Trudy Triumph's Neurogenic Bladder Blog

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?

Coping with Hysterectomy Causing Neurogenic Bladder

Question from Reader:

How do I cope? I’ve been using self cath for two weeks now. I had hysterectomy on 6-14-18. I went into retention and they sent me home with a catheter. I had also gone into retention previously for a different surgery 2 years ago. I’m afraid I have bladder damage from those 2 incidents. I am so afraid of this. How can I cope? I feel like my life is over. My doctors have given me no answers yet.

 I wonder if people ever recover. My doctors keep telling me it’s temporary but it’s been 7wks and my bladder worked at first but then after 6wks stopped again. Just wondering what that could be? Because if I was to have an issue wouldn’t it be right after surgery?

Trudy’s Answer

My answer has two parts.

The first part is the possibility of an underactive bladder after a hysterectomy and the second is dealing with grief and depression.

From the book, Beyond Embarrassment by JoAnne Lake with Julia Parker

Surgical Trauma, Vaginal Hysterectomy

At the age of forty-three, I had a vaginal hysterectomy, and, at the time, I was glad I did. My periods were lasting longer than three weeks a time, and the nearly constant loss of blood was making me weak. It was hard keeping my clothes clean and my spirits up. To say I was desperate is an understatement. Now that I look back, I might have acted rashly; I definitely acted without informing myself of the possible consequences. 

Here are some facts for you from the book.

Knowledge Nugget:

Both hard physical work and past gynecological surgeries are risk factors for urinary incontinence (UI)4. Major pelvic surgery, including radical hysterectomy, is known to cause bladder dysfunction. In his article “Neurogenic Bladder,” Dr. Raymond R. Rackley states that “as many as 80 percent of affected patients will experience spontaneous recovery of function within six months after surgery.”5 That leaves 20 percent or more who will continue to have problems. Feelings of extreme shame and embarrassment that accompany disclosure of UI often lead to inaction or significant delay in seeking help, which could ultimately contribute to additional damage to organs of the urinary tract.

There are so many causes of neurogenic bladder and a hysterectomy is certainly one of them. Sometimes bladder function comes back, sometimes it does not.

Also in Beyond Embarrassment: Reclaiming your life with neurogenic bladder and bowel”, I have a whole chapter on depression.

Situations arise that seem so much bigger than we can handle.

Sometimes I can get into a funk. Physical loss is hard, sometimes I grieve the body of my youth.  So many losses. I did not even think to appreciate the whole body I enjoyed at one time. Perhaps before my bladder and bowel broke, I thought that basic functions were my right.I took what I had before, for granted. Life was so easy and I did not thank God once for my easy life.

Even now my life is easy in many ways.  I have a new normal to get used to.Thankfulness is the key I have found to get through the hard times.

Give yourself time to grieve and only then you will be better able to move on.

Profound loss can be powerful in a good sense too, because we are reminded from where our power comes. My faith in God helps me.

HE roars like a lion.

HE gives me strength.

Our Father has broad shoulders.

Enjoy this song. Please allow me to share it with you that just lifts my mood and helps understand that I love a powerful God. “You make me Brave” and “Oceans” sung together remind us that that as our trials come we have a choice to look up or look down.

Julia was kind enough to find other resources for you regarding surgical procedures and hysterectomy. Be informed and enjoy.

New therapeutic directions to treat underactive bladder

This article will give you some topics to discuss with your doctor.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5740036/

 Articles about hysterectomy and the underactive bladder.

 

1: Wallis CJD, Peltz S, Byrne J, Kroft J, Karanicolas P, Coburn N, Nathens AB,

Nam RK, Hallet J, Satkunasivam R. Peripheral Nerve Injury during Abdominal-Pelvic

Surgery: Analysis of the National Surgical Quality Improvement Program Database.

Am Surg. 2017 Nov 1;83(11):1214-1219. PubMed PMID: 29183522.

2: Ramdhan RC, Loukas M, Tubbs RS. Anatomical complications of hysterectomy: A

review. Clin Anat. 2017 Oct;30(7):946-952. doi: 10.1002/ca.22962. Epub 2017 Aug

22. Review. PubMed PMID: 28762535.

3: Kyo S, Kato T, Nakayama K. Current concepts and practical techniques of

nerve-sparing laparoscopic radical hysterectomy. Eur J Obstet Gynecol Reprod

Biol. 2016 Dec;207:80-88. doi: 10.1016/j.ejogrb.2016.10.033. Epub 2016 Oct 28.

Review. PubMed PMID: 27825032.

4: Castiglione F, Bergamini A, Albersen M, Hannan JL, Bivalacqua TJ, Bettiga A,

Benigni F, Salonia A, Montorsi F, Hedlund P. Pelvic nerve injury negatively

impacts female genital blood flow and induces vaginal fibrosis-implications for

human nerve-sparing radical hysterectomy. BJOG. 2015 Oct;122(11):1457-65. doi:

10.1111/1471-0528.13506. Epub 2015 Jul 14. PubMed PMID: 26179559.

