Finding Your People: A Guide To Online Communities For Caregivers

 A Guide To Online Communities For Caregivers

Caring for someone else’s needs is a lot of work, and at times, a thankless job – even when it’s for someone you love. Learning the ins and outs of the various conditions your loved one may be suffering from, figuring out how to navigate Medicare and hospital paperwork, managing the physical toll, and even the financial strain is enough to make anyone second guess why they took on the job in the first place.

But finding a community of people you can lean on can be a real lifesaver. A great community can connect you with others who have experienced what you’re going through. You’ll find people who can answer the questions you may be dealing with, and those you can just vent to about the rough time you’ve been having lately. They can share tips and resources, knowledge and compassion. 

Living in such an online world makes it easier than ever to find a group you can lean on. Message boards and forums are a great place to connect with a lot of people like you, and to get and share a lot of information in one place. 

So what are you waiting for? Here are some great groups to check out. Most of these allow you to poke around a bit without posting anything, which is a great way to learn a lot and also get a feel for the community.  When you’re ready, share your own voice and start reaping the rewards that come with having a large group of caring people to lean on.

Online Communities For Caregivers:

Agingcare.com

 

Caregiver Action

 

The National Association For Continence Message Boards

 

The Caregiver Space

 

Caring.com

 

The Caregiver Space

 

Know of some other great forums for caregivers to connect? Share them in the comments!

Online Resources For Caregivers

 Online Resources For Caregivers

Choosing to take on the role of Caregiver can be daunting. The paperwork alone is overwhelming, let alone the emotional, physical and financial toll it can take.  Where can you turn for help? Luckily, there are a number of great resources out there to help you navigate the various tasks of caregiving.  See below for a list of organizations that offer help and support.

Useful Online Resources For Caregivers

AARP Family Caregiving

AgingCare.com

AssistGuide Information Services

American Red Cross

ARCH National Respite Network and Resource Center

Caregiver Action Network

ElderCare.com

Eldercare Locator

Family Caregiver Alliance

Medicare

National Alliance For Caregiving

National Clearinghouse for Long-term Care Information

Social Security Administration

State Health Insurance Assistance Program

Well Spouse Association

 

For a more complete list of resources, visit the Caregiver Action Network’s comprehensive list.  

The High Cost Of Caregiving

 The High Cost Of Caregiving

Marilyn remembers the day that she toured 3 nursing homes for her elderly mother. “Each one was very functional, but they seemed cold and lonely, institutional”, she said. “At the end of the day I just cried. I couldn’t put my mother in one of those places. And the cost was outrageous. Eventually, I decided to take her in myself.”

What Marilyn didn’t realize was even having her mother home with her would end up being a huge financial strain too.  The extra help she needed from regular nursing aid visits, the supplies – they all added up. “It really put a financial strain on my family”, said Marilyn.

Most family caregivers are unaware of the high cost of caring for a loved one at home. Calculating these costs in advance can help you know more of what to expect, and can help you evaluate if it’s truly something that will work for you.

Out Of Pocket Costs

Out of pocket costs for caregiving can be significant.  A study done by AARP estimated that on average, family caregivers spend roughly $7,000 per year on out of pocket costs related to caregiving. (1)  And if you’re caring for a loved one who lives far away, or one who lives with you in your home, expect to pay more. ($11,923 or $8,616, respectively).  (1)

This can be a huge financial strain on caregivers and their families. The AARP study estimated that caregivers spend on average nearly 20% of their income on caregiving activities. (1) And it’s not all just for medical care – household expenses, such as rent or mortgage payments, or home modifications, account for about 41% of spending.  (1) Medical expenses, such as assisted living, insurance, or other medical costs average around 25% of spending. (1)

Lost Wages And Career Advancement

Care for a family member yourself may feel like the best thing to do, but it will cost you in more ways than just out of pocket expenses. According to the Family Caregiver Alliance, women who care for their parents lose an estimated $324,044 in lost wages, benefits, and retirement funds. (Men lose $283,716.) (2)

And caregiving can negatively affect work performance and career advancement: 61% of caregivers experience at least one change in their employment due to caregiving, such as cutting back work hours, taking a leave of absence, taking a demotion, receiving a warning about performance or attendance, arriving late, or even giving up working entirely. (2)

Reduced Savings

Unfortunately, caregiving for a loved one typically comes at a time when the caregivers also need to plan and save for their own retirement. The decision to stop working in order to care for a loved one can jeopardize their future financial security. (3) This is dangerous, since it’s estimated that a couple can expect to pay an average of $280,000 in health care costs alone throughout their retirement. (4)

Plan and Prepare

The best thing to do? Start planning early.  Set up a savings account now for yourself, so that you can be better prepared for the future. Next, talk with your loved one about what they’ve already done to plan for their own long-term care. You may qualify for tax breaks, or credits, or you may be able to utilize an employer FSA (flex spending account) to help cut some costs.

