Trudy Triumph's Neurogenic Bladder Blog

Super Bug and Bladder Infection, WATCH WHAT YOU EAT!

Did you know that eight million women are at risk for “difficult to treat bladder infections” due to super bugs caused by the yummy chicken we enjoy for dinner?    Let me explain.   As we eat this meat, we become more resistant to antibiotics that can help us, because the live stock that we are eating,  have been fed antibiotics themselves.    Eighty percent of the different types of  antibiotics, that are prescribed in this country, are being fed to livestock.  I guess this means each time I enjoy a hamburger or BBQ chicken this summer I am eating the antibiotics too.  I have been told by my sister, who has chickens on her farm, that the antibiotics are in the chicken feed she feeds her chickens.

What if we become sick and cannot fight off that raging bacterial infection because our body no longer responds to a particular antibiotic that we have unknowingly consumed?    We just ate it for dinner too many times.  WE ARE IN TROUBLE!   Each time we eat non organic meat , (I wish I could tell you that even one time I have bought organic meat,)we are eating meat that has been pumped with antibiotics.

  I have always wondered if something labeled organic was REALLY organic.  We raised drop calves as on the farm I was raised on.  Now I live in the suburbs.  How does someone that lives in the berbs find that kind of meat? 

This super bug threat is alarming to me because I am prone to bladder infections anyway.  I self cath to pee about 5 times a day and no matter how careful I am,  I can still get a UTI.  So when I get a bladder infection, I could get a super bug bladder infection.  They call them super bugs because that are resistant to any form of antibiotic.  The bacteria have mutated and are just resistant.

The sugar found in cranberries, D-Mannose is a natural alternative to antibiotics when I feel a urinary tract infection coming on.  I drink some with a huge amount of water.  Even when I don't feel a bladder infection coming on,  I have a little each day.  It is said that it works because it keeps the e coli from attaching to the bladder wall. 

I have tried to be careful, but antibiotics are a key part of my daily life with a neurogenic bladder.  In the end, no matter how hard I try, my life depends on fighting an infection here and there.

I will need to be more diligent about eating organic meat.

More Later…

Eating chicken, Possible cause of bladder infection??

The other side.

Dementia, What Did You Say???

September 21 was National Dementia Day.  The color to be worn on that day was purple, to remember those suffering from the affliction.   I could never wear purple since purple is the color of my University’s rival.  I never liked purple anyway.  Clothing aside, dementia is is an affliction that we all come face to face with some day,  with ourselves or people we love.  It is just that many people with a neurogenic bladder, at times, meet the ugly beast sooner that later.

There are so many diseases one can get, such as Multiple Sclerosis, Lyme Decease, HTLV1&2, Parkinson’s, to mention a few, that the symptoms of neurogenic bladder and bowel, are in tandem.    So please forgive me if I tend to sweat if I lose count of the cards after a Canasta game or feel beyond confused with tech terms and systems with this blog.  Maybe there is a little part of me that is wondering how much time I have before the other shoe to drops. Perhaps it already has.

A DNA test I took months ago said that I do not have the over the top marker for Alzheimer's.  This means that I have a normal chance, just like anyone else to forget my way home, even though I have lived in the same house for a very long time.  So far, so good I am able to keep up with the kids at school.  Perhaps they do a lot for helping to keep my synapses clicking along.

I have heard the term brain fog, mentioned in research, on the websites where people compare symptoms, treatments, and concerns, with their medical issues.  Brain fog can be explained by difficulty concentrating, completing tasks, and feeling spacey, confused or lost.  These are issues that I can relate to, (if I have not eaten or gotten enough sleep).  Are they  a precursor to significant dementia?  I am not sure about this part, but I do know that there is a definite correlation between neurological symptoms including dementia  The web sites are; Patients like me and Medify.  I would encourage you to take the time with both of these websites if you want to compare your symptoms with others.

I would be remiss if I did not write something about dementia and the neurogenic bladder because in many ways the two disabilities are very connected.

Stay sharp and more later…

More on Neurogenic Bladder and Dementia

 

 

Bladder pain or Interstitial Cystitis OUCH!!

I always and I mean always look at my urine EVERY time I pee..since I frequently feel bladder pain I do not give it much thought.   BUT if I see cloudy urine I will always take a sample in for testing.  There is a tightness I feel when a bladder infection comes on but sometimes they hit me by suprise. 

