Trudy Triumph's Neurogenic Bladder Blog

Speech, Underactive Bladder Science and Policy, WA DC, March 10, 2017

CURE-UAB is the only meeting dedicated to underactive bladder. The conference should help to create awareness for the aging UAB. The goal of CURE-UAB is to dramatically increase public awareness and translate research results into clinical care that will improve health outcomes in older adults.

 My talk to the UAB, Third gathering in Washington DC, March 10, 2017.

  1. Title Page

 Hi my name is JoAnne Lake and I have an underactive bladder and bowel.  I was diagnosed in 2009.  My condition is permanent.  I spend time writing to others with the same condition.  I have a blog, Trudy and have written a book, Beyond Embarrassment about this road I travel.  My goal is to offer empathy and support to men and women with this condition.

  1. A picture of my family

 This is my family they are all wonderful – truly, they are the best part of my life. When you look at me, you cannot see the world within me

But truly the people I love are all in there.

  1. In Contrast here is a Picture of Victorian woman

When you see a middle-aged woman – what is your perception?

Do you think of her as an individual who lives a full life or more like the classic Victorian woman?

I enjoy reading. Recently I read A BOOK At Home by Bill Bryson.   He Describes a Victorian woman like this..

  • The Victorian Woman, truly a 2nd class citizen, had no legal standing – After marriage, women did not have the right to own their own property, keep their own wages, or sign a contract.
  • The development of breasts and mature reproductive organs during puberty was thought to drain her energy; she was seen as weak and dependent on men for everything.
  • After puberty, she was considered ill or on the verge of being ill: Menstruation was considered willful negligence.
  • Her condition was considered permanently pathological.
  • If a woman experienced pain as part of her monthly menstruation “pathology” her social habits &/or the manner in which she dressed were considered the source.

When you look at me, how do you really see me?

Now consider how society sees me.  I have a broken bladder and bowel.  Perhaps their perception of bladder and bowel dysfunction is a bit Victorian as well.

  1. My Medical History

My Early Symptoms mounted gradually, over a period of years…This was so gradual, and I do not even know when they started.

  • My urine flow became weaker and weaker.
  • I was lethargic and depressed but lucky for me I was working as an elementary PE teacher, so I had little opportunity to give in to how tired I felt. My symptoms just made my job difficult.
  • Food did not taste good.
  • I had a (constant) pain in the side of my body – that would not go away.
  • At times, I had bowel accidents during long walks.

Finding help, took a long time! Years in fact.

  • I went to several doctors who offered me stool softeners, for irritable bowel syndrome and antidepressants for depression.

One physician suggested I might have fibromyalgia. Should a doctor touch on a diagnosis of Fibromyalgia without explaining the cause of my discomfort?

  • Was I being treated like a Victorian woman?
  1. My Condition was because my bladder was not emptying, but I had no idea.

My many symptoms were related to my underactive bladder.

  • By age 55, the pain was so intense because I developed a bladder infection. I was referred to an urologist because my bladder was larger than normal.
  • It turned out that urine retention had stretched my bladder & 2 liters of urine were drained from my bladder that day
  • I was taught how to use an intermittent catheter.

As a result, I was then prone to constant bladder infections. I spent the next 4 years with chronic bladder infections.

                              Emotional Impact

When I left the doctor’s office on that fateful day after my diagnosis of urinary retention I was glad to know the root of my problems but I also I felt humiliated and defeated.

  1. I started to write to clear my head.

I was so hungry to learn about my condition. Do you realize there is NOT a lot of information out there, for a lay person to learn more?

  • What I was really looking for in the beginning though was information from another real person, a patient who had experienced what I was experiencing . . . (no offense to you doctors or research scientists). I did appreciate the efforts of the busy nurse who answered my many questions.
  • I wanted a “friend” to hear my fears, my embarrassment, and my horror. I wanted to feel that I was being heard & understood
  • How could that happen when I was diagnosed with a condition that people are not allowed or comfortable talking about?
  • Attitudes are so Victorian. It is not like I could write to dear AUNT Betty and pour my heart out about bowel and bladder dysfunction.
  • I could not find comfort in my despair or the compassion that my heart ached for.
  • Before I was diagnosed I had never heard of a underactive bladder. I burned with frustration as I wondered, and still do, how this could have happened to me in the first place.
  • So the blog was born
  • Armed with the anonymous pen name, Trudy Triumph, I let it rip. I poured my heart out and in return, I received letters from people feeling the same frustration.

