Trudy Triumph's Neurogenic Bladder Blog

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

 

 

 

 

Use zip lock baggies, hide the evidence!!!

I made a huge mistake while I was a guest chaperoning at a Japanese high school last summer.  I  should have known better, it was just so darn hot, I was not thinking clearly.   I threw my used catheters away in the restroom trash can.   I left a tattle tale.  Beware, do not make the same mistake!  The used catheters could be mistaken for drug paraphernalia.  Garbage is meant to get rid of. It is not ment be inspected.  To be honest I was stupid.  I have seen enough spy movies to know the garbage is always checked, well in the movies anyway.   I need not  leave tattle tales.  It is so easy to use a zip lock bag and sneak those babies out.

In Japan the kids clean their own schools.  How novel, they even clean the restrooms. Not every country has  schools run by several unions involved in the workings of the school.  Being raised in the states I always imagined a busy person, well custodian, emptying the trash giving the contents no thought.

Well they  found them,  how embarrassing!!

What is worse is that I was not invited back to chaperone this summer.   They told me that when I felt better to please come back.  Am I sick?  Can I get better?  I need, what I need.  These catheters are a part of my healthy life.  Right now I feel great and to be honest I don’t see myself as near deaths door.

Gee, if we were in the states I would feel a discrimination law suit brewing…we are not however.  I will just need to get over it.

There is a lesson to be learned.

GET THOSE ZIP LOCK BAGS AND CARRY OUT YOUR SLIMMY TUBES.

Vaginal Trauma and Neurogenic Bladder

My first birth story is significant because one of the causes of neurogenic bladder is a difficult vaginal delivery. I certainly fall into that category. I had a difficult delivery and I have also had a vaginal hysterectomy.  Ok girls, let's hunker down and I will tell you about one of my most painful yet happiest day of my life.

I delivered a ten pound baby overseas in a military hospital. There were many things that were missed by the doctors there. I had gestational diabetes and only found out days before my child was born. To complicate things my baby was transverse, so after pushing for quite a while, a last ditch effort was made to go in with forceps. She luckily was born without a c section, but I was cut up, due to the forceps.  I lost a great deal of blood.

The bad news is I had no epidural with my extra long pushing stage, but the good news is, like all mothers, I would do it all over again and right away I forgot the ouch..Now back to my story..

I don't remember much after the delivery. I was told they spent a great deal of time stitching me up. Hours later my beautiful child was brought to me and I couldn’t lift my arms to hold her I thought they had given me a powerful drug.  They did not.  I was so weak because of blood loss due to the forceps laceration that  I needed a blood transfusion. The blood transfusion worked like magic. I had my energy back.  I could not only hold my child but I could skip down the hall.   All was wonderful.  I had no ill effects that became evident over the years other that I produced a cute baby that turned into a monster in her teen years, yet turned out in the end to being one of my best friends.  God is indeed good.

Twenty years later I had a vaginal hysterectomy.  This can lead to neurogenic bladder as well.  I am not totally ruling this out this as the culprit.

More later

Camp Easter Seal & NeurogenicBladder-Bowel

When I was in college I worked at a Camp Easter Seal in the Santa Cruz Mountains. I spent a blissful summer by a pool, playing with great kids at Camp Harman. There were three kids that came through that summer with Spinal Bifida. These kids were like any child you would see playing in the park. In the beginning I had a hard time figuring out why in the world they were even participating in an Easter Seal Camp. It was only after seeing their records that I realized that they just had a bit of a complication in their life that caused them to work a little harder to fit in. ….. TOILETING….. My problem is like Spinal Bifida.
It is interesting how life turns out. Little did I know that these kids would some day be my kindred spirits and in my later years,I would have total knowledge of their daily challenges. There is a secret they kept from their friends at school. There is a secret I keep too.
People affected with neurogenic bladder and bowel keep that part secret, not necessarily because we want to, but because we have to. Who wants that kind of information anyway! In order to fit in, we need to be deliberate, organized and really plan our lives, to insure our comfort and safety.

What do people with neurogenic bowel and bladder think about?

