Trudy Triumph's Neurogenic Bladder Blog

An Opportunity for a Paid Interview

Attention all intermittent catheter users.

This is a chance to earn $150 for an hour long interview  If you are interested please contact them directly. They will select 5 participants. This is time sensitive, the opportunity will last only until May 25

Here is their introductory letter to me  

Hi Joanne, (AKA Trudy Triumph)

I found your website in doing a search for Intermittent Catheter support groups. My name is Roni DasGupta and I run a market research company that focuses on healthcare market research – improving products and services in the industry.

We are conducting a one hour telephone interview with 5 Intermittent Catheter users (who suffer from various conditions) to talk about their experience, patient journey, and also possibly providing input into new products (or current products).  We will be paying $150 for the telephone interview (mailed by check after the interview has completed). The interviews are for this week or next week.

We would love to hear your opinions and if you know anyone else that is interested, we would love to see if they qualify. The main qualification is that they would need to be on an Intermittent Catheter for over a year.  We’re looking for any types of patients, spinal cord injury, stroke, MS, Spinal Bfida, etc, that would use the IC.

We hope we can hear your voice in this area, your blog seems awesome! Please let me know if this is something you’d be interested in!

 

Sincerely,

Roni Dasgupta

.                                  

(o) 404.659.7664 x 207 | (m) 214.998.2623

roni.dasgupta@atlasprimary.io

www.atlasprimary.io

756 W Peachtree St NW, Fourth Floor

Atlanta, GA 30308

 

 

God is Bigger than the Corona Virus

During this time of the Corona Virus we are experiencing a frightful time and because of this circumstance it causes me to draw closer to God for comfort.

A lot of us fall into the medically fragile category and sometimes we think about what happens after we die. I am feeling so hopeful about my future. My hope for you is that your spirit is full of hope and peace as well.

Please let me unapologetically share my testimony.

This winter, 2020, during a class called Rooted https://www.experiencerooted.com/product-category/rooted/ at South West Church  https://southwestchurch.com/ in Palm Desert, California, I was asked to write out my testimony to the conviction I have of being a follower of Christ.

Humbly here it is.

The Spirit of a man will sustain his infirmity; but a wounded spirit, who can bare?

Proverbs 18:14

“We are all faced with great opportunities that are disguised as unsolvable problems.”

John Gardner

For thou has possessed my reins: thou has covered me in my mothers womb.  I will praise thee: for I am fearfully and wonderfully made.  Marvelous are thy works; and that my soul knoweth right well.

Psalm 139;13-14

I was born in Salinas California on June 16, 1954.  To say that I have had a charmed life is an understatement. I always had an abundance of food and love. I was taken to church every Sunday and had the privilege of being baptized, confirmed and married with the same Lutheran congregation. 

 I always knew, from an early age that Gods love was real  and Jesus dies for my sins.  Jesus answered very specific prayers for me as a child and I always knew that he cared for the smallest details in my life.

In high school and college I was involved in Young Life and Campaigners.  I had my wild times and God even then protected me from my indiscretion. 

When I was a student at Washington State University  I participated in a study abroad program in London, England I met the amour of my life, Randy Lake. We were married June 16, 1976. 

Along the way we have had bumps and grinds,  We had to place a daughter in rehab, raising 2 adopted children from Colombia with significant issues.  I mostly enjoyed raising my children. We had a busy home with a lot of affection and devotion.

 I feel loved and supported by by husband.  He always asks me, “What can I do for you? How can I make you happy?” He makes me really happy.

So for my testimony time I would like to share with you  an incredibly difficult time in my life and how God helped me through it at the beginning, and how he continues to support me through the challenging times.

For years I experienced terrible abdominal pain. I was told I had irritable bowel, was checked for appendicitis. I learned to live with it until I woke up one morning and found out the cause. I had neurogenic bladder and bowel. Perhaps this was caused by back troubles and surgery or perhaps by a vaginal hysterectomy I had in my forties. I do not know the why, other than to truthfully tell you that God has truly blessed me through this curve ball.

In the beginning I was shocked, embarrassed and confused. At work in the educational world and in daily life, my success had to do with accessible toilet facilities. 