Talk with your employer about your situation too. More companies are starting to offer benefits to caregivers, such as helping to pay for backup care, or advisory services to help you navigate the many aspects of caregiving.

Even if your company doesn’t offer these formally, it’s still a good idea to have a discussion with them about your situation. There may be ways for you to work more flexible hours in order to manage the demands of caregiving, or even take some paid leave to assist with your loved one’s needs. Some big-name companies, such as Facebook, Microsoft, and Deloitte all offer different amounts of paid leave programs to care for loved ones.

In the end, making the decision to become a caregiver is a personal choice. The rewards of caregiving can be great, but it can also come at a high personal sacrifice – both financially and emotionally, for you and your family members.  Do your research, and be sure to have an honest and open discussion with everyone involved.


References:

1. Rainville, Chuck, Laura Skufca, and Laura Mehegan. Family Caregiving and Out-of-Pocket Costs: 2016 Report. Washington, DC: AARP Research, November 2016. https://doi.org/10.26419/res.00138.001

2. https://www.caregiver.org/caregiver-statistics-work-and-caregiving

3. The MetLife Market Survey of Long-term Care Costs, 2011:  https://www.aarp.org/content/dam/aarp/livable-communities/old-learn/health/the-metlife-market-survey-of-nursing-home-assisted-living-adult-day-services-and-home-care-costs-2011-aarp.pdf

4. The Fidelity Retiree Health Care Cost Estimate, 2018. https://www.fidelity.com/viewpoints/personal-finance/plan-for-rising-health-care-costs

Ask The Expert: Should I Get Vaccinations If I Have IBD?

 Should I Get Vaccinations If I Have IBD?

Each month, we ask our expert panel to answer one of our reader's questions. To learn more about the NAFC Expert Panel, and how to submit your own question, see below.

Question: I suffer from IBD and have always thought that vaccines would place me at a greater risk for developing an infection due to an already compromised auto-immune system. Is this true?

Answer: Many patients with IBD believe that they should not get certain vaccinations because they are concerned about side effects, and think that the vaccines won’t benefit them. But the truth is, IBD already is placing patients at a greater risk for developing vaccine-preventable illnesses. This is even more true if you are on an immunosuppressive therapy. This is why it’s important to talk to your doctor about vaccinations to ensure that you’re getting the protection you need. 

Guidelines recommend vaccinating prior to starting immunosuppressive therapy, since the efficacy of the vaccine is higher in non-immunosuppressed IBD patients.

And while it is generally recommended that all adults with IBD receive non-live vaccines (in line with the national guidelines), certain live vaccines may not be recommended for some patients.

Talk to your doctor about the vaccines you need and determine a plan for getting up to date.

Are you an expert in incontinence care? Would you like to join the NAFC expert panel? Have a question you'd like answered? Contact us!

Home Remedies For IBS

 Home Remedies For IBS

Irritable Bowel Syndrome, also commonly known as IBS, can cause symptoms such as painful cramps, bloating, excessive gas, diarrhea, and even constipation. For some people, the impact of IBS on daily living can be extensive and can negatively affect quality of life. But there are things that you can do to treat IBS naturally. And since it’s a chronic condition, it’s a good idea to learn some methods for keeping it in check and managing the symptoms.

There is no cure for IBS, but knowing what your triggers are, and how to avoid them, can greatly reduce your symptoms. Read below for some ideas on how to manage your IBS symptoms without medication.

EXERCISE.

Working out can help keep your digestive system working properly. It’s also a great way to relieve stress and anxiety, two big contributors to IBS symptoms. Exercising can be as easy as taking a short walk around your neighborhood. The key here is consistency, so aim for a 30-minutes, 4-5 times per week.

DIET.

What you eat when you have IBS can make a huge difference. Many people find that certain foods will cause them more problems, so try to avoid these when you can:

  •          Dairy products
  •          Spicy Foods
  •          Citrus Fruits
  •          Sugar
  •          Caffeine (including chocolate)
  •          Alcohol
  •          Soda
  •          Fried Foods
  •          Beans
  •          Broccoli or cauliflower

WATCH HOW YOU EAT.

How you eat may be just as important as what you’re eating. Eating more slowly helps prevent you from swallowing too much air, which can cause excessive gas. And opting for smaller meals throughout your day can help you avoid overloading the digestive system, which can cause cramping and diarrhea.

MANAGING STRESS.

Stress can be a big contributor to IBS so learning effective ways to manage it can really help to alleviate symptoms. Exercise, as mentioned above can be a great stress reliever. You can also try practicing mindfulness, which has been shown to reduce anxiety and stress in many people. Talking with a friend or a counselor about stressful situations can also do wonders to help you calm your mind.

