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Living with a Colectomy
My name is Keith Thomas; I am a 59-year-old bus driver from Swansea, in South Wales and I now live in Llanelli. Diagnosed in 2008 with Ulcerative Colitis, after many years of illness, my bowel finally gave up on me, in 2012, and I had to have a total colectomy. Prior...
Kidney Kindness for the Neurogenic Bladder
About six months ago I was diagnosed with Third Stage Renal Failure. A wake up call for sure and I flipped of course because I am not the stoic sort. Please do not think bad of me, yes I grew up with Love Story too, I just do not want be the one saying long goodbyes. I know God is in control and in the end I have gotten used to the idea. Here is a little of what I have learned.
My husband and I had travels to do, so just yesterday was my first visit with the doctor who specializes in kidneys a Nephrologist.
What Is a Nephrologist?
https://www.davita.com/kidney-disease/overview/treatment-overview/what-is-a-nephrologist?/e/6884
A nephrologist is a medical doctor who specializes in kidney care and treating diseases of the kidneys. The term nephrologist comes from the Greek word “nephros”, which means kidney or renal and “ologist” refers to someone who studies. Nephrologists are also called kidney doctors. Nephrologists are educated in internal medicine and then undergo more training to specialize in treating patients with kidney diseases. They commonly treat chronic kidney disease (CKD), polycystic kidney disease (PKD), acute renal failure, kidney stones and high blood pressure and are educated on all aspects of kidney transplantation and dialysis.
For years I have been visiting the Virginia Mason Urology clinic, in Seattle Washington. Actually it is called the Urology and Kidney Transplant Department, Thoughts of dread swelled the first day I saw that sign. I was shocked to see the sign actually, I was not really thinking that there was such a strong connection between urological woes and kidney disease. “No dialysis or kidney transplant for me!” has been my mantra. Being real I need to know that even though it is unlikely it is possible for anyone with urological problems to end up with kidney disease.
My kidney woes likely started many years ago when I was living undiagnosed urine retention and then years following with back to back balder infections. For that part of the story check out my book, Beyond Embarrassment: Reclaiming your life with neurogenic bladder and bowel.
So yesterday was my first appointment on the other side. I was ushered..
Calling all Underactive Bladder Patients!
Stanford Biodesign 2Hi All,
Not long ago I was contacted by some doctors from Stanford, who are interested in connecting with those of us that have an underactive bladder. I tried to get the scoop, but was told it was a secret for a while. I am passing this along in case you are interested in contacting them. If you do decide to help these fine folks, please let me know how it goes. I told them that I might be interested too, after I found out what they were working on. The underactive bladder is a real problem for many and it seems there is interest in helping us, thank God.
I wish you fine doctors at Stanford a windfall of positive results!
Calling all underactive bladder patients!
Stanford Biodesign is an innovative program located in the heart of Silicon Valley focused on solving meaningful clinical needs. Our team, composed of engineers and physicians, has a mission of helping patients with underactive/neurogenic bladder. Patients are at the heart of innovation – it is their need for better solutions that is driving us forward.
Therefore, we are looking to talk to you about your experiences to understand the issues of day-to-day management of your bladder. In return, we may be able to help you become one of the first patients who is finally free of self-catheterization.
If you or someone you know has been diagnosed with underactive/neurogenic bladder and is interested in helping advance underactive/neurogenic bladder research, please send an email to UAB.research.timm@stanford.edu with a subject “UAB research” and we will take it from there. Come be a part of helping the thousands of other individuals with this condition.