 I had this secret for years.  God was my confidant. My outlet was a secret blog I started TrudyTriumph.com I had the pen name Trudy Triumph and even tough I wrote and wrote, I did not tell a soul. It was a secret

Online I unloaded.  I tried to find solutions. I met others from around the world who had similar problems. A young woman that had just given birth that had lost all bowel control, another who had a spinal tumor causing bladder and bowel trouble. A newly diagnosed neurogenic bladder patient that had her husband cath her because she was afraid to use an intermittent catheter herself. A man that wore diapers because of a war injury, who wanted to know, when in a relationship he should tell his intended. There was a man from India who wrote and asked if there were others in India who had neurogenic bladders. Imagine how lonely and humiliated this dear man felt? This letter made me cry. I was isolating myself too but I did not connect the dots back then.

Imagine having a problem so big, so common, yet so very humiliated by the situation you are afraid to talk to others, even doctors? 

The silence dam broke for me when I met my dear friend for lunch.  My blog was humming along, I had a book about to come out and still I felt so embarrassed by my situation that I did not tell some of my closest friends and family members.  Just God. Bladder and bowel problems are a forbidden topic, why would I make people squirm? Well I am here  to tell you that our bodies are fearfully and wonderfully made and God cares about all of our working parts and by keeping silent I missed the opportunity to help some of those closest to me.

During a lunch date my friend told me of her husbands horror, when as his body was ravaged by Lou Gehrig  disease. He lost all bowel and bladder control.  Here I was, one of her close friends, while she was going through the hardest time of her life I could have offered solutions; a hoyer  lift, products, emotional support. But I was to prissy to share that I was living the very thing she that her husband wanted to keep secret for the from others remainder of his life. My embarrassment broke at that point.  A flood of shame filled my heart and we cried together. 

I was forever Beyond Embarrassment.

Currently I have had setbacks.  I have third stage kidney failure due to the constant bladder infections I suffered and continue to have.  That translates to antibiotics for the rest of my days. My body cannot handle pain meds when my back goes out. I have dry skin, and a constant metallic taste in my mouth. Because of my neurogenic bowel I can not take long hikes with the hiking club due to probable accidents. I will forever need to use an intermittent catheter, so I always need to be diligent to cleanliness and needed supplies. 

GOD HAS GIVEN ME SUPORT AND EVEN HIS WORD TO OFFER SOLUTIONS

Luke 8:43-48 King James Version (KJV)

43 And a woman having an issue of blood twelve years, which had spent all her living upon physicians, neither could be healed of any,

44 Came behind him, and touched the border of his garment: and immediately her issue of blood stanched.

45 And Jesus said, Who touched me? When all denied, Peter and they that were with him said, Master, the multitude throng thee and press thee, and sayest thou, Who touched me?

46 And Jesus said, Somebody hath touched me: for I perceive that virtue is gone out of me.

47 And when the woman saw that she was not hid, she came trembling, and falling down before him, she declared unto him before all the people for what cause she had touched him, and how she was healed immediately.

48 And he said unto her, Daughter, be of good comfort: thy faith hath made thee whole; go in peace.

For 12 years this woman repeatedly tried to find help for her hemorrhaging condition.In her society, women who were bleeding were ostracized, outcasts, considered unclean. Rather that giving up she sought Jesus because she heard about the miracles he performed. She risked public rejection and humiliation. This passage tells me that there is no part of our bodies that is off limits to what God is concerned about. I need to be an open vessel about this to help others find the solutions, we all need to live our productive God given life.

Too often we feel isolated.  God gave us an example of a woman in the crowd who trusted God more than her risk of humiliation.

Tips from the woman in the crowd;

Reach out for help

Do not stay home and brood

Be brave and bold

Take a chance

I am here to testify that God cares for me, every part.  He cares for you too. During this time of being isolated we can remember that we are truly not alone. Together we have a big God. The Corona Virus will pass. Our future is still bright.

Peace be with you.

Clean Intermittent Catheterization: Where do we go from here?

A Question for Trudy:

 

Hello!

My name is Dristi. I am a biomedical engineering student from Illinois Institute of Technology. I am working on a project with a team to create a new hydrogel coating for intermittent urinary catheters. I recently found your blog, Trudy Triumph, during my research. After reading through it, I was wondering if we could talk more in depth on what you, as experts, feel are the main concerns or problems with using catheters.

The purpose of our interests in your feedback would be to determine what current catheters products failed to give users a positive experience. We would like to get your input or anonymous input from your blog, whichever you are comfortable with.

Thank you for your time and efforts.

Respectfully,

 

Dristi 

Illinois Institute of Technology

BS Biomedical Engineering; MS Electrical Engineering (Bio-Imaging and Signals) 2021

 

 

Trudy’s Answer:

 Hi, Drisi. Thank you for your question.  I will put my answer in the blog format in the hope that others will give their thoughts as to what intermittent catheters they use, major concerns, likes and dislikes, etc.