5: Chen L, Liu M, Huang X, Zheng Y, Qiu J, Liu H. A Modified Nerve-Sparing

Panhysterectomy for Benign Uterine Diseases: Techniques and Evaluation of

Postoperative Pelvic Dysfunctions. Gynecol Obstet Invest. 2015;80(1):38-45. doi:

10.1159/000370149. Epub 2015 Mar 21. PubMed PMID: 25823505.

6: Chen L, Zhang WN, Zhang SM, Yang ZH, Zhang P. Effect of laparoscopic

nerve-sparing radical hysterectomy on bladder function, intestinal function

recovery and quality of sexual life in patients with cervical carcinoma. Asian

Pac J Cancer Prev. 2014;15(24):10971-5. PubMed PMID: 25605211.

7: Kanao H, Fujiwara K, Ebisawa K, Hada T, Ota Y, Andou M. Various types of total

laparoscopic nerve-sparing radical hysterectomies and their effects on bladder

function. J Gynecol Oncol. 2014 Jul;25(3):198-205. doi:

10.3802/jgo.2014.25.3.198. Epub 2014 Jul 3. PubMed PMID: 25045432; PubMed Central

PMCID: PMC4102738.

8: Laterza RM, Sievert KD, de Ridder D, Vierhout ME, Haab F, Cardozo L, van

Kerrebroeck P, Cruz F, Kelleher C, Chapple C, Espuña-Pons M, Koelbl H. Bladder

function after radical hysterectomy for cervical cancer. Neurourol Urodyn. 2015

Apr;34(4):309-15. doi: 10.1002/nau.22570. Epub 2014 Feb 12. Review. PubMed PMID:

24519734.

9: Hodges KR, Davis BR, Swaim LS. Prevention and management of hysterectomy

complications. Clin Obstet Gynecol. 2014 Mar;57(1):43-57. doi:

10.1097/GRF.0000000000000004. Review. PubMed PMID: 24488052.

10: Zhang XM, Huang XF, Xu H, Quinn M. Endometriosis: a consequence of varying

injuries to pelvic autonomic nerves. Fertil Steril. 2012 Dec;98(6):e29. doi:

10.1016/j.fertnstert.2012.10.002. Epub 2012 Oct 18. PubMed PMID: 23084268.

11: Tseng CJ, Shen HP, Lin YH, Lee CY, Wei-Cheng Chiu W. A prospective study of

nerve-sparing radical hysterectomy for uterine cervical carcinoma in Taiwan.

Taiwan J Obstet Gynecol. 2012 Mar;51(1):55-9. doi: 10.1016/j.tjog.2012.01.011.

PubMed PMID: 22482969.

12: Vrzackova P, Weiss P, Cibula D. Sexual morbidity following radical

hysterectomy for cervical cancer. Expert Rev Anticancer Ther. 2010

Jul;10(7):1037-42. doi: 10.1586/era.10.89. Review. PubMed PMID: 20645693.

13: Hohenfellner R. Nerve injuries in urological surgery. Georgian Med News. 2007

Feb;(143):7-11. PubMed PMID: 17404430.

14: Kafy S, Huang JY, Al-Sunaidi M, Wiener D, Tulandi T. Audit of morbidity and

mortality rates of 1792 hysterectomies. J Minim Invasive Gynecol. 2006

Jan-Feb;13(1):55-9. PubMed PMID: 16431324.

15: Kirby RS, Fowler CJ, Gilpin SA, Gosling JA, Milroy EJ, Turner-Warwick RT.

Bladder muscle biopsy and urethral sphincter EMG in patients with bladder

dysfunction after pelvic surgery. J R Soc Med. 1986 May;79(5):270-3. PubMed PMID:

3723519; PubMed Central PMCID: PMC1290310.

Julia Parker

Biosleuth Consulting Services | biosleuth@gmail.com | http://www.amazon.com/author/juliaparker

Celebrate Medical Librarians! https://news.nnlm.gov/pnr/how-i-came-to-be-the-biosleuth/

The Value if an Infectious Disease Doctor- Antibiotic Overload

Not long ago, while out of town, a spider or some sort of bug decided to decorate my face. I noticed a few pinprick type bites that at the time did not bother me much. I have been bit countless times, so besides the itch, I just ignored the discomfort.

After several days the footprint of the bites grew in size so by the time I made my way to the emergency room, I had a wound that looked like a cigarette burn near my eye and my eye lid was like a bag of water, with my face so swollen I looked quite goulash indeed.

As I awaited in the room for the doctors examination I read a big sign that read, “Not everyone leaves with antibiotics.” I was so happy to read this because I take an antibiotic for chronic  bladder infection daily and will do so for the rest of my life, so in my mind the last thing I needed was more antibiotics.

