I don’t know about you but I grew up in a rough neighborhood. It was rural Prunedale, California. Our school and playground got scrappy. I don’t remember any of my friends asking me how I felt. We just ran as fast as we could to the wall ball area so we could be first in line to hit the ball against the wall. There were special acolytes one of us bounced the ball on the roof. That was ALWAYS the goal.
Now I have the most embarrassing condition one can imagine, a broken bladder and bowel. Because of my playground days,
I learned these important lessons.
If I fell on the playground and my mouth bled, few noticed unless I screamed loud. This blog is my scream-loud tactic.
Even if kids saw my scabby lip, they didn’t care. Now I keep quiet about my medical condition unless someone shows interest.
If a kid tried to push me and I could get away with it, I pushed back. Now think about this folks, writing a book about personal bowel and bladder dysfunction is a set up for a big put down by the prim and proper folks. This blog and the book are my written push back attempts. WE CAN TALK ABOUT THIS!
My friends did not care until I gave them a reason to care. When my friend Adrian and I ran for Sargent-at-Arms, we won because candy helped. This blog and the book I wrote is your gift from me, like the candy, and hopefully your gift to others as well.
To get a friend, you need to be a friend. Friends pass the day very well indeed
Scabbed lips make good school pictures.I am forever grateful that I had a mom who celebrated my imperfections. I grew up to not run away from the painful.
It does not pay to lie, you get caught anyway. I had to decide early on to whom I was writing. Patients are my target audience. Sometimes I write about things that perhaps the medical profession would not like. That is ok because I am a single person and this blog is a voice of a patient, not a “paid to sell” or a tactic to sway you a way, I would not go myself.
When I bragged few cared. But if I was real, I was showed empathy. This one needs no explanation.
If a kid is stinky, the bullying satisfaction only lasts a short time. Bullies grow up to have problems of their own.
It made no sense to try to please the popular girl because she was not my friend anyway. Do you know the most popular nonfiction books are cook books? I hate to cook. Right now, you are my friends because we are interested in this topic. I feel fulfilled doing this, popular or not.
Pelvic pain has many causes; endometriosis, menstruation, constipation, for me I am sure mine was caused by bladder infections that cropped up nonstop, because of my underactive bladder.
With all of the drama and head games swirling in my head I, at one time, I lost my identity. Was I a sexy wife or the worlds biggest looser? Anyone could get depressed feeling like a failure in the area of marital bliss.
Sometimes living is a choice to move past the pain and just try to engage in intimacy with your partner. Are we to completely give up a part of life that brings two people together so completely?
I understand that there are all kinds of discomfort rating from one to ten. I am not talking about the higher number here. I am talking about the day to day, never forget, always tugging, toothache feel, always nagging, does not cripple, but pelvic pain that does not go away.
I needed encouragement to just try intimacy. My husband was patient with me is this area and we were successful in not losing a very real part of our marriage.
I will say however that pelvic pain is rough and being honest with your partner is key.
Taken from Beyond Embarrassment: Reclaiming your life with neurogenic bladder and bowel
By JoAnne Lake with Julia Parker MS, MLIS
Intimacy, Page 54
Bladder infections were the bane of my existence, and I wanted to avoid them at all costs. So much medical advice stressed that people who got frequent bladder infections should urinate after intercourse to flush any bacteria out of the urogenital cavity. Well, what if I had to catheterize myself? How did that help? Would sex make things worse?
I was too shy to discuss these issues with my doctor, something that would have ultimately made this transition much easier for me. I did not want to draw attention to my concerns regarding sex and my sexuality. Maybe, on some level, I hoped that, if I did not talk about my personal health issues, even with my husband, I would figure it out on my own, or they would just disappear. Of course, I did not, and they did not, either. So instead, for too long, I lived alone with my fears and questions.
The thought of getting a bladder infection from having sex caused me to shut down. Instead of being pouty because of the rejection, my husband patiently — and I cannot emphasize enough how patiently pressed on. I was so afraid of getting sicker. I wanted to say, “I already gave at the office, so leave me alone.” It was the worst sort of mind game.
Fortunately, my husband and I could trust each other about this, too. Because of his loving nature and openness to my concerns, he helped me to express my fears and be honest about what I needed from him to be comfortable having sex. We discussed issues of hygiene that are so important when dealing with Neurogenic Bladder. We talked about how almost constant pelvic pain made it more difficult to find that sweet spot and how it might take longer to warm up. In addition, I realized that I needed to be careful about overthinking issues. If I allowed fear to control me, I might be alive, but I would not be living.
I wrote my memoir as I blogged about the topic of neurologenic bladder over several years. My story is unfortunately common because bladder problems many times go undiagnosed and haunt many.
Imagine my surprise when I discovered that my many symptoms were because of a broken bladder. I had no idea. Then imagine my second surprise. I could find very little about the underactive bladder on the internet. How could a broken part cause so much havoc with my body? Why in the would had I never heard of this before?