I started off using “red rubber” intermittent catheters.  I was told to wash them in “Dial antibacterial soap” and reuse them.  The process was cumbersome and I admit I found it a bit depressing, seeing my used catheters drying out in my bathroom, as a constant reminder of my new life, as I was not diagnosed until my children had moved out of my home.

As soon as I switched urologists, I was told that I had other choices.  Many Choices, in fact!  I was given samples and eventually settled on the “SpeediCath” style model, manufactured by Coloplast. I have tried others over the years, but keep coming back to this brand because:

 

  1. They are discreet and compact (about the size of a small tube of lipstick).
  2. The tip is firm, so when I insert it, I do not need to touch the tip.
  3. They are pre-lubricated, so I do not need to lubricate it.
  4. I like that they have a good seal so even when kept in my purse or pocket, the part that goes into my bladder is maintained clean and sterile.

From the book;

Beyond Embarrassment, page 75, Advantages of Clean Intermittent Catheterization

Sterile intermittent catheterization was developed in 1947, and, by 1966, a long- term study concluded that this method is state of the art in the management of Neurogenic Bladder. The advantages of clean intermittent catheterization (CIC), which is regarded as the most effective way to aid in bladder-emptying disorders, include a lower risk of urinary tract infections (UTI), urosepsis, and renal damage, besides providing autonomy and mobility.8,9,10 Prior to the availability of sterile intermittent catheterization, renal failure was one of the most frequent causes of death in spinal-cord injury patients, besides the abnormal backflow of urine back up into the ureters from the bladder (vesico-ureteral reflux). (Pressure within the kidney itself can severely damage it and prevent normal function.) Because urethral catheters are the most frequent cause of UTIs in hospitalized patients,11 it is important to adopt a system that reduces that risk. Sterile intermittent catheterization, when used long term, reduces renal scarring and bladder calculi (stones),12 which are common in bladders containing stagnant urine.

Dearest Readers,

How about the rest of you?  What do you like or dislike about your intermittent catheters? Please tell us what you like about yours.

– Trudy

8. Spinu, A., et al. “Intermittent catheterization in the management of post spinal cord injury (SCI) neurogenic bladder using new hydrophilic, with lubrication in close circuit devices—our own preliminary results,” J. Medicine and Life 5, no. 1 (2012): 21-28.

The use of Clean Intermittent Catheterization is so well accepted in some parts of the world that they are provided for free by the health agencies of many countries. They are viewed as an application of the concept of the inseparability of biomedical and social aspects in human functioning, based on the system established by the World Health Organization in 2001, the International Classification of Functioning, Disabilities and Health (ICFCH). For example, since 2008, the Romanian National Assurance House (the Health Plan of Romania) has fully supported the unlimited use of four closed-circuit hydrophilic catheters per day for patients diagnosed with Neurogenic Bladder.

9. De Ridder DJMK, Everaert K, Garcia Fernandez L, et al. Intermittent catheterization with hydophilic-coated catheters reduces the risk of clinical urinary tract infections in spinal-cord injured patients: a prospective, randomized, parallel comparative trial. Europ. Urology 2005 48: 991-995.

Pregnancy and Neurogenic Bladder

Question:
Hi Trudy!
I am 30 years old and been diagnosed with a neurogenic bladder from the age of 9 due to spinal cord surgery that went wrong. Ever since I have been using self catheterization between 5-15 times a day. Went to school, got my degree and worked a full time job. It’s been a struggle (also mentally) but I’ve been coping with it.
Today I am 25 weeks pregnant for the first time, and having a neurogenic bladder has added a lot of stress to my pregnancy, to a point where even though I’ve been dealing with this issue most of my life, I’ve found myself lost and very much alone.

How does one deal with pregnancy and self catheterization? What happens when I get too big to do it myself? Will the contractions make me loose bladder control like other pain does?

I never found another woman dealing with these issues until I found your blog, but I couldn’t find anything about pregnancy.

Would very much appreciate your thoughts and advice.

I apologize for my bad grammar and spelling, English is not my native tongue.

Thank you!
-S

Trudy”s Answer:

Early in pregnancy feeling hopeful.

How big can you get??

Congratulations, I am truly happy for you.  What a blessing children are.  I found this video that you might enjoy, as your child grows and your excitement builds.

As you might know I am not a medical person. I do however have some thoughts that might help.  I do have neurogenic bladder like you and I was also pregnant for the first time as well. I birthed a 10 pounder for my first child and the good thing about that is that my daughter grew gradually. My bladder got more compressed, smashed really. Each day seemed a little like the day before. I learned to cope because the process was gradual.

