crohn’s continued to advance, and he had a second intestinal resection in October of 2004.

Back in Cleveland, Danielle was super excited for her ostomy surgery! She was ready to stop being a prisoner to her bathroom and get back to living her life to the fullest! On April 30th, 2007, Danielle had her total proctocolectomy with end ileostomy at the Cleveland Clinic. It was truly one of the greatest days of her life! She high fived every single person on the way to the OR.

From day one, she embraced her ostomy, and her new life as an ostomate. Within a month or two of her surgery, Danielle was back to exploring and enjoying her pre-sickness hobbies and joys. She traveled, hiked, camped, swam, went to concerts, and amusement parks. Life was good again! She also joined the Cleveland chapter of the UOAA and eventually became active on their executive board.

Fast forward a few years, and 120 miles away in Columbus, Ohio. Within a year of his second resection, Joe’s rectal Crohn’s disease became severe, and his rectum very strictured.  After consulting with his GI and surgeon, Joe had a full proctocolectomy with end ileostomy on December 27th, 2012.

Joe’s recovery process and post-surgical experience was very different from Danielle’s. In addition to becoming an ostomate, the amount of bowel he had lost from three surgeries left him with Short Bowel Syndrome. It took the better part of a year to fully recover and return to pre-surgery activities.

During Joe’s recovery, a Facebook support group for ostomates became a lifeline. It was a great source of inspiration and hope, and a wonderful place that showed him he was not alone. Later, he sought out Central Ohio United Ostomy Association support group and became a member of the organization.

By now, you must be wondering how the heck these Two Best Friends Without Buttholes finally met.  As you can see, they have traveled separate but similar paths in their battles with Crohn’s and ulcerative colitis.  Their paths crossed in that Facebook support group mentioned earlier, when Danielle posted that she and her family were relocating to Columbus, Ohio. Joe, being a Columbus resident, and fellow ostomate, reached out and introduced himself. After meeting in person, in late 2014, at their local UOAA Affiliated Support Group, they started hanging out after the meetings. They soon discovered that they had a very similar outlook on life and shared a ridiculous sense of humor, and they wanted to use that to help others. A best friendship began…and slowly but surely, their vision for Double Baggin’ It was coming together. They decided to go to the United Ostomy Associations of America’s National Conference in September of 2015. There, after meeting over 400 ostomy patients like themselves, they decided to stop dreaming and start making their vision for Double Baggin’ It a reality. Double Baggin’ It was born, that week, when they filmed their first DBI video on a rooftop in downtown St Louis, Missouri.

Through Double Baggin’ It, Danielle and Joe use their humor, wisdom, and stories to connect with and support other people living with ostomies and Inflammatory Bowel Disease. They advocate and raise awareness at the local and national level for both United Ostomy Associations of America and the Crohn’s and Colitis Foundation.  Danielle and Joe also visit with their legislators yearly in Washington, DC to share their voices and stories.

You can find them on Facebook, Instagram, TikTok, Twitter and YouTube (@DoubleBagginIt) where you can watch them raise awareness through shenanigans and ostomy-bombing (placing an ostomy bag on a statue, landmark, anywhere they see fit!) They also can be found speaking at IBD and ostomy conferences, support groups, camps, hospitals and classrooms – sharing their stories and spreading laughter through improv. Danielle and Joe know that not everyone is comfortable rocking out with their bags out – and that’s totally ok! What these Two Best Friends Without Buttholes want to make perfectly clear, is that “You can hide your bag, but don’t ever let your bag hide you!”

Join with this year’s Ostomy Awareness Day Champions in spreading awareness by following Double Baggin’ It and UOAA on social media and visiting the Ostomy Awareness Day page to keep up to date on all the latest events.

 

Words and Photos by Jessica Miles

Living with a permanent ostomy can bring on significant changes in one’s personal, social and professional life. My biggest fear around having my ostomy surgery was leakage, particularly in public, skin breakdown and altered body image. There was a lot of trial and error in the beginning, but I have found what works for me as well as the confidence to share about it. I have always been an empath and very compassionate, however, I have now found a new passion for helping others (through my surgeon and on social media) learn how to manage their ostomy as well as how to cope with their new life. If you are willing and able to adapt, you can do anything!

In 2016, after years of unexplained symptoms, countless procedures, hospitalizations, tests, and a couple of misdiagnoses, it was confirmed that I had a genetic connective tissue disorder caused by a defect in the protein collagen. I was diagnosed with Classical type Ehlers-Danlos Syndrome. More than 90% of people with Classical EDS have mutations in the COL5A1 or COL5A2 gene. I have a mutation of the COL5A2 gene. The condition is inherited in an autosomal dominant manner. Treatment and management is focused on preventing serious complications and relieving symptoms.