After the examination, I was told  I should not use ice but heat only face and to hang in there, because I was going to get shot in my bum (some sort of antibiotic) and a prescription of two other antibiotics. SO by the end of the day I picked up the pills and felt a little freaked out because I was given three new types of antibiotics. Three types.  What about the hospital sign? Evidently it did not apply to me.

The big concern I had was the two oral antibiotics prescribed. They were the same types I had taken before, but grew resistant to when I was fighting bladder infections on a regular basis. I worried that they could not help me.

I  filled my prescription and felt weirded out, but obediently took the brew because I was afraid of what the infection would do to my face. Yes even  at my age I am still a bit vain.

Two years ago it was suggested to regularly see an infectious disease doctor. Added to my medical team he would oversee my medications. His purpose was to oversee my antibiotics  I now need for the infection in my kidneys and bladder.

As soon as I got home I called the doctor on call because I worried about:

1. Taking four types antibiotics at the same time.

2.  Two of the antibiotics I had formally gone resistant to and they       no longer helped cure my bladder infections so how could they possible help me with my puffy face/Cellulitis.

The infectious disease doctor on call reassured me that just because I had grown resistant to the antibiotics prescribed regarding my bladder that the infection, my cellulitis, would most likely respond to them because now I was treating a skin infection.

I am happy to report, after two weeks, other than a whopper scab near my eye I look normal again.

I was so very thankful I was connected to an infectious disease doctor. Sometimes we are so busy enjoying life and dealing with our chronic issues we forget that acute tidbits crop up now and then.

As a side note, the doctor told me that when one gets a bite one should always wash it with soap because the opening in the skin can become infected.  Well that was a lesson learned for me, for sure.

How reassuring to have a doctor on my team who helps me understand this part of my life. He is on hand, of course for the day that might come, when I grow resistant the antibiotic I am taking to fight chronic bladder infections.  He also cautions  me to look for a rare side effect a build up in my lungs that can cause pulmonary fibrosis.

How do you handle acute situations while living with a chronic illness?

Do you see an infectious disease doctor as well?

The Emotional Impact of Bladder Disorders

Before I was diagnosed with an underactive bladder and along with the Biosleuth, Julia Parker, started this blog and and the book, “Beyond Embarrassment: Reclaiming your life with neurogenic bladder and bowel” life had become a “bit complicated”, despite my happy circumstances.

I was enveloped in a cloud.  A lovely family, loving husband, yet where was my joy? Why was I anxious?  My body ached. When I ate food, I felt full and unsatisfied.  I had other tell-tale signs, of course, but they crept up so gradually, I did not pay attention. Long before, in my youth, I could ‘pee like a racehorse.’  In fact, I had to press my urine out with my hand, at this point.  I prided myself on not needing to use the restroom as frequently as my friends when we were out and about.

I had shared my subtle (well, now they don’t seem so subtle) symptoms with my doctor for years, at this point.  He suggested that I might have fibromyalgia or irritable bowel. It was not until I had a raging bladder infection that I was diagnosed with a neurogenic bladder. I underwent the panel of urodynamic tests that determine if the bladder has emptied fully. I was told that my bladder was not contracting well; it was “underactive” and I would need to use intermittent catheterization to urinate for the rest of my life.

I was numb with shock and overcome with a myriad of emotions, including humiliation, depression, and pure shame.  How could I fess up to the fact that my problems were due to my bladder?  Who talks about bladders?  They are a forbidden topic.  Never in my wildest dreams would I have equated my physical and emotional symptoms with my bladder and its deficient state.

New medical diagnoses affect each of us differently, but the reality of dealing with a chronic health condition is wearing at best – and devastating for most. It is not going to heal; it won’t get better. It is my new state of being.

After receiving a neurogenic, underactive,  bladder diagnosis, I dealt with a daily change in routine, in the form of clean-intermittent catheterization. Others might, if temporally bedridden, use an indwelling catheter or Foley catheter. Some are confronted with possible surgical solutions, which may or may not be successful, and while trying to maintain a semblance of normality, the very real challenge is to avoid chronic urinary tract infections (UTI).  Why? By emptying the bladder manually, bacteria are inadvertently introduced into the urethra (neck of the bladder) and can migrate into the bladder itself. These bacteria can then start to multiply and result in an infection. Chronic bladder infections can result in kidney damage.  Many times, feelings of despair, anxiety and mood swings can be the result of a bladder infection, even before one knows. Emotionally a person can be caught unaware.