Our doctors are not sympathetic to our daily lives.  Honestly I think they could care less, but I promise you that as soon as a medical emergency pops up your doctor will help you solve the problem. That is what they do best.

As time goes on you might need to find a new cathing position or a longer intermittent catheter, all an easy fix.

As you enjoy this very special time in your life remember not to let your chronic condition rob you of your joy. Life is full of these hurtles.  Run a good race.

I understand the mind games that we put ourselves through. Just recently I was given the opportunity to travel to China with a group from my church.

To give you a background about myself, for years I suffered with back to back bladder-infections due to using  intermittent catheter.  For the last several years, I was fortunate enough to be bladder infection free due to a low dose antibiotic taken daily, preventatively.

Well wouldn’t you know the day I was going to sign on the dotted line to go to China I broke through and got the dreaded bladder infection.

With the doctors help, I am well again but believe me, I spent a bit of time with a HUGE pity party. “WHY ME??” “I am so tired of this crap”

At that time I had a choice, was I going to let this chronic condition rob me of the good parts of my life?  Believe me, I have learned when it gets embarrassing, keep on, keeping on.  When it hurts, keep busy and try not to think about it.

I told my husband, get travel insurance. I will go to China!.

We need to live, run a good race.  No it is not easy at times.  Our life is a bit more complicated. You will be a great mom.

I hope this helps you. Please write to me and let me know how it is going.

Does anyone out there have words of wisdom to share?

https://www.facebook.com/ScienceNaturePage/videos/2720509141310488/UzpfSTEwMDAwMjM4MzY1OTkwNzoyMjkyNDIxMDAwODQ3MzMz/

The stages of human development

The stages of human development. #Biology

Posted by Hashem Al-Ghaili on Thursday, June 13, 2019

Can Kombucha help my Neurogenic Bowel?

Not long ago Julia and I attended a #BlogHerHealth19 conference in LA. I was fortunate enough to meet Hanna Crumb, an expert on the drink, Kombucha, that can replenish good bacteria into our gut.  Many of us dealing with neurogenic bowel, take antibiotics every day.  The antibiotics can kill our good digestive bacteria. Because of this we need to be intent on what we eat as we continue our quest to stay healthy. Hanna was kind enough to answer some questions.

1. Can Kombucha help when a person has a sluggish bowel or constipation?

Kombucha is a traditional, fermented sweet tea. It has a tangy, refreshing flavor, light effervescence and is full of organic acids that aid digestion. Many people experience relief from digestive issues within a glass or two – though every body is different. Not a cure, it is a nutrient dense food that has been used for thousands of years to support a healthy lifestyle.

2. What are probiotics? How can they help a person like me?

Probiotics are beneficial microbes that confer a benefit on the host. What that means is when we consume foods that are imbued with living bacteria and yeast, they have a positive impact on our body. While fermented foods have been consumed by humans since the dawn of time, the recent research into the Human Microbiome and gut-brain axis are revealing just how crucial it is that we consume these foods on a regular basis in order to regulate our gut for optimal physical and mental health.

3. Is it safe for children? Is there alcohol in it?

All fermented foods create trace amounts of alcohol as a preservative. Alcohol kills pathogens – think of rubbing alcohol on a wound. It also relaxes the body and thins the blood making it easier for absorption of nutrients. The trace amounts are not intoxicating to most people. Some may experience a “buzz” though it is usually a niacin flush or B-vitamin rush that creates a brief euphoria yet does not impair. Of course, every body is different so Trust YOUR gut.

Children LOVE Kombucha and when you make it at home, its a low cost substitute for chemical laden sodas and sugary juices. It also helps when they have an upset tummy. Start them on small amounts 2-4oz a day and see how they respond.

4. Can you drink too much? Are there instances of food poisoning with it?

Kombucha is a food like any other. At some point your body will let you know when you’ve had enough (you’ll be in the bathroom!). Some folks who are new to Kombucha may find that their body is having a “healing crisis” as toxins are released. This is typically a temporary state as the body clears out old junk. If you experience any discomfort, simply increase water consumption to hasten the release. Those who have histamine allergies may need additional gut lining repair before they can tolerate fermented foods.

Kombucha’s low pH and organic acid profile kill pathogens and prevents mold from forming. It is one of the safest foods you can make at home! Over consumption may lead to discomfort but typically one would need to consume quite a bit before that happens. I personally consume 0-32oz per day. That means some days I don’t have any booch at all whereas others I’m thirsty for it. My husband drinks up to a gallon a day! Once you start consuming it, you will find the right amount for your body.

