‘UOAA Has Been A Lifesaver for Me’ Says New Ostomate

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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

We’re here for Colorectal Cancer Survivors

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By Cheryl Ory, UOAA President

President Biden has proclaimed March 2023 National Colorectal Cancer Awareness Month. The American Cancer Society says that colorectal cancer is the third leading cause of cancer related deaths in both men and women. On another note, the death rate has been dropping for several decades. One reason is that treatments have improved. Another reason is that colorectal polyps are now being found more after screening and removed before they can turn into a cancer.

UOAA Advocate, ostomate and colorectal cancer survivor Allison Rosen speaks on the National Mall as part of the United in Blue Rally sponsored by Fight Colorectal Cancer. Video: United in Blue Rally on the Mall (1)

In 2008 I was diagnosed with Stage 3b colorectal cancer. I was told the cancer had been developing for at least 10 years or more, most likely when I was in my early 30’s. There was a polyp, if it had been removed at an earlier date the cancer would not have developed. After radiation, chemo, surgery, and more chemo I am now a colorectal cancer survivor with a permanent colostomy, an ostomy that has saved mine and others lives from not only cancer, but other debilitating diseases.

I’m happy that UOAA is standing alongside partner organizations like Fight Colorectal Cancer to push lawmakers into giving attention to the alarming rise in young people with colorectal cancer.

With younger people being as risk and diagnosed , The U.S Preventative Services Task Force lowered the recommended screening age to 45 in 2021.  One in five colorectal cancer patients is between the ages of 20-54. Talk to your doctor about options for colorectal cancer screening. As the Colon Cancer Coalition states with earlier screening and detection, “Colorectal Cancer can be  Preventable, Treatable, Beatable.”

If you are a person still at risk, like those with IBD, let me urge you to get screened. Screening can result in any colorectal cancers being found earlier when they are easier to treat.

Here at United Ostomy Associations of America (UOAA) we have a long legacy of supporting the survivors of cancer and many other conditions so that they can have best quality of life possible. If your cancer requires a life-saving ostomy surgery remember-you are not alone. 725,000- 1 million people in the U.S. of all ages and backgrounds live with an ostomy.

Every individual person’s disease treatment is unique but ostomy surgery for colorectal cancer may mean a temporary ileostomy (from the small intestine) or colostomy (large intestine). This may be required to give a portion of the bowel a chance to rest and heal. When healing has occurred, the colostomy can often be reversed and normal bowel function restored.  It’s important to know that not everyone with an ostomy will be a candidate for a reversal operation. A permanent colostomy may be required when a disease affects the end part of the colon or rectum.

We have new Living with a Colostomy guide and ileostomy guide to help you learn as much as possible before or after you have this life changing surgery.

It’s especially important to connect with one of hundreds of  UOAA Affiliated Ostomy Support Groups in the U.S. before, or shortly after, your surgery. Peer support and preparation can put you on the path to success in what may be a challenging time both emotionally and physically.  Ask if the hospital has a certified ostomy nurse and insist on having your stoma placement marked before surgery. These and other self-advocacy tools are paramount and outlined in our Ostomy Patient Bill of Rights.

You may feel too overwhelmed as you are discharged at the hospital to fully understand ostomy pouching systems and accessories and lifestyle considerations. If you have a  medical question contact your doctor or nurse, but if you have a quality of life question-UOAA resources here at ostomy.org and peers at UOAA Affiliated Support Groups likely have the answers.

It’s important to learn the facts about living with an ostomy. After the healing period outlined by your surgeon you can swim, bathe, be intimate, travel, and embrace a new normal life. After some trial and error, you may also eat most of the foods you have been able to eat in the past. Education is key to battling misinformation.

Unfortunately misinformation and stigmas surrounding both ostomy surgery and colorectal cancer affect the number of people getting screened or getting the medical treatment they need.  Let’s work together to educate, advocate and support survivors.

 

Cheryl Ory is a colorectal cancer survivor who received a permanent colostomy in 2008. Cheryl is a Registered Nurse who has had a passion for volunteering with the ostomy community ever since and first joined UOAA’s Board of Directors in 2015. She now holds the position of President.