Sincerely,
The Stanford biodesign fellows
Mike Carchia, MD
Véronique Peiffer, PhD
Craig Stauffer, MD
Rich Timm, MS
Support for Children Learning to Cath
Dear Trudy,
I stumbled upon your site in my search for information about neurogenic bladders. Perhaps you or the broader bladder community can help me. I am curious if there are any other moms (or dads/families) out there that can offer advice, guidance, direction, maybe overall support for this mom in flux. My 6 year old daughter was born with a tethered spinal cord which has been corrected (twice) and in connection a neurogenic bladder. She is 90% potty trained. She is able to go during the day but cannot stay dry at night. Given her age (“pull ups” aren’t “cool”) at 6 the reality of cathing is entering our lives. Bottom line with level 5 reflex and the bladder condition cathing will definitely be in her future. Mostly likely 2-3 times a day so we know it’s actually emptied. She is NOT a fan of it nor does she really understand. Doctors are recommending a “Stoma” (aka port through her belly button). They say it’s much easier to access, cleaner and convenient. Overall an “easier” way to go. It can be reversed and she will still be able to go during the day. I don’t want to make a decision based on it being “easy” though i’m sure for one that has to cath convenience is a factor. My question to this community is does anyone have it? Do you like it? How has it bettered your daily life vs. cathing?
Dear Friend,
Thank you for the question. I am not a doctor so I would not be the one to offer medical advice but there are organizations that might be able to offer advice. Organizations we endorse are found on the blog resource tab. In the book Beyond Embarrassment, there are many more resources.
You might try this one first. Underactive Bladder Foundation http://www.underactivebladder.org/
I have personally met the founder and he is an honest good man. He would be a good to start with.
I hope all goes well, Trudy
Dear Trudy,
I am looking for an online support group for kids who have neurogenic bladder and have to self cath every day. Can you help?
Thanks,
Dear Friend,
I am not sure where you can find support groups for kids. Perhaps some information from the resource page on the blog and book, as well, will help.
Kids love to hang out and just be around other kids. Perhaps some would be too shy about discussing toileting with others.
I know from working in a school and going to the nurses room to cath myself there are several students who do the same thing every year. These kids go to the restroom and take care of business so they can go back to the halls and enjoy their friends. They consider it a quick in and out so they can get back to life.
If you feel like you are the one that needs a support group (I totally get that feeling, because as parents so many crazy things thrown at us) please call me. Email and I will send you my number. I know you’re afraid for your child and it is hard. Please try to see this through your child’s eyes. He will forever cath so this is normal for him. No sympathy needed. He will get on with it and live a good life, I am sure. Not long ago I watched a great documentary from Net Flex. Called When I Walk, It was great and I encourage you to watch it. It was about a young man going through life losing everything,walking, all of it, because he had Multiple Sclerosis. His mother gave him no sympathy. She was his cheerleader. She tells him, “You have one life, go out there and live it, think of all that have to live in slums! You do not live in a slum!” Please write and let me know what you think.
I hope this helps, Trudy
Are you Searching? Beyond Embarrassment can help!
Dear Trudy,
Hello all. I am a XX year old woman recently diagnosed with Neurogenic Bladder. I have a long history of UTI’s and urine retention which I chose to ignore for way to long. So now I am left with a bladder that does not contract at all. I have no neurological issues, feel healthy otherwise. But am told I need to self cath for life. I am looking for some inspiration from some women that have the same problem. The day to day is killing me emotionally. Any positive input would be great as I am new to this!
I assume you self cath….for how long have you been doing this? Fortunately I have been infection free for a while. Beside the normal bacteria in my urine from the self cathing. All 3 Dr’s I have seen said that is normal and as long as I have no symptoms of infection I am good to go. So fingers crossed that it continues this way. I want to lead a normal life again, although it is now a new normal.
As far as the antidepressants, I really just started them so I have a feeling it will be a while before I am off them. I was never depressed a day in my life. The actual anxiety is what kills me. My ultimate wish is to be this strong woman that prevails and continues a normal existence. But I know it will take time.
I am sure this is all in your book which I purchased on Amazon yesterday. But just looking for the inspiration….so for that I thank you! Just your responding to me is huge!
Dear Friend,
You are exactly who I write the book for. I wrote it for me too. We women who have questions and are searching. I hope you will find answers. When I was first diagnosed my burning question was how did this happen to my body?? You will find all of the causes that we could find. When you see all the causes you must understand that you are not alone, unfortunately you have a condition that many choose not to talk about.