5. It is expensive, can I learn to make my own?

We experienced the exact same problem over 15 years ago! Our thirst outgrew our budget, so we started making it ourselves. It’s incredibly easy and inexpensive to make your own Kombucha at home, whether you try the Batch Brew or Continuous Brew methods. If you’d like to know more about the differences, try this link: https://www.kombuchakamp.com/kombucha-continuous-brew-vs-batch-brew-explained

Little did we know the powerful transformation it would bring us both and here we are, Kombucha’s biggest advocates. The story of most brands, including GT’s Kombucha, the first commercial brand, is that a health challenge led them to Kombucha – transformation occurred and they were inspired to share Kombucha with their loved ones and community. Today there are over 500 brands around the world thanks in no small part to Kombucha Kamp’s empowerment through education as well as our category building efforts through Kombucha Brewers International, the trade association for commercial producers around the world.

6. Will you please let us know about your blog and the book you wrote?

Visit KombuchaKamp.com/Kombucha-Recipe today to download your free e-book to learn more about brewing Kombucha safely at home. That will also subscribe you to any new blog posts as they come out, and our weekly newsletter for all the latest recipes and tips. Or check out The Big Book of Kombucha from your local library. Our 400 page book includes over 400 recipes and was released in 2016. With more than 100K copies in print, it’s an Amazon best seller. We wrote it to be the most comprehensive guide available, one that could help newbie’s or veteran brewers. And it’s launching in Spanish later this year!

Best, Hannah
Trust Your Gut

Used with permission of Storey Publishing, Matt Amendariz, all rights reserved

A Positive Review for Fohm Co

 

I came across a product that I just had to share with you. Fohm is for those who need or want to use flushable wet wipes, but hate the thought of running into plumbing issues. The Fohm system produces a sanitizing foam that you can use in combination with your own biodegradable toilet paper. (Any toilet paper you like, in fact). It is an automated dispenser, so you do not need to touch the device to use it  and when the deed is completed, you just flush it all away, down the toilet. 

I am interested in this product because I, myself, have a neurogenic bowel. So interested, in fact, that I write about it regularly in my blog http://www.TrudyTriumph.com and wrote the book, Beyond Embarrassment: Reclaiming you Life with Neurogenic bladder and bowel.

A neurogenic bowel can cause a wide range of symptoms, depending on circumstances and degree of severity. It can result in constipation, or loss of bowel control to the extent that you can pass a stool suddenly & unexpectedly. Bowel issues can range from sometimes leaking a small amount of stool while passing gas, to continuously not being able to control your bowel movements. I have developed a strategy to deal with it that works for me most of the time. My strategy is to keep regular, by building exercise and a high-fiber diet into my daily routine . . . and I keep my chin up. Attitude is actually a major factor to my success!

Having a neurogenic bowel is very inconvenient, at times. Those of us living with a neurogenic bowel try to buck up, fit in, and stay under the radar, but there are times when life gets complicated. Things can get messy. When I worked at a high school, I could never trust myself to use the public restroom stall, which lacked running water, with a private sink. I instead sought out the nurses room or a staff toilet, which included a convenient sink, in the stall with the toilet. But, what if Fohm was a regular mainstay in school bathroom toilet stalls? Surely, I am not the only person that runs into trouble, now and then.

The arrangement in my bathroom, at home, is even a bit inconvenient. Our toilet is separated from the sink by a bit of floor space. A “must-have” for our commodes is toilet paper, of course.  But what if toilet paper alone, is just not enough? Wipes, right? Well not so much, because you can”t flush them down the toilet, AND still need to throw them away, discretely. Which I find gross, actually, if the situation gets messy. A dispenser with sanitizing foaming cleanser to wet my toilet paper is the perfect solution!

Fohm is a great alternative to regular disposable diaper or wet wipes. This dispenser, conveniently placed near the toilet, could or should be standard fare in all work-related & public school restrooms, home restrooms, and nurseries. It maintains both hygiene and privacy and as an added bonus, it’s a “green” solution, to boot. BRILLIANT!

Are you interested in this inexpensive and convenient dispenser?

You can learn more and buy one by clicking on this link:

And if you have questions, the manufacturer has a live chat feature.