 

 

 

We All Need Ostomy Friends

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Why You Should Join UOAA as an Official Member

By Alyssa Zeldenrust

(National Conference attendee since 2011, DuPage County Support Group (suburban Chicago), Co-Chair of Events for Young Adults)

UOAA friends, educational tools, and vendor fairs have been lifesavers for me, so I’d like to share a bit about why I’m a member and what UOAA has to offer.

United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) nonprofit organization that supports, empowers, and advocates for the 725,000 to 1 million of us Americans who are living with an ostomy or continent diversion (like a J-Pouch.) There is no need to feel alone, approximately 100,000 new life-saving ostomy surgeries are performed annually in the United States.

Without UOAA and medically diverse friends, I don’t know where I’d be today.

You can join one of the 300+ Affiliated Support Groups in the U.S. for local peer support and information. Whether you’re new or an ostomy veteran, you can get a lot out of UOAA resources.

I make sure every younger person I see at UOAA’s National Conference is welcomed into our group.

In my personal experience with my local support group, it’s a great way you can make friends who truly understand your situation. If you’re an ostomy veteran, you’re incredibly important to the new members of the group because you can guide them through difficult situations. Local ostomy friends are great because you can do social events in addition to support group meetings. I’ve gone to concerts, dinners, and parties with local buddies and it makes me feel so welcomed because nobody judges my body and we all tend to have a little bit of a dark sense of humor after a few years of illness or surgery.

Everyone should also become an official National Member, there is a membership for medical professionals as well. UOAA offers the National Membership for Individuals for an annual fee of $20.00. As an Individual Member you will receive UOAA’s:

  • National Membership pin and a stoma rose pin
  • Monthly e-Newsletter
  • New Ostomy Patient Guide
  • Plus, you’ll be notified when new or updated educational materials are available.
  • Have voting rights for our national elections
  • Can be nominated to be elected to serve on our Board of Directors
  • Will get a membership packet that includes a special promotion code to subscribe to The Phoenix magazine at a discounted rate.

Joining is also about standing up and being counted for advocacy purposes.

When I was too sick to attend the Run for Resilience Ostomy 5k my parents and fellow support group members made sure I was there in spirit with my face on masks.

Some local support groups host regional conferences that can be great. I had so much fun at the Midwest Regional Conference when I was lucky enough to go, and I left with a bunch of notes and new products to try.

National conferences are usually held every two years (Houston, Texas Aug 11-13, 2022 is next!) and are major events that turn me into a tornado of attempted hospitality. I make it my personal mission to find all the younger crowd and make sure nobody is left out and everyone has a chance to bond outside of the educational sessions. We have fun going all out with the parties and dancing up a storm. One of my favorite things has always been the vendor fair because you always find new things to try, and you can talk to people directly about their product. The educational sessions are so good that sometimes I truly have trouble choosing, so then we split up and take notes for each other.

A few people admitted to me later that they didn’t expect to leave with new, actual friends. That sort of thing just makes my heart happy. Without UOAA and medically diverse friends, I don’t know where I’d be today.

 

A version of this article first appeared on Allysa’s blog Partially Unstuffed

 

 

Support is Crucial

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Written by: Brenda Elsagher, Director of Affiliated Support Group (ASG) Affairs, United Ostomy Association of America

Support. I’m not talking about my bra, although it could win an Oscar for a supporting role! I’m talking about the kind of encouragement you get from knowing another person with an ostomy.

I freaked out when I was 39 and had to have a colostomy. I wanted a point of reference and needed to talk to someone who had a stoma. I wanted to know what to expect; I wanted to prepare my body and mind for the changes coming my way. There was no internet and no social media. I didn’t even know there was any other kind of ostomy besides a colostomy.

My Wound, Ostomy, and Continence Nurse (WOCN) was a great source of comfort. She calmly explained, without horror, that excrement (OK, I think she actually said “stool” – and I wouldn’t have used either of those words) would be coming out of my abdomen and into a bag that would somehow adhere to my body.

She made it sound like it would become so natural, as if I was adding a quart of milk to my shopping list. No big deal. You’ll get this in no time at all. And she said all of this with a confident smile – a genuine one, not a fake one like when people are trying to help you through something awful. I felt she meant it! So, I let myself believe her.