Looking at my urine now reminds me of when my husband and I were  stationed in Germany.  The toilets there were so interesting.  I think they were lost on me during my pee freely years, but let me explain.  German toilets had a shelf that caught the ummmmm….. and then with the flush of water,  all was sent down the drain.  It gave the curious mind an real chance to inspect the daily goods.  What I could do with that toilet now!

Bladder pain or interstitial cystitis is something I just live with.  I am not sure why. Sometimes,  even when my urine is clear I feel discomfort.  Perhaps it is just because I know here my bladder is.  I have a heightened sensitivity.  I go on with my day but I am aware of the sensation in my bladder.  I think in the beginning I might have used a catheter too much to pee because I miss took my bladder pain for my lost urge to urinate.   I know my bladder is a hollow, muscular, balloon-shaped organ that stores urine until I ready to pee. My bladder expands until it's full and then signals my brain that it's time to urinate, by communicating through the pelvic nerves. This used to make me want to pee.  Now I just get a major stomach ache if I wait too long. 

 I try to time the intervals of my urination.  It is about every 3 hours.  If I feel discomfort I just try to push through thinking to myself that my bladder could use a healthy stretch now and then.  It is common for people with bladder pain to want to urinate more frequently.

Some causes of bladder pain could be a defect in the protective lining (epithelium) of my bladder or a leak in the epithelium, for example, may allow toxic substances in urine to irritate my bladder wall.  Not all bladder pain is slight.  Some pain is your body telling you something is wrong.

Perhaps my bladder pain could be;

  1. Autoimmune reaction
  2. Heredity
  3. Infection
  4. Allergy.

More later…

 

 

 

Why I like my Doctors

I have three doctors  I see on a regular basis,  that I have come to respect.   I feel so good about their care.  My life is literally in their hands.    Sometimes I do get frustrated, but it is usually because I have a body that does not cooperate with me, not them.  I spend a lot of time reading other blogs and writings of women in dire medical conditions.  I am sometimes very surprised by the care, or I should say the lack of care some receive.  We women need to feel safe and come into an office expecting the respect and best medical care available to us.  Our future  and self-worth are at stake.  When a person has a disability it means that it will not change.  We need to have a positive attitude about our bodies and surround ourselves with positive doctors.  I want to share with you why I like my doctors.  My prayer for you is that you do not settle for substandard care.

My Urologist

     1.  My doctor was referred to me by a friend of mine that is a also a urologist.  I know that she is very respected by her peers.
    2. She has a very cool system for bladder infections.  If I suspect one coming on, she has me take in a urine sample to a lab so we will know what I am fighting.  I try to wait the few days it takes to run the sample before I take an antibiotic, but if I am in too much discomfort I can take something.  I usually do not.  I just go on a water binge. That helps.  This way I am taking the best antibiotic for the problem I have.
    3.  She does not put me through a guilt trip if I do not want to take the prescribed prescription.  She might not agree, but she will totally work with me when I want a pharmacuetical  alternative.  
    4. Her office always gets back to me and will not make me feel foolish for calling.   I can't tell you what this means to me.  I really try not to be a pest, but walking down this road, my fear factor sets in.    I have an inquisitive mind, as well.    I try not to be over the top.   It is just nice to have a doctor and staff that is on my side and willing to kindly answer my questions and help me with my questions and concerns.

My Uroligist is…

Athena Urology Group, Dr. Lora Plaskon

My Neurologist

  1. Talk about thorough.  I am sure in his own mind he has left no stone unturned.  He keeps unpeckable  notes and has always followed through in getting my medical records from way back from procedures and records from other doctors.  I see him every six months.
  2. He does not take flak from me.  He refuses to test me for Lyme disease but I like him anyway. 
  3. He does not chit chat, but he will be late to get to that next patient, to do what need to get done.

My Family Practice Doctor

  1. The record keeper and once a year check in.  I see her infrequently because other than my
    neurogenic bladder I am in good health.  I see my mother’s doctor more than I see her. 
  2.  I see her as such an importent person on my team. All the records go to her.  She will
    manage my care and I have faith she will do a good job.

My TaTa's

Yes I do get a mammogram every year.

I am happy to share the names of my other doctors.  Just e-mail me.

 

Will Obama Care change MY good relationship with these fine doctors?  I hope not!