Bladder Problems Can Affect Your Kidneys : Kidney Health 101

Question for Trudy:

Dear Trudy,
I am not sure if you remember me or not. My name is Kelli. I have Multiple Sclerosis and have been dealing with bladder/bowel issues for some time. I noticed in my e-mail you are dealing with another health issue (kidneys I believe).
I am SO sorry that is the case.
I currently receive home care twice a day to help with my bladder. May I ask if your trouble with your kidneys is anything to do with self-cathing ?
Cheers, Kelli🌹

Answer

Dear Kelli,

I am so glad you asked this question because like you, I was in the dark about the connection between neurogenic bladder and kidney problems.

In my last post, I was complaining because I felt frustrated that I am limited to the use of some pain meds, because I have to be kind to my kidneys. I just want to take extra special care of what I have. Because we have neurogenic bladders and multiple infections, our kidneys can also become compromised, over time. If you look at your anatomy, the kidneys are just a tube ride upstream from the bladder, so eventually bladder troubles can easily lead to kidney disease. This is really important for us to keep in mind because we can help our kidneys last as long as possible. One thing to help is to avoid ingesting harmful toxins and even seemingly safe substances that cause the more work for our kidneys. Drugs and alcohol are a no brainer, of course. Alcohol puts additional stress on the kidneys; they have to work harder because alcohol acts like a diuretic and the kidneys have to maintain your electrolyte balance. So, there simply can be no “drinking in excess”! Using Tylenol for pain, instead of Advil, is better [see Pain Medicines (Analgesics)] because Tylenol is metabolized through your liver and Advil, non steroidal anti-inflammatory drugs (NSAIDs) are more damaging to kidneys, especially if they already exhibit decreased function. If you have arthritis, like I do, using pain meds very sparingly is a very good thing. My motto, at times, has become: “Suck it up buttercup.”

When you go in for your annual yearly check-up, if you doctor has not ordered the test, ask to have your kidneys checked. With just a simple blood test, they can determine how your kidneys are doing. The biological marker they measure is Creatinine. High blood pressure is both an additional stressor to the kidneys and an indicator that your kidneys may be in trouble. I will use myself as an example.  My eGFR is 54. That tells me that my kidneys are moderately impaired. I have been taking an antibiotic every day for several years, now, and my eGFR has remained the same, so it is not alarming. BUT I am technically at “3rd stage kidney failure,” on the chart.  One starts dialysis when the creatinine clearance level indicates: 4th stage kidney failure. So, I watch what I eat — avoiding salty food (again, the diuretic effect) and even herbal dietary supplements, for instance [see link in previous post]. I also exercise, almost daily, to keep my blood pressure down. (Yes, it is a bit high, I’ll admit).

I would encourage all of you to find out how your own kidneys are functioning.  We need to be aware of our bodies and try to keep them healthy. Everything is connected and can easily affect another part of your body! I found this excellent article about pain control and kidneys. Please take the time to read it.

Kidney Disease Can be a Real Pain
By Raffi Minasian, MD

Pain is a common and complex problem in people living with chronic kidney disease. The risks and benefits of treating pain itself need to be understood. Pain medications can cause dependence, depression, itching, constipation, dizziness, light-headedness, feeling faint, abdominal distention, bloating and increased risk of falling. Patients are often unaware of these risks.

Please read on.

Kidney Disease Can be a Real Pain

We need to be aware of limitations of our own body. I hope this helps. I look forward to hearing back from you, soon!

Consider your Kidneys When Managing Chronic Pain

JoAnne Lake aka Trudy Triumph

It has been awhile and for that apologies. Let me share a note with you:

Dear Trudy,

How are you? First to wish you a happy year and that you keep being such a wonderful person as you are. Yesterday I just was thinking that I do not receive the emails I used to regarding the group anymore. I miss it a lot. To me it is so important to keep in touch with my “sisters” who share this important issue in our lives. Thank you very much, if you could answer me and give me some news?
With love,

Ana ______________________________________________________________________________

Dear Ana and Other Readers of this blog,

Thank you for your sweet email, Ana.  I appreciate your long-term interest, support and patience. I have been struggling with the future of this blog: how I want to proceed, and maintain content that is vibrant, fresh and engaging. Because of your email, I have made a decision regarding the direction I want to take.  I have always been honest with you, sharing my most intimate concerns. I now know I need to be honest about the next stages of bladder dysfunction, which I am facing. I get heart wrenching emails from those who are newly diagnosed. Your bladder and bowel are not working and it seems like the end of the world. It was for me, too. I was so upset and embarrassed.  As you all know, I journaled and with Julia’s help, started writing this blog and eventually published the book, Beyond Embarrassment : reclaiming your life with neurogenic bladder and bowel.
Our paths are so similar, once our bladders stop functioning normally. First we learn to use an intermittent catheter and manage a rogue/unpredictable bowel.  Eventually, we figure out how to manage it and it all ends up working, more or less; things settle down.