During one of my subsequent visits to her office, I saw a newsletter that listed a meeting time for people living with ostomies. I went to the meeting, and realized that this was my tribe. For many attendees, these gatherings were the only ostomy support they had, other than their loved ones who tried to understand but could never quite get it. Besides, here were people I could eat a meal with while talking about changing ostomy pouches. You can’t do that with every crowd! I met life-long friends at those meetings, and that was an unexpected perk.

Then I heard of a conference, the United Ostomy Associations of America (UOAA) national conference, where people came from all over the USA, and some from Canada and other countries too. It featured classes, social events, great speakers, and time to get to know more people with ostomies. A young man I talked to recently told me that he met someone at the 2009 conference who changed his life and made all the difference. If we only knew the power of a quiet conversation and how its impact can be phenomenal. We can be a resource for one another. That’s why I suggest regular telephone check-ins or video calls with UOAA Affiliated Support Groups (ASGs), because both can play a crucial role in helping someone feel connected.

I also found information galore and updates on the latest innovative technology for people with ostomies in The Phoenix magazine (the official publication of the UOAA), which still exists today. Not long after, I got America Online (AOL) and felt like I was on the forefront of technology. I had a computer, and now the internet. Imagine horns blasting – my world opened up and the exchange of information worldwide was awesome. Even more ways to communicate! A woman in Colorado who read my book, “If the Battle is Over, Why am I Still In Uniform,” emailed me, decided to get a colonoscopy, and was spared from cancer. That is a satisfying feeling, to know you gave up a year of your life to write a book and it saved another.

I began to speak across the USA. Who would have thought that 25 years later I am still talking about bowels and butts, or dare I say the lack of them in some cases? The people I have met, the conversations I have had, the opportunities that have come my way – all because I chose to meet with a small group of people. That experience led to an abundance of support, not only for me but for others I know with ostomies or continent diversions, because of all that we shared. Some shared their misery, some shared their success, and some listened, learned, and began to feel that they could deal with their situations. Finding the group was life enhancing, and even life-saving in many cases. I kept coming to help others, but have been helped in return many times over. A phrase that I often heard at the meetings was, “Someone reached out to me in the hospital, and I want to do the same.”

In my new role as the UOAA Director of ASG Affairs, I have come full circle as a volunteer. I meet so many people across the USA that are actively reaching out to others, and helping them on their paths to recovery of mind, body, and spirit. I am their cheerleader. Sometimes I can offer a suggestion or teach them how to use Zoom to stay connected. I have always known that the UOAA had our backs but I have now found so many more resources on their website that I never knew existed. There are over 300 ostomy support groups in the USA for people with ostomies and continent diversions. And for people who don’t like to go to group meetings, there is an individual membership too that gives them full access to an abundance of resources.

There is no right way or wrong way to have an ostomy. You don’t have to shout it out to the world, but there also is no reason to be ashamed about it. I honor your privacy, and thank you for honoring my desire to be public. Both are good. We are alive and grateful!

 

This article originated in the Hollister Secure Start services eNewsletter. For more ostomy resources at your fingertips, subscribe here.

Brenda Elsagher is an author, international speaker, and comedian, and also volunteers with the UOAA. She has been living well with an ostomy for 25 years. Find out more about Brenda at www.livingandlaughing.com, and follow her on Facebook @BrendaElsagher. 

Financial Disclosure: Brenda Elsagher received compensation from Hollister Incorporated for her contribution 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.

New Ostomates Deserve Our Best

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By Ellyn Mantell

Welcome to my fantasy.

We all have our fantasies, so come along with me as I describe one of mine…new ostomates (those with ileostomy, colostomy or urostomy, all having had stoma surgery) would begin their adjustment to their new life with all of their questions answered, they would have knowledge and be welcomed into an Ostomy Support Group, they would have a connection with a Wound, Ostomy, and Continence Nurse (WOCN) and they would recognize what a gift, what a lifesaver an ostomy is.

My concern is that this is not the usual for ostomates, either new or even those who have them for many years. In New Jersey, particularly where I live, there are many resources available, and yet, even in our sophisticated arena, many ostomates leave the hospital uninformed and underserved. Prior to Covid-19, I visited patients in the hospital or in rehab facilities to answer their questions. I brought journals and pens so they could write their emotions, concerns, and observations, and refer back to their notes as they made progress. I am so anxious to return to that important undertaking as soon as it is safe to do so.