Then the greatest event happened. I got a friend interested in my project. I was no longer alone in my toil. Julia Parker MS,MLIS, the Biosleuth, and medical research librarian worked her magic, to my many questions. My story was nothing until we had Julia medically validate what I wrote. And validate she did. besides that I finally really understood how common this condition is. and how many ways a person could fall prey.
Because of Julia’s input a person reading this book will have an excellent understanding of this condition.
Another person that added so much to this project was the the wonderful urologist, Dr. Lora Plaskon. She wrote the awesome forward.
From the book, Beyond Embarrassment:
We hope you have found this book to be a great encouragement and source for better understanding the many health issues that can affect the bladder. An editor in the publishing industry once explained to me that every book has potential value and insight, since no two authors who write on the same subject will ever duplicate each other. It’s just not going to happen.
Of course, you may wish to consult with a medical librarian to get started on your search for health information. Hospitals and their medical libraries were originally maintained exclusively for the use of their physicians and staff. Now, many community hospitals include a Consumer Library, which is open to the public, with its specialized medical information that you won’t find in most city or county public libraries. If you are fortunate to live near a university with a medical school, you should check with them to see if they are open to the public for reference services.
Hi! First I want to say thanks for being brave and speaking out about this problem.
I have small, flaccid neurogenic bladder. My question is should I wear diapers? I do wear menstrual pads, but sometimes they are not strong enough to keep the fluid in, so I must change them from time to time. I do not have incontinence, but I cannot pee right, it always stays in my bladder, so I relieve myself in the pad. I cannot live in lady room, right? (Sometimes it feels like I should.)
How do you step out of your comfort zone? Going out is really a problem for me. I am always afraid I will leak in public as I have small bladder I cannot hold too much, my urgency is at 180 ml. My max. is 200 ml. I am a 26 year old women. I been having problems since I was 10 years old. I did not have any medications for it, nor catheter. I do not know why, I am also afraid it will get worse since I did not have any treatment. Tina
Thank you for your question.
I step out of my comfort zone because I want to live my life. I get into trouble now and then, I admit, but at this point in my life I am not ready to stay housebound and you shouldn’t either.
You say you do not have an urologist that you are working with? Finding a good urologist is key. You need to see a doctor because your health depends on it. Perhaps he or she could answer some of your very important questions. Please write me back and tell me that you will do this.
There are several organizations that can help you. To find a urologist and perhaps help with product choices.
I use an intermittent catheter. I do not leak, but many do, so finding help, for the products you need, is what you need to do. For years my attitude was exactly like yours. I thought that this was what I was chosen to live with and I needed to just live with it. What I did not understand is that I was not doing my body a favor by ignoring symptoms of an underactive bladder. There are other body parts you can hurt by trying to be stoic.
Here are some contacts you can make: A quote from Beyond Embarrassment, JoAnne Lake with Julia Parker
Society of Urologic Nurses SUNA Headquarters East Holy Ave. Box 56 Pitman, NJ 08071-0056
Underactive Bladder Foundation, PO Box 5080 6360 Broad Street Pittsburgh, PA 15206-9998
Start with the above contacts. There are many more in the book. I do not know where you live but if you have a teaching hospital nearby perhaps that would be a good place to start as well.
Here is another idea to help you find the products you need.
Quotes from Beyond Embarrassment, JoAnne Lake with Julia Parker
Incontinence Pads and Diapers One of the most obvious issues people with Neurogenic Bladder deal with — and unfortunately, one of the greatest sources of frustration — is finding the best bowel- and bladder-accident protection for their needs. No two people are exactly alike, so we can’t use one-size-fits-all devices and aids. What’s best for leakage will not work for a full-on flood. So for “the rest of the story,” I interviewed Scott Beckert, RN, an expert in the field of incontinence products, having worked with patients living with all types of urinary incontinence. He explained that, by default, many of us go to the grocery store and buy an adult brand of protection from stocking clerks who have no idea what we need. They sell us their own brand suited to a woman who dribbles, not a full drencher. The diapers in the store may be geared to light incontinence. What if a person needs help for overnight incontinence? Then a person should use a product that can contain the amount of urine that is expelled overnight. Buying an inferior product can cause frustration and perhaps disaster. The search for the perfect adult diaper or pad is daunting because there are so many products available and so many factors to consider. It is important to be well informed of your options. Scott recommends that first we look for gender-appropriate supplies. Men and women are different, and it matters. How and where the urine enters the product makes a difference in how efficiently it is absorbed.
Then further down, on page 78 is:
I have found that talking to an online salesperson about my needs is most helpful. He or she is an expert in the field, and there is the added bonus of much-needed privacy. Make sure that the product you order online or over the phone includes discreet packaging. No need for your neighbors or the mailman to know your business.
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.
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 Triumph.com 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.
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.
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.
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?
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.
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.
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.
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.”
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.
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.
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
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
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!
I 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 .
This 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?
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 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.
All the world is full of suffering. It is also full of overcoming.
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 duties. When 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.
Now 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.