PROBIOTICS.

Probiotics are specific species and strains of bacteria that we eat which are thought to improve gut health. Its unknown exactly how these work, but by improving your “gut health”, you may also improve your IBS symptoms. Probiotics can be taken as supplements, and are also found in things like yogurt, kefir, kimchi, and Kombucha.

GO EASY ON THE LAXATIVES.

Many people turn towards OTC laxatives to manage their IBS symptoms, but be careful – improper use of these products can sometimes make things worse. Always talk with your doctor about how to integrate them into your treatment plan before trying them on your own.

The most important thing you can do is to pay attention to your body and how you’re feeling. Notice how certain foods affect you and try your best to avoid them. Recognize when you’re feeling stressed out and find ways to calm your mind down. With a bit of practice, you’ll be on your way to fewer IBS symptoms, and a better ability to manage them.

Practicing Mindfulness To Ease IBS Symptoms

 Practicing Mindfulness To Ease IBS Symptoms

In today’s hectic and crazy world, it’s hard to even think about finding the time to just sit and practice mindfulness.  For many, it’s a hard concept to grasp, and as a practice, it can feel intimidating to start. But carving out even 5-10 minutes of each day for some quite time can do wonders for your stress and anxiety levels, and may even help with things like IBS symptoms, simply by calming your mind and being objectively aware of how you’re feeling.

BENEFITS OF MINDFULNESS

Mindfulness has been practiced for thousands of years and is thought to have originated in Eastern cultures and religions.   Turns out that the ancient practitioners were on to something. Recent research has shown that mindfulness has many benefits, including the following: 

  • Reduced rumination
  • Reduced stress and decreased anxiety
  • Increased working memory capacity
  • Better ability to focus
  • Less emotional reactivity
  • Enhanced self-insight
  • Increased immune functioning
  • Improvements in well-being

WHAT TO EXPECT

Before you start practicing mindfulness, you need to know a bit about what to expect.  The main goal of mindfulness is to be able to pay attention to the present moment you’re in, without judgment. This sounds pretty easy, but once you get started you’ll see it’s much harder than it appears.

Your mind has a mind of it’s own and tends to drift toward all sorts of things except what’s happening to you right at this moment – that big work project coming up, the cupcakes you promised to make for your 3rd grader’s class this week, an upsetting conversation you had with a friend or family member, your growing to-do list, and on and on.

But not to fear – your wandering mind is completely normal and it just takes some practice pulling your thoughts back to the present moment once you realize they’ve drifted off. Once you’re able to this in practice, you’ll find you’re better able to do it in real life too, making you more present in your day-to-day activities.

HOW TO START

  1. Find a comfortable place to practice.  This doesn’t have to be a picturesque seat in the middle of a garden or waterfall. It can be a comfortable chair in your kitchen, a quite spot outside, or even your desk chair in your office. The main thing is to find a place that feels good to you. Be sure that your body posture is comfortable too, and that you’re in a position that you can remain in for the length of your practice.
  2. Start with 5-10 minutes. This feels like a small amount of time, but is a great place to start when you’re trying to fit this practice into your day. And when you’re just getting started, trust us when we say that even 5-10 minutes may feel like a long time to just sit still. As you continue with your practice, you can begin to extend your time.
  3. Concentrate on your breathing. No need to count your breaths or hold it for a specific amount of time. Just feel your breath as you inhale and exhale slowly and regularly.
  4. If you feel your mind start to wander (and you will), just acknowledge it and then pull your concentration back to your breath.
  5. Don’t judge yourself or your feelings.  This is hard work, and takes practice to be able to continually be present and not focus on the things that are happening in our lives.
  6. Practice makes perfect. Or at least it makes you better. With continued practice of mindfulness meditation, you’ll become much better at staying focused throughout and that will bleed into other areas of your life as well. We know it’s hard to sit still for a set time each day, but stay with it. The benefits are well worth it.

Need a little help getting started? Check out this guide to find some apps that can help you stay focused and guide you through your meditation practice.

GARDEN STATE UROLOGY NAMED A CENTER OF EXCELLENCE BY NAFC

Urology group recognized for exemplary care, dedication to patients

WHIPPANY, NJ – JUNE 2018 Garden State Urology, part of Atlantic Medical Group, was recently designated a Center of Excellence by the National Association for Continence.

Garden State Urology is a cooperative urology group that provides residents in northwestern New Jersey with a modern, integrated, comprehensive health care experience for all urologic issues. It is the first full-service community-based urology practice to receive the NAFC’s Center of Excellence designation.

Formed in 2008, Garden State Urology includes 14 locations, with a team of about 150 employees, including 23 board-certified physicians. GSU is part of Atlantic Medical Group, which is Atlantic Health System’s multispecialty physician network that provides high-quality, comprehensive medical care throughout northern and central New Jersey and northeast Pennsylvania.