When I had my surgery in March of 2014, my surgeon told me I would be in the hospital for 5-7 days. However, I felt so well, so quickly, that I was able to leave 4 days later. That was pushing the envelope, but I was so used to recovering from abdominal surgeries, having had 22 before that, my ability to go into recovery mode was well-entrenched. The majority of patients need so much more time, and now, even 4 days is more than they are offered.

Back to my fantasy, and my pipe dream of a great transition for new ostomates:

How can questions be answered, and knowledge gained as needed? 

The majority of ostomies, even those performed in an emergent situation, require marking the abdomen for placement of the stoma (opening.) That is typically done by the Wound, Ostomy, and Continence Nurse (WOCN) and that is the person who comes to the patient’s room post-op to begin to prepare the ostomate for life at home. In an ideal world, the WOC nurse has written information to share, which once home, will make more sense, and provides contact information for any questions. Additionally, the ostomate is put in touch with the United Ostomy Associations of America to become part of a bigger group of kindred people.

How do we find Ostomy Support Groups in our area?

I am involved in three Support Groups, becoming president of one already formed when I had my ileostomy, and then worked with WOC nurses at two other hospitals in the area to form new ones. Until Covid hit, these were growing so nicely. But we are meeting virtually now, and staying as close as possible, knowing that the day will come when we are back together. It is wonderful to see “my people” who share my concerns, experiences and fears and accomplishments. We help each other in countless ways. People reach out to me through the WOC nurses in the area, United Ostomy Associations of America, The Phoenix Magazine, the American Cancer Society, three hospitals, and through word of mouth. Because I am so open and revealing about my ileostomy and Lily, my stoma, I believe my name pops into the minds of people when they know someone in need.

Ostomies are Lifesavers! “Read all about it!”

An ostomy provides the gift of health for many, many medical situations, including cancer, ulcerative colitis, Crohn’s disease, diverticulitis, motility issues and devastating organ injury. We live in good times for our supplies and the ability to try new and innovative appliances and accessories. The Phoenix Magazine is a great resource for all, and assists in wading through the confusion many feel. Motivational stories and practical guidance round out the offerings.

A final word about those we call our Angels…the Wound and Ostomy Nurses.

Establish a relationship with one, and if there is an Ostomy Clinic or Ostomy Center in your area, use it! These nurses are your connection to properly-fitting appliances, the correct supplies and accessories, questions and personal support, as well as the ability to refer to a Support Group. More and more are entering the private sector and providing services such as home visits, particularly to those who cannot travel to a clinic or office, and your surgeon may even have one in the office to help navigate the transition to life as an ostomate. We call our WOC nurses our Angels, and that is exactly what they are, ladies and gentlemen with big wings to support us!

 

Ellyn Mantell is a UOAA advocate and Affiliated Support Group leader from New Jersey. You can follow her personal blog at morethanmyostomy

Virtual Support for Ostomy and Other Needs

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By Ellyn Mantell

It continues…the pandemic is rearing its ugly head and seems to be gaining strength once again, despite never universally weakening. Whereas we assumed by this time in the fall, we would be back to some sense of normalcy, we are, instead, buying jackets, shawls, gloves, and hats so we can eat outdoors and continue to safely socialize. Travel requires an army intelligence level approach including Ultra Violet wands, visors over masks, dozens of wipes, and gallons of hand sanitizer. Seeing family feels like a tease, since hugging and kissing are off-limits, with no change in sight. I could go on, but you know all of this, and more.

The one good thing that keeps me upbeat is the wonderful feeling of connecting with our support groups via Zoom. Ostomates still have concerns and needs, surgeries continue to happen, and new members need a safe place to begin their journey to their new normal. Even those of us who are comfortable and knowledgeable still need the same safe place to discuss concerns that continue to develop. And the ability to see familiar faces goes miles in feeling comfort.

I know from others who are doing virtual support group meetings that they, too, are feeling so much more secure in the roads they are traveling. Whether it is AA, or NA for addiction, or Alzheimer’s support for spouses or caregivers, cancer survivors, etc., people need to be able to talk and gain strength. Perhaps the ability to remain anonymous may be even more positive than in-person meetings.

