Trudy Triumph's Neurogenic Bladder Blog

Automatic Flush and a Neurogenic Bladder

I have flown a couple times this month and I have a new public enemy number one.  The airport toilet flush system has caught me off guard.  The trigger for the flush is set off by the motion of my hand, inside the toilet bowl, while I cath.  When this happens I get an unhealthy dose of toilet water spray, not good for me when I am trying to stay as clean as possible down south.  I will write a note for the airport suggestion box.

To Whom it may Concern,

My life was jeopardized today not by a malfunctioning airplane , bomb or unruly child but by a spray that could just as easily end my life.  Because I self cath to urinate I set off the instant flushing motion .  I am sure women using a tampon do the same thing.  Not sure who set the automatic trigger there, but it is not working for me.

 The sign in the stall telling me the recycled water is used for the flush system certainly does not tempt me to go near the water, but does that mean then that  I am in further danger when I get an unwanted shower?

Please change the location of the motion detector. 

Thank you, Trudy Triumph

 

Neurogenic Bladder in the Movies

When I was diagnosed with a neurogenic bladder I was so desperate for information that I looked up movies with quadriplegics and those having paraplegia in the lead roles.  My thought was that people with that disability usually have bowel and bladder paralysis as well.  I was so hungry for insight.  I did not know a single person with a neurogenic bladder or bowel that I could strike up a conversation with.  I could not ask my urologist out for lunch and girls talk.  When I first googled neurogenic bladder I had so many questions besides the definitions and terms.  The articles seemed so impersonal.  I just wanted to talk to a friend, but to be honest I was too embarrassed to do so.    I had questions like;

1.  What would happen to my friendships if anyone found out?

2.  Can I keep this part of my life private?

3.  Is there more to me than just this?

4.  Will I turn others off?

5.  Will I make it to the toilet on time?

A lot of time movies have themes and a point to make so started my movie quest.  I began watching movies with the star dealing with paralysis.  As I watched for a part of the story line that touched, personal matters.

Some movie thoughts;

1My Left Foot is a  movie that  made me cry.  The love and compassion by the leads family was profound.   In my opinion it was the most entertaining of the lot.  It just gave me a warm feeling.   It is so good that I put it up with, my favorite movies, Sound of Music and Grand Torino.

2.  Passion Fish is so good because it just has practical advice.  The quad got her man even with the personal challenges.  It was so cool that the toilet issues were discussed; practical advice was given like eating and toileting regularly.   

3.  I thought Avatar threw the disabled under the bus.  Don't bother if you are looking for support in this one!  It is kind of like Darth Vator in Star Wars III.  A new body is made out of a broken one.  Not much help for me.

4.  Magic at Belle Island was a dear story.  Not many insights but I liked it.

5.  The Other Side of the Mountain 2 was a good movie.  It touched on many issues.

Where I am going with all of this is the medical articles are good for the definitions and the physical.  That is all interesting.  But there is more to discovering a disability than that.  There is an innate need and concern that has nothing to do with the head knowledge part.  There is the connection with others and the need of acceptance.  It is the part that concerns who we are and how we feel and relate to others, our emotions. Do you love me and can I love you?  

Movies help with understanding the part of a person that longs to connect and be connectable.

I invite you to add to this list.  I will also report if I find good movies.  Let's keep eachother informed!

Top 20 Disability, Paraplegic at the Movies

Does Obama Care? Neurogenic Bladder

 In light of the supreme court’s decision, I thought I would throw out my two cents. There has been a lot of emphasis, in the news regarding people with pre-existing medical conditions. I fall into that category with my neurogenic  bladder and bowel. I am relieved that I will never be denied health insurance through no fault of my own.

Yet I hear whisperings and grumblings;

1. In 2014, all Medical professionals will need to have electronic charts. Our medical information will be easy to access and the people taking care of us will have someone looking over their shoulder. How easy will it be for others to access my very personal medical history? The juicy details once my chart is hacked!

2. In 2014, there will be a prescribed cookie cutter protocol for medical conditions. So that means when I go in for a bladder infection there will be a procedure already in place for me. It will not be individually based. There will be a consequence to the physician, if the protocol is not followed. A huge fine will incur, if he/she deviates. What blows my mind is if the doctor repeats the infraction, jail time is the threatened consequence.

3. How long will we need to wait for needed medical care? Will the medically fragile need to take a number and get in line? How long will that line be? Sure we will have insurance, but will we get the needed care or be written off and be given the option to be kept comfortable?