Mostly, I try to write words that are hopeful, grateful, positive & encouraging

The message to my readers is…

  • Be your own self-advocate: partner with a doctor for the best health possible.
  • You are not alone.
  • Think of yourself as healthy and remember there is nothing to be embarrassed about.
  • Knowledge is power.
  • Tomorrow starts a new day. Think about that one folks. Put yourself in the shoes of a person that has just had a public bowel blow out. A new day is important.
  • When I wrote this book, I put it all on the line and it has come with great satisfaction – I wanted to help others who found themselves in the place I was when I was first diagnosed, but it has come at a cost.
  • Since I self-published, I have borne 100% of the expenses — I have actually spent 1000’s of dollars. I depend on word of mouth and book reviews from readers primarily, to help get the word out that my book is there to help those suffering from bladder & bowel issues.  If each of you would write a review, it could go a long way to help patients find the help & encouragement they may be seeking.
  • I have exposed myself & now many others know my very personal struggles. I might worry that my reputation is a bit shot. But then, I see myself being invited to talk to all of you at the UAB conference for the 2nd year. Thank you for that.
  • However, it is still not easy to tell others who are not in the loop, what I write about. Causally a person might ask, “Oh you are an author, what do you write about?” To save embarrassment, I frequently say “digestive issues.”
  1. Question mark

In the beginning, I wondered how I got this condition anyway. I wondered about the causes of a bladder that wouldn’t empty. As I read I found a lot of the material covered the prostate, child birth, MS and Parkinson disease as likely causes of a neurogenic bladder.

  • Perhaps my condition started because of a vaginal hysterectomy or herniated disks. It is a mystery to me.

Urinary retention/underactive bladder.

As I researched, I wrote different causes on a piece of paper.  My list became long. After a while, I had a good-sized list.

  1. Here is the list of causes I’ve compiled:

I could not believe the many ways a person could get a underactive bladder. Why had I not heard of this condition before? But then again, neurological conditions & trauma are not common dinner conversation  . . . and for sure discussions of bladder and bowel complications are very taboo.

  1. New Stats

Currently, My New stats are:

  • I have taken assorted oral antibiotics every day for the last year. This has upgraded my kidney condition which was last year third stage kidney failure.
  • I now have an Infectious disease doctor on my team.
  • I’ve reduced the frequency of bladder infections I experience using preventative antibiotics. I had only one infection this year.
  • I no longer experience unexpected bladder infections on a regular basis, I just live the reality that when I run out of antibiotics that the bacteria are susceptible to, the current status quo could come to an end.
  • My condition no longer embarrasses me.

Catheters are a “broken” Treatment

Catheterization is actually the cause of my chronic bladder infections.

  • The catheter introduces infectious organisms into my urethra/bladder, and the result is that I have been put on oral antibiotics the rest of my life. Then, WHAT??? Please let me know.  I am depending on you for an alternative treatment.

As I navigate the medical world

With healthcare changes we’ve seen in the last few years, we all feel a bit uneasy about future options for obtaining good treatment. My hope is that I can stay with my doctors. Will I be able to retain my team in the future?

Picture of Trudy Triumph

  1. Please get the word out, write more!

  • For the writers out there, please write about the symptoms of an underactive bladder… for current and future patients. This is such a commonly ignored/under discussed condition.
  • Would you like some ideas? Allow me to let you know what to write about. How about the bladder and the bowel? Unpopular subjects for sure.
  • I have offered the suggestion via Facebook and twitter to authors to let me help them write-in a hero or heroine with bladder and/or bowel issues into a storyline, to provide a sense of normalcy for this condition: my condition and the condition of a few million others
  • “I think you should write about how common bladder and bowel dysfunction is and the many causes.
  • I am not so sure why bladder and bowel dysfunction is such a surprise to patients who previously suffer nerve damage.
  • Why does this happen that an underactive bladder has to get really bad before a patient is made aware? i have received many letters from readers of my blog that had not idea that bladder or bowel dysfunction can happen when;
    • backs go out
    • and the many other accidents or illness occurs
  • Which comes first fibromyalgia or the underactive bladder? Why does fibromyalgia get all the hype?
  • –A person can suffer the symptoms of lethargy, achy muscles, joint pain, depression, loss of appetite and not understand that an underactive bladder is the cause.
  • We should see more articles.
  • Why in the time of disability rights are people allowed to make wisecracks about a condition that can shorten a person’s life or keep them housebound?
  • How many people are misdiagnosed for years? I was.
  • Remember when you write, both the public and your peers will be educated.
  • Please won’t you be the one who brings this topic into public acceptance? Let’s start the discussion! Let’s talk about how to keep the discussion going? – Broaden the audience participating in the conversation.

Picture of Victorian woman

  1. Parting Words

Acknowledge and legitimize my feelings.  I Experience FEAR of this uncharted territory that is also a condition that our society feels free to joke about.

  • Look at it from my viewpoint — treatments for UAB could shorten my life, if they lead to chronic kidney failure.
  • They are keeping me mobile and healthy for the present, yet I am fearful.
  • Spend more time explaining what I can do and what I can expect.
  • Don’t make me identify myself with a Victorian woman – a 2nd class citizen without options
  • See me as a person full of life which is how I see myself — the woman I showed you in the first slide, with a family that loves me.
  • Most of all work hard, write more, fix the broken things, think out of the box: because I am depending on you!



What came first, depression or infection?