The Center of Excellence designation was largely driven by the achievements in treating overactive bladder, male and female incontinence and pelvic prolapse (dropped bladder) by David Chaikin, M.D., and Michael Ingber, M.D., who are both board certified in Urology and Female Pelvic Medicine and Reconstructive Surgery (Urogynecology).

The physicians use a multidisciplinary approach to understanding and treating female and male continence issues. This includes:

  • The latest surgical techniques such as Botox injections or neurostimulation for overactive bladder
  • Minimally-invasive vaginal surgery for pelvic organ prolapse
  • Robotic surgery using the da Vinci surgical system
  • Minimally-invasive procedures such as sling surgery for stress incontinence
  • Non-surgical approaches such as in-office pelvic muscle rehabilitation
  • Vaginal rejuvenation to prevent urinary tract infections and painful intercourse in women, using the Mona Lisa Touch laser system or Votiva radiofrequency system
  • The practice is also one of the few in the region that use video urodynamic testing, a process in which the bladder is filled to reproduce symptoms that are then captured by x-ray. This procedure helps physicians to make more accurate diagnoses, leading to better outcomes.

GSU also offers a personal nurse navigator for patients who are suffering with overactive bladder symptoms, at no additional cost. The nurse navigator connects with patients regularly to help them understand their diagnosis, coordinate communication with their physician, and facilitate treatments, including appointments and diagnostic testing.

“Our patients’ needs are at the center of everything we do, from the most advanced tools and treatments to addressing their concerns and getting them back to normal function” said Dr. Chaikin, vice president of Garden State Urology. “The Center of Excellence designation will help highlight our commitment to those in our communities seeking high-quality urologic services.”

NAFC's Centers of Excellence (COE) program was established to recognize centers and facilities that excel in providing bladder and bowel health care to patients, and to assist consumers dealing with pelvic floor dysfunction and incontinence issues in searching for an expert. The COE designation is based on evidence of training, clinical experience, resources, and patient satisfaction statistics that meet established standards. These rigorous standards ensure that each center that is designated a COE is truly exceptional at providing care for patients with pelvic floor dysfunction and incontinence.

Garden State Urology’s commitment to the highest standards of care is evident in the patient-centric philosophy and impressive clinical outcomes of their team of board-certified physicians, many of whom have been named by Castle-Connolly as Top Doctors and recognized regionally by U.S. News & World Report as Best in urology,” said Steven G. Gregg, Ph.D., executive director for the National Association for Continence. “It is a great honor to recognize an organization like Garden State Urology, which relentlessly seeks to improve the quality of care to provide an excellent experience for their patients.”

About NAFC

National Association for Continence is a national, private, non-profit 501(c)(3) organization dedicated to improving the quality of life of people with incontinence, voiding dysfunction and related pelvic floor disorders. NAFC's purpose is to be the leading source for public education and advocacy about the causes, prevention, diagnosis, treatments and management alternatives for incontinence. More information is available online at www.NAFC.org.

About Atlantic Health System

Atlantic Health System, headquartered in Morristown, N.J., is an integrated health care delivery system powered by a workforce of over 16,000 team members and 4,796 affiliated physicians dedicated to building healthier communities. The system is comprised of over 400 sites of care, including six hospitals: Morristown Medical Center, Overlook Medical Center, Newton Medical Center, Chilton Medical Center, Hackettstown Medical Center and Goryeb Children’s Hospital.

It also includes Atlantic Alliance, a Clinically Integrated Network representing 2,500 health care providers throughout northern and central NJ. This network includes more than 900 physicians and providers within the Atlantic Medical Group, as well as members of the Atlantic Accountable Care Organization and Optimus Healthcare Partners which work to enhance patient care delivery.

Atlantic Health System also supports communities through Atlantic Rehabilitation and Atlantic Home Care and Hospice. Facilitating the connection between these services on both land and air is the transportation fleet of Atlantic Mobile Health. Atlantic Health System is a founding member of AllSpire Health Partners, a consortium of five leading health care organizations from the New Jersey, New York, Maryland and Pennsylvania region.

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What Is IBS?

 What Is Irritable Bowel Syndrome (IBS)

We’ve all experienced bowel trouble at one time or another. But for some people, cramping, excess gas and loose stools (or not so loose stools) are all too common of an occurrence. If you suffer from these symptoms, you may have a condition called IBS, or Irritable Bowel Syndrome. IBS is a gastrointestinal disorder and is not the same as IBD (Irritable Bowel Disease), which is a more serious condition and can cause more severe complications.

