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

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

Beginning Stages

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

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

Getting Out There

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

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

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

Meet Others Like You

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

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

 

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

Date Night with an Ostomy

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

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

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

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

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

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

 

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

Ostomy Leaks and Skin Breakdown: Video Discussion

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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.

You can find Elaine on Facebook and her “3 simple ways to overcome fears about your Ostomy” program at www.ElaineOrourke.com/ostomyprograms/

Every Ostomate Has a Voice Worth Hearing

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

Spread Positivity and Share Your Voice

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

Join Us for a Virtual Cooking Class

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

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

Show Off Your Stoma Sticker

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

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

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

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

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

Vlog: Prolong Summer Pouch Wear Time

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It’s summer and you should not let your ostomy stop you from swimming, exercising and having fun in the sun. Sweat and lots of time in the water can decrease the number of days between pouching system changes for some but there are some simple things you can do that can help. Elaine shares in this video several tips to get your wafer to stick longer. Check out her advice to prolong adherence of your ostomy pouching system especially when swimming, exercising and sweating more this summer.

UOAA also has more information on swimming and advocacy tools for any issues with access in public facilities.

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 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.  

Web: www.elaineorourke.com

Facebook: https://www.facebook.com/ostomyibdlife/ 

Instagram: https://www.instagram.com/elaineorourkeyoga/ 

Email: Elaine@ElaineOrourke.com 

Get Moving for Ostomy Awareness

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The Annual Run for Resilience Ostomy 5k is Coming to You!

 

It’s a good year to celebrate your life. To get outside in the fresh air and get moving again if you can. To speak out and make noise that “Ostomies Are Life-Savers” and not something to be stigmatized or feared.

To keep everyone safe and adhere to any local COVID-19 guidelines all Run for Resilience Ostomy 5k events are being held virtually this year. That just means you can run, walk or roll wherever you want (even inside on a treadmill) and still be a part of Ostomy Awareness Day activities on Saturday, October 3, 2020.

We’ll be celebrating an ostomy community that has shown resilience long before “resilience” became the buzz word of the year. With your registration for the Worldwide Virtual Ostomy 5k, we’ll mail you a race bib, unique 10th Anniversary Ostomy Awareness Day Race T-Shirt and special stickers and sponsor giveaways. If you want to show your state pride and live in Alabama, Arizona, North Carolina, Idaho, Michigan, Pennsylvania, Oregon/Washington please consider supporting your local “Virtual 5k event.” You may have the additional opportunity to pick-up a race bag along with the t-shirt and giveaways at a safe location organized by the local race directors. (MI Run participants T-Shirts, race bags and materials will be mailed.)

You don’t have to be a runner or walker to support these charity events. This event has traditionally been a critical fundraiser for UOAA and the advocacy, resources, and educational materials provided for anyone in need of ostomy or continent diversion surgery. The canceling of in-person events will be a fundraising challenge we’ll need help to overcome. 

Please consider donating or starting a fundraiser like Catherine Salisbury Catherine shared her inspiring story on the fundraising page she created on the Virtual Run Sign-Up website.  

I was diagnosed with a hereditary colon cancer disease, Familial Adenomatous Polyposis (FAP), in 2015. This diagnosis both saved and drastically changed my life. In 2016 I had a total proctocolectomy surgery with a temporary ostomy for three and a half months.  In 2019, desmoid tumors were constricting the blood flow to my j-pouch so I had to have it removed and had a permanent end-loop ileostomy created.  It has been an incredibly difficult journey, but I am beyond blessed with an amazing support system. My family and friends have kept me going through this whole crazy journey. I am beyond grateful for them.

I hope to raise money to help other ostomates who do not have the same incredible support team I have. -Catherine Salisbury

You may be surprised by how supportive others will be if you share your story and create a fundraiser. Catherine increased her fundraising goal to $1,000 after the response from her supportive friends and family helped her reach her original goal.

We also have incentive gifts featuring the “Ostomies Are Life-Savers” logo for those who reach goals of $250 and $400 and anyone who donates or raises $30 or more will receive a special bandana for themselves or their pet.