Zoom and virtual meetings have been a lifesaver, and had we not been in this demanding situation, we may never have discovered that. I can still remember being asked to participate in a Zoom meeting a few years ago, and running as quickly as possible away from the involvement. It seemed so overwhelming and daunting. But necessity is truly the mother of invention, and I am eternally grateful that Zoom has made itself available for the masses.

Please consider reaching out to an ostomy support group via a computer or smartphone, if you are in need of…support. There is, undoubtedly, a group to help with almost every issue you may have. I believe I speak for those who facilitate when I say we care about you, want to help you, are likely to share your concerns and feelings, and most of all, are committed to you. I know that each ostomate who walks into my life represents an opportunity to help them look at their new life in a positive way, and with that in mind, our value is rather invaluable!

Ellyn Mantell is a UOAA advocate and Affiliated Support Group leader from New Jersey. You can follow her personal blog at morethanmyostomy

Reach Out for Ostomy Support

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You are not alone, A Community of Support is Here to Help

By Ellyn Mantell

Upon returning from a day of errands, my hands full of packages and bags of food, the phone rings, and it is a familiar call. It is from a woman who is fighting tears (this I recognize from the many calls I receive) and immediately, bags and packages left on the floor, I go into SUPPORT mode. I imagine this lady has used every bit of determination and perhaps energy she has to call a total stranger to discuss the most intimate details of her health and anatomy. She needs my full and undivided attention, because if I am remiss in that area, she may never reach out for help again. Before we even move past the pleasantries of conversation (hello, how are you?) I know she has been through so much. She will tell me the details, and each survivor is unique, but I already know she is scared, suffering and feeling terribly alone.

This lady tells me she is extremely disappointed because she just discovered that her colostomy, which resulted from the loss of some of her colon, will not be reversed, as she had hoped. It is too dangerous, and her ulcerative colitis is rearing its ugly head. Instead of the reversal, she needs her colon and rectum removed, and will, therefore, have an ileostomy. It has taken her a year, she tells me, to accept what she thought was a temporary colostomy, and now she will need a permanent ileostomy. Not only is her head spinning, but she is feeling like she has lost total control of her life.

These are feelings we all have, and my heart is right there with her as she laments the loss of yet another part of her body. Looking ahead to at least another major surgery, we discuss the fact that she is in mourning and grieving, and then her tears began to flow. I tell her to please cry, sob, let out her feelings, whatever they may be, I am up to the task of listening and comforting. After all, I have had 23 major abdominal surgeries…I have had my share of tears and need for comfort.

We end the phone call with each of us making a promise: she will attend our next Ostomy Support Group at Overlook Medical Center in Summit, New Jersey, and I will be there to listen to her fears and concerns as long as she is in need of sharing them. I told her I wear a flower at each of the Support Group meetings I lead, because I have had so many sent to me over the years and that it is a great way of identifying myself to new members. Flowers always bring a smile to others. She will find me the day of the meeting, because I will be waiting in the foyer to bring her in, make her feel comfortable, introduce her to many like herself, and show her how special she is for reaching out and asking for SUPPORT!

Reach Out to a UOAA Affiliated Support Group near you and learn more about the emotional impact of ostomy surgery.

Ellyn Mantell is a UOAA advocate and Affiliated Support Group leader from New Jersey. You can follow her personal blog at morethanmyostomy

 

Ostomy Support for Bladder Cancer Survivors

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Urostomy and Continent Diversion Patients Find Support and Education from Peers at UOAA.

By Ed Pfueller, UOAA

May is Bladder Cancer Awareness Month. According to the American Cancer Society, this year more than 80,000 people are expected to be diagnosed and approximately 17,000 will die as a result of this disease.

Bladder cancer survivors are a major part of the ostomy community represented by United Ostomy Associations of America (UOAA) through support groups, educational resources, and national advocacy.

For those with this cancer who require their bladder to be removed, a urostomy or continent diversion may be necessary. A urostomy is a surgically created opening in the abdominal wall through which urine passes. A urostomy may be performed when the bladder is either not functioning or has to be removed. There are several different types of surgeries, but the most common are ileal conduit and colonic conduit.

Be Prepared

Our new ostomy patient guide is available to all who need it and it is a great overview of what to expect. Our urostomy guide has even more in-depth information. If you have a medical question contact your doctor or nurse, in you have a quality of life question- UOAA likely has the answers.