Even before the issue of Obama Care, I let my mind wander to my medical needs as I age. We are all so unique and how we are treated is so complex. As I age, will I be treated different than a younger person? We all know the answer to that. The knowledge of the answer gives me a chill. I am a bit venerable and high risk. What will happen after I turn seventy? Will the new "JUST KEEP HEALTHY" theme the proponents are singing, take care of me, with my existing condition?

I know for a fact that now, I will get that insurance, but how complete will my future healthcare be?

The Lesson of Sea Glass and a Neurogenic Bladder

 

Last Saturday was my birthday.   My daughters whisked me off to an island near our home for a day of looking for sea glass and wine tasting.   Throughout the day I marveled at how God could work in my life.  I actually made it  through  bringing up two wildly outrageous and difficult daughters, and then have lived long enough to see the other side.    They designed such a perfect day.

Sea glass is a treasure to me; it is such an interesting hobby.    I have several old glass milk bottles and add my little bits as I can.   It is in my opinion, the ultimate repurpose.  What was once garbage, thirty years plus ago has become a treasure beyond measure.   There is a sea glass museum in California on Highway 1 near Fort Bragg, books on the topic, and nutty collectors like me that go nuts over a little pea shaped pieces of glass.   If an orange or grey piece is found then just faint, I’ve hit the mother lode. 

When I developed my symptoms due to my neurogenic bladder, from God knows what, later in life, I felt so broken.  All of a sudden I have this huge obstacle in my life that quite frankly I do not discuss openly.   It is like a plate shattering on the floor and telling the kids, “Stay away, get your shoes on and bring me the broom.  This needs to be swept up and thrown away."

Yet isn't a situational set back a bit like sea glass?  Like a cobalt blue medicine bottle – thought it was all that and more before it was used and thrown in the trash heap.  But guess what I found?   Between my toes there sat a cobalt blue pebble.  Happy Birthday, thank you.  Made my day!

Sounds a bit like that ole, beauty out of ashes thing, isn't life just like that! Just when you think you have it figured out…..

Go Girl

Have you ever heard of a woman's product called Go Girl?  I want to tell you about it,  but let me share this with you ….

When I told my mother,  I had a neurogenic bladder and needed a catheter to pee, she was so upset  she cried.   To be honest by the time I gave her my newest medical information, I was so used to the idea and so very happy, that I was comfortable and pain free, it was hard to wrap my mind around her tears.  It is so very simple to self cath that I was wondering how I could have made my news a little easier for her to hear.  Another time, I had to go to the hospital for a procedure and I needed to tell the nurse, that I kind of knew (because our boys played sports together) that I had a neurogenic  badder.  She got all emotional and teary as well. I was not sure how to handle either of these situations. Now I have a great idea for when I have to break the news to some unsuspecting person….. Just wait, this is good….

I was out shopping for my Bunko gifts last Sunday, after church, at a luggage store.   I came across an interesting product.  It is a pink, soft, rubbery, kitchen shaped funnel, that is collapsed,( so you  could fit it between your legs.)  This apparatus is for women to pee in,  so that they can direct the flow of their pee.  Say you are in a boat, and you have to pee and the water is just too cold for a swim or perhaps you are at a rock concert and you do not want to sit on a strange dirty toilet seat.   This product is for women not lucky enough to have an insurance company pay for the real deal, female urinary catheters, like me.  The Go Girl is the best second choice.

 Now this is my point.  If you feel like my life is so bad because I need to cath to pee you need to realize that there are amazing benefits as well. I could carry around these GO GIRL devises and let these Na Sayers experience the freedom I experience on a daily basis.

The Benefits of using a woman's urinal catheter;

1.  I can easily stand to pee.

2.  I do not need to sit in a strange porta potty.

3.  Since I have bladder retention I can go quite a while before I need to pee.  I am kind of like a camel.  How convenient!

4.  There is some dryness women my age get, yet when I cath I get a little lubrication which is a good thing.

So I can have some samples and say, "If you want to experience the wonderful freedom of standing to pee, not needing to squat, go out and get a GO GIRL.”   I should buy some to give as gifts.  I don't want to be the only lucky girl on the block.  Perhaps if they experienced the freedom I have, they will not cry.

Being happy does not mean you are perfect.  It just means you desire to look beyond imperfections.