Starting a Group/Team is also a great way to connect with friends and family wherever they live so they can show support for your journey.  Groups of WOC nurses can claim bragging rights for regional participation (the team WOC This Way in Indiana is leading) and co-workers may have fun in challenging other departments. New this year we are excited that supporters of WOCN Society’s Fund the Future program are coming together for the We All Walk Together Team.

UOAA Affiliated Support Groups such as the one in DuPage County, Illinois looks forward to gathering members for a virtual event every year and are forging ahead with a team and fundraiser even as they anticipate COVID restrictions will not enable them to all meet up together at their usual park location. The year’s Exclusive Diamond Sponsor of the Ostomy 5k, Hollister Incorporated, is also planning another employee-wide event and we expect to hear about other sponsor events soon.

Ostomy Support Group of DuPage County at their Virtual Ostomy 5k in 2018, the group will be back this year with social distancing guidelines in mind.

For some extra motivation consider starting a couch to 5k training group with some friends to get ready and feel great in October. 

Wherever you choose to run or walk be sure to let others know about it to truly raise ostomy awareness. Take pictures of yourself doing your virtual race and email them to us or share/tag them with our public Facebook page. Hashtag your photos or stories #RunforResilience and we may repost on Twitter or Instagram.

We are very grateful for our national sponsors who help offset the costs of the events and believe in this mission. They have stepped up during this difficult year and remain committed to this event and the cause of ostomy awareness. 

Rally your friends, co-workers, and family to the cause of ostomy awareness. People are still choosing death over life with an ostomy and it’s up to you to help show the world what people living with an ostomy are really capable of.  

 

Register for a virtual event near you or for the worldwide Virtual 5k. Sign-up before 9/11/20 and save up to $5. The special price of $17.50 includes a special 10th anniversary of Ostomy Awareness Day technical t-shirt (Michigan is $22.50 shipping included). Worldwide Virtual Event Registration is recommended for those not near one of our local virtual events t-shirt packet pick-up locations.

Click Here to Register

Click Here to Donate or Start a Fundraiser

Swimming with an Ostomy

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

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

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

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

The Heat is On! Hydrate with an Ostomy

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By Ellyn Mantell

While walking this morning it occurred to me that for many Ostomates, the heat is very challenging. Ileostomates, in particular, are prone to dehydration because our stoma is always productive. In Mother Nature’s inimitable creation, the colon, or large bowel, is responsible for absorbing fluids and allowing them to be reabsorbed into the body. Since ileostomates either no longer have a colon or it is no longer being used, the precious fluids are flushed from the body through the stoma. Hence the rapid filling and refilling of the pouch, which can be worse in the heat.

Naturally, drinking water is advised. UOAA’s new ostomy nutrition guide recommends you “Make a habit of drinking water throughout the day. At the same time, limit or avoid beverages with added sugars and artificial colors and sweeteners.”  Many of us may have difficulty drinking enough to support our anatomy, so we need to be mindful of symptoms that we are lacking the hydration/dehydration balance.

Some symptoms of dehydration include headache, fatigue, dark or decreased urine, lack of concentration, dry mouth, feeling disoriented, shortness of breath, dry skin, stomach cramps. Additionally, leg cramps, loss of appetite, drowsiness, tingling in fingertips and muscle weakness are all concomitant to dehydration.

Learning to live with the chronic dehydration possibility presented to ostomates is certainly attainable. For me, since I do not have a high blood pressure issue which might preclude adding salt, it means adding it frequently at meals. It is strange to servers at restaurants when I ask for the salt shaker, and many have asked if I mean the pepper shaker? We have become a salt-resistant society. But there are those of us who need it for our fluid balance. Additionally, I have a handful of a salty snack before bed, such as pretzels, since nighttime muscle cramps can be very painful and cause sleep deprivation. I keep a bottle of tonic water in the refrigerator, as well as a jar of pickles for those times when nothing else works. For muscle cramps I recommend an over the counter foam moisture. The manufacturers recommend using it prophylactically at night, but I have found it usually very fast-acting when I have foot or leg cramps, so I apply as needed.