Photo #4I am interested in learning about how chronic infection can cause emotional drain and physical soreness.  Recent medical evidence has reported that despair and a wounded spirit can be caused by infection.  During my years of  undiagnosed urinary retention, I kept busy and tried not to give into the lethargy I felt.  I worked and coped, but now the I understand that my chronic bladder infections contributed to my lethargy.  I wonder about all of the women out there suffering from depression and sore bodies,  Is it possible that they are  fighting an undiagnosed infection?

From the book, Beyond Embarrassment:

The spirit of a man will sustain his infirmity; but a wounded spirit who can bear?
—Proverbs 18:14 (KJV)
How many people know something is physically wrong with them, but either their symptoms are dismissed or tests to diagnose the problems are inconclusive? Not surprisingly, when weeks, then months, and even years of illness pass without a letup in symptoms or a name to place on them, many of us start feeling depressed.

That’s certainly what happened to me when I was living with undiagnosed Neurogenic Bladder. Unfortunately, my condition went undiagnosed for years. I often felt depressed. I was very tired and felt physically unwell. Much later I realized I was not physically ill because of depression. I was depressed because I was living with an undiagnosed medical condition, which made me feel exhausted. The constant discomfort zapped my energy level, sometimes catching me off guard. It was hard to tell which happened first: depression or my body’s struggle to fight an infection.

Depression is more than having a bad day. The National Institute of Mental Health describes depression this way: “Everyone occasionally feels blue or sad. But these feelings are usually short-lived and pass within a couple of days. When you have depression, it interferes with daily life and causes pain for both you and those who care about you. Depression is a common but serious illness.1”

1 . “Depression: What Is Depression? What are the signs and symptoms of depression? and How is depression diagnosed and treated?” The National Institute of Mental Health (NIMH), Transforming the understanding and treatment of mental illnesses, part of the National Institutes of Health (NIH), a component of the US Department of Health and Human Services, accessed April 8, 2015, http://www .nimh .nih .gov/health/publications/depression/index .shtml .

Doctor will this exam help me?

phote-jo-2This excerpt from my book Beyond Embarrassment is such a perfect example of a doctor going through the motions of an exam and me not asking enough questions at the end of the exam.  I hope that if a situation happens to me or even you in the future, we take the time to get the important answers.  We need to understand how to advocate for ourselves.

From the book..

During my yearly physical, I have blood drawn for various tests. The physician listens to my heart, looks in my mouth, and checks my weight and height, blood pressure, and other statistics. She checks over my whole body to make sure nothing is developing that needs my attention. My bladder, bowel, and nervous system are not a big part of this appointment. But there are times when I need to remind my family-practice physician that my body reacts a little differently than that of the “average” patient. I need to advocate for myself.

During one routine physical, the doctor felt my ovaries as part of my pelvic exam. As a woman, I need to be aware of the risks of ovarian cancer. The American Cancer Society estimates that, in the United States in 2014, about 21,980 women would receive a new diagnosis of ovarian cancer and that about 14,270 women would die from it. So as we went through the pelvic exam, I was listening carefully. The conversation with my doctor went like this:


One of the symptoms of ovarian cancer is constipation.


Well, since I have a Neurogenic Bowel, I am always constipated; my bowel is chronically sluggish.


The other symptom is feeling bloated.


Since I am chronically constipated but use stool softeners, the bloated feeling is not foreign to me.


Discomfort in the abdomen is another clue.


There are a lot of reasons that I get twinges of pain once in a while. It is just a way of life for me.

My ovaries were tender after the exam, which is another symptom of ovarian cancer. But the topic was dropped, and, quickly, we were onto the next body part.

As much as I like my family-practice physician, I felt like my doctor forgot that I had some nonworking parts and did not really understand that my body had its quirks. As I left the appointment, I wondered if I should have persisted and asked how I can know if I may have ovarian cancer, given that the usual symptoms occur as part of my daily experience with Neurogenic Bladder. I discussed the situation with my urologist, and she suggested that I work with her in the ovary department.

My point in all of this is that, no matter how well we get along with our doctors, we need to prepare for our visits with them, because even “normal” issues can be more complicated when combined with the symptoms of any chronic illness.

Are you prepared for your next doctor’s appointment to advocate for yourself?


Question..Will my bladder function come back?

Question:Photo #4

Hi “Trudy, 

 I’m starting to urinate on my own after 5 months of a neurogenic bladder.  Mine was caused by a viral infection of my brain and spinal cord. My diagnoses were Acute Disemminated Encyphalomyelitis and Transverse Myelitis AND Meningitis.  A pretty big attack to survive of my nervous system.  I’m happy to share that I am no longer partially paralyzed and even was able to ski in my yard recently!  Here’s my question.  My Urologist, while nice and had great credentials, is really not much help.  I asked her if there is any information online about what it’s like when a neurogenic bladder starts to heal and she said no.  Nothing on line because no one knows and if there is anything, it’s probably wrong.  I asked her what I should be doing, as I’m still cathing and retaining, and she told me, each time I get the urge, I should urinate and then cath the rest out, not retain and then try again in 10 minutes.  She was surprised that I hadn’t been given a “hat,” to measure and told me to come get one at her office.  what I really want to know, is what can I expect now that my bladder and nerves are really healing?  The doctor also told me to make sure I’m not peeing more than 500 at a time.  And, I need to keep cathing until I’m only getting 50 or less out.  She said if it’ doesn’t heal to that point in 2 years, it probably won’t.  Of course, I’m ahead of schedule with my healing.  My prognosis for a full recovery is 6 months to a year or longer.