COMMON SYMPTOMS OF IBS

  • Abdominal pain or cramping (this goes away once you have a bowel movement)
  • Excess gas and bloating
  • Diarrhea, or constipation (sometimes people with IBS experience both)
  • Changes in stool consistency or frequency
  • Mucus in the stool
  • Loss of appetite

CAUSES AND TRIGGERS OF IBS

It’s not completely clear what causes IBS, sometimes referred to as spastic colon, but many experts believe that people with IBS simply have a more sensitive colon.  Things such as changes in your gut bacteria could have a greater effect on you than on others. Some experts also believe that the condition is a result of problems with brain-gut interaction, or how your brain and gut communicate with each other.

And, just like other conditions, such as overactive bladder, IBS has it’s own triggers.

While everyone’s trigger might be different, there are some common ones:

FOODS IN YOUR DIET:

Depending on your symptoms, different foods may be causing you problems. If you suffer from constipation, some foods, such as breads and cereals, processed foods, high-protein diets, and dairy products (especially cheese) can contribute to you symptoms. If you’re making more trips to the bathroom because of diarrhea, things like too much fiber, large meals, fried and fatty foods, and dairy products can be a problem. And for either symptom, you should avoid caffeine, alcohol, or carbonated beverages.

HOW YOU EAT

It’s not just what you’re putting in your body that can have an effect on you, but how you eat can also impact your IBS symptoms. Eating too fast, or with distractions (like eating while you work or drive) can increase symptoms of IBS. Make sure to eat slowly and without disruptions.

STRESS AND ANXIETY

Stressful life events, or even certain mental conditions such as depression, can bring on symptoms of IBS.  Learning ways to stay calm and manage stress can be helpful tools in managing IBS symptoms.

HORMONAL CHANGES:           

Many women with IBS often experience an increase in symptoms around their menstrual cycle (in fact, 70% of people who live with IBS are women). While you can’t prevent your menstrual cycle from happening, it may help to find ways to better manage your symptoms. Birth control pills can sometimes lessen the effects of your periods, which may also help with IBS symptoms.

NOT ENOUGH EXERCISE:

Simply put, exercise can keep things moving if you’re suffering from bouts of constipation. And, as a widely known way of banishing stress, it’s helpful in keeping you calm and stress free, which can eliminate another trigger of IBS symptoms.

RISK FACTORS FOR IBS

IBS is a common disorder affecting up to 20% of US adults. IBS is not an old person’s condition either – it strikes young, often occurring in people before turning 35). The majority of sufferers are female (70%).  While not proven to be hereditary, people who have had family members with IBS may be at a greater risk for developing the condition themselves. 

DIAGNOSING IBS

Diagnosis for IBS is typically done at a doctor’s office through blood tests. If you suspect you have IBS, make an appointment with your doctor to discuss your symptoms, and get tested for a diagnosis.

TREATMENT OPTIONS FOR IBS

COUNSELING

If you suffer from a lot of anxiety, or have experienced a traumatic event, speaking with a counselor can help you work through some of those feelings and may help ease your IBS symptoms in the process.

DIET CHANGES

Making some changes to what you eat can have a big effect for some people experiencing IBS symptoms. Try eliminating some of the problem foods listed above to see if you experience any relief.

BIOFEEDBACK

This technique involves training your body to have more control over your bowels, and has been proven an effective tool in managing IBS symptoms. Learn more about biofeedback here.

MINDFULNESS

Practicing mindfulness meditation has been shown to result in a reduction of IBS symptoms. Mindfulness meditation involves focusing on the present moment and has been thought to reduce stress and calm the mind. 

MEDICATIONS

Depending on your symptoms, your doctor may be able to prescribe medication to help you manage. Fiber supplements or anti-diarrheal medications can help manage constipation and diarrhea, and antidepressant medications may help you manage symptoms of stress and anxiety, which are common triggers of IBS. There are also medications specifically approved by the FDA to treat certain symptoms of IBS.

IBS can be a very painful and debilitating condition for some people, and while it is not life-threatening, it is a long term condition that should be treated. Speak with your doctor about your symptoms and work with him or her to find a treatment option that works for you.

NAFC Downloadable Resources - Tips & Brochures To Help Keep You Dry

Here at the National Association For Continence, we understand that people learn in different ways. While we see a vast amount of people visiting our website each month (over 80,000!), we know it’s not always easy to get information from a screen. And in some cases, having a physical tool can help you do things beyond just educate yourself – you can take notes, track progress, or remind yourself of important tips that can help to improve your bladder health.

That’s why our Resource Center is so important. We have a large variety of downloadable material and tools to help you on your journey to a Life Without Leaks.  Our resources cover a variety of topics, including Overactive Bladder, Bedwetting, Pelvic Organ Prolapse, Urinary Incontinence, and more.  We also have tips sheets for retraining your bladder, information on how to do kegels, bladder and bowel diaries, and a host of other tools available to you.

Check out the below materials in the NAFC Resource Center, and explore the entire library of offerings. 

