Trudy Triumph's Neurogenic Bladder Blog

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

Am I sexy?

None of my four children admits to reading this blog so I am probably safe, but for this next writing there need to be a disclaimer…………………..

So…………………….If you are one of my four children you might want to stop reading this post now.

YOU HAVE BEEN WARNED!!

                              

To be honest I have had a bit of a problem feeling sexy since I have started cathing.  It is not like being on your period and using a tampon for 5 days.  It is forever, every day. I have a lot of action down there, if you know what I mean. The action is not recreational but there is defiantly something going on.

Because of my neurogenic bladder I get bladder infections. So much of the medical advice says that if you get frequent bladder infections you should pee after intercourse. I suppose to flush out the bacteria. Well what if you have to catheterize yourself every time you pee? How does that help? Does sex make things worse?  It is a bit of a mind game that goes on in MY MIND.  I am a happily married woman.  How do I come to terms with all of this?

I have to admit that after I was diagnosed with a neurogenic bladder I was afraid to have sex. It took all I had to put a smile on my face and tell myself, "You are sexy!"  Because I was new to using a catheter I was sore down south anyway, and the last thing I wanted was any sort of action. During a time that was very traumatic, I was losing grip on the picture I once had of myself, which was a healthy, active, sexy wife.

When my husband got that sparkle in his eye, I wanted to cry.   I felt broken and already used.  Perhaps I felt raped already by these stupid catheters and I did not really want to traumatize myself further.

I love my husband and he loves me.  Instead of being pouty because of the rejection he patiently , and I cannot emphasize enough, patiently, pressed on.  I was so afraid of getting sicker.  I felt like I had already given at the office, so leave me alone.  I was afraid of getting a bladder infection from just having sex.   It was the worst sort of mind game.

Now listen to this girls: this is the best part…Did the bells and whistles go off when we did?? Yes mam, **thank you mam**, they did**.   My husband was patient and together we worked through my fearful attitude.

I use a hormone that I put in my vagina every night.  Because I am post-menaposal, this helps make the skin labia area thicker and healthier.  It wards off infection and also helps with my arousal. 

Just remember; where there is a will, there is a way.  My marriage is important to me.  It is worth pushing through to the other side.

I hope this post helps someone. It has not been easy to write.

 Love, Trudy

check this out…it my help you…

Sexual Dysfunction with spinal injury and or Neurogenic Bladder  3/22/12

http://ptjournal.apta.org/content/82/6/601.full

http://findarticles.com/p/articles/mi_m2372/is_3_37/ai_68273919/

 

 

Long Term Care Insurance, Dealing with Prejudice

Any financial advisor worth his or her grain of salt will tell a family with resources to buy long term health insurance as they plan for the future.
The advice my husband and I received regarding long term care insurance was to take care of it before our sixtieth birthday.
For both my husband and I, that advice did not work for us. In the same year well before our sixties, he was diagnosed with a heart ailment and I was diagnosed with a neurogenic bladder.
What a shock to us since we were both looking good, not overweight, and and-eating well. Now all of a sudden we are considered high risk when just the week before we were at our prime, taming the world with energy and vitality.
Well, guess what? We still are, we just look TERRIBLE on paper. We are not allowed to send videos of our selves, or our job reviews. We are judged by an ailment. I know that now, for the first time I can understand the feeling of being labeled without a chance to explain. Not the color of my skin, just the condition of my bladder.
As our population gets older how many of us will have the luxury of knowing we won’t be subjected to our children’s loud music and crazy hours? I am just kidding about this of course. All of us, deep in our hearts want to think that our children will step forward and take care of us in our later years . My grandmother lived with us. I take care of my mother, at times. But to be honest, not all of us have kids. Elder care is expensive. How DO WE PLAN??? I know…kids please forgive all of the times I hit the fan when you spilled juice on the kitchen floor …. in a few years I will need your help. Long term care insurance is out of the question.

Urine Retention, the Balloon inside Me

When I was a kid I loved watching Little House, on the Prairie. There was one episode where Pa slaughtered a pig and the girls were excited about playing with the pig’s bladder because they could blow it up like a ball and kick it. Well our bladders can blow up big as well.
Before I was diagnosed with neurogenic bladder relieving myself was getting complicated. Little did I know that a balloon was getting bigger in me. For years I struggled with this problem not knowing what it was called and getting sicker while my condition worsened. Mostly I had a sharp pain on my right side that honestly could have been anything.
There are different types of neurogenic bladder. One involves leaking urine and the other is urine retention. I have urine retention. I just don’t feel the urge to urinate unless my bladder gets really full. I also am unable to completely empty urine. Blowing up like a balloon along with having a full bladder is painful. My heart goes out to the people with neurogenic bladder that leak. The cool thing is that there is relief for both. Go to a good urologist.
Since I do not have the normal urge to urinate I try to watch the time. I try to cath every 3 hours. In the beginning I did so because I had this hidden hope that my bladder would wake up and respond. My lack of feeling has remained. I do feel so much better as I cath regularly. If I don’t cath I tend to feel sick and get that familiar pain on my right side just above my hip.
Before I was diagnosed with urinary retention, I was able to urinate, but had trouble starting a stream or empty my bladder completely. I tried to urinate because I felt an urgent need to urinate. I had little success when i tried to pee, I felt uncomfortable, especially at night while laying in bed.
Acute urinary retention is a medical emergency requiring prompt action. Chronic urinary retention may not seem life threatening, but it can lead to serious problems and should also receive attention from a doctor. Now that I have my trusty catheters I have a comfortable life.

Some Causes of Urinary Retention in women
Vaginal delivery
Accidents or infections of the brain and spinal column
Multiple Sclerosis
Heavy metal poisoning (I will definitely write about this)
Stroke
Pelvic injury trauma

Welcome to my life!

So I got my marching orders, I had a neurogenic bladder and I needed to cath to pee.
When I got home that first night I was just so hungry for information. The articles I found online about self-catheterization suggested I use a mirror. Ok, I thought, it is worth a try: it did not take me long to realize that one would need to use three hands besides needing more room and perhaps a flashlight between my legs. Twas impossible to fit all that in the toilet bowl. It was quite dark, so I finally gave up that approach and just slowly did it. The urine came out and I peed like a racehorse again. Now that I look back, I cannot help but wonder how many women use a mirror to insert a tampon for the first time? I bet those directions were written by a man!

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