Trudy Triumph's Neurogenic Bladder Blog

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!

Enjoying Life and Getting Out

How old would you be if you didn’t know how old you are?

After school I was visiting with my team and we came to the realization that we all had bodies that were misbehaving..We got a good laugh because as we are all about the same age, we were all living the older version of life on the edge.
There is something crazy fun about a Friday afternoon at a High School. The kids are making plans. The staff is giddy with relief and so excited to spring out the door for a busy weekend. What a contrast to what I wanted to do when I first found out that I had a neurogenic bladder and had to use intermittent self catheters just to pee. Everything in me at first wanted to stay home, next to my toilet, and nurse my aches and pains.
Honestly the best thing to do when your body is going SOUTH is to allow your spirit to travel NORTH. Find a delight, take up a hobby, my new one is blogging.

What do you think?

Needing urinary catheters to accompany me on my daily activities I have found some stashing places that keeps me safe in case I run out and forget to bring them along.
1. My or my husbands car glove compartment.
2. Work
3. Kids or friends homes.
4. All of our home restrooms
5. I think all first aid kits should have one, don't you?

My Quest for Health

After the initial diagnosis of Neurogenic Bladder and the testing done to discover exactly why all I really wanted and still do want a healthy body.  WHAT ELSE CAN I DO?  How can I help myself?  I thought a naturopathic doctor could help me get on the right tract so I gave it a try.  She gave me many tips, here are some;

  • Drink lots of water.  Bacteria have a problem holding on to the bladder wall if you drink a lot.  Drinking throughout the day is important and you don’t need to feel thirsty.
  • D-Mannose, a Sugar found in cranberries is good to ingest. It binds its self to E-coli and is a good measure to fight against bladder infections. Beside eating and drinking anything cranberry, I also buy the D-Mannose in powder form at a health food store.
    • Use digestive enzymes.  They help if you need to take an antibiotic and kill of the healthy enzymes needed to digest food.  Probiotics are found in yogurt

 (Probiotics
Probiotics are bacteria that we eat and they’re good for our health. They are found in a number of foods that are readily available in the supermarket, and they taste good. You can support probiotic growth by increasing the amount of cultured dairy products you eat, such as cheeses and yogurt, and the foods that encourage probiotics from these dairy products to multiply even further: spices, tea, red wine, berries, apples and beans.

  • Use bio-identical hormones to the inner vaginal labia.  For postmenopausal women the labia become this and they become more prone to bladder infections.  The hormones help to prevent infection.
  • Exisercise at least four times a week.  Not easy for me!
  • Other health aids she suggested are; Vitamin C, Hydrocortisone, DHEA, Glutamine Powder, and  Berberine plus

        In the morning, I use my bullet blender put in a scoop of veggie protein, yogurt, blueberries, a scoop of D-Mannose, glutamine, a liquid form of b12, and a liquid vitamin mix I get from a mail order place plus a lot of what is listed above.  This mix gets me through a busy morning.

 We only have one body go for it!..More Later…

 

Did you know that people with a full bladder were able to better control and “hold off” making important, or expensive, decisions, leading to better judgement?
My mother always wanted me to be smart. Now I can tell her.

Slimy Tubes & Tricky Situations

 I had so much to learn in the beginning about the different types of catheters a person with a neurogenic bladder could use.  I was shown a few single-use catheters at my next doctor’s appointment.  I selected a Lofric single-use catheter, that is lubricated with water. It became a hassle to carry sterile water, so I then ordered small lubrication packets called E-Z Lubricating Jelly. 

Privacy is important to me.  I don’t want others to know about my hygiene regiment, so at times situations get complicated, when I need to pee.   At work, I work at a local high school, I tried restrooms closer to my classroom, but that arrangement did not work out. It didn’t work out for a number of reasons: the first is that I need a sink in the stall; the second reason is kind of funny.   Since I cath, I have the flexibility in how I stand when I relieve myself.   I have a penis of sorts and can stand facing the toilet.  What if someone notices the position of my feet?  The toilet in the nurse’s office is perfect because there is a sink in the toilet area; it is essential to wash my hands.  I also like to keep  a stash of catheters handy for me to use.  So, I now have complete privacy, except for the fact that there are a million kids that can see me leave the nurses office, at times.  I am lucky I work with a population that can be a bit self-absorbed and not even notice my trek to the nurse’s office.

When I am gallivanting around, I carry my catheters in a side pouch.  I know this sounds silly but I am afraid of not having them with me in case the big earthquake hits.   The catheters are not easy to dispose of when I am out and about, especially if I am visiting a home, where I know the person emptying the so I carry a zip-lock baggie, which I can just carry out.  I have a “don’t tell” policy; it is easier that way.

All was well with the single use catheters until I took a group of kids to Japan and the catheters I took, for an overnight excursion to Kyoto.  It was so hot there they melted in the heat. I would have had to go to a hospital, to buy what I needed, if I did not take along some sample catheters I saw on a website, called Speedicath.  They are what I use now.

Shield Health Products does not carry Speedicath.  I had to try another company.  My first order was sent with extra product, to bilk the insurance company, I suppose.  When I received my first shipment I was horrified to see that besides my little shoe-box size box of catheters, I was sent two huge boxes of insertion kits. An insertion kit contains sterile gloves, a pad, a container to collect urine, and a mask.  The idea behind the insertion kit is to care for the bedridden person that needs a caregiver to help with the toileting tasks.  These insertion kits were automatically sent along with Speedicath catheters.  They could be called little rockets because they are for women, who are on the go, like me.  I am not needy at all.  The Speedicath catheter can be used by a marathon runner who needs to pee in a porta-potty, really fast, wanting to win the race, without hand-washing; because of their firmness, there is no need to touch the labia. They are also lubricated and so compact. "Why the insertion kit, I tried to comprehend?"  A clown nose, I could use, but not that. No wonder we spend so much on insurance. " I was beyond upset getting the kits, because perhaps they gave me a picture of myself, disabled and needing help to pee. I feel healthy and vital and I am not willing to think of myself in that needy way.   So, I then called the company and they told me that the boxes did not come due to error.  With this new product, Speedicath, insertion kits needed to come along, too.  It was and is hard to comprehend why the company paired the two products up.  I could not use them together.  They are meant for two entirely different toileting needs. “NOT ON MY WATCH”, I thought!  After many phone calls and intent to change companies for my medical supplies, the bosses’ boss told me that I could be the exception to this rule. I still might change companies since I feel like what they did is dishonest. I am still not sure of the rationale behind the decision.  My new medical supply is taking care of me now, though.  I have no complaints.  I have now received several shipments from them and all is well.

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