1. Keeping clean (Problems at work are infrequent. I have an agreement with the school nurse that a shower is available if I run into problems. I have never needed to use the shower at work but there if a comfort knowing that it is there, if I need it.) Showers are also important daily because of cathing and we need to be clean down south to prevent UTI’s.
2. Daily stool softener.
3. Eat and Toilet at regular times(Because of my job at a school, I even have bells to give me a routine for the day it all works great)

Have a good weekend, More later…

Genomics, Cracking the Code

Just before Easter, on 4-2-12, I submitted my “application” to be a part of a genetic test, because I want to see how the results of the test could possibly impact my life . . . as the future unrolls. I don’t want to seem dismal but I do have a serious condition, and no definitive answer as to why I have a neurogenic bladder, one of which could be a genetic disposition.
I think the one result I am most afraid to discover, has nothing to do with my neurogenic bladder. What if the results of genetic testing show Alzheimer’s? I am not sure of my future, but I do have one parent who suffered with late onset Alzheimer’s and one parent who is quite sharp. Part of me would want to know, so I could take care of that bucket list and just get those things done. Perhaps I would be sad.

Just prior to being diagnosed with a neurogenic bladder, I had to wait two weeks for the results of tests to see if I had cancer. I remember feeling angry at first. Then all of a sudden the anger melted and I felt such a peace, like I was in God’s hands and the situation was not mine to worry about; so get over it.

Perhaps news of Alzheimer’s would affect me in the same way. My husband would probably be the worst sort of pest if he knew; my mom and sister: no way. It would be too upsetting for them. I think if I find that out, I would tell a trusted friend and keep it under wraps for a while. I KNOW I would get more serious about exercise and eating better.
When I was diagnosed with a neurogenic bladder I was a horrible eater. I could consume huge amounts of junk food like a blue whale inhaling plankton. I just did not care. I did what I wanted nutritionally, with carefree bliss. There was something about the diagnosis and the implications it held that gave me the wakeup call I needed. All of a sudden I cared. My body no longer behaved perfectly, but all of a sudden I valued it so much more than I ever had in my whole life. I became grateful for my physical attributes. My enhanced appreciation for life and all that I have, came out of my diagnosis. For that I am thankful.

I am a member of a website for people with various medical conditions. People also list other medical issues like multiple sclerosis, accompanying neurogenic bladder. After the results come back I will have a slight clue as to MS, as well. I might be able to get an idea of what is down the road in that area. I suppose if I knew for sure, I could take medications to ward off further symptoms.

My sister is a breast cancer survivor. My daughter is curious about her vulnerability . . .
.
To that as well: genetic testing would help my biological children with their future plans. . . well maybe not. They have been ignoring my good advice for years.

I know all of this is so new that even if I do receive shocking news, I will need to remind myself that there are so very many genetic markers that scientists have no clue about. For all of the known markers, there are so many they know nothing about.
So what if I get a clean slate with my genetics test? There will be other things to pursue. You will have to wait. There are two blood tests I can take. I will write about them in a future blog.

There are so many reasons to find out why. Here I go….. I Will get the results next week…More Later..

Please check these out to learn more:

NOVA video: Cracking Your Genetic Code

http://video.pbs.org/video/2215641935 

We are on the brink of an era of personalized, gene-based medicine. Are we ready for it?

Gene mapping for everyone? Study says not so fast

http://fxn.ws/HhNvmX

Tested to the Hilt

I went to a neurologist, after I was diagnosed with a Neurogenic Bladder.  My neurologist has a differing opinion as to the cause.  He thinks there is a third of a chance I have Multiple Sclerosis.  He did many tests to come to that conclusion.

I had an MRI on my brain, to look for tumors, I suppose, they found nothing.   After that result came in great, I had a MRI on my stomach which again revealed no clue.  I will say that this MRI left me a bit nauseous the next day.  About a month after I had a MRI on my lower back.  My surgery sight could be seen as well as several former herniated disks.  The conclusion the neurologist had after these tests is that my problem is not due to my back injury.   In July I had the final test a, spinal tap.  This test would rule out the possibility of cancer.  It took a while to get my results but I did get good news, no cancer. The first Urologist I went to did not suggest that I go to a neurologist.  It was a friend of mine that is a urologist in Everett, that suggested I try to explore WHY. Good Idea!  Thank you for the peace of mind dear friend and thorough Dr Neurologist. .  I so appreciate the opportunity to have these tests. 