If you or someone you know is in need lifesaving ostomy surgery remember-you are not alone. 725,000- 1 million people in the U.S. of all ages and backgrounds live with an ostomy. Connecting with UOAA resources is critical. Especially seek out one of our almost 300 UOAA Affiliated Ostomy Support Groups in the U.S. before, or shortly after, your surgery. Peer support and preparation can put you on the path to success in what will be a challenging time both emotionally, sexually and physically. Ask if the hospital has an ostomy nurse and insist on having your stoma placement marked before surgery. These and other self-advocacy tools are paramount and outlined in our Ostomy Patient Bill of Rights.

Other surgical options after bladder removal may not require an external pouching system such a continent pouch, or orthotopic neobladder. Continent diversion surgery needs lifestyle consultation and thought before being seriously considered since these surgeries are extensive and have possible complications including incontinence.

Read more in-depth here about continent urinary diversions such as an Indiana Pouch. This uses the creation of an intestinal reservoir with a catheterizable channel that is brought from the reservoir to the skin with the creation of a stoma. The Indiana pouch has become the predominant urinary diversion for patients who desire continence.

Another diversion is the Neobladder. The creation of a reservoir (neobladder) that is surgically connected to the urethra. It is created for those who do not want a stoma and wish to void per the urethra.

Before surgery, it is also best to learn some facts about living with an ostomy. After the healing period outlined by your surgeon you can swim, bathe, be intimate, travel, and embrace a new normal life. For more information read our Tips for a Succesful Recovery After Ostomy Surgery and use it as a roadmap for success.

Urostomy Tips

For help getting a good night’s sleep with a urostomy, night drainage systems are available to collect and store urine so can sleep without having to empty your bag multiple times during the night.

Unlike some people with gastrointestinal ostomies there are usually there are no dietary restrictions and foods can be enjoyed as before. It is suggested that 8-10 glasses of fluid per day be consumed to help decrease the chance of kidney infection. We also have information on how to retain an acid PH balance of your urine.

Sexual function is influenced by the reasons for which the urostomy is performed. The urostomy itself should not interfere with normal sexual activity or pregnancy. UOAA Affiliated Support Groups are available for individuals and partners seeking emotional support. Our Sexuality and Intimacy Guide may be helpful in facing any new challenges.

Connect with a Community

If you have not had the chance to connect with others with a urostomy, UOAA’s 7th National Conference is a unique opportunity. Urostomates will find camaraderie and education with others from around the country. A few of the urostomy specific sessions include a Basic Urostomy session with Dr. Edouard Trabulsi, MD, FACS and a urostomy meet and greet. There is also a “Ask the WOC Nurse – Urostomy” session with Marie Brown-Etris, RN, CWOCN and other general sessions to get your urostomy or continent diversion questions answered.

This Bladder Cancer Awareness month you can send us your photo and urostomy survival story on social media and we may share your patient story. You may also be interested to know that people also have a urostomy due to spinal cord injuries, malfunction such as chronic infection of the bladder and birth defects such as spina bifida.

Celebrate Bladder Cancer Awareness Month and connect with the Bladder Cancer Advocacy Network (BCAN) on all the ways to make an impact. You’re also invited to join with UOAA for Ostomy Awareness Day on October 5, 2019 or participate in one of our Run for Resilience Ostomy 5k events around the country. We hope you’ll consider a donation, joining our advocacy efforts, or taking part in a support group to give back to the next cancer survivor in need.

 

When to Contact Your Stoma Care Nurse

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Your stoma care nurse has the specialized training to help you care for your ostomy and address any issues that arise. These professionals are also known as “WOC” (wound, ostomy, and continence) nurses. Stoma care nurses are there to help you make a smooth transition after surgery, and can give you the training you need to care for your ostomy at home. You should consider them your “go-to” resource for ostomy care education, consultation, and troubleshooting.

In honor of WOC Nurse Week, celebrated every year in mid-April, it is important to recognize the ongoing role that stoma care nurses can play in your ostomy care.

When to Contact Your Stoma Care Nurse

Not every ostomy care challenge warrants contacting your stoma care nurse, but certain issues are causes for concern and should be assessed by a trained professional. Connect with your stoma care nurse if you notice any of the following problems.

