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.

Vlog: Core Exercises with an Ostomy

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If you are wondering how to do core exercises safely with an ostomy and activate your core muscles this is the video for you. Peristomal hernias is one issue people hope to avoid through core strengthening. More information on developing hernias after ostomy surgery can be found as part of UOAA’s New Ostomy Patient Guide.

If you are active and have fully recovered from surgery here are simple exercises anyone can do as well as some exercises you can build up to. Always consult with your doctor before starting an exercise regimen.

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 

Vlog: Ostomy Tips to be Active and Healthy

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Summer is coming and it is the perfect time to not let your ostomy define who you are or what you are able to do. Enjoy these wellness tips by Elaine O’Rourke. In this video Elaine shares her insights into diet, getting moving again, confidence and even her passion for surfing.

“Look at your mindset, that may be what is holding you back not your ostomy.”

 

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 

Simple Ways to Reduce Anxiety and Help Your Immune System

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By Elaine O’Rourke

With the increased and heightened attention on the coronavirus, it is naturally creating a lot of fear and anxiety. This fear not only affects the mind but also the body. Right now, you want to keep your immune system strong and focus on calming your mind and nervous system and of course use necessary precautions.

Proper Breathing, as well as other techniques, will help reduce cortisol levels (one of the stress hormones that can wreak havoc in your body) and helps promote the relaxation response in the body.

Deep focused breathing has so many benefits and there is a lot more science behind what the ancient yogi’s already knew. As a long time yoga teacher, I know firsthand how amazing proper breathing is. I credit it for helping me recover from surgeries much faster and for regaining strength. Wim Hof (the Iceman) has been instrumental in recent years for promoting the benefits through his method. Many scientific studies have been done on him proving that you can control the autonomic nervous system and immune response. The following is a basic guided breathing and relaxation video. 

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 

Ostomy Myths vs Reality

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Let’s Debunk These Common Ostomy Myths

 

 

 

After ostomy surgery, you may find helpful tips from other people living with an ostomy in online communities, support groups, forums and more. Weeding through the fact and fiction can be difficult. We asked certified ostomy nurses to outline some of the most common myths they hear to provide you with the truth about living with an ostomy.

 

Myth: Only use the ostomy pouching system that you were fitted with in the hospital or doctor’s office.

Fact: In the weeks and months following ostomy surgery, you may find your stoma and body changing. In the first few weeks and months post-surgery, your ostomy pouching system may need to be changed also.

 

Myth: All ostomy products are the same. It doesn’t matter what type of pouching system you wear.

Fact: There are a large variety of ostomy products available to fit the needs of each person living with an ostomy.

 

Myth: Your stoma should not change size a few months after surgery.

Fact: In the weeks and months following ostomy surgery, your stoma may change in size and appearance.

 

Myth: Having skin irritation is a normal way of life with an ostomy.

Fact: If the skin around your stoma becomes damaged, it could be painful and lead to infection. Prevention is the key to maintaining both healthy peristomal skin and your comfort.

 

Myth: If you have an ostomy, your significant other will not love you the same way.

Fact: It is common to have anxiety about relationships following ostomy surgery. Be open and honest with your partner about any concerns you have. Remember, having an ostomy is nothing to be ashamed of.

 

Myth: Odor is a part of life when you have an ostomy.

Fact: You will become more comfortable with your ostomy pouch over time, and will gain confidence in its ability to retain odors.

 

Myth: Now that I have an ostomy, I am no longer able to enjoy the foods I love.

Fact: Right out of surgery, you may be more sensitive to foods than you will be in six months. Slowly add different foods to your diet, and pay attention to your body’s response.

 

Myth: I have a colostomy or ileostomy so I shouldn’t be passing anything from my rectum. 

Fact: The colon or rectum may produce mucus even after ostomy surgery. If you have questions about your output, contact your healthcare professional.

 

Myth: I can’t get my pouch or wafer wet, which means I can’t enjoy water activities or bathe with my pouching system in place.

Fact: You can shower, go swimming, or even get in the hot tub with your pouching system in place. If using a pouch with a filter, cover the filter with the covers provided.

 

Myth: Don’t shower without your ostomy system off.

Fact: You can shower with or without an ostomy system in place.

 

Myth: An ostomy prevents you from wearing stylish, form-fitting clothing. People will be able to see that I have an ostomy.

Fact: Before you had ostomy surgery, did you notice an ostomy pouch on other people in public? Probably not. Try a wrap or special undergarments to help conceal your pouch and increase your confidence.

