I was invited to speak at the 2nd International Congress on Under-active Bladder – CURE UAB, Denver CO. 12-3-15.
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.
I was invited to speak at the CURE UAB Symposium because I write about the underactive bladder. I use an intermittent catheter, my kidneys are wearing down. I am a patient, but I refuse to be quiet because our voices need to be heard. I feel thankful to have an opportunity to share the patients voice.
My Notes.
Intro
I am one of 5 million people in America with bladder problems.
I feel humbled and honored to stand before you and right now.
Thank you for making this a priority.
You are working to make my life better and others as well.
Try to think back to a time when you faced a life changing
situation that you wanted to run from.
I want you to understand this walk I am on and to get an idea of my challenges.
To see that it takes a lot to have my head held high in a society, that finds it is acceptable to make jokes, about a life threatening, sometimes humiliating condition.
I want you to understand why I write a blog and have written a book about my paralyzed private parts.
Body
My Early Symptoms were gradual over a period many of years…
- My urine flow became weaker and weaker.
- At times I had bowel accidents as I walked.
- I was lethargic and depressed but luckily 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 really hard.
- Food did not taste good.
- Had a pain in the side of my body that would not go away.
Finding help
I went to several doctors was offered stool softeners, antidepressants for irritable bowel syndrome and depression.
This condition is difficult to diagnosis
Early diagnosis
By age 55, the pain was so intense it was enough to require a urologist’s intervention.
It turned out that urine retention had stretched my bladder so that 2 liters of urine were removed and left me prone to a bladder infection,
So I was taught how to use an intermittent catheter.
Dealing with the shame isolation and loneliness was hard..
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, defeated, and overwhelmingly embarrassed as well.
My many confusing symptoms were caused by a broken part…and to make matters worse it was…down there…
As I continued my daily life I had a menagerie of thoughts I needed to work through. Sometimes facing the world was difficult. To help process my thoughts I started journaling….. sometimes as prayers to God.
I had so many notes and scraps of paper with my innermost thoughts I decided to start an anonymous blog TrudyTriumph.com, under the pen name Trudy Triumph.
On February 12 of 2012 I posted my first blog entry sharing with the world about how I felt about my diagnosis of neurogenic bladder.
As I write to the world I imagine the reaction of my friends and family, I feel a bit queasy because, now they will have a peek into my very private life, just as you do now………………….
Part of me does not exactly want to be remembered in connection with a toilet, yet I see Urinary health as a last frontier of topics that need to have mature acceptance and an active audience.
Here are a few facts about my blog
- Surprisingly more of my readers are men, yet when I write, I write to women.
- My readers log on from around the world
- My most looked at topic are those on intimacy and hysterectomy
- I know from readers that people feel unheard and desperate and many are left with little help after diagnosis.
- Many feel very isolated and alone, and afraid. When I attended a blogging convention is San Jose last summer I shocked participants when I told them what I wrote about. I wish I had one of those go pro cameras on my head, so I could record the faces of shock and disbelief.
Here I am in front of all of you not just pleading for help just for me but for others as well. Perhaps it could be because of back surgery, a vaginal hysterectomy or multiple sclerosis,
I do not know why I developed neurogenic bladder and bowel.
I do have some questions for you…
I feel as though I have had quality, caring medical care. I can live with a broken bladder and bowel but bladder infections continue. Just last month I was on two types of oral antibiotics.
A couple weeks week before that I was in the hospital with IV antibiotics for a kidney infection.
Chronic bladder infections are the bane of existence for me, for many of us with underactive bladder. I was given a short reprieve of about a year, using Gentimiasin, an antibiotic wash that I placed directly into my bladder. Unfortunately, I have become resistant to it.
The Yoyo continues
Now, that I have to rely on oral antibiotics again, it is not unusual for me, upon completing a regimen of oral antibiotics, to soon find myself afflicted by another UTI.
Having a year off from bladder infections …. Was great!
Unexpected bladder infections affect my work week, they affect my relationships and they shorten my life.
So my question to you is how can a colony of bacteria in a bladder be taken care of?
I am not alone in fearing bladder and kidney infections…
Here are some samples of written comments:
A post from a young man that is scared
Need some opinions here… …………………………………………..