But sooner or later, we experience chronic bladder infections, due to the introduction of a foreign object into our bladder, several times over the course of the day. This is so hard. The screaming pain, interruptions to our routines, including taking time off work for a doctor’s appointments or dropping off urine for analysis. Then, the race to find the correct antibiotic, and afterwards, completing the course. Eventually, that drug stops working, and we’re back to starting another course or begin the search for a new class of antibiotic, and always at the most inconvenient time!  We all try to cope with this cruel cycle and just live our lives. But, it’s frustrating and it wears you down.

Our doctor says, “Try to push past the pain. Cloudy urine is expected; take Phenazopyridine and see if it masks the agony.”  It never did for me. Seeing the lab techs.’ face when cloudy bloody urine is dropped off and hearing them comment to the others, “Oh, she uses an intermittent catheter.” You think you’re used to dealing with your condition, but even an innocent comment can break through the thick skin you’ve managed to put on.

Now, I give you the third revelation of our plight. The infection can eventually travel up into the kidneys and cause damage. For me, when the urologist told me that I need to take an antibiotic for the rest of my life, it became clear that my kidneys would be taking a hit. At that point, it didn’t much matter that, in addition, the antibiotics might eventually cause pulmonary fibrosis, (mentioned in my earlier post in July 2018) due to a build-up in my lungs.

So here’s my news: The reason I have not written in a while is because I was fearful to share with you, what has been weighing on my mind & that I am now going through. I cannot put a fun spin on it. It is hard and my fear was that it might be discouraging to anyone who has received a recent diagnosis of underactive bladder, urine retention or neurogenic bladder. You are like a dear second family, that I relate to; I always want to be a source of encouragement to all of you. But because of my many bladder infections, over the past few years, I now live with moderate kidney function. My kidneys are only partially effective and because of this, I need to be careful about what I put in my body, that will put additional strain or create additional toxic effects on them. Advil/ibuprofen is a “no-no,” except a tiny bit because they raise blood pressure and can lead to toxic by-products which all strain the kidneys even more.

Why am I so concerned about a little pain killer? Over the past few months I have developed painful joint aches perhaps arthritis, especially in my neck.  It is so painful. I frequently get headaches. My skin is itchy, as well. During this, in a way, I have felt a bit like an imposter standing before you; not quite as frank & honest as I would have you believe. On the outside, Everything is going great: No more bladder infections, my daily routine is a piece of cake. The bowel problems are easy: I know what to do to manage them with diet & a few precautions to have a good day.  Life is easy and I almost forget my bladder and bowel problems all-together.

The biggest challenge with third stage kidney failure is pain management. Anything that puts additional strain on kidney function or results in toxic by-products can damage them even further. I have tried massage, but to little effect/result for my pain. My physical therapist did little except refer me to a book about “pain control,” suggesting I should “get a life, enjoy my family, serve others more, and journal”. Geeze, I think I have done that. My family doctor has been no help, either. So right now I am just blindly trying to cope and look at alternatives. By the way, I want to mention that The National Kidney Foundation (NKF) does recommend to remove herbal supplements from your diet once you start losing kidney function. Read more

I am not a medical professional and this new stage frankly dumbfounds me. This pain is new to me. I had grown comfortable with my situation. Honestly, I try to eat right, I exercise, but chronic pain is so hard. I am trying to work through it.  Push past it. Doing my best. Perhaps it will get better . . . I hope so. For right now, I am just trying to push pass all the discomfort and lead a full life. It’s what I stand by!

So now, you hopefully understand my dilemma . . . somewhat. When I get letters from the newly diagnosed, I delight in walking them through the process of getting their life back. Well, I do have one more confession to make. I have been a bit depressed, so I have ignored a few recent “newby” emails. To you, in particular, I am sorry and apologize. This has not been easy for me to share with you. I have no real advice to offer. I am stumped, and do not want to sound like a deadbeat or a whiner. Please forgive my absence on the blog over the past few months.  I will try to write again.  Now that I have let you in on my latest plight, it will be easier for me to write. Please do not let my honesty discourage you. This is the real reason I have been absent.

Let me say, for now, I am trying to deal with this new hurdle – I am open to trying & seeking new ways to find relief. I am back in the saddle and will respond to you personally. Please keep the letters coming. I love you all, I honestly do! So much hope surrounds the diagnosis of neurogenic bladder and bowel.  Indeed, it is not the end of the world.  We are able to lead a wonderful full life, just by exercising some extra care and taking basic precautions. If we lose hope, how do we live?  We have so much.  Our God is so good.