 

Myth: Insurance doesn’t cover ostomy care, so I am paying out of pocket for my supplies.

Fact: Contact your insurance coverage provider to understand what your insurance plan covers and pays for ostomy supplies.

 

Myth: You should rinse and/or reuse your pouches.

Fact: It is not recommended to rinse or reuse ostomy systems, pouches or wafers. Water can make the barrier break down faster and damage the filter of the filtered pouches.

 

Myth: People living with an ostomy cannot fly, because the cabin pressure can cause the pouch to fail.

Fact: People living with an ostomy can fly, ride in a car, or use any other mode of travel.

 

More information from ConvaTec

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

Dating With An Ostomy

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Don’t Let Your Ostomy Stop You From Dating!

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

Finding the Perfect Date Location

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

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

Are Things Beginning to Heat Up?

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

More Resources

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

Find our additional information on intimacy and your stoma.

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

Maintaining Healthy Peristomal Skin

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How to Keep the Skin Around Your Stoma Healthy

 

 

Keeping the skin around your stoma, or peristomal skin, healthy is important. You can steer clear of many complications by following these simple suggestions from:

Bath and shower tips:

  • You can bathe and shower just as you did before surgery, with your pouch on or off—the choice is up to you.
  • Because soap residue can cause your skin barrier to lift, avoid oil-based and moisturizing soaps.
  • Soap and water will not flow into the stoma and cannot damage it.

Choose a well-fitted ostomy barrier:

  • To help keep the skin around your stoma healthy, it is important that your skin barrier fits properly. Choose a well-fitting pouching system to help prevent irritating stoma contents from coming into contact with your skin.
  • Your ostomy nurse can teach you how to use a measuring guide to determine the size of your stoma and select a cut-to-fit, pre-cut ormoldable barrier.
  • Your stoma size will change up to 10 weeks after surgery, so you will need to measure it periodically.
  • Changes to the abdomen caused by pregnancy, exercise, weight gain/loss or certain medical conditions may also require a new pouching system and/or size.

Changing your pouching system:

  • Make an easy-to-follow schedule for your pouching system. This will ensure your skin barrier is changed before the adhesive has eroded, reducing the chance of urine or feces coming into contact with your skin. Your schedule should be personalized based on your system type and the advice of your doctor or ostomy nurse.
  • At each skin barrier and pouch change, make a habit of looking at the skin around your stoma. Redness, swelling or a rash are signs of irritation. If you see any of these, or other signs of irritation, notify your healthcare provider.
  • Never rip or tear off your skin barrier. Instead, remove the skin barrier gently by beginning with one corner of the barrier and slowly pulling off the remaining adhesive. Adhesive releaser spray and remover wipes can make pouch changes easier and ensure clean skin, ready for your next skin barrier.
  • Make sure your peristomal skin is completely dry before replacing your pouch and skin barrier. Dry skin ensures a good adhesive seal and helps reduce the risk of fungal infection.
  • A skincare routine including skin barrier foam, spray or wipes can help ensure healthy, comfortable peristomal skin for years to come.
  • In hot, humid locations, consider using a pouch with a fabric backing. This will keep the pouch from sticking to your skin and causing skin irritation.

For more information click here.

 

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

Find Solutions to Problems That Can Occur With an Ostomy

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Many people with an ostomy find that once their stoma has settled and they are in a normal routine, they are able to live their life with few ostomy related issues. However, as you are adjusting to life with a stoma, you may experience some problems that are quite common. We have put together a list of some common ostomy related problems and solutions so you can be well prepared if and when they occur.

Many ostomates continue to live with stoma issues and problems unaware that there are solutions available to them. Learning how to care for your stoma and understanding these common problems will help you to find normalcy and routine after your surgery. Access to this information will help you to take charge of your life and increase your confidence.

Before we get into the common problems and solutions, it might be helpful to mention proper cleaning and application. With proper care of your stoma and the skin around your stoma you may reduce the risk of the below problems. Proper care begins with proper application. Make sure your barrier hole fits tightly around your stoma, and that the skin is clean and dry for application. When removing your barrier, it is important to lift it gently off of your skin while using your other hand to press down on your skin. Ripping the adhesive off quickly can cause redness and irritation that can lead to other problems. To clean your stoma and the area around it, use a soft cloth or towel and warm water. Be gentle when cleaning, as aggressive rubbing or wiping can irritate the skin. It is not necessary to use soap, as soaps can leave residue and irritate the skin. When changing your pouching system, it can be helpful to use a small hand-held mirror to see all around it. If there is leakage, use the mirror to check all areas of your barrier and stoma for gaps and creases. Once you’ve identified the problem area, it will be easier to address.