Hey Friends, I am going crazy. In April I was hospitalized for a kidney infection. I started with UTI symptoms, again, cloudy urine, increased bladder spasms, fatigue, low grade fever, etc.
I found out I have 2 types of bacteria’s in my urine and one is MRSA. Has anyone ever had a mrsa uti? This scares me to death!
If I could write to hip I would say YEP..I am part of the staff infection club too.
A mother of a young child says
So tonight I was giving my daughter a bath and noticed her kidneys are really prominent.. Like u can see the outline and its freaking me out right now!
I find the letters about the kids hardest to read…
SO as you discuss my plight of UAB this weekend I plead with you to consider all of us that rely on intermittent cauterization. We certainly need your help to live a little longer. The subject of reoccurring bladder infections is important to discuss.
I have wondered why diagnosing Under Active Bladder is so difficult…
Urinary retention is difficult to diagnose. Especially in the early days before our bladders get so big. So many times those of us with urinary retention are diagnosed with fibermialga and given antidepressants.
How can you get the word out to other medical professionals that urine retention can be caused by so many things?
Is there a way to detect Urinary retention without the bladder becoming the size of a watermelon?
I have a wish list I would like to share with you..I wish that catheters could be sold in a drug store.
I wish they were easily available. There are times when I travel that I know if I get into trouble and run out I would have to go to an emergency room.
And If I have to go to the hospital to buy emergency catheters then how hard will it be without a prescription?
There is a reason for this…I traveled with a group of students to the very hot city of Kyoto, Japan and the catheters I took melted in the heat. Luckily I had another variety that was given to me. That situation could have been a disaster.
ANOTHER WISHI wish patients could spend more time with urological nurses to learn about living strategies. SO many of us feel isolated and alone because we do not know how to cope with the ever occurring accidents that seem to crop up at unexpected times.
Perhaps I could help set up a support system for patients with your guidance.
SHIFT GEARS
The book
After working on the blog for a while I started the book with Julia Parker, the bright and very talented medical research librarian
Beyond Embarrassment, reclaiming your life with neurogenic bladder and bowel
The collaboration that happened was beyond my wildest dreams. So many people helped and contributed to the book
It is my deepest desire for others and myself to be heard
I feel an incredible responsibility for you to understand the human side of this condition.
The book is my Medical Memoir It is not just my voce but has other letters from patients as well
In writing the book I wrote about not only the physical part of my being but the spiritual as well. You will see a few scripture verses throughout the book.
I hope this part of my story will not be a deterrent to help others. I want my story to be inclusive
My goal in writing the blog and book is to offer others some lessons I have learned along the way such as
- Be your own self advocate and 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.
My hope in sharing my story is helping others feel normal and making it easier for others to discuss bowel and bladder dysfunction.
Conclusion
Please remember this…
Neurogenic bladder and bowel are isolating conditions. We are taught as youngsters never to talk about that part of our body. So please understand that when we come into see you, we are shaking in our boots.
Bladder and kidney infections are not only hard and painful but they also scare us. Please do your best to help us with this dilemma.
Many of us haven’t even confided to our friends and family and we are having a difficult time coming to terms with what our condition means.
- Recurring bladder infections
- Becoming resistant to antibiotics and
- Loosing kidney function
Many of us are elderly and so confused.
It is important for us to have living strategies in place for a working comfortable life, there is more to our needs than the medical side. We need practical advice.
Thank you for spending your time to understand this condition. It is my heartfelt wish that many will benefit from your hard work.
We have a book table set up please come visit us.
The Researcher for the book, Biosleuth Julia Parker will be there and is willing to help any of you better understand the new PUB MED cataloging system for medical research.
Our books will be on sale too.
The cost is $16.95, if you are interested in paying by credit card. Please log on to your own device to TrudyTriumph.com and follow the props to buy the book.
Our goal with this book is to help others. Because of this we are offering a package deal as well. If you order 12 or more books we will offer you a 25 % discount. Please come see us at the table.
Thank you for taking your time to better understand UAB. You will make my life better because of your fine work.
How could I have done better? What more could I have said?
Happy New Year!!