Let’s start a conversation.
The depression will get better for you I hope, it did for me. I have a whole depression chapter in my book. It is a grieving you need to do. You have lost something and you are feeling the loss. Someday I hope you will wake up and feel like it is your new normal. Please seek help. Being alone with your despair is not good. Share with your doctor and someone close to you.
It does not make the bladder infection pain go away or the inconvenience any easier, I know. Greif is hard,
“Watch your way then, as a cautious traveler; and don’t be gazing at that mountain or river in the distance, and saying ‘How shall I ever get over them?’ but keep to the present little inch that is before you, and accomplish that in the little moment that belongs to it. The mountain and the river can only be passed in the same way; and, when you come to them, you will come to the light and strength that belong to them. ” – M.A. Kelty
“The world breaks everyone, then some become strong at the broken places.” – Ernest Hemingway
Healing Path Quotes
Let me tell you what I started doing. My kidneys are not doing so well because of my back to back infections. I experienced depression, as well, that was heard to shake, not long ago. So on Sunday evening I started serving food at the local homeless shelter. I am not kidding this is better than anything for my depression. This simple volunteer job has helped me with feeling appreciation for all that I have, and helps me to take my mind off my body.
I hope you will find a solution for yourself and find what works for you. Most important is, do not give up.
Trudy
Free eBooks of Beyond Embarrassment through Story Cartel
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Beyond Embarrassment is completely free for a short time, but in return you support us by leaving your honest review, whether good or bad, of our book you downloaded from the website. Your reviews help us market our book and gives us valuable feedback to improve our writing.
Reviews can be left of Beyond Embarrassment on:
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•Anywhere you buy your books
Now go to storycartel.com and get out book for free!!
Third Stage Wake-Up Call: KIDNEY Health
Just as this blog, TrudyTriumph.com has evolved and progressed over the past few years, so have I. I started the blog to unload thoughts regarding the fear and anxiety I experienced as a urological patient with neurogenic bladder and bowel. As my body continues to morph, I count on you the reader to be in the wings; as I cheer for you, you can cheer for me (I hope). Life is never stagnant and as we exist, our form is always adapting and changing. It’s a law of physics! As my body changes, I need to constantly remind myself that my soul and attitude are primary to my contentment. Aging is an indication of our bodies wearing out. I just want to take the process a bit slow.
Speech by Trudy Triumph at CURE UAB Symposium, Denver CO
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 am also a patient. 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
Beyond Embarrassment: The Launch
I want so share the words I said at the launch. They were spoken with a lot of emotion.
So much of life is in the smallness of moments…but harder to mark.
And even harder to remember….Tonight we are enjoying the grand celebration to mark the completion of a book, a book that took far too much of my time.
The deeper the difficulty fulfilling the dream, the brighter the outcome of the fulfillment. The sweeter the celebration.
I feel honored that you are here for our celebration.
Allow me to offer you some background on how this book actually came about.
Try to think back to a time when you faced a life changing
Situation that you wanted to run from.
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 and embarrassed.
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 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.
The book started then too.
Here we are 4 years later the book was born, hard labor and a collaboration that happened, beyond my wildest dreams.
When I imagine the reaction of my friends and family to this book and its topic, I feel a bit queasy because, now they will have a peek into my very private life.
Part of me does not exactly want to be remembered in connection with a toilet, yet I see toileting dysfunction as a last frontier of topics that need to have mature acceptance and an active audience.
Here I am talking to you about bladder and bowel problems. This was once an unspeakable topic for me. I knew that good girls did not discuss such topics. Now you can see the deep crevice in my mind, I needed to cross.
And yes I not only crossed it I threw my paddle away!!
We finally have a book that is by a patient, for a patient. Now the world will see the other side of the story.