Thank you!!

Trudy’s answer:

Thank you for your question.  I am sorry for your loss and at the same time let me welcome you to our club.  We have a condition that is hard to talk about, and people feel free to make jokes about, so luckily we have found each other. Together we can educate.

The sole purpose of this blog is to offer emotional support for the loss of bladder and bowel function.  I am not a medical professional so some of your questions I cannot answer because I do not have that kind of knowledge or expertise.  I just know what I have gone through myself and what some of the readers of this blog and my book Beyond Embarrassment have shared with me.

For myself I was told by my urologist that there was a chance my function would come back, but it never did.  Unlike you, I cannot pinpoint the cause or time my unfortunate event.

I started this blog because like you, I was so hungry for answers.  I searched for comments to give me comfort, and I wanted to converse with others.

There are many levels to nerve damage.  Some of us need to watch the clock and cath on a schedule, so we do not allow the urine back up and stretch or ureters. This can  cause problems with our kidneys.  That is probably why your urologist wants you to measure your urine output.  I feel full only when I am dangerously full.

As far as healing and the possibility that you will regain your ability to urinate on your own, time will tell, just like your urologist has said.  It is also possible that over time your bladder will stretch like a over tight balloon. Did she mention that your bowel can be affected by this as well?  For some reason the urologist I went to, in the beginning, did not tell me this. For years I struggled with an underactive bowel, not understanding that it was a permanent condition for me.  If I went for long hikes, I would have an accident because I did not understand that my sluggish bowel would build up in my gut, and by exercise it was finally allowed to expel. Now I understand that if I exercise and eat raw vegies and fruits, I am safe if I have a BM in the morning before I start my day.  Pay attention to this, because often when the bladder nerves are affected, so is your bowel.

I think a big part of your question is the plea for medical professionals to write more for us so we can learn more about our condition.  Unfortunately we have a condition that is not a casual conversation. Writing a letter to Aunt Betty and to tell her about my  bowel and bladder function is just not done.

If you are a medical professional please write to us.

Some suggested topics are:

1. Does bladder and bowel function come back when the ability to walk comes back or are they separate?  Are there statistics?  What are our chances for  FULL RECOVERY.?

2. Are there hospital support groups being considered for those with inadequate bowel and bladder function?  Where do patients  go to have my very personal questions answered?

3. Is there anything we can do to get our damaged nerves back?

4. What are the best products to use?  Please write more about the different types of PRODUCTS, catheters, diapers, swimmers, pads that we can use. We as consumers want choices.

Readers, do you have something to add to this?



Starving the Tiger: How physical pain and worry about the outcome can cause depression.

Family and Chronic Illness

Tiz the Season!

All the world is full of suffering. It is also full of overcoming.

Helen Keller

Have depression? What you can do to help.

Many years ago, I was diagnosed with neurogenic (under active/paralyzed) bladder and bowel. Because the unfortunate tidings were hard to accept and process, journaling and blogging became my routine.  On the web, my pack and tribe came alive. Being part of a group of lively people is so important. Together we trade advice on how to live a full life, get through the work day, live an active existence, and take what is dealt, with our pride intact. Embarrassment during that adjustment period, in the beginning, became part of my life, at least at first.  Amazingly after the initial shock wore off, I rallied to the news.  A new protocol was for me.  Being a casualty of this crazy condition was not a path I wanted to go down. I made a choice to be open about my physical condition. 

At times, I live with depression which is like living with an invisible tiger.  He bites and claws at me; sometimes he is quiet with just a little nudge that lets me know he is there.  At low points, he is persistent and hard to shake off. Luckily, sometimes he leaves. He is a secret in my life because of the shame his presence brings.  My life experience is full of abundance.  He cannot stay if my heart is grateful.

To outsiders I had a perfect life.  My depression and paralyzed body parts were not only hidden, they are hardly ever talked about.  Although my positive self-image was (still is) normal, I continue to deal with medical complications because of having broken and paralyzed parts.  For years, a mantra filled my head: “Class and beauty do not equate to bowel and bladder control.”  Sincerely I believe this. Yet the grueling part for me were the back to back bladder infections, a common hazard of using a catheter to empty my flaccid bladder. The brutal feeling of bladder infections caught me off guard: a twinge of discomfort in my bladder and general feeling of malaise.  OK, that is saying it nicely. The feeling that I could punch a hole in the wall is more like it.  I pushed through the pain with a positive attitude. Being the model urological patient was a high priority for me.  Following the doctors’ orders was (still is) important.   I developed a support system through writing this blog. I had the coping skills to handle my medical condition, most of the time.

For a while all was well. The tiger who strove to steal my life, took a break.  

Shocking news came my way. It was hard to rally a second time.