Many Ostomates swear by sports drinks like Gatorade, but truthfully, although I have a bottle in the refrigerator at all times in case of fever, I find it difficult to drink. However, if presented with the option of drinking it or winding up in the Emergency Room for fluids, I will imbibe gladly! It’s recommended you dilute sports drinks to reduce the sugar content as well. At some of our Support Group meetings I have heard of many different electrolyte balancing drinks and powders, so you may find one that works for you.

UOAA recommends you drink 8–10, eight-ounce glasses of water/fluid daily. If you have a urostomy this also helps prevent UTIs and keeps urine diluted. Concentrated urine also can cause odor.

View UOAA’s Eating with an Ostomy Guide for more hydration tips such as avoiding excess caffeine, eating foods with a higher water content and sipping your liquids slowly.

It has been recommended that Ostomates drink more than simply water, since it flushes through the system and little gets absorbed before it exits through our pouch. Drink with meals, since food slows down the transport of fluids. Bring fluids with you when you are out and about, since being busy may cause us to forget the responsibility we have to stay hydrated. Lastly, in addition to feeling awful when we are dehydrated, being in that state puts a great deal of pressure on our kidneys, and can lead to kidney failure and lightheadedness, which can lead to falling.

Although this sounds ominous for summer fun, being mindful and smart will help us to relax and enjoy ourselves…after all, with the Covid experience, we have learned to grab the good and be grateful we are as healthy as we are!

 

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

What is a urostomy and how do you deal with it?

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A patient who did not know what to expect walks you through the process (with photos)

By AnneMarie Finn

According to UOAA information on this website, 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. Reasons for surgery include bladder cancer, spinal cord injuries, malfunction such as chronic infection of the bladder and birth defects such as spina bifida.” Great definition, but what does it mean? When I was told I would need a radical cystectomy, leading to an ileal conduit I had no clue. The following is my experience.

Because of bladder cancer, my bladder needed to be removed and a new way to pass urine created. Due to the location of the tumor, my urethra was also removed so my surgeon and I settled on an ileal conduit, a conventional urostomy. It is called ileal conduit because a piece of the ileum, or small bowel, is used to make a passage for urine to go from the kidneys and ureters out of the body. The other end is brought out through a hole in the abdomen where urine exits through a stoma (more on that shortly). It is known as an incontinent urinary diversion because you cannot control the urine. As a result, a collection bag or pouch hangs from your abdomen to catch the urine. The pouch is not visible as it is worn under your clothes. Still not clear? It wasn’t for me either.

A couple of days before surgery, I met with an ostomy nurse at the hospital where I would be receiving my surgery. She marked where the stoma would be placed. She saw how I wore my pants. She had me sit, stand, lay down, and bend over, She drew a mark with a marker about 2.5 inches to the right and 3 inches down from my navel and covered it with a waterproof dressing. This would guide the surgeon as to the optimal spot to place the stoma. The surgeon had the ultimate call on where the stoma went, depending on the surgery itself. I also met with a nurse for a pre-op appointment. They went through the typical exam and then explained the ERAS protocol to me. ERAS, Enhanced Recovery After Surgery, is used at my hospital for radical cystectomies. They no longer use a bowel prep. You drink a high carbohydrate drink in the hours prior to your surgery. They get you up walking and feed you by the day after surgery. The goal is to keep your bowels working. This reduces the length of hospital stay and the number of complications.

This is major surgery. It is considered one of the most complex cancer surgeries performed. My surgery took 7 hours. They removed the bladder, urethra, uterus, cervix, fallopian tubes, an ovary, and some lymph nodes. When I woke up, I had a bag, a large incision with more than 30 staples and a Jackson Pratt (JP) drain on my abdomen. I also had intermittent pneumatic compression (IPC) devices on my legs, my spa legs. Blood clots are a common side effect of a radical cystectomy. Because of that, I also received daily prophylaxis blood thinner shots in my belly for 30 days. I was not in a great deal of pain which was easily managed with Tylenol. I was definitely weak, but otherwise ok. I went home in 4 days, on my own with my urostomy.