More later…

Advice from a Chemist

One Saturday I went to a local lecture. I was by myself, and having arrived a little early, I sat up front.   Along came this lively woman, her smile was so radiant and I was glad she sat next to me. I liked her instantly. Her gait was halting so I helped her sit and arrange her purse and cane. I wondered as she struggled to sit down if I would be like her in a few years. I was told by my neurologist that there is a third of a chance I could have Multiple Sclerosis, since I have a neurogenic bladder and bowel.    The people and the hub bub melted away as we began to talk. We just got lost in conversation as two strangers could, in each other’s story.  I do not know why I said then what I said,  because many of my friends and family do not even know about my medical issues,  but to her,  in that room,  I spilled all my beans.   I asked her right out if she had multiple sclerosis and then told her in the same sentence that I could have it as well because I had a neurogenic bladder. 

 Aren’t you glad you weren’t the stranger sitting by me?

Right then and there our eyes locked and she began to tell me her very interesting story.  She was a chemist and she raised horses.   Yes, she did have MS, but that was not all.   Through her illness, she had had been subjected to many medical tests and medications.  In the beginning of her illness, she was given many medications, that as a chemist, she understood the toll they could take on her body,  but she was so afraid of the impending illness she did not care.  In the end, just then and on that day, she felt as if she lost the battle. Now she had cancer in her bones and there was no hope for recovery. 

She cautioned me to always get a second opinion before I took drugs for this and that. She thought that many of her doctors thought little of long term effects the medications had on her body.   Many of her doctors prescribed drugs, not caring about the long term effects and her well being. She suggested that I hire a chemist to go over the prescription.  I know that many doctors rely on the pharmacists who guide them to the favorable substance for an ailment, perhaps without even knowing or understanding the implications.  I also know that many pharmiceutical companies send doctors on lavish trips and the favor of ongoing business is expected. I really do feel that in my case, I need to be aware and advocate for myself. Sometimes that gets me into trouble. I will write on that topic at a later time.

Should I hire a chemist to be in my team?  Why not? 

More later…

Worst Pills

Check this out.

 

High School Reunion and Going Forward with a Neurogenic Bladder

DID I HAVE A GREAT WEEKEND!  I traveled out of state to meet up with a group of people who taught me most of what I know, my classmates.  Many were with me from first grade until graduation from high school.  Together we illegally  would sneek off campus to buy candy, screamed at football games, and gossiped about the tiresome adults in our life.  My first crush was there.  So many memories packed into one room.   They  were my partners in life and in crime.  So many of the "girls " looked the same while the "boys"… well lets just say we were lucky to have name with class pictures attached because there was little resemblance.  There was a remembrance board commemorating the classmates that were no longer with us.  It was somber for me remembering my lost friends and wondering who would be gone next time. 

As I looked around the room I saw happy, yet imperfect bodies. There were people dealing with cancer, obesity, perhaps someone was like me and dealing with a neurogenic bladder.  I saw a few canes, yet  I met wisdom, experience, success, pride, in a life well spent.    Best of all I saw satisfaction.  The veineer of the old days was rubbed off and replaced by something better.  We were all happy to enjoy who we were and who we are and contentedness filled the space.

 Just by being with that group of lovely people made me feel young and happy.  The self absorbed, selfish part of me is gone.  It did not matter because I was theirs and they were mine.  It is a unique experience as we all age.  For all of us it is new every day.   Some of our issues are hidden like mine, but some are so ovious to the world.  We humans all experince this life in stages.  It was just fun to be in a room of people who were in the same stage as me!

More later..

Bladder Cancer and the Neurogenic Bladder

Who???

Smokers

Caucasians

Fifty five and older

Frequent bladder infections

Men more than women

Pink rosy urine 

My bladder frequently hurts.  Usually it is most bothersome during and after a bladder infection.   My bladder pain starts to feel better if I carry a jug of water around and just drink and drink.  When I feel a bladder infection coming on I am afraid to take something for the pain because I want a clear idea of what I have and I don't want to mask my symtoms. But when I do take something, I take a medication called Phenazopyridine.  It turns my pee dark orange and will stain the toilet seat if I am not careful,  but it totally does the job.   It does however make me tired so I can only take it a night.   It is suprising to me how advil does nothing for my bladder pain.   You see I am not a doctor or medical professional.   I should have paid attention in my physiology class as an undergraduate, perhaps then I would even have a remote idea, as to why my body does what it does.  

I do know however that a painful bladder is a symtom of bladder cancer and frequent bladder infections can cause it.   Now before I start sounding like a hypchondriac, you need to know that I do not spend my days thinking about bladder cancer.   It is just something I thought I should write about because it happens.  