The product, Go Girl

 

 

Hallelujah Help

When I was first diagnosed with Neurogenic bladder I was sent to a urologist.  I hurried into his office because I was sick and I  blood and leucecytes in my urine.  I needed to act quickly and got any doctor I could get.  To be honest I liked the first urologist I had.  He was respectful and was kind when he had to give me the news about what my needing to self cath myself to stay healthy.   Eventually our relationship ended.  Once again I got another bladder infection and he prescribed an antibiotic that I was not willing to take.  The antibiotic is from the fluoroquinolones family.  In small instances, it causes severe muscle and joint problems. I really felt like my body had enough problems and I was not willing to risk the chance of having painful cartridge issues along with all the other things going on. 

It was lucky for me that the doctor got cocky about my not willing to take the prescribed antibiotic because the situation pushed me out the door into the office of the very competent doctor that I have now.  She was referred to me by a wonderful, trusted urologist friend.  I know that it is always a good idea to get a referral from a trusted member of the medical profession.  I really should have done it sooner.  Acting on my friend’s advice, I gave her a call and quickly I booked an appointment for the next week. 

My first step into that office I could feel the difference.  The feel of the office was the difference between, or the polar opposites, of the celebrity spa at Baden Baden and your back yard kiddy pool. I just felt good walking in the door.  It was decorated beautifully and I found out that my many needs were met.  My new doctor was willing to work with me on antibiotics. She did not feel offended at all.  She patiently answered questions.  I liked her from the get go.

When I became her patient, she did also not want to settle for not knowing the cause of my flaccid bladder. She ordered more tests one of which was an urodynamic test. I came in two days later for the test.  For the test, monitors were placed in various locations to read how my muscles reacted when I peeded. I sat on the edge of a chair that lifted up high so my, you know what, was eye level with the woman doing the test.  A tube was inserted into my urethra and water was pumped into my bladder until it felt full, there was a lot of water because my bladder is so stretched.  After I felt full I was able to void.   At the end I was cathed so the amount of water that was left in my bladder was also measured.   Afterwards, I then went in to talk to her so she could give me the results.

From the results, the doctor could see I had perfectly working parts.  I just did not have the connection between the two. To her it looked like I had a spinal cord injury.  She told me that she did not think I had multiple Scleroses. I wanted to kiss and hug her because it was the first time since last April that I did not have MS hanging over my head.  She also told me that there is surgical procedure called Interstem Therapy that I could be a good candidate for. ( I want to write about this in another blog.  I have mixed feelings about this surgery and I need to investigate it further.) 

The doctor also addressed my always ongoing concern of bladder infections.  She has a very safe and convenient system to handle her patients that are susceptible to frequent bladder infections. She gave me a kit with urine collection cups, lab slips, prescription if things go south.

 I want to report that the system is very effective, just yesterday I sent a specimen in with my husband because I am feeling a bit like I have something (my urine has become cloudy.) It is the beginning stages of a bladder infection and if I can hang in there over the weekend I will have a pin point what antibiotic to take. I know that every time I take an antibiotic that leaves me fewer times in the future because I can become immune. I am happy for this system. The former urologist told me to white knuckle infections, he said cloudy, stinky urine was fine that it was part of my condition. I know that another possibility of my condition is bladder cancer. Gee no wonder, with all that going on. I just like being proactive.

After my visit with the doctor I had an appointment with the person in the office that helps the patients interface with the menagerie of types of catheters.  I told her I was interested in changing to Speediacath catheters and she told me that she had a company I could work with that was already approved by my insurance.  To be honest, I felt so pampered by the time I met her.   She was like a concierge at a fine hotel giving me detailed directions and explicit road maps.

More later…

Consider the Woman in the Crowd, Fistula

 The definition of a fistula is the unnatural connection of two aliened organs…..

An example of a type of fistula is a tear that connects a woman’s uterus and bowel……

The story is found in the Bible, somewhere in the chapters of Mark and Luke.

Jesus welcomed the woman's touch and healed her from an affliction that she suffered from for twelve years.  She was smelly with hemorrhages and perhaps the leaking of feces and urine. We know for sure that she was unclean and an outcast because it was considered so brave of her, to have the nerve, to reach out and touch Jesus.

I want to take a break from writing about my American (with all the comforts, cures, latest devices, greatest antibiotics, and medical treatment) neurogenic bladder and bowel issues.    It is time for me to consider my sisters, in developing countries, that suffer from a far more humiliating, painful, form of neurogenic bladder.  This heartbreaking medical condition is somewhat reparable,  depending on the  severity of the injury.  This horrible condition is called FISTULA and it is tragic.