NAFC DOWNLOADABLE RESOURCES:

 

It's Time To Talk - Visiting Your Doctor To Talk About Bedwetting

 
 
 
 

Have some other resources you’d like to see on nafc.org? Send us a message. We’d love to hear your suggestions!

NAFC's Getting Started Guide For Managing Incontinence

 NAFC's Step By Step Guide To Managing Incontinence

NAFC's Step By Step Guide To Managing Incontinence

If you’re new to this whole incontinence game, you may wonder how on earth you’re going to manage. Preventing leaks, keeping things clean, and navigating the isles of adult absorbent products at the grocery store are all probably top of mind right now, and rightly so. These are often the first steps people take when trying to manage bladder leaks.

But what comes next? And how do you even begin to tackle those items we just listed above?

We have you covered. NAFC has dedicated a whole section of our website to just getting started (which, to be honest, is often the hardest part). We’ve outlined the things you should do before you even make your first appointment to see your doctor (which you should do anyway, even if you complete all the steps we outline in our Getting Started Guide). 

 Getting Started Guide For Managing Incontinence

 

This guide covers the basic steps, from how to keep a bladder diary, finding the right absorbent product, practicing pelvic floor strengthening moves, retraining your bladder or bowel, and a look at the vast array of options you have available to you for managing incontinence.

So take a look around, and start implementing some of these tips!  Begin with the first step:  finding an immediate way to manage your condition with absorbent products.   Then move on to the other helpful tips.

NAFC's Message Boards Provide A Safe Community For Incontinence Sufferers

 Join The NAFC Message Boards And Online Community

NAFC is a huge proponent of opening up about your incontinence. Talking with others about what you’re experiencing can be very therapeutic. But, we know that speaking openly about something like incontinence is not always so easy.

That’s why we created the NAFC message boards. It’s a anonymous community that let’s our visitors talk openly about their bladder and bowel health issues without judgment. Our community is filled with a supportive and caring community ready to help with questions, share stories, or just lend a comforting ear.

Don’t believe us? Check out some of the message board posts from our community:

“Thank you for your kind words. This is the first time that I’ve ever opened up to anyone. I’m really happy that I found a place where people are supportive and can truly understand what I’m going through.”
“Posting here is a difficult step for me to take. I am too young for this – my 24th birthday is this month. But since there are many others on this forum that share in incontinence, I will give it a try.” 
“I am a 35 year-old woman and I have been suffering from incontinence at bedtime all my life. It’s made my social/dating life very hard. I’ve turned down proposals, as I’m too ashamed to tell my partner why we can’t live together. I’m desperate to stop this so I can live a normal life and have a husband partner. I’m happy I found this community.”
“Bedwetting started for me as a teen. It was occasional and a huge source of shame for me. And to continue into adulthood was just humiliating. Hear to listen and talk with anyone else who cares to support each other with this issue.”
“Hello everyone. I’ve read some of your posts and its nice to not feel quite so alone with these sorts of problems.”

You are not alone. There are others out there who understand what you’re going through, and who are willing to listen and provide support.

If you’re struggling with incontinence, or any other bladder or bowel condition, or if you’re caring for someone who is, join our community. We’re all here for you. Because no one should have to walk this path alone.

NAFC's Many Resources For Managing Overactive Bladder

 NAFCs Resources For Managing Overactive Bladder

Do you have overactive bladder? If you find yourself often running to the bathroom, you might be suffering from OAB – the urgent and frequent need to urinate. And, that urgent need may be difficult to stop, causing you to experience bladder leaks. Overactive bladder affects over 35 million people in the US, and can be a big disrupter to your everyday life. You may be struggling with this condition and wondering how to stop overactive bladder. But knowing more about the condition, what causes it, and how you can manage and treat it can make a big difference.

NAFC has tons of resources for patients living with overactive bladder. Check out the two listed below:

OAB RESOURCE CENTER

The NAFC OAB Resource Center has videos about Overactive Bladder, first hand patient stories, and articles and brochures to help you understand the condition and what to do about it. It also has a collection of downloadable guides that can help you manage your condition. Download our OAB screener to evaluate the severity of your condition, get a tips sheet on bladder retraining, try the NAFC Bladder Diary, and get our tips for how to talk to your doctor about oab.

OAB TREATMENT TRACKER

Do you feel like you’ve tried everything to treat your Overactive Bladder? NAFC created the OAB Treatment Tracker to help you determine your next best step in treatment options. Answer a few questions about your symptoms, the treatments you have tried in the past, and new treatments you may be interested in and receive a customized email outlining treatment options that may be a good fit for you. Best of all, you can print out the email and bring it with you to your doctor’s appointment to help facilitate a discussion about treatment options for OAB.