If you have a colostomy or ileostomy, call your ostomy care nurse if you notice:

  • Skin irritation
  • Recurrent leaks under your pouching system or skin barrier
  • Excessive bleeding of your stoma
  • Blood in your stool
  • A bulge in the skin around your stoma
  • Persistent diarrhea
  • Diarrhea with pain and/or vomiting
  • A stoma that appears to be getting longer

If you have a urostomy, call your ostomy care nurse if you notice:

  • Any sign of urinary tract infection
  • Skin irritation
  • Urine crystals on or around your stoma
  • Recurrent leaks under your pouching system or skin barrier
  • Warty, discolored skin around your stoma
  • Excessive bleeding of your stoma
  • Blood in your urine
  • A bulge in the skin around your stoma
  • A stoma that appears to be getting longer

Finding a Stoma Care Nurse and Showing Your Support

If you do not have a stoma care nurse, you can search to Find a Nurse using your state or zip code on the WOCN Society website. This feature is also accessible by clicking the “Resources” icon in the Peristomal Skin Assessment Guide for Consumers, a free, easy-to-use, digital tool designed to help teens and adults living with an ostomy identify common skin problems, provide next steps for care or management, and prompt when it is appropriate to seek support from a WOC nurse.

How Hollister Secure Start Services Can Help

Hollister Secure Start services offer free customized ostomy support for as long as you need it, regardless of the brand of products you use, including help using the Peristomal Skin Assessment Guide for Consumers. Call us at 1.888.808.7456.

 

Incredible WOC nurses make a daily impact in the lives of people living with an ostomy. Show your support for all they do during WOC Nurse Week (April 14-20, 2019) by sharing a story or photo on social media using the hashtag #WOClove.

 

The Peristomal Skin Assessment Guide for Consumers was funded through an educational grant from Hollister Incorporated.

The information provided herein is not medical advice and is not intended to substitute for the advice of your personal physician or other healthcare provider. This information should not be used to seek help in a medical emergency. If you experience a medical emergency, seek medical treatment in person immediately.

Editor’s note: This educational 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.

Care and Support After Your Ostomy Surgery: Coloplast® Care

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If you are facing a potential surgery leading to an ostomy, you naturally will have many questions and concerns. It is important to voice your questions and concerns to your healthcare professional. Gather as much information as you possibly can while you are in the hospital. Having a friend or family member with you can be helpful as they can also assist in remembering information and understand how you will need to care for your body and pouching system after you leave the hospital.

However, despite education offered both before and after surgery, statistics show that as many as 46% of patients still feel underprepared when they’re discharged from the hospital. If you have already had your surgery and are back home, feeling a lack of confidence, ill-equipped, or underprepared, you are not alone.

Many ostomates are unsure of how to care for themselves and their pouching system following their surgery. That is why WOC nurses recommend that ostomy patients be connected to additional resources after they’ve left the hospital.

Coloplast Care is a comprehensive support program that gives people with an ostomy personal support throughout their life.

Having the support of Care, you’re not travelling the journey of living life with an ostomy by yourself. – Keagan

There are so many questions that you don’t know to ask until you start life as an ostomate. Coloplast Care helped me stay focused on what was important. – Mike

Coloplast Care covers everything from the Basics, such as: ‘What is an Ostomy?’ and ‘Before Surgery’, to ‘Routines’ and ‘Lifestyle’. Not only are there helpful articles and real-life stories from others on the website and through emails, individuals are partnered with a dedicated advisor for personalized support.

One of the best parts of Care is that you can actually speak with a person. They were listening to what I was trying to do and what my concerns were, and coming up with different solutions they felt would work for me. – Mike

Having the ability to access the Coloplast Care website is a great resource. The reality is that your healthcare provider isn’t available 24/7 around the clock. – Keagan

Gathering the right tools, resources, and community around you following your ostomy surgery will determine your ability to succeed and live a full life as an ostomate. Whether figuring out what to wear to the beach, how to prevent leakage, or learning how to use your appliance, there are resources available to you 24/7. You are not alone in this new chapter of your life.

Visit Coloplast Care to enroll and get your support program started.

 

Mike and Keagan have been compensated by Coloplast to provide this information.

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.