Leakage

Two of the main factors of leakage problems are: how you prepare your skin before you apply your barrier, and your barrier size. You should make sure to clean and dry your skin completely before applying a new pouching system. If you are having trouble getting the area dry, an absorbing powder might be a good solution for you. If your pouch gets too heavy and tends to pull away from your skin, or if your barrier does not fit correctly, a protective seal between your stoma and the barrier can prevent leakage and seal the pouching system.

Skin Problems

The skin that surrounds your stoma is called peristomal skin­—it should be smooth and healthy and look like the rest of your skin. If it is red or irritated, you should address the problem immediately. If you have problems with adhesive residue or are unable to get the area completely clean before application, you may want to try to use an adhesive remover.

Odor

New sound and smells coming from your pouching system can be embarrassing and induce anxiety. Many new pouching systems have filters to neutralize the odors caused by gasses in your pouch. What you eat can have an effect on gasses you produce. It is recommended to avoid carbonated beverages and limit high-fiber foods. If the filter in your pouch gets blocked, you may experience ballooning. Ballooning happens when air from your stoma cannot escape the bag and it fills up like a balloon. Depending on the type of system you are using, you may want to release air from it throughout the day. If the odor is strong when you are changing your pouch, you may want to try a lubricating deodorant which can help mask, the smells during a pouch change. Simply place 6-10 drops into the pouch when you change and empty it and spread it around inside the pouch by rubbing the inner sides together, avoiding the filter. This helps the output to make its way more easily to the bottom of the pouch.

Should you need more assistance dealing with a problem you are having with your ostomy, consult your healthcare professional. For more assistance and personalized support, check out Coloplast® Care, which is an ongoing comprehensive support program that gives people with an ostomy support throughout their life.

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.

The Support We Get From Support Groups

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Walk Through that Door and You Might Surprise Yourself

 

By Ellyn Mantell

There are support groups for many issues but until I, myself, was in need, I never gave much thought to what they can provide. We have seen representations on television and in the movies, and they seem to have merit, but I have learned that they can be a lifesaver, or at the very least, a way to begin to live a life.

During all of the over 20 years that I suffered from constant bowel obstructions and abdominal surgeries, I longed for others to tell me “it would be alright.” But there were no “others” to be found…nobody seemed to have what I had, and therefore, I could never ask what I could do, what did he/she do to live a fuller life? And then I had my ileostomy, and everything changed. After my 23rd abdominal surgery,  something happened that hadn’t happened before…I now had the name of something that could actually garner support, and I took to it like a duck to water!

My ostomy nurse, Angela Natale-Ryan invited me to the Union County Ostomy Support Group in New Jersey, and I was quick to take advantage. Little did I know that, fast-forward, I would find a home for myself, become president for the past five years, and go on to start other support groups. But that is only one piece of the wonderful puzzle I find myself putting together. As president, my name is given to those in need who call the American Cancer Society, or United Ostomy Association of America, or even the local hospitals. The connection I have to so many reaches into every interaction I have, since each new encounter teaches me something.

As much as we are all individuals, new members are frightened and worried, hesitant to walk through a new door, and filled with misconceptions. Letting someone know “it will be alright” because we have all been through it, is invaluable. And most importantly, we welcome each new member of the group with open arms.

At the beginning of our meetings, we go around the (ever-growing) group and say our names and type of ostomy we have, and if we are new ostomates. Additionally, I ask if anyone has any issues that they would like discussed, and we will circle back to those after everyone has a chance to introduce themselves. Our Wound Ostomy Continence nurses address the medical concerns, and we discuss lifestyle concerns with each other.

I have garnered a wealth of knowledge about the medical, the physical and daily life of living with ostomies. I also now know where to gain more information and knowledge when needed. Rarely does too much surprise me in those areas over these past five years. But I am so appreciative, and feel forever treated to the magnificence of the human spirit, as I see the emotional growth that takes place as we lean on each other for support, and I can count on that!

 

United Ostomy Associations of America (UOAA) has over 300 Affiliated Support Groups around the country. To find support and information near you click here. To start or affiliate an existing group with UOAA click here.