The stoma is the badge of the urostomy. My stoma is about one inch in diameter. It is pretty round, It sticks out. It sometimes moves in and out. You can’t feel it. It has been described as looking like a rosebud. It is red. This is where the urine exits the body. You have no control over it. Sometimes it will also expel mucus. Some people name them. I did.
Rudolph, my red, round stoma

You use a urine collection pouch, or bag, to catch the urine. The hospital will send you home with some so you do not need to have them on hand before you get home. There are many different brands. In fact, until I found what worked best for me, I tried most of them. My pouch is about 8 inches long, 6-7 inches wide and has a 1-2 inch closable spout on the bottom. It also is a deep convex bag as my stoma does not stick out very far and it helps protect my skin. I prefer the clear bag so I can see the stoma and center it when I put it on. There are both one and two-piece bags. I have used both. One-piece pouches have the bag and a skin barrier attached. The skin barrier has adhesive, also called a flange or wafer, that sticks to your skin. There is a hole that goes over the stoma. Some are pre-cut, some are not. If not, you must cut a hole slightly bigger than your stoma before putting it on. There are also two-piece systems. The bags are separate from the skin barrier. They are attached by a Tupperware-like seal. You can leave the skin barrier on and take off the pouch.

Front and back of 1 piece, deep convex pouch

I change my pouch every 3 days. I like to remove the old pouch and take a shower with it off. I feel so free. To remove, I use an adhesive removal spray and wipes to clean the skin. I shower and wash the area around the stoma with soap and dandruff shampoo, which contains Zinc. Some people wash with a vinegar and water combo. If I change without showering, I just use plain water to rinse. After showering, I use a hairdryer on the lowest setting to dry the skin around the stoma so the wafer sticks to it. Drying your skin is important. I have some skin issues so I also use a skin barrier protective sheet, that I cut a hole to match the opening of the wafer, and a cohesive seal.

Protective Sheet with hole cut out and Cohesive Seal

Some people use powders, paste, barrier wipes, etc. I do not. It took a lot of trial and error to find what worked best for me. You need to find what works for you. One of the best ways to do this is to work with an ostomy nurse. They can help you navigate ordering and finding the best system for you.
At night, I use the urinary drainage bag they sent me home with from the hospital. For me, it works the best. There are several brands of night bags and even jugs. I put it on the floor next to my bed inside of a small wastebasket. This has been key as the drain has opened (or been left open) and the wastebasket collected the urine, preventing a rug catastrophe. I am a very active sleeper and I am not really hindered too much from my bag. I am able to sleep on my back, sides, and stomach. Don’t be afraid to sleep. People add their own tubing and tube placement strategies. Use whatever works for you. I also highly recommend a waterproof mattress pad. Mattresses are expensive. I also use the night drainage bag on long car trips. I don’t have to stop and use those disgusting public toilets. I even used it during the Avengers finale. I was probably the only person in the theater who did not have to get up to use the facilities during the movie! People were actually jealous.

Night Drainage Pouch

I honestly can’t even feel my pouch. I empty it every 1-2 hours, depending on how much I drink. Sometimes there is a “ghost” feeling where my bladder used to be making it feel like I have to pee. Ah, the good old days. It is actually a weird sensation drinking a lot and not feeling like I have to go. The bag is not noticeable under my clothes. I really do wear what I wore before surgery: jeans, sheath dresses, shorts, and bathing suits. I am still sexually active. Having gone through this experience with my wonderful caregiver, my husband, has brought us closer. Most importantly, I am cancer-free.

Annemarie Finn’s Story

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Bladder cancer and urostomy surgery do not stop Annemarie from living her best life.

I am a bag lady. I am highly educated and employed, yet carry a bag wherever I go. I don’t leave home without it. Because of bladder cancer, I have a urostomy. Like many other women, it took some time for my diagnosis. At 57, many of the symptoms I experienced were attributed to my age: menopause, UTIs, kidney stones, fibroids, etc. Thanks to the fibroids, I was scheduled for an ultrasound. It was my gynecologist who found the bladder tumor. She referred me to a urologist. In fact, she insisted. Her office called to make sure I followed through. I met that week with a local urologist. He did a scope. I saw him look at the nurse, concern written on both their faces. He started talking about surgery and apologizing for the diagnosis. In my naivete’, I had gone to the appointment by myself. I don’t remember him even saying the words, but I had bladder cancer.