How DO we deal with pain and impending kidney failure, at the same time? Have you planned for good pain management when the time comes? What alternatives to analgesics (acetaminophen and nonsteroidal anti-inflammatory drugs (NSAIDs)) and opioids exist, such as cryotherapy, physical therapy and acupuncture techniques; do they work for everyone? Do current guidelines provided by nephrology specialists adequately guide good decision-making?

Do your homework, talk to your doctor(s) and share your thoughts and experiences with all of us.

References:

Recommendation to avoid Herbals (NKF) Use of Herbal Supplements in Chronic Kidney Disease

Clinical Kidney Journal Guidelines for pain management https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5622905/

Acupuncture for Kidney patients https://www.worldscientific.com/doi/pdf/10.1142/S0192415X18500611

https://www.worldscientific.com/doi/pdf/10.1142/S0192415X18500611

Book Beyond Embarrassment can Help When Using an Intermittent Catheter at Work

School is already in full swing.  I thought this question was so timely. Working in a busy school environment can be so fast paced and crowded.  Our need for cleanliness, privacy, and professionalism all seem to collide at times. Especially when learning to use  an intermittent catheter. The book “Beyond Embarrassment” can offer useful tips.

Question:

Hi Trudy:

I have just had sling surgery to alleviate stress incontinence. Unfortunately, I have not been able to pee since the surgery. I left the hospital with a Foley catheter. I have been back to to the doctor twice with had it removed, tried to pee with no success. The doctor is now going to have me begin intermittent self catheterization . I am very worried about this. Will it be something that I will be able to do in a school environment as I am a teacher?  Any suggestions or thoughts are much appreciated. Have you heard of this  retention side effect from sling surgery before?  And if so, does the bladder normally regain its ability to pee without a catheter?

Thank you so much.

Trudy’s Answer:

First of all I am very sorry for your unfortunate circumstances.  

Now for the tips part.

I found a lot of success in the school environment.  I was fearful on my first day at school as well.  There were so many fear factors for me.  All the germs, my privacy, and just logistics. While we are editing the book “Beyond Embarrassment: Reclaiming your life with neurogenic bladder and bowel” the editor suggested I start the book with my hardest day ever with neurogenic bladder. 

That for me was the first day I had to use an intermittent catheter at school. The book begins with this crazy hard day.  My frets were overcome and things ran smoothly after a while.  Like any big change there is a fear factor for sure, but things went well after a while.

Take a look at my stressful day at school, from the first few pages in the first chapter of the book. Go to the, “Look inside feature and scroll to the first chapter.

https://www.amazon.com/Beyond-Embarrassment-Reclaiming-Neurogenic-Bladder-ebook/dp/B01HN4H5L2/ref=sr_1_1?ie=UTF8&qid=1538307144&sr=8-1&keywords=Beyond+embarrassment

Some tips the Chapter, Slimy Tubes and Tricky Situations

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. Through experience, I have learned that catheters are sometimes not easy to dispose of, so I carry a zip-lock baggie, which I can just carry out with me. I have a “don’t tell” policy; it is easier that way. I can’t believe how many public restrooms do not have trash disposal.

Toileting happens wherever you are. Be ready! Living with a Neurogenic Bladder and Bowel means we need to be as prepared as a Girl Scout, as diligent as a new mother, and as ready as an army troop deploying overseas. I always have my catheters along. But there is more to being prepared than just having the material goods, believe me. I needed to train, and so do you.

Because I need urinary catheters with me while carrying out daily activities, I have found some stashing places that keep me safe in case I run out and have forgotten to bring them along:

The car glove compartment

The nurse’s room at work

Out-of-the-way spot in the kids’ or trusted friends’ restrooms

All of the restrooms in my home

All first-aid kits should have them, don’t you think?

In the book I also have tips for bladder infections at work.  But for you let’s not jump the gun, you are just starting out.

The bottom line is please do not let this rob you of your joy.  We humans are remarkable and we are good at coping. Unfortunately you won’t have time for much grieving your situation.  In my case I found that good because I was so busy with kids that I forgot about myself.

One thing that did not make it in the book was a busy day at school when catheters flew out of my pocket.  I worked at a high school and some of the kids just helped me pick them up. One student knew what they were, which surprised me.  I was embarrassed but one the students said,” Don’t worry Mrs. Lake my mom uses them too.”  We just got on with business. No big deal.

How do all of you cope with intermittent catheters at work?

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