Last year, I was startled by a new declaration, made by my doctor: antibiotics would now be my companion for the rest of my life. The doctor went on to explain to me that I was now classified with third stage kidney failure. Risk-taking is not allowed. Youthful indiscretions are forbidden, because fourth stage kidney failure means dialysis and getting ready for a kidney transplant. The visits to my beloved urologist of many years became less frequent. I was introduced to a new type of doctor, a nephrologist.  Who ever heard of that?  Kidney doctor is easier to say, don’t you think? Nephrologist! Give me a break!  A new doctor.  The word is difficult to pronounce; it gets caught in my mouth.  In one single, life-changing doctor’s appointment, my school girl, fresh as a pea image of myself, was shattered. I saw myself as frail. My world was rocked off kilter.

Suddenly, my invisible tiger came out and clawed itself miserably to me.  I could not shake it off.  Days and days went by and despair become my constant companion. What I knew was stripped away.  The new doctor, a new protocol, caused the tiger to return, so fierce that he tried to make a permanent home.  The tiger then held fast for months, regardless of what I did.  Through coffee time with friends, hiking beautiful hills, whatever I wanted to do, he gnawed through my flesh and caused a bleed that made me weak. No words popped into my head, as they once did.  If they tried, the tiger ate them up.  The tiger stole my voice.  The prose was gone. The tiger sat on my shoulders then and acted brave.  He became obvious to those close to me; he did not even try to hide.

 Temporarily buying shoes helped.  Cupcakes, warm, flying straight out of the oven, would upset my stomach.  Old friends’ voices felt good to hear, but I did not share my secret.   Nothing of what I really wanted to say was said, because I was ashamed at giving into my fear.  Nothing helped. What to do?

Ready for a change, I took the first step looking outward. I broke free from despair.

At wit’s end I decided to volunteer at a rescue mission on Sunday evenings. Why not?  I needed to fill my time and I was losing interest in feeding the power-hungry tiger. That simple decision changed my life. Volunteer work for me, in the past, had been enjoyable but for the last few years I had become lethargic in my civic dutiesWhen we drove up to the mission for the first time, the bright colors of the building were pleasing to see.  The dinner of fried chicken, corn, biscuit, salad, and cookie was ready to be plated. Many, many plates.  Chicken server extraordinaire duties were mine.  Using tongs, making the decision of who got what, took thought. The importance of my role to decide who got what took all my concentration.  Being a mother of four children I understood that the piece of meat and the impartialness of the allotted combinations was important.  Suddenly, my concentration was on chicken parts.  Not my body parts.  My body felt warm.  My back pain was slight.  I was pleased to see hunger replaced by fulfillment.  My feet hurt a bit, but where my kidneys are housed, in my back, forgotten.

There was no clawing at my heart and forgotten emotion filled me.  At that moment, there was no room for the tiger.

I noticed and really appreciated my life for the first time in months. 

Gratitude filled my being.  The feeling of appreciation for the small things in life caused contentment and that warm fuzzy feeling felt well with my soul.  For so long I was blind to the important things in my life. I have a roof over my head.  I can eat whenever I want.  I have a family to go to when I need help.  Now my outlook became sprightly.  What a sheer relief I felt as I walked out of the mission on that first day.  Every day I need to remember that the small things in life are the most important.  Being the center of my universe does not make me happy.  Looking outward is more pleasurable than looking inward.

My thoughts turned outward, which starved my tiger. For a wonderfully long time he simply disappeared.

 Epilogue: I wrote this essay last year and I am happy to say that my kidneys are doing much better because I am taking a daily dose of antibiotics.  Depression is real for us because we live with setbacks.  This holiday season my suggestion to you is to give to others and seek help if you need it.   If you need help getting through the season, please seek help.  

Here are some USA numbers that might help, if you feel desperate.

Suicide Prevention Hotline: 800-273-8255
Veterans Suicide Hotline: 800-273-8255
Domestic Violence Hotline: 800-799-7233

God bless you. Happy Holidays, Merry Christmas, and Happy Hanukkah.

How do you overcome major set backs?

An Attitude Change was in Order

Photo #4Now I am bold when it comes to my health story.  This attitude is new to me because I have not always felt this way.  At first I was horrified, then very embarrassed by my diagnosis of neurogeneic bladder.

After trying to learn more about this difficult condition, I felt frustrated because I could not find the information I needed on how to live a normal life.  I started this bolg as Trudy Triumph because  was ashamed of my broken bladder and bowel and I needed a friend to talk to.

 I found you.

Much later after I decided to write the book, Beyond Embarrassment, my editor asked me to write about the hardest day ever.

This first sentence of the first paragraph of the book, was my horrible day story, because I did not want anyone to know my medical secret. I was ashamed.

And if you work at a school, you understand it is a bit like working in a fish bowl..