This particular fistula is caused by vaginal force either by a difficult delivery or rape.  It is hardly heard of in our neck of the woods, but in developing countries it is prevalent, especially where it is the custom for young girls to marry.  When girls are too young give birth, their pelvis is not developed. The labor can be prolonged, even days.  The baby often dies and the damage of torn bowel, bladder, vaginal wall and even a broken pelvis can be profound.  The brokenness often goes unrepaired and the girls become outcasts because of the constant smell that is with them for the rest of their lives, due to infection and the leaking of feces and urine.

I have some links that give true accounts of women that were given a second chance. There are many waiting for help.  There is so much pain in this world.  Thank you for taking a moment of your time to consider making a difference.

 

Fistula Foundation

Map of areas effected by Fistula

The definition and face of Fistula

World wide Fistula Fund

Christianity Today Article on Fistula

Seattle Area Contact

 

 

Sometimes the itch is Crazy Hard, HEMORROIDS

I am getting ready to step out this summer for a high school reunion.  I want to go out and buy THE dress and wow the folks with….  I want to strut out and feel proud but first I have to get comfortable.  You see I suffer from hemorrhoids.   Sometimes the itch is crazy hard.

I have a neurogenic bowel and before my diagnosis I did not quite understand why my poop was as hard as rocks.  I could never figure out why it was like that, since I got the exercise and I tried to eat well.  I was always so constipated.  Reminds me of this joke;

Did you hear about the new TV show Constipation?  Sorry it has not come out yet. 

 First there is constipation and  then there was, and still are, hemorrhoids.   Hemorrhoids are sooo bothersome. I am no longer constipated.  Understanding that I have a neurogenic bowel and bladder helps me, because I can now stay on top of things.  I can now keep my hemorroids from getting worse.  My goal is for them to get better of course.

  I know what I need and what to do. 

  • I need to take my stool softener daily. I now take two a day.
  • I eat at regular times.
  • I drink plenty of water.
  • I carry along moist  towelettes.  Sometimes when I wipe to hard, I bleed.
  • Keep myself clean.  This helps with the itching and discomfort.

Before I understood that my constipation was a cronic condition for me,  I worried about taking any sort of medicine. I thought that if I took stool softerers on a regular basis , my body would become dependent on them.  I did not understand that with the neurogenic bowel, my gut just moved slowly. I have become proactive about my constipation. I still live with the years of hard, big bowel movements moving down and tearing my flesh because of the blood vessels became so big in that area.  I know there are over the counter creams and salves I can use, but I have not yet used them.  I am hoping that over time, the hemorroids will shrink down.

 The skinny on Hemorrhoids

  • They are veins in the rectum that swell under pressure such as straining to have a bowel movement.  Like I did when I was so constipated.
  • Waiting too long for a bowel movement.   What could have I done when I was so constipated? I think the kids call this "ground hogging."
  • Sitting on the toilet too long.  Give me a break, do you know how long it takes when someone is constipated?
  • They can develop from diarrhea also.  This surprises me.  I don't really understand that one.

PS, I got the dress!! Hotty Totty!!

More links,

read what the experts say!

 

 

 

 

 

 

The knife, for Sacral Nerve Stimulation

 

                After my urologist performed a Urodynamics test at his office, he said I was the perfect candidate for InterStim Therapy.  This is a pacemaker for your bladder.

How proactive do I want to be? I have never liked knives.   I am still considering it, but it is a very invasive surgery. It does come in two parts.  In the first phase, a test is done to see if the device even works.  A thin wire is inserted next to one of the sacral nerves in your back, which then controls the bladder.  A battery is connected. I would wear the pack for about 10 days to see if it is possible to feel the urgency and frequency to urinate again. The second phase has more hardware and is put into the body: the upper buttock area, I think.  It is a pacemaker with a battery.

I read in one article that 70-80 percent respond positively.  I have read dismal studies, as well.  One study noted, out of 28 devices put in, only 1 worked after 2 years.  Not good.

  1.   I wonder…. If I did this, how long would it last?
  2. I’m scared……Would it bug me to death?
  3. Good thing — I bet it would help with bladder infections.
  4. A little concern……What about infections that the device itself might invoke?

What would you do?

For More Information — Check out this video on YouTube:

 

Additional Resource : 

 Bladder Pacemaker

 

 

 

 

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