Classical EDS is associated with skin hyperextensibility, joint laxity, fragile blood vessels, joint hypermobility, migraines, joint and muscle pain. Some individuals with this subtype have a deformity of heart valves and may experience a dilatation of the aorta. In cEDS there is also an increased risk for aortic dissection. cEDS patients are prone to hernias and organ prolapse, as well as comorbidities such as autonomic dysfunction…which regulates heart rate, blood pressure, temperature, pupillary response and digestion.

I ended up having multiple surgeries over the past four and a half years due to intestinal dysmotility, prolapses and hernias, resulting in a port and a permanent ostomy. I now, have an ascending end colostomy. While I prepared for years for the possibility of having one, I realized nothing truly prepares you for the actuality of living with a bag on your belly for the rest of your life. Though little by little, the stigma took a back seat to the reality that life with an ostomy can be just as good, if not better for some, than life without one. I suffered constantly from abdominal pain, nausea, vomiting, bloating, constipation, bowel obstructions and malabsorption. While I still struggle with many debilitating symptoms of my disorder, I am now able to eat, gain weight and go to the bathroom regularly. Something I always took for granted until I was no longer able to do so.

My symptoms aren’t usually visible to the untrained eye, but they are life-altering for me.

Though I have a constant physical reminder of my condition in the ostomy, to the rest of the world, mine is a largely invisible illness.

It’s hard to describe how I feel to someone who has no idea what daily life with a chronic illness is like. I feel awful on the inside but look perfectly fine on the outside. Putting on a brave face for all to see has become a habit. My symptoms aren’t usually visible to the untrained eye, but they are life-altering for me.

I’ve learned to take everything step by step and day by day. My goal is to break down the stigma of ostomies, and while it’s not always easy, to show that one can still thrive and live a happy life with chronic illness. Due to pain and fatigue, I’ve learned to budget my energy, and while I may function normally one day, I usually need to rest the next. It’s all about finding balance. I am blessed to have an amazing support system in my husband and two boys, the rest of my family and friends.

For me, photography has been a powerful way to document my health journey and what I experience every day. It helps me see my progress, as well as setbacks in a cathartic way.

I am a registered nurse nationally certified in inpatient obstetrics. Unfortunately due to my illness, continuous surgeries and hospitalizations, I made the most difficult decision of my life and gave up the profession I worked so hard for and one that was a huge part of my identity. I am also an award-winning, internationally published photographer, focusing primarily on birth photography and self-portraiture. I found a new purpose, capturing laboring women and their deliveries combined both of my passions: childbirth and photography.

As a photographer, I believe that art enhances the well-being of individuals, society, and our environment and that artists have the power to heal, inspire, provoke, challenge, and offer hope. For me, photography has been a powerful way to document my health journey and what I experience every day. It helps me see my progress, as well as setbacks in a cathartic way. Photography allows people to see different perspectives and can be used as a tool for personal healing and positive change for many while nurturing creativity and self-expression.

My favorite quote is by the artist, Frida Kahlo. “At the end of the day, we can endure much more than we think we can.” I have definitely found this to be true and learned I am much more resilient than I ever thought I was. My illness has caused me to know myself better, which keeps my work honest and true. In the process, you truly meet yourself, which makes for better, more authentic work.

By Ellyn Mantell

We are at that stage of life where so many in our world are dealing with issues that require care. All are in shellshock! Those who require help were frequently the backbone of their family, their community, their businesses, and suddenly, they need care.  Family members are called upon to play a different role, that of becoming the caregiver with little to no preparation. It rattles everyone, can separate and cause feuds in families, and can go in a very negative direction. But if everyone has their eye on the prize, that of supporting the one in need, there will be an amazing sense of camaraderie, and I believe, much more success. Now, more than ever, people need each other.

I want to share some thoughts with you in the event you or someone you know finds themselves in this situation:

  • Help to create a plan of action, logically and without emotion. Remember to focus on what is best for the patient (or one in need, but we will refer to them as patient) Ask professionals for guidance, but let them know your resources, financially, personally and physically. Bravado doesn’t have a place here…be open and honest. Nobody can do it all, and nobody expects that.
  • Bring family and close friends together and have open conversations about the direction being planned. It is dangerous to assume you know what others are thinking, and it is subterfuge for others to talk without involving you directly. Make it easy for family and friends to come to you, and do not put up a wall. Nobody benefits when that happens and too much time is wasted! Listen, gather information, keep an open mind, and then feel empowered to make decisions.
  • Keep a journal of what is happening to your loved one and yourself. Being mindful of the experience and noticing how you are growing and changing is valuable. It will help with each step you take. These things are most often a process, and not “fixed” on the schedule we desire. Additionally, for the patient, knowing what tests have been performed, the results, in one place, can be invaluable.
  • There are many resources available, but it is a minefield for those who are dealing with the patient. Ask a valued friend or family member to make calls on your behalf or help them navigate the internet. As an Advocate, I receive countless phone calls from family members and friends asking for my guidance. I praise those who reach out on someone’s behalf, and know the patient is so fortunate to have that type of loving concern.
  • Finally, although I could continue for pages, take the Caregiver to lunch, do something special for them, acknowledge all they are doing and the amount on their plate. Call, reach out and do what you can. This is such a trying time, and certainly, we are all aware of our vulnerability. Pay it forward and watch how it helps.

 

Ellyn Mantell is a UOAA advocate and Affiliated Support Group leader from New Jersey. This post first appeared on her blog More Than My Ostomy.

By Makeda Armorer-Wade

Who knew that having an ostomy would be such an enlightening journey?

I was terrified. But my ostomy was just the beginning of this new experience for me and my entire family. When I received my first ostomy, it was an emergency surgery. There was no time to prepare, learn or even have a voice. It was life or death, and since I spent the previous three decades fighting for my life, I chose the ileostomy. Up until that point, I knew nothing much about an ostomy, other than I didn’t want one. When I considered that point, I realized it was because of the cavalier attitude of a medical professional, who told me,“what’s the big deal, a lot of people live with ostomies.”

I quickly learned that I had to live that Possibility Lifestyle. I learned that I was in charge of my mindset and could change it at any time with a little motivation. I don’t want to give the impression that it was easy, because it wasn’t. But I would need to learn because I was being discharged. When I got home, I decided to take myself to ostomy school. I did as much research as I could, in order to be able to function and live some quality of a life.

It was very difficult and took about 90 days to get accustomed to my new best friend. By the time I was beginning to accept my ostomy, I was given the date for my takedown. I still had a month to go and I had already lost 100 lbs. I was already counting down. I believe that my biggest challenge with my first ostomy, was the fact that Crohn’s Disease had ravaged my body. So, it wasn’t just the ostomy, but I was so weak and depleted, and unable to absorb any nutrients. At one point, I had a TPN line to feed me.

When the day came for me to go to the hospital, I celebrated and gave away all of my ostomy products to patients that I thought could use them. Simply said, I was done and over it. My recovery didn’t happen as quickly as I wanted, which required me to be patient and work my P.L.A.N.© I needed to Prepare and figure out what my diet would be to help me put some weight on. I was down to 98 pounds. I had to Let go of the shame that I was feeling, realizing that all of this was out of my control. I had to ask for help, because I just didn’t have the strength to do it myself. And I vowed to Never give up, because I desperately needed to live The Possibilities Lifestyle.

I knew that the possibilities for my life were endless, if I could just hold on. I just had to believe.

It took me about 12 weeks to be strong enough to go back to work. I had to believe, that just maybe my doctors and nurses were right. Everyone couldn’t be wrong. The messaging was consistent. “God must have something special for you to do”. Every time I met a new medical provider who reviewed my record, they would say, “Wow you have some story. You must have something important to do, with all that you have been through.” The Residents would ask permission to interview me.

I truly believe that when you receive an assignment from God, you will have the necessary experiences and pressure to become masterful. Just like the pressure needed to produce a diamond. I have learned so much with each surgery and recovery.

Fast forward six years. And here we go again. Crohn’s disease was causing significant problems with my health. After a conversation and encouragement from my gynecologist, I called my surgeon and made an appointment. After numerous tests, we made the decision to move forward with another Ostomy. This time a colostomy. (A colostomy is a surgical opening in the large intestine that is brought through the abdominal wall). This surgery was different, in that I initiated the conversation. I was armed with information and I had some semblance of control. This all matters in your perception of your ostomy.

Climbing the valley after this surgery started like the others, on a walker and a liquid diet. And the determination needed to propel myself forward was there as well. I was looking up knowing I had made the right decision. I began sharing and supporting other ostomates in monthly meetings at the hospital.

The more I encouraged others the better I felt about my own situation.

I began working with a life coach who encouraged me to be kind to myself and set goals that continued to positively impact my recovery and healing. This was the best thing that I could do. I knew from my conversations with ostomates that they needed an adjustment period and continuous support. With everything I shared, she continued to reinforce that my story was no longer mine. She said “do you think you went through all that you did, just to suffer?” My answer was no. I already knew what I had to do. It was all in the Value of the Valley. If you want to know how that turned out, stay tuned.

Your Ostomy is Just the Beginning Part 1

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.