From the book, Beyond Embarrassment:

“We are all faced with a series of great opportunities – Brilliantly disguised as insoluble problems .” —John Gardner
That Monday, I came to work full of trepidation. I had become exasperated over the weekend as I fumbled and said words that I should not have said, all because I had spent long hours in my home bathroom learning to use a woman’s intermittent catheter. I cried several times out of the sheer frustration. My new toileting routine took so long. I felt like I had been given a life sentence to a porcelain throne. Today would be my first day to use a catheter at work. I had only minutes to find a private place and wash my hands; only then could I struggle to unwrap the lubricant, unwrap the catheter, and then finally find the small orifice on my body to insert it. Thinking about finding that spot on my body made me sweat, though the day was cold. Walking through the halls of the high school that day, I felt like a freak.

I chastised myself for drinking the extra cup of coffee at daybreak. There was little time to catch my breath let alone use the restroom, even on a good day. Worrying about how I would manage emptying my bladder within a fifteen-minute time frame was not what I wanted to think about as I started my day. Location was the key. I ruled out my initial idea of the nurse’s room, even though it had a larger area and a private sink. I worried about the long line of staff and students that might form while I took such a long time. What if someone got sick and needed the bathroom? No, I would use a quiet, private restroom upstairs. The door was usually locked, so it would be perfect.

At the start of my break, I sprinted up the stairs, and, at the top of the flight, I ran into a friend, just starting her break as well. The unending conversation continued. I wanted to lose her and take care of business. It was clear that the discourse was not going to stop, despite the fact that I gave her little encouragement. She followed me to the door and watched fascinated as I unlocked that coveted vacant restroom. I was stunned as she lightly said, “What a good idea to use this rest-room. I’ll go after you.” What could I say other than, “No, please, go first.” Disgraced, I slipped back into the classroom tardy.

What was your hardest day ever?



Woman’s Intermittent Catheter, you can do it!


Dear Trudy,

I would like to be part of a support group of neurogenic bladder. I am very concerned about it as far as the urologist advised me to self-catheter twice a day. I am in shock. My husband is helping me right now but I have to get used of it. Also I am afraid that doing two catheters a day I will not able to do by myself. My bladder is working but obviously it is not doing it well. I have a lot of retention. I am very, very sad, and to read your blog made me think that not everything is lost. Forgive my English, I am Spanish speaking, and I live in Israel. Thank you if you can get in touch with me, thank you very, very much!

A Reader


Dear One,

Thank you for your email.  You are exactly who I write the blog for.  I agree, the diagnosis is devastating. I felt so compelled to start this blog because I felt as you do. You are very fortunate to have found out.  I suffered for years before I discovered that my bladder was the size of a large melon.

As far as support groups, I am on one, on Facebook.  It is called Neurogenic Bladder and Bowel.  I have tried others and they have not worked for me as this one has.  It is a closed group, so ask to join.

This group has helped keep me sane. Not long ago I woke up and felt complete fear.  I had a busy day, I was constipated (often if you have an underactive bladder you have a underactive bowel as well.) I had bladder pain and I was off to a substitute job at a nearby school.  I was not sure how I was going to pull the day off.  I sent a post out to this Facebook group and really let it rip..whaaa, whaaa, whaaa, you know what I mean? I was willing, but my body was weak.  It just felt good that there was a group of folks out there who understood how I felt.  I received the sweetest comments and wonderful encouragement. I agree, support groups are important.

You did not mention your physical limitations in the email.  Are you physically able to cath yourself?  It is easy to learn.  You will become more independent.  Also, it might be better for you to cath more than twice a day. Talk to your doctor about this.  If you are able, I promise you will get used to using a catheter.  I use a small compact cath and use it about 4-5 times a day. I sit on the toilet, as I use a catheter.

I do not use a mirror because there is no need to.I find this funny because I am sure a male urologist suggested that women use a mirror. Men can see their parts. Perhaps whoever suggested that we use a mirror (a male I would bet money on) could not imagine that seeing is not important to us.  We women were born with a three dimensional road map and have never seen our private parts. We need to feel. We do just fine without a mirror.

Bladder infections, are the hardest part of an underactive bladder, for me. They happen at inconvenient times. Using a catheter is not perfect and it leaves us susceptible to them.  This is something that we live with, but the good thing is, we live.  Perhaps we have broken bodies. All do really. What is not broken is our soul. We have a lot of living to do!

You are not alone.  There are many of us that lead happy, productive, good, lives.  Many children learn to use catheters too.  Now you are part of our club. Welcome.

An Excerpt from my book,

Beyond Embarrassment,

by JoAnne Lake (this is my real name) with Julia Parker

So, here is how to insert a catheter without looking. The key is to understand the anatomy in the female genital area (vulva). The clitoris kind of stands out on its own. The vagina is the large opening behind the clitoris. The urethral opening is between the clitoris and the vaginal opening. I start by washing my hands with soap. The catheter I use is self-lubricated, so that takes out a big step. If I accidentally touch the tip of my catheter with my hand or another object, I throw it away, to prevent infection. I do not clean my labia at the time of insertion, since I shower once a day. My urologist told me it is not necessary, anyway. There is another school of thought, and that is that cleaning your labia with an antibiotic solution before using a catheter is best. My thoughts on this vary. I know there are bacteria in the labia, but the stinging that can happen if I had to put a solution on my labia six times a day makes me “ouch” just thinking about it. For advice about this, ask your doctor.