NAFC's Learning Library Can Help You Better Understand Your Bladder And Bowel Condition

 Discover videos and tips to help you learn how to manage incontinence.

Ever tried to learn about a complicated condition? It may seem like bladder and bowel problems are simple, but sometimes you need a little help understanding how things work, how to manage certain conditions, and the steps to take to avoid them.

That’s where the NAFC Learning Library comes in. Need some help knowing how to manage Overactive Bladder? We’ve got it. Want some tips on how to prevent bedwetting? Check out our video on that. Want to better understand nocturia, or learn how to insert a catheter? Want to learn more about kegels, or how to care for a pessary? We can help!

We’ve got the videos you need to help you along in your journey toward a Life Without Leaks.  Our collection of educational videos is growing all the time. Check out the NAFC Learning Library to better understand your condition and find ways to treat it.

Patient Perspective: Roger's Story

 Rogers Story of Living With Overactive Bladder

I see it all the time – the ads for OAB, featuring these women who have to run to the bathroom every five minutes. They’re always women, right? You never see a man in these ads.  But I’m a man, and quite frankly, I feel a little left out.

I have OAB. I’ve lived with this condition for the past several years. I don’t have any known reason for it – I’ve never had prostate issues, am not on many medications, and rarely get bladder infections. But the urge to use the bathroom strikes me often and it’s pretty annoying. I usually make it in time, but have had the occasional leak. I’ve talked with my doctor about it but after he determined that my prostate was normal, he sort of brushed it off for a while – I don’t think he’s used to hearing a man come in with this type of problem unless it’s prostate related. But I finally was persistent enough that he prescribed some medication.

I experienced so many negative side effects from each medication I tried over the course of several months that I stopped them completely. It was then that my doctor finally recommended Botox. Yes, I had Botox injected into my bladder. And I have to say it was one of the best things that happened to me. It took almost no time to work, I didn’t need to use a catheter (I guess some people need to), and it lasted about 6-7 months before I had to go back in for another treatment.

It took some pushing on my part, but I was able to get treatment for my OAB. If you’re a man with this condition, don’t let it control you, and don’t believe there’s not a treatment available for you. The media and drug companies focus on women because it’s more common for them to have these types of issues, but men can have them just as easily.  And the medications and procedures work just as well for us.

Do something about your OAB. I’m so glad I persisted and got treatment for it. It helps me live a fuller life without the worry of overactive bladder.

Roger S., New York, NY

Patient Perspective: Debbie's Story

 Debbie's Story - Supporting Her Husband With Incontinence

My husband suffers from incontinence. He has for years. He never thought I knew, but I noticed when he would rush to the bathroom with a change of underwear. I watched as he consistently sought out the restrooms anywhere we went. And I definitely noticed the changed bed sheets when I would come home from work due to leaks the previous night. 

I wanted so badly to help him. To talk with him about it. To tell him that I understand and that it is ok. But how do you tell an ex-army man whose very core is built on pride and being strong that you’re concerned about him wetting himself?

So, I stayed silent for years, and so did he, until finally he couldn’t anymore. We were out to dinner with friends when he had an accident, and had forgotten to bring along a spare pair of underwear. Panicked, he made up an excuse for us to leave immediately, and finally broke down in the car, telling me what I had known for years.

He was so ashamed, but I did my best to show him that I was supportive and didn’t think any less of him because of it. In the end, telling me was the best thing that could have happened, since I finally was able to help him.

We made an appointment to go see a doctor together, and he learned the many options available to him for treatment. He’s doing so much better now.

And though he still has some occasional leaks, he knows that he has me to lean on and doesn’t have to live with the stress of constantly trying to hide it.

I only wish I could have given him the courage to speak up sooner.
 
Debbie R., Omaha, NE

Patient Perspective: Brad's Story

 Brad's Story - Opening Up About Incontinence

My friends and I are close. Growing up in a small town, we’ve always been there for each other – to joke with, lean on in hard times, and to razz each other. We have a tight-knit group of 5 and they’ve been my chosen family since I was 12. It’s hard to believe so much time has passed since our early days, but here we all are.

I experienced incontinence after having my prostate removed in 2013. It wasn’t a fun thing to go through, and I certainly didn’t enjoy it, but the one thing that made it easier was that I knew to expect it – and that I wasn’t the only one.

You see, one of my buddies in our group, Joe, had also gone through something similar a few years back. He pulled me aside before surgery and told me that the worst thing that was going to happen was that I’d probably have some leaks – maybe a lot. It had happened to him for at least a year after his surgery and he said it was “hell “.

But he told me that the thing that had made it worse was not knowing it was coming, That was why he was talking to me – he wanted to me to know that I wasn’t alone. And, if it weren’t for his advice and pick-me-up talks, I don’t know how I would have gotten through that first year.