A 2015 study drew a relationship between a percentage of patients with UTI and various neuropsychiatric disorders,1 including mood disorders. Dramatic mood swings (ranging anywhere from sudden lethargy to uncharacteristic yelling) are well documented among multiple sclerosis patients who experience a myriad of medical problems, including neurogenic/underactive bladder.2 A study conducted on roughly 100 patients with spinal cord injury (SCI) showed that emotional and neurological symptoms, including depression, are more likely in women over men (3.8 fold), as well as those unable to successfully catheterize themselves (4.6 times)3 compared to those able to maintain their independence by performing self-catheterization. A smaller study of people with urinary tract infections found twice as many women as men experience extreme mood swings.4

I think it’s crucial to recognize the possibility of associated mental-state changes when dealing with a neurogenic bladder and UTI. If you have been diagnosed, watch for symptoms. Be ready to deal with them, rather than allow them to overtake and rob you further. The state of health care today demands that we be proactive; being our own advocate allows us to maintain our own best possible health. Are you doing everything you can to live your life to it’s fullest?

Share your experience with mood swings due to your state of health with a comment, below and . . . Hang in there!

JoAnne Lake is the author of Beyond Embarrassment: Reclaiming Your Life with Neurogenic Bladder and Bowel, together with Julia Parker, MS, MLIS.  She can be reached at www.trudytriumph.com.

References:

1) Chae JH, Miller BJ. Beyond Urinary Tract Infections (UTIs) and Delirium: A Systematic Review of UTIs and Neuropsychiatric Disorders. J Psychiatr Pract. 2015 Nov;21(6):402-11. doi: 10.1097/PRA.0000000000000105. Review. PubMed PMID: 26554322;

2) Kes VB, Cengić L, Cesarik M, Tomas AJ, Zavoreo I, Matovina LZ, Corić L, Drnasin S, Demarin V. Quality of life in patients with multiple sclerosis. Acta Clin Croat. 2013 Mar;52(1):107-11. Review. PubMed PMID: 23837280;

3) Oh SJ, Shin HI, Paik NJ, Yoo T, Ku JH. Depressive symptoms of patients using clean intermittent catheterization for neurogenic bladder secondary to spinal cord injury. Spinal Cord. 2006 Dec;44(12):757-62. PubMed PMID: 16432529;

4) Urinary tract infection and Mood swings – from FDA reports; https://www.ehealthme.com/cs/urinary-tract-infection/mood-swings/ visited Nov. 17, 2017

 

 

Beyond Embarrassment – Symbolism and Depth of Coverage

Recently two important questions were submitted via the website about our book, “Beyond Embarrassment.” I’d like to take this opportunity to share them with you and give you a bit more insight into what it has meant for me, living beyond my neurogenic bladder and bowel.

The EASY one, relates to our book cover:

Why do you have a leaf on the cover of the book?

The much TOUGHER one,  relates to the depth of coverage of Neurogenic Bowel in the book:

I feel disappointed that you do not have more about Neurogenic bowel in the book; why not?”

Let’s start with the first question – about the leaf on the cover.

The leaf is a fig leaf. I chose this leaf because it is symbolic of embarrassment. It was used in the Bible as what I like to think of as the first cover up!

Here is how the story plays out: NOTE: The snake is talking here, trying to convince Eve to eat the forbidden fruit.

“For God doth know that in the day ye eat thereof, then your eyes shall be opened, and ye shall be as gods, knowing good and evil.”

Both Adam and Eve ate it.“And when the woman saw that the tree was good for food, and that it was pleasant to the eyes, and a tree to be desired to make one wise, she took of the fruit thereof, and did eat, and gave also unto her husband with her; and he did eat.”
Then, the verse where the fig leaf is mentioned:

And the eyes of them both were opened, and they knew that they were naked; and they sewed fig leaves together, and made themselves aprons.”

SOURCE: Genesis 3:5-7 KJV
http://bible.com/1/gen.3.5.kjvhttp://bible.com/1/gen.3.7.kjv

When it came to designing a cover for a book about embarrassment, I thought a fig leaf covered the situation perfectly. The book needed to be covered with a fig leaf because I was sharing embarrassing information about myself.

As for the more difficult question from a recent reader who read and reviewed the book, “Beyond Embarrassment: reclaiming your life with neurogenic bladder and bowel”.

NOTE: This e-mail was received from the contact form on Trudy Triumph [https://trudytriumph.com/ask-a-question/]

Q: “I read your book but was disappointed that you didn’t focus very much on the neurogenic bowel.  It seemed like that was only mentioned as an afterthought.  I can deal with the neurogenic bladder but the bowel issue is my bigger concern and it is hampering my ability to rejoin the land of the living after being diagnosed with and having surgery for a spinal cord arterio-venous malformation.  Doctors just don’t ‘get it.’”

Man, do I feel your pain. The bowel topic was the most embarrassing thing about writing the book for me. Women sometimes discuss their frequent visits to the restroom for their bladders to each other, but never mention the bowel or skid marks they suffer because of the loss of control of their bowels. I sat on a precipice as I was writing. Should I let go of all the dignity I had mustered and be completely honest regarding all the loss of control I now experienced, OR retain a small portion of it and just write about the bladder. I chose the first as you know. So I stand before you as a fighting voice for those with neurogenic bowel, as well as bladder.