 After washing your hands, gently press the catheter in the area between the clitoris and the vaginal opening, and soon you will find the spot. There is definitely an opening, which will become apparent as you probe gently. It will happen, I promise. After I use my catheter, I throw it away because reusing catheters can cause bladder infections. If at all possible, I suggest you use a single-use catheter.

Shed the shame and stand proud!

Drugs and Devices to Discuss with Your Doctor


               Michelle Y. Llamas

                 Snior Content


 Occasionally we are fortunate enough to have a guest.

Michelle Llamas is a blogger from Drug Watch

We all rely on drugs and medical devices to improve the quality of life for us and out loved ones. But sometimes drugs put device companies put unsafe products on the market, ones that give us conditions that are worse than what we needed treatment for originally. When that happens, Drug Watch is there to help.

Doctors are people too, and even those with the best intentions might not always understand how a drug, medical device or surgery can affect some patients. For this reason, it is always best to be prepared when visiting your health care provider.

When faced with a neurogenic bladder, doctors may offer a few treatment options to patients. Any treatment that promises a better quality of life can be attractive. But, while some of these treatments may offer benefits, they may also harbor unknown risks. In the case of neurogenic bladder, doctors may recommend fluoroquinolone antibiotics for chronic urinary tract infections or a mesh bladder sling for incontinence. Studies have shown that while there are some benefits to these therapies, the side effects might outweigh them.

Here is some information on these two treatments that can help you be your own advocate.


Fluoroquinolones are the most commonly used type of antibiotic in the U.S. They include drugs such as Cipro (ciprofloxacin), Levaquin (levofloxacin), and Avelox (moxifloxacin). The most popular of these drugs is Cipro and it makes up 80 percent of all prescriptions. These drugs are popular because they treat a wide variety of bacterial infections. It is the preferred treatment for urinary tract infections (UTIs) and bladder infections. But these drugs also come with a long list of side effects.

For individuals who already suffer nerve-related conditions like neurogenic bladder or bowel, these drugs can be catastrophic. In studies, fluoroquinolones are linked to peripheral neuropathy — a type of nerve damage that can be permanent. It causes poor bowel and bladder control, burning pain, organ and gland dysfunction as well as digestive issues. In 2013, the FDA added a warning to fluoroquinolone labels advising of the risk.

Other serious issues related to these antibiotics are tendon rupture and aortic aneurysms and dissections — bulges and tears in the aorta. The FDA has a black-box warning for tendon rupture associated with fluoroquinolones. A study in JAMA medical journal showed these drugs can cause a two-fold increased risk of dissection and aneurysm in the first 60 days after taking one of these drugs.

Fortunately, these are not the only antibiotics and treatments available for urinary tract infections. Some of these include trimethoprim/sulfamethoxazole (Bactrim DS, Septra DS), nitrofurantoin monohydrate/macrocrystals (Macrobid) and fosfomycin tromethamine (Monurol). Keep in mind, no drug is free of side effects, but patients should be able to make a decision based on risks and benefits with their doctors.

Bladder Slings

Bladder slings, also called bladder neck slings or transvaginal mesh slings, are one of the surgical treatments for neurogenic incontinence. This treatment is more common in female adults and children diagnosed with the condition, but some males also undergo the procedure. Doctors use the patient’s own tissue or a synthetic plastic mesh implant to support the bladder neck and help it close to prevent urine from leaking.

One study in the Journal of Urology showed a high rates of success — 70 and 90 percent — in treating incontinence after surgery. Study authors found the sling “safe [and] relatively easy to perform and cost-effective compared with most alternative procedures.”

However, the FDA has also received thousands of reports of women who suffered severe complications. These include mesh erosion, nerve and organ damage, severe pelvic pain, hemorrhaging and other issues. Surgery to remove the implant and repair damaged tissues is costly and carries its own complications.

Many of these women filed lawsuits against mesh makers for failing to warn them about the risks. When considering a surgical treatment, make sure you use a doctor who specializes in these types of surgeries and can discuss the risks and benefits. Make sure to get multiple opinions if necessary. Surgeries using the patient’s own tissue may have fewer complications than one with synthetic implant.

Be Your Own Advocate

In her book, Beyond Embarrassment, JoAnne Lake discusses her own struggles with being prescribed a fluoroquinolone for a bladder infection and discussing her treatment options with her doctor.

“My body had enough problems, and I was not willing to risk having painful cartilage issues along with all the other things going on,” JoAnne wrote. “My doctor was quite offended when I would not take his drug of choice, and he refused to offer an alternative.”

JoAnne shares the importance of having a doctor who will listen and be willing to work with the patient. Patients need to be their own advocates, she says. Sometimes, this means going through a number of doctors before finding the right one. It also means being an active participant in treatment.

Fortunately, the internet is a great resource. Read up on any prescriptions and procedures and be ready with questions.