No I am not Crazy, I have a Bladder Infection
I realize lately I have been complaining a lot about my wellbeing. I apologize for thatPhoto #4, but since I feel rotten and this is my blog, you get to ride along. Personally, kidney- bladder infections are the pits. I have been letting my family practice doctor handle my chronic bladder infections these days; perhaps it is not working out so well.
Last Wednesday I felt an infection start. My urine smelled like ammonia; I knew I was in trouble. The doctor told me to “make sure I needed antibiotics”, so I waited until my urine was cloudy and my bladder and body was wracked with so much pain I could barely stand it. I went to the Saturday clinic, thinking that I could drop off a urine sample and then get some antibiotics. But, no, this is where my story gets started . . . .
Beauty from Adversity The Book Beyond Embarrassment
I collect sea glass —
pieces of clear and colored glass that were, at some point, thrown into the ocean, broken, and are now polished and made beautiful from years of being tossed in the waves and scoured on the sand. The excitement is in the hunt as I walk along the beach, enjoying the water and waves. Imagine: what was once garbage has become a treasure beyond measure.
On my birthday one year, my adult daughters whisked me off to an island near our home to look for sea glass
As I walked on the beach with my daughters that day, I glanced down. Right between my toes sat a cobalt blue pebble.
If a bottle floats on the sea and never encounters a storm or smashes into some other debris, it may come to rest on the sand and eventually be buried forever. But if it hits rough seas and crashes on the rocks, it will break. The resultant fragments will be tossed about and eventually burnished into the treasured pieces of sea glass that I collect.
Are not our setbacks a bit like sea glass?
As we encounter adversity, we are forced to adapt and grow. I encourage you to find what works for you — everyone is different and lives with his or her own unique circumstances I have shared my story with you from the first symptoms to diagnosis, from early strategies to the routines and processes that have helped me live with my new normal. My hope is that reading about my journey may help you discover your own path. As you travel through rough patches, may you be encouraged by the knowledge that others share your struggles and are living their lives in the best way possible.
Our Kirkus Review: THEY LIKED IT . . .
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Dear Readers, I am so grateful to be connected to you in this shared journey of life. Our book, ...
Kirkus Review, They liked it!!
TITLE INFORMATION KIRKUS PICTURE
BEYOND EMBARRASSMENT
Reclaiming Your Life with Neurogenic Bladder and Bowel
JoAnne Lake and Julia Parker
Triumph Media Press (241 pp.)
$16.95 paperback
ISBN: 978-0-99-643054-8; December 1, 2015
BOOK REVIEW
Lake’s debut offers a candid memoir of her experience with neurogenic bladder and a wealth of practical advice about coping with its daily complications.
Five million Americans suffer from neurogenic bladder, which has symptoms and stigmas similar to incontinence. It occurs when nerves between the brain and bladder are damaged, often due to spinal injury or prolonged vaginal delivery of a baby. Lake, a Seattle-based special needs educator, had several strikes against her, including heavy lifting during her youth on a California farm, a difficult first labor, a hysterectomy that included removal of her cervix, and back surgery
on a herniated disk. By age 55, her pain was intense enough to require a urologist’s attention. It turned out that urine retention had stretched her bladder and left her prone to frequent infections, so Lake now had to use an intermittent catheter for every bathroom visit.
Who takes care of the Medical Frequent Flyers? (AKA – Please don’t give up on me; I’m still here!)
Lately I have been a “Frequent Flyer” – that is, with multiple doctor’s offices. I have been in to visit my urologist, a “doc in a box” emergency care clinic last Saturday, and today, I am heading out to my family practice doctor. WHY?
All because I can’t seem to get these bladder/kidney infections under control.
The pain is distracting, as I know many of you understand. I have had back pain because of my kidney and bladder that seems to take over my body because it makes my whole body hurt.
What I have a hard time comprehending, digesting and determining is to whom do I go when the problem persists? A few months ago I was in the emergency room due to a kidney infection. No kidding, it caught me totally off guard; I thought it was an appendicitis, it hurt so much. Once in the emergency room, I was told to book an appointment with my “doctor”.