Did you know that those who have neurogenic bladder also frequently have neurogenic bowel, as well? No matter what, my goal in writing on this topic has been to be honest with you. I tried to write as much as I knew or could about MY own medical circumstances. I tried to cover my bowel concerns as honestly as I could. I let it rip. I am not a medical professional so I needed to stick to my own medical history, which I admit might be pretty narrow, especially if you need additional questions answered related to your own experiences, which I did not touch upon.

I have suffered even more indignities due to issues related to my bowel, recently. Over the winter, just a few months back, I went to the Emergency Room, with what I thought was an appendicitis. I was wrong. It was a bowel blockage. So painful! But worse than that, I had lots of problems getting my bowel working for a month or so afterwards. I was “grounded”, so to speak, from many activities that I really enjoy. In the midst of dealing with it, I called my doctor. He said take “this” and “that” . . .  but what I really wanted was “coping strategies” and advice on how to live my life. I felt so frustrated. Honestly, I felt abandoned by him.

I understand the frustration with either a sluggish or leaky bowel – one that is so temperamental and stops behaving as it did when I was young, with the least little change in my routine or diet. I ESPECIALLY wish this part of our disability was not the butt of jokes.  My wish is that we can have an honest conversation with one another — to help each other deal with it.

It could be that my symptoms are simply not as severe as the reader who asked this question. Perhaps we could use this post as an opportunity to open up to a broader conversation on bowel disorders due to a neurologic origin.

Let’s not let our bodies hold us in bondage, or allow bodily functions to limit our potential or chance to experience the richness of life. Please share your strategies/routines for coping with bowel function and getting through the day-to-day, and especially how you ensure you show up on the days you’ve set important goals and/or made special plans that can’t be missed.

 

Put Your Trust in your Medical/Healthcare Device Supplier – Your Life May Depend on it

My Back Story

Using a trustworthy medical supplier is as important as choosing your doctor. Let’s discuss issues to consider when buying medical devices online. Aeroflow is one option to consider when selecting a medical device supplier. 

Recently, I had a very big, healthy-life threatening, day-spoiling situation. I ran out the door for a fun day off. I grabbed some of my female compact Clean Intermittent Catheters (CIC) to put in my pocket. When I fly off for a full day, I don’t usually even think about having body parts that are paralyzed or ineffective due to my neurogenic bladder. Because of modern medicine, I live a relatively carefree lifestyle and not a soul even knows that I depend on these devices, except those I have chosen to include in my inner circle. These catheters keep my kidneys healthy by helping me to completely empty my bladder, on regular intervals that I set.

My day can get ruined pretty fast, though, if I do not have a safe catheter. I cannot pee easily without their support. Left to pee on my own, my bladder blows up like a balloon, even if I try to press my urine out, because there is so much residual urine building up in my bladder. “Pressing my urine out” which I did do before my diagnosis, is a totally inadequate option because my bladder never completely empties.

On that fateful day, only too late, I sadly discovered and unfortunately while away from home, that they were faulty. All the catheters I had brought were compromised! The lubricant was discolored, old, thick and gummy, and that I only discovered once I had opened the seal. I unwrapped my sterile compact disposable catheter and noticed that the lubricant that helps guide the catheter into my urethra was gummy/thickened and unusable (see below). [Only once I examined them further, much later, did I find No lot number and No expiration date stamped on them.]

Disappointed, I finally made the decision to leave, because life without the devices I rely upon, is too dangerous and extremely uncomfortable. I was not willing to take a risk and compromise the current health I have been enjoying. After discovering that I did not have what I needed, I just sulked home.

We need Safe Devices

Have you ever pondered upon the integrity of the thin layer of packaging that protects these devices we keep on hand and depend upon, before they’ve been opened?

  • After they are opened, we trust our very lives that the product inside provides a safe and effective result – these tools that we use and hardly consider, after they are part of our life routine . . . especially after years of use.
  • We allow these little devices to prod and poke into areas of our body that are not meant to contain or have foreign objects introduced into them.
  • Because of circumstances beyond our control, they are a necessary & nearly a rote part of daily living.

 

Here are pictures of intact catheters, individually stamped with the lot # and Date of Expiration!

               

Here are some of the defective catheters I found in my shipment – the lot # and Use-by Dates are missing! The lubricant was thick, discolored and did not coat the tip of the catheter as it should, once extended.

       

 

Device Questions To Ask Yourself

  • How old are they?
  • Are the seals intact?
  • Do they look different (have a different color than usual/discolored)?