Scans and a transurethral resection of a bladder tumor (TURBT) were scheduled for the following week. Usually an outpatient procedure, I was in the hospital for 4 days due to heavy bleeding after the TURBT. The tumor was large and the doctor couldn’t get it all but he thought it had penetrated the muscle. Unfortunately, the pathology was inconclusive so he did another TURBT the following week. The outcomes were exactly the same so we both decided my best chances were for a second opinion at Dana-Farber Cancer Institute in Boston. Throughout our discussions, he explained what my future might entail. It looked likely that they were going to have to remove the bladder and I would either have a new “bladder” or a bag. Quite honestly, I had no idea what it entailed, but I was horrified.

Dana-Farber is an amazing place. I had a whole team in place: a medical oncologist, an oncology urologist, a nephrologist, among others. The plan was an MRI to confirm the tumor’s pathology, a nephrostomy tube, chemotherapy and, if the cancer had not spread, a radical cystectomy. If it had spread, I would not need surgery but would be eligible for palliative care. Who would have thought surgery is the best case scenario. Due to claustrophobia, and despite anesthesia and Ativan, I moved so the MRI was inconclusive. I needed another TURBT. Thanks to my new amazing surgeon, the tumor was removed and the passage to my kidney was cleared. The pathology of the tumor showed no spread to the muscle and an ultrasound showed no more kidney hydronephrosis. Even better, I would no longer require chemotherapy. I did try immunotherapy with BCG but it did not work. The cancer was aggressive so we had to treat it aggressively. My radical cystectomy was scheduled for January 25, 2019.

It took me a long time to get there. I even asked what would happen if I did not receive the surgery. I would be dead in a year.

Wow, that was sobering. Because of the proximity of the tumor, I did not qualify for a neobladder. I would have to have a urostomy. Every time I talked about it, or even thought about it, I cried. I felt like I was going to be a freak. I offered my husband a divorce if he wanted one. I was devastated and frightened. I have learned that fear of the unknown and our imaginations are far worse than the reality. While so much of what had happened to me was out of my control, I did have control over one thing: HOW I handled everything. I decided knowledge was power. I was fortunate. My hospital had a class for urostomy candidates. For the first time, I was able to see an actual urostomy pouch. I was given hands-on instruction on how to change a bag. I met ostomy nurses (the best people in the world!) who would be helping me.

I decided I would be the one to handle my changes, right from the start. I would take control.

My surgery lasted 7 hours. I needed a transfusion but things went well otherwise. The surgery was not easy. People have described it as feeling like you were hit by a bus. I never really had any pain. It was easily managed with Tylenol. However, I was so weak. I eventually needed an iron transfusion. The one thing I wish I had gotten for my return home was a shower chair. Showers were the worst for me. It took me two months to feel more like myself and another month before I felt ready to return to work. I also cannot say enough about getting a good ostomy nurse. I have been described as a delicate flower (surprising to those who know me). I have very sensitive skin. The nurse was a Godsend to me in trying to manage all of my skin issues. After my visiting nurse visits ended, I continued to see the ostomy nurses at the hospital where I had my surgery. It took a year but, through trial and error, I finally have gotten a handle on things.

I had a few leaks. They were usually caused by user error. They were not the huge floods I expected. Honestly, none of this was as awful as I expected. So many people said this would be my “new normal”. I can’t stand that term. I call it my new reality. There isn’t anything normal about having a urostomy. However, it is very doable. I now wear two-piece bathing suits. I didn’t before. I am wearing the same clothes as I did before. I can kayak, hike, ride my bike, swim for hours, anything I did before. I was here for the birth of my first grandchild. I am back to work, a job that I love. I am not shy about talking about my bag to others. It is not a secret. In fact, I am kind of proud of it. I am alive and life is good.