I automatically booked one with my urologist. When I got there, however, my doctor was out of the office and the Tech lady asked me, ”Who is treating your kidney infection?” I thought, “ummm, well I thought YOU were,” but perhaps I should have gone to my family practice doctor. I was given some antibiotics and told to take them for a week. I could tell however, just by how my urine smelled after the course of antibiotics was complete, though that I was still in trouble. I dutifully stopped taking them. Sure enough, the pain and cloudy urine showed up several days later, again, now, on a Saturday.
Let’s talk about Holding your Urine
Not long ago I received this comment from the Ask a Question part of the blog.
Dear Trudy.
I’m a 23 years old male who thinks I have neurogenic bladder, yet not diagnosed. Here is my story, about 4 months ago I took shower with cold water and the next day was like a hell, I went to toilet like 20 times, but nothing happened during the night, I mean I didn’t wake up to urinate. Anyway the following month was up and down, some days were good, some days weren’t.
Two months after that, I made very silly things due to my social phobia. I cannot go toilet in public spaces, actually it is very hard for me to go toilet except, my house. During those days I had to travel a lot, and I had to use public toilets, but I couldn’t. I held my urine like 4-5 hours for first day, later 2-3 hours and for 1 week all this time I was holding my urine. When I got back home, after all this incidents, I felt weird on my bladder area and urine flow. My urine was not like how it used to be and sensation of urge to urinate has decreased. I went to doctor and he tested me with a urine flow meter and said yes there is a problem.
I don’t think it is a bladder problem. I think it is neurologic bladder, cause sensation is disappeared now. I am able to go when I got the toilet, but in morning I can’t feel urge to go to toilet. I start to urinate after 5-8 seconds. I hope you can give some idea about what I have and how I am going to manage it.
Sorry for my English, I’m not from UK or US.
Best Wishes, Utku
Dear Utku,
For years had symptoms of Neurogenic Bladder not understanding what that was.. But a turning point for me was when I got very sick with bladder problems. Neurogenic bladder is a bladder problem.
Limericks from an 18 Year Prostate Cancer Survivor Guest Author Jim Yount
WHEN I COULD NO LONGER PEE PAST MY TOES
MY DOC PUSHED A TUBE UP MY HOSE
I KNEW HIS INTENT
BUT I KNEW WHERE IT WENT
WHEN IT’S TIP CAME OUT MY NOSE
Do I have a treat for you. Finally guys it is your turn. Because of google analytics I know that most of my readership is men so perhaps you are reading this and you are incontinent because of prostate cancer. Please enjoy a guest blogger, Jim Yount.
Are you interested in being a guest blogger? How about joining our circle of friends?
Author Interview, Beyond Embarrassment, reclaiming your life with neurogenic bladder and bowel, Part 2
Q. Do you have a mentor for writing publishing and speaking, and if so, how did you get that mentor?
A. I would have made so many mistakes without my mentors in the various steps with this book. My editors and book coaches have mentored me. Before I made a decision to find a publisher I joined the Palm Springs Writer’s Guild and I was paired with an author of multiple books, Jim Misko. He offered invaluable advice to keep me away from scammers in the publishing world. I also have a public speaking mentor for Toastmasters, Debbie O’Brian.
……………………………………….
Q. What do you wish you knew before you started?
A. I wish I knew how expensive it is to get a book published.
……………………………………………….
Q.How do you balance writing and home life and a social life?
A. I think being a writer is a different breed in itself. I am lucky because my family is patient with my sneaking off by myself to write. I know I am a thinker and I like to analyze things. I also like to carry a notepad around so when I think of things I can remember them by writing them down. Social life is not overly important to me. I enjoy my friends and family but I also like to write. I try to give each quality time.
Industry ‘must do more’ to Improve Urinary Catheters
I saw this article on BBC News and need to pass it on to you. Please read it. Industry 'must do...
Awards for Beyond Embarrassment