I’ve recovered well and don’t really experience the leaks anymore. But I still talk about it. Because that’s what we should all do with those we are close to. You never know who might benefit from your experience, or who might also go through something similar and just need a friend or to know they are not alone.

Don’t let your own embarrassment get in the way of opening up to your loved ones. I’m sure glad Joe didn’t.
 
Brad T., Auburn, AL

Patient Perspective: Ethan's Story. Overcoming Adult Bedwetting

 Ethan's Story of Overcoming Adult Bedwetting

I am an adult bed wetter.  Those are hard words to say for a 52 year old man. I first started experiencing nighttime leaks when I was in my teens.  Just once in awhile. I’d laugh it off with my brother.  

But as I grew further into adulthood and it kept happening, I knew it was no longer a laughing matter. I found that the problem worsened when I went away to college and I took great pains to keep it hidden from my roommate.  I dared not buy protection from the stores near my campus for fear of someone seeing me, so I would drive an hour away just to pick up whatever absorbent pads I could find, which usually were not a great fit and didn’t do a lot to protect me.  I put blankets on my bed to absorb the leaks, but they didn’t help mask the odor.  

After college I got my own place, without roommates, so I wouldn’t have to worry so much about them finding out. I finally made the decision to speak to a doctor at age 30 – nearly 14 years after suffering from this problem on and off.  

While I still don’t know the reason I wet the bed, my doctor helped me find resources to manage the condition.  After trying several different absorbent products, I finally found one that fits well and is specific to nighttime use, so I rarely wake up anymore with leaks.  

I’ve also discovered that I’m not the only one out there with this problem – NAFC’s message boards have really helped me connect with others and sharing with them has been such a relief.  After years of embarrassment and isolation, I’m so thankful to have found help and to know that I’m not alone.

Ethan S., San Jose, CA

Patient Perspective: Larry's Story

 Larry's Story - Learning to manage my incontinence

I’m 68 years old and I have incontinence. I’ve suffered a lot of setbacks over the years. I lost a finger in the army. I suffer from high blood pressure. And I have an old football injury that flares up regularly. But I have never suffered as much shame and humiliation as I have since I started experiencing incontinence.

It started innocently enough - a leak here and there. My doctor said it was due to prostate problems and gave me some medication to help. It did for a while, but then the leaks flared up again and I was forced to admit that this problem was not going away.

My first trip to the grocery store to purchase incontinence pads was a doozy. Standing there, looking at the wall of options was so intimidating. What do I choose? What size? How do I know it will fit? What if it doesn’t – can I return the bag? I had so many questions and no one to ask – after all, it’s not like men just talk about peeing their pants with each other all the time. Not to mention I kept looking over my shoulder to make sure that no one I knew saw me standing there. It would be so embarrassing to be “caught” in this situation.

When I finally got home, I started trying out the various absorbent products that I had purchased. I had bought 3 different types and gave each one a fair shot for a full day before making the call. Unfortunately none of them worked so I was back to the drawing board.

Fortunately, my wife found a company online that sold different products so I gave it a shot. I don’t know why I didn’t start with this option in the first place. They offered a free consultation so I gave them a call. The rep was so helpful and it was great having a guide to walk me through the different options, and also learn more about me, my condition and my lifestyle to help find something that would work best for me.

These days, I only use online services to order absorbent products. And, I’ve found great products that help me keep my leaks controlled, and my condition under wraps so no one is the wiser.

I still don’t love having incontinence, but it’s become such a normal part of life now that it doesn’t have the same hold on me as it once did. I didn’t envision this happening to me, but am happy to know that there are resources out there to help and products available that can make it more manageable. I feel free to live my life without fear of leaks and that is something to be really proud of.

Larry B., Seattle, WA

Patient Perspective: Nick's Story

 Nick's Story - Incontinence After Prostate Removal

In August of 2015, I underwent surgery to have my prostate removed.  I had been diagnosed with prostate cancer the year before and my doctor had been closely observing me since then. 

When it seemed that my cancer was growing more quickly than he liked, he suggested surgery.  “Afterall”, he said, “you’re only 63.  You can still have a long life without worrying about this.”

So, after a lot of research, I went for it.  I knew there would be complications afterward, but incontinence was not something that I had anticipated being that big of a deal.  I thought I’d probably have to wear diapers for a couple of weeks and that would be the end of it. 

Boy was I wrong. 

Nine months later and I was still having a difficult time making it to the restroom.  It was so embarrassing as a man to face this problem. I couldn’t do the things I wanted to because I was scared of having an accident or a leak, and I felt ashamed of the bulky diapers that I was forced to constantly wear. 

I finally made an appointment with a surgeon in May to discuss a sling procedure and will be having the procedure done next month.  I’m hopeful that this will be a solution for me so that I can get on with my life and get back to doing the things that are important to me. 

Nick W., Houston, TX