The doctor’s verdict was that there was a third of a chance I had Multiple Sclerosis.   He said that a third of the people that have MS suffer from a neurogenic bladder.  He wanted to see me in six months and I was let go from his care. . I asked him, “What now?”  His parting comment to me was, “to be healthy.”  Ok, I thought, I better get serious about this, so the next day I booked an appointment with a naturopathic doctor

I just want to add a little bragging point about this.  With all my tests and doctors’ visits I only missed one half day at the high school I worked at.  I was amazed at the late hours the hospital was open and also because I got out so early it could totally work.  When I was with the kids and workmates, my life seemed normal, during that crazy time.  I really appreciated my hospital for having those late hours so I did not have to miss work.  It is because of my great job that I have such good insurance.

More later…..

 

The discovery of my Neurogenic Bladder

I am not sure how my back injury occurred.  I grew up on a farm and we rolled large bales of hay.  In the beginning, I remember my back going out in high school several times, years later in 1998 my back went out big time.  When it occurred, it was different in that I experienced more pain and my legs buckled beneath me.  For a week, I just had to crawl to get around and I did not have the ability to get to the toilet on time.  I know this sounds dramatic but for that week, I lost all of my normal feeling for the urge to urinate.  When I did feel the urge, I was unable to reach the toilet in time.  I needed help with a bed pan to relieve myself.  After a week or so, I was up and running again.  My biggest lingering symptom was a numb leg and foot, for which I had back surgery in 2000; I needed it to fend off a drop foot, a condition of paralysis that would prevent me from lifting my foot op as I walked.  Had I been a medical expert, I would have realized another symptom that I was suffering from, as I took three-mile walks with my neighbor each day before work, I would need to take extra time for a shower because by the end of the walk I would lose my bowels, some of the time.   I understand better now why this occurred.  My stool built up in my colon so long, that the movement of my walking helped  things along.  Because I took a walk five times a week, my body just knew when to expel fesses.   I tried all sorts of things, but in the end, adult diapers did the trick.  I also had a problem with constipation, despite the fact that I ate roughage and got exercise.  My stools were very hard, almost like rocks.  I did finally mention my constipation and the problem of my bowels emptying during my walks, to my doctor, and he told me rightly, that it was probably due to my back.  The doctor gave me no advice, so I took the problem no further.  I did not know what else I could do. Besides the doctor, whom else could I ask?  Even my husband was no use because he has little patience for this unspeakable topic.

About this time, I had a pain on the side of my stomach that did not go away.   I went to, two doctors and both agreed I had Irritable Bowel Syndrome, a condition that an antidepressant was prescribed, to calm my nerves.  I did try the antidepressant for a while, but stopped because I felt like I was in a tunnel also did not like it because it foiled the fun I had with my husband.  I know now that the pain I experienced was because of the pressure on by bladder, I did not experience the normal feeling to urinate unless my bladder became very overly full.  The pain I felt was my bladder stretching.  For the next eleven years I had chronic stomach pain.  I just went with in life thinking that was just how my life was.  My New Year’s resolution in 2011 was to change doctors and find out what the deal was, because my stomach really hurt.  This was not an easy decision since my doctor’s wife was my dear friend.  All went well with the change, my caring doctor and his wife supported me.  My daughter suggested her doctor, who I still see, and thank every time I see her.

In April of 2011, I went in for a routine medical checkup and I received a clean bill of health.  My phycian had me come back for another appointment, the next week, to check out the stomach pain, after a routine urinalysis blood and leukocytes were abundant in my urine.  Because of the blood and leukocytes in my urine, I went to an urologist for more testing.  Things started rolling after that, I had a cat scan, ultrasound, and the doctor called me into his office to tell me the diagnosis    He said that my bladder was twice the size as a normal bladder and that it was not emptying normally.  The diagnosis is, Neutrogenic Bladder.  Ta da

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