More later…

Bladder Infections and a Neurogenic Bladder

Many of the topics I write about are just fun and carefree. It is my life and I try to make it light and give an opportunity for others to peek into my silly life. I have been avoiding this topic because to be honest it makes me sad. I get frustrated because no matter how hard I try or how careful I am, I still seem to get bladder infections. Besides the discomfort they are a reminder that I am frail. It is not how I like to see myself. Forget my Pollyanna posts. Having a bladder infection sucks and they crimp my style. Not only do they hurt but I can feel them all over. My husband told me about an article he read about women becoming crazy because of bladder infections. I wonder if he was trying to hint that I needed an attitude check. Last week I could feel one brewing. My problem is I can’t take too many antibiotics. I try to drink lots of water, ingest d-mannose. I keep myself clean…….but no matter how hard I try, they just sometimes happen!

  I still get really mad when I think about my first urologist. His thought was that having bladder infections are normal for people in my condition. He refused to test my urine, since I cath he thought that there is forign bacteria in my urine, so why bother. After I changed urologists I had three bladder infections in a row. Because she wanted a urine sample, before I took the antibiotics we found out that I had a staph infection. She then had me take a low dose antibiotic for twenty days. That regiment did the trick. I was given relief from that discomfort and distraction. What would have happened if I had the former urologist? First of all he would not have me test a urine sample. I would never had known I was fighting a staph infection. But my question to my former uroligist could have been,  WHAT KIND OF BACTERIA? His idea was to white knuckle the pain and in the meantime blow my kidneys out.

  My last bladder infection brought me to my knees. I am finally giving sacral nerve stimulation, consideration.

  Diary of last bladder infection;

 SATURDAY- Went out with friends. Perhaps I got food poisoning because I threw up that night and had diarrhea the next few days. I was far from home. RODEO FOOD!!

SUNDAY- Felt the tightness and urgency of a bladder infection but did not worry about it because my urine was not cloudy.

MONDAY-Drank water all day.

TUESDAY- Took cloudy urine sample into the lab. They told me the preliminary report would be 24 hours and another day for the final report.

WEDNESDAY-THURSDAY- I patiently waited for the lab results. My urine did not seem cloudy yet I did not feel so great. I flew back home and called my doctor’s office to see if the lab results were in. They were not.

 FRIDAY- I was up early 4:30 am. I needed to wait until 8:00 for the doctor’s office to open. I now have a raging bladder infection with cloudy stinky urine. I needed to bring out the guns. I called the doctor’s office two times to see if they had the test results. They did not even have the preliminary report that I was told would be done in 24 hours.  I called the lab myself and begged them to send the report. (I wanted them to feel my pain so they would hurry up.)I was heading out of town for a romantic ocean get away with my husband. I prayed, God help me I do not feel so romantic with this bladder infection. Finally at twelve noon I was in the drug store waiting for my relief. What a week! Not easy. I wonder if Michelle Obama would have had to wait so long!

NEXT WEEK-Took Bacterium for 7 days, sure hope it does the trick.  I need to go out of town.  I will never leave town again without some emergency antibiotics.

  I am now strongly considering Interstim Therapy.  I feel great now but I am afraid to repeat last week!

 More later..

Watching the Clock with a Neurogenic Bladder

Regular times for eating and toileting are important to me.   Since I have a neurogenic bladder and bowel I do not have the normal ques or signals.  If I do not pay attention to the clock I get into trouble.  My advice for my kindred spirits is to get a job at a school.  I can not believe how helpful the school year is.  I have it made in the shade.  I go to school and between second and third period I slip into the nurses office to use the restroom.  I do not even need to check the clock since I have my own reminder bell.  Then at the same time each day I I have third lunch.  After fifth period I duck into the nurses office again.  This regular eating and toileting keeps me comfortable and out of trouble.

This summer has thrown me for a loop.  I can't count the number of times I have had stomach aches and finally remembered to pee.  I just love to shop.  I can get so preoccupied with the hunt that I just zone out and ignore my warning signs and not make it to the toilet in time.  Then I need to just go home for a shower .  In many ways summertime is supposed to be spontaneous and free.  I just have a body that misbehaves.   It is kind of like caring for a child.  As a young mother often times I ate when I fed the kids and told them to go to the bathroom because it was time.  They needed a regular schedule just as I do now. 

I know of course how to help this quandary, GET AN ALARM CLOCK.

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