Bio: Michelle Y. Llamas is a writer and researcher for She is also the host of Drugwatch Radio and has appeared as a guest on podcasts and radio shows. Her work has appeared in peer-review journals.


Castellan, M. et al. (2005). Bladder neck sling for treatment of neurogenic incontinence in children with augmentation cystoplasty: long-term followup. Retrieved from

Dik, P. et al. (2003). Transvaginal sling suspension of Bladder Neck in Female Patients with Neurogenic Sphincter Incontinence. Retrieved from

The Medical Letter. (2012). Drugs for Urinary Tract Infections. Retrieved from


BEYOND EMBARRASSMENT receives the Silver Living Now Award for Enriching Lives

living-now-awardWhen we wrote Beyond Embarrassment, the goal was to offer comfort and compassion to those dealing with neurogenic bladder and bowel, because this disability is so embarrassing.

The tag line, for Trudy Triumph, the blog and the book,  is…Shed the shame and stand proud.

This award shows that the judges understood the point of our book and I am thrilled that it stands among other motivational books.

I did not do this alone.  Julia Parker did most of the research. She helped with some writing and tons of proofing. Most of all, she was a friend through the entire process.  She continues to be an encourager to me, as I try to encourage others.   Dr. Lora Plaskon was the icing on the cake.  It is impossible to write a medical book without the endorsement of a medical doctor.  She is such a good doctor because she cares about the person. She noticed my blog early on and was happy to see a patient’s voice. The forward she wrote for the book is right on. As a writing team, we truly needed each other.

Knowledge is power. Besides my story, I chose to add medical research and interesting tidbits to the book, for a feeling of community and understanding.
 Comments about the Living Well Awards

“The Living Now Book Awards recognize books that help readers help themselves, to learn about enriching their lives in wholesome Earth-friendly ways. Lifestyle publishing categories such as home, health, family and personal development are the fastest-growing segments of book publishing today, and the Living Now Book Awards help demonstrate the importance of these books to readers and their vitality in the marketplace.”

“Books are an important tool for gaining knowledge about life-improvement goals, and the Living Now Book Award results announcement is a must-read list for helping us achieve those goals.”

“Authors and publishers all over the planet are helping readers sense the need to slow down, see and feel the natural world around them, and to find balance in their lives. The Living Now Book Awards are intended to recognize and promote newly-published lifestyle books that help us keep ourselves, our families, and the Earth healthy – today, and for future generations.”

 The judging panels include experts of editing, design, reviewing, bookselling, and library.  Judging is based on content, originality, design, and production quality, with an emphasis on innovation and creativity. The judging panels include experts of editing, design, reviewing, bookselling, and library.  Judging is based on content, originality, design, and production quality, with an emphasis on innovation and creativity.
This is a happy day indeed.  To be understood is to feel whole.

Finding Joy in the Mist of Trouble

10 ways to find your joyRandy and I Joy

  1. Find joyful books, How about,  Marley and Me?
  2. Find joyful people.
  3. Celebrate what you have, even the little things.
  4. Be creative.
  5. Help another.
  6. Organize a drawer.
  7. Take a load to Salvation Army.
  8. Stay away from the news.
  9. Forgive past grievances.
  10. Think of something that you can smile about.


A few weeks ago I visited a dear relative and his wife. Both of whom are going through a major obstacle. He is suffering from ALS. (Lou Garrick Disease)

Because the affliction can hit any part of your body at any time, it is not unusual for the bowel and bladder to be effected first. For Allen his first hint was extreme exhaustion.

Here is the definition of ALS;

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease or motor neuron disease, is a progressive neurological disease that causes the neurons that control voluntary muscles (motor neurons) to degenerate, according to the National Institutes of Health (NIH).

In the United States, as many as 20,000 to 30,000 people have the disease, and about 5,000 people are diagnosed with it each year, according to the Centers for Disease Control and Prevention (CDC).

A monthly activity they participate in is a picnic for families who are dealing with the various ramifications of this disease. We all know that there is safety in numbers. There is acceptance and comfort that leads to an inner joy. For Allen and Sophie this time together with other families offers a kind of normalcy to their situation, an opportunity to ask questions, and most important a community that knows exactly what they are going through.

I see this blog similar to the picnic mentioned above. It is a place where we can be real and share our concerns with overactive and underactive bladder and bowel. Our plight is not common in conversation at the dinner table, similar to what Allen and Sophie deal with. For them, a discussion about dying a slow death is not a topic most want to have, so to be with others in a similar situation helps to feel normal.

Are people dealing with difficult situations supposed to be glum all of the time? Absolutely not! We have but one life, so it is important that we find the joy in our situation and move forward.

Today Allen and family members are planning a trip to a gun range. The men plan to hold Allan’s gun up as he aims for that target, but mostly I suspect they will have a day of men talk or perhaps men non-talk. Regardless they will be together and enjoy each other.

No matter what life throws at you it is possible to find JOY

Let me encourage you to be joyful in spite of hard circumstances.  The alternative will bring you down and ruin your day. Can you give a friend a call?  Can you create a beautiful picture? What can you do to find your joy?


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