What to do if there are Concerns

  • Contact your medical-supply distributor
  • Contact the Manufacturer
  • Consider contacting the FDA

 

The FDA

There are regulations in place to keep food and drugs safe. The Food and Drug Administration (FDA) – is the US agency that ensures our health is protected. The FDA regulates ingredients in food and drug products sold in the US (products ingested), but also Medical Devices/Equipment, including catheters. They keep us safe. Did you know that? Have you ever wondered why products in the US sometimes cost more than they do in other less regulated countries? Their mission is to [protect] “the public health by ensuring the safety, efficacy, and security of human and veterinary drugs, biological products, and medical devices; and by ensuring the safety of our nation’s food supply, cosmetics, and products that emit radiation.”

Our Responsibility: To Help Ensure Public Safety

If you have a problem with a device, take the time to report it. You can contact the manufacturer directly and provide the details for a “case study”. The manufacturer can determine many things from the lot number stamped on your device, including:

  • the place of manufacture
  • the day it was produced
  • the machine operator
  • even the time of day it was manufactured

This allows the manufacturer to follow-up and helps them determine if there are ongoing problems that need to be corrected and/or if necessary, issue a recall on specific lots. In addition, the FDA can be contacted and brought into play. Part of their role is to serve as enforcers of safety. Contact the reporting end of the FDA – known as “MedWatch,” if you experience an adverse event due to your medical device. You can reach them by phone at 800-332-1088 or submit a report through the online reporting tool at www.fda.gov/medwatch


Going Forward/Staying Vigilant


What have I learned?

  • All catheters I order and use need to come in date-stamped boxes that include the lot number.
  • I will inspect all the boxes I buy to make sure they are clearly dated and there is reasonable time before their expiration.
  • If I receive product that does not meet my criteria, I will contact the supply company immediately.
  • I will store my devices properly.
  • I will store my supplies such that I can easily determine expiration dates/not pass the Use-By date.
  • I will select devices from different lot numbers when I leave for the day. Then, if I get a bad catheter, I will be sure to have back-up. I can’t afford to become complacent.

 

The mission of Aeroflow encompasses more than selling the medical devices that fill their warehouses.

https://aeroflowurology.com/

You might wonder how I came to know Aeroflow in the first place, if they are not the supplier I have used. The answer is simple. In 2016, I wrote the book, Beyond Embarrassment: reclaiming your life with neurogenic bladder and bowel, with Julia Parker, MS, MLIS. I have found that writing a book is much easier than selling a book or making sure that the audience that actually needs the book discovers that they are not alone – an inspiring/encouraging resource is available. Early on, one of my marketing ideas was to contact medical device suppliers and ask them to add my book to their catalog since their customers are the people who could most benefit from reading my story. I contacted a huge number of medical device dealers. However, finding the right CEO who would take time out to listen or even ensuring your request reaches a real person is hard and arduous. I was, however, able to find the right person to talk to at Aeroflow.

  • They are in business to serve and nurture the spirit of those to whom they provide service — those living with serious medical conditions. I thank them for that. They happily put my book in their catalog, as a resource to those living with bladders that require assistance to work properly.
  • One of the ways they do this is by making real people with real medical situations part of “peer support”. They offer real life stories from their patients to encourage others. They know that our condition is not easily shared and support is key!
  • Medical suppliers are a part of my health team. I need to use a medical supply company in which I am confident they take my best interests seriously.
  • Aeroflow Healthcare is a good option in obtaining safe medical devices.
  • It offers free shipping to your door.
  • Can be paid through your insurance.

 

What do you think of your device distributor and the manufacturer?  Do you have comments/suggestions that might help them provide you with better service?

 

Additional Reading

Code of Federal Regulations (CFR) – are the books that spell out US law. The legal authority specifically which regulates catheters in the US is contained in CFR Title 21 Sec. 876.5130

TITLE 21–FOOD AND DRUGS
SUBCHAPTER H–MEDICAL DEVICES | Subpart F–Therapeutic Devices
GASTROENTEROLOGY-UROLOGY DEVICES (PART 876)
Sec. 876.5130 Urological catheter and accessories

Part of FDA regulations require that manufacturers with new invention designs meet safety requirements & efficacious product approval guidelines, that must be applied for and reviewed by the FDA, before they go on the market.

But it doesn’t stop there. After approval, manufacturers must continue to prove they are manufacturing safe products, under controlled conditions and maintain Good Manufacturing Practices (GMP). They must pass audits and maintain their approval by submitting the requisite annual registration user fees. Manufacturers develop compliance programs to reduce risk to their patient-base and build a relationship of trust.

Medical Device Information for Consumers – the FDA ensures that you have access to the information you need to understand the science and medical reasoning behind the devices it regulates so you can make informed health decisions. So, not only does the FDA regulate manufacturers, but they serve to interact and educate the public, “the consumers” who use them: both you and I!

“This post (published 3/14/18) was sponsored by Aeroflow, as part of the ‘Chronic Illness Bloggers Network'”

Sexual Intimacy and Neurogenic Bladder

Sometimes I get questions that make me feel emotional. This one did because I was invited to consider her very private confession, one that affects so many of us. I cried because she wondered about her “self worth”. The journey we travel is hard; I will not lie to you. Like the fighters we are, we must continue to believe we have purpose and carry on. We can’t give up on ourselves or the people we love.

Question From Reader

Hello Trudy!
I am a 47-year-old woman who has Multiple Sclerosis (MS). I have been struggling to self-catheterize for three years, now. I have had good nurses who have taught me how to do the procedure. I just find it mentally so tough to do. It has affected my sex life with my husband and my personal feelings of self worth. What is wrong with me?

Trudy’s Answer

Dear Reader,

Thank-you so much for sharing such raw personal feelings and concerns with me. I, too, have had similar doubts and concerns, such as how my spouse and I would continue in our marital life, especially during moments of intimacy, with my new adjusted normal, equipment and all. I think I said it best in my book, already. So, I will share an excerpt with you. This section from the book might help you to see/understand that you are absolutely not alone. You AND your spouse most certainly have an adjustment, but, one that is well worth the effort.

 

From the book, Beyond Embarrassment: Reclaiming your life with neurogenic bladder and bowel

Conceivably one of the areas of life most affected by Neurogenic Bladder is sexual intimacy. When I was first diagnosed, I was afraid to have sex. Because I was new to using a catheter, I was sore in that area anyway. The last thing I wanted was any more activity that would irritate already inflamed tissue. And cathing was not like using a tampon during a menstrual period. It did not intrude on five days a month. It happened several times a day, every single day, stretching out into eternity.

The truth is I was losing my sense of identity. I’d always thought of myself as a healthy, active, sexy wife. But feeling sexy when I was in pain and struggling to get used to catheterizing myself was more than I could handle most days. It took all I had to paste on a smile and tell myself, “You are sexy!”

Sometimes I wondered if the diagnosis of Neurogenic Bladder and Bowel would ultimately change my marital relationship. Would this disease affect my nerves to the point where I never experienced the bells and whistles of orgasm again? When would the next shoe drop? What would I lose next? Would I lose the ability to weep with pleasure? When my husband got that sparkle in his eye, I wanted to cry. I felt broken and already used. Perhaps I felt raped by the stupid catheters. I did not want to traumatize myself further.

Bladder infections were the bane of my existence, and I wanted to avoid them at all costs. So much medical advice stressed that people who got frequent bladder infections should urinate after intercourse to flush any bacteria out of the urogenital cavity. Well, what if I had to catheterize myself? How did that help? Would sex make things worse?

I was too shy to discuss these issues with my doctor, something that would have ultimately made this transition much easier for me. I did not want to draw attention to my concerns regarding sex and my sexuality. Maybe, on some level, I hoped that, if I did not talk about my personal health issues, even with my husband, I would figure it out on my own, or they would just disappear. Of course, I did not, and they did not, either. So instead, for too long, I lived alone with my fears and questions.

The thought of getting a bladder infection from having sex caused me to shut down. Instead of being pouty because of the rejection, my husband patiently — and I cannot emphasize enough how patiently — pressed on. I was so afraid of getting sicker. I felt like saying, “I already gave at the office, so leave me alone.” It was the worst sort of mind game.

Fortunately, my husband and I were able to trust each other about this, too. Because of his loving nature and openness to my concerns, he helped me to express my fears and be honest about what I needed from him in order to be comfortable having sex. We discussed issues of hygiene that are so important when dealing with Neurogenic Bladder. We talked about how almost constant pelvic pain made it more difficult to find that sweet spot and how it might take longer to warm up. In addition, I realized that I needed to be careful about overthinking issues. If I allowed fear to control me, I might be alive, but I would not be living.

This particular excerpt comes from the first part of my book-chapter that covers sexual intimacy. There is so much more I have to say on the topic. I encourage you to read the entire chapter: contact your local library to check-out the book or ebook or have them borrow a copy for you.

The bottom line I want you to know is that “No, you are not unusual”. Everyone of us who has started daily catheterization has a lot of new issues they’re struggling with and I can imagine how many additional concerns you have with your MS diagnosis. I want to encourage you and also challenge you! You have to assume the role of a soldier, one who fights for your husband and marriage. Sometimes this situation seems bigger than we, are but please remember that communication is Key. Try your best to be sexy; have Faith. Start by being open to lovemaking and take it slow. You are more than your broken body; you are beautiful and sexy: a vital young flower. Remember it all starts with that first step.

Please write back and let me know how it goes.

How do the rest of you maintain a vital sex life when your body feels broken and perhaps undesirable?

Urogenital Fistula Results in Bladder And Bowel Problems

I want to take a break from writing about my neurogenic bladder and bowel issues in present-day U.S. (with all the comforts, cures, latest devices, assorted antibiotics, and medical treatments available to us).  I would like to now put the spotlight on my sisters, in developing countries, who suffer from a far more humiliating and 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  It is tragic.

Untreated/uncorrected vaginal fistula is very uncommon in the U.S. and Europe.  It can be caused by a wound, radiation therapy, and the like.

Because I write about bladder and bowel problems I find it so interesting that there is actually a very old account of fistula found in the Bible.  I will get to that story in a moment but for now, please understand that bladder and bowel problems have many causes/sources and those causes have been around since the fall of man.

The definition of a fistula is the unnatural connection of two “alien” organs. An example of a type of fistula is a tear that connects a woman’s uterus and bowel, or a bladder and a bowel. Fluids from one organ can seep into another.

Vaginal fistula can also be caused by vaginal force either by a difficult delivery, a violent rape or surgical incision.  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 very young girls to marry. When girls are too young to give birth, their pelvis is not fully developed. The labor can be prolonged, even up to several days. The baby often dies during the long process and the damage may include a torn bowel, bladder, vaginal wall or even a broken pelvis, which is profound.  The brokenness/damage often goes unrepaired and the girls become outcasts! The constant foul smell that is with them due to infection and/or the leaking of feces and urine can haunt them for the rest of their lives, if it goes untreated.

A bladder fistula (connecting the bowel and bladder) can cause the urine to smell and contain/looks like poop, because there is no barrier between the two body parts. If the tear involves the uterus of a woman the friseur can cause constant hemorrhaging. When organs are open and not working as healthy individual units, the result can be devastating to the woman who struggles just to exist from day to day. Besides bladder and bowel problems, the problems just escalate from there . . .  infections are a constant struggle and blood hemorrhaging can also occur, which as you may imagine can lead to it’s own problems, including weakness, anemia, etc.

If you feel isolated, I want you to consider the woman in the crowd . . . a woman described in the Bible, a book that has been a major influence in history, laws and literature. As long as women have had babies and endured rape and other forms of trauma to their urogenital tracts, women have been broken and become social outcasts.

Here’s how the Bible describes one such woman:

25 And a certain woman, which had an issue of blood twelve years,

26 And had suffered many things of many physicians, and had spent all that she had, and was nothing bettered, but rather grew worse,

27 When she had heard of Jesus, came in the press behind, and touched his garment.

28 For she said, If I may touch but his clothes, I shall be whole.

29 And straightway the fountain of her blood was dried up; and she felt in her body that she was healed of that plague.

30 And Jesus, immediately knowing in himself that virtue had gone out of him, turned him about in the press, and said, Who touched my clothes?

31 And his disciples said unto him, Thou seest the multitude thronging thee, and sayest thou, Who touched me?

32 And he looked round about to see her that had done this thing.

33 But the woman fearing and trembling, knowing what was done in her, came and fell down before him, and told him all the truth.

34 And he said unto her, Daughter, thy faith hath made thee whole; go in peace, and be whole of thy plague.

—Mark 5:25-34 KJV

For twelve years, this woman had tried repeatedly to find help and healing. We don’t know exactly what was wrong with her, other than that it involved hemorrhaging, but many of us can relate to what she experienced. Nothing seemed to help. Money was spent with little, if any, positive results. Her condition seemed to be getting worse. In her society, a woman who was bleeding in this way was ostracized, an outcast, avoided, because she was unclean.

Rather than giving up, she persisted in seeking help. When she heard about Jesus and the miracles he had performed, she left her home to seek him out, risking public rejection and humiliation. The story tells how Jesus publicly recognized her faith and healed her.

Whatever the particulars of our situation, it is important to follow the example of the woman in the crowd.

  1. Reach out for help
  2. Do not stay home and brood
  3. Be brave and bold
  4. Take a chance

 

Further Reading – Our Research Sources

1: “Fistula,” Wikipedia, last modified March, 15, 2015, http://en wikipedia org/ wiki/Fistula

2: Intestinal Complications accessed 07/31/2015, http://www ccfa org/resources/ intestinal-complications html

3: Arrowsmith SD, Ruminjo J, Landry EG “Current practices in treatment of female genital stula: a cross-sectional study,” BMC Pregnancy Childbirth (2010
Nov 10) 10:73 PMID: 21067606; PubMed Central PMCID: PMC2995487 doi:10 1186/1471-2393-10-73         https://bmcpregnancychildbirth.biomedcentral.com/articles/10.1186/1471-2393-10-73

4: Murray C, Goh JT, Fynes M, Carey MP “Urinary and fecal incontinence following delayed primary repair of obstetric genital stula,” BJOG 109, no 7 (2002 Jul): 828-32 PMID 12135221

5: Browning A “Risk factors for developing residual urinary incontinence after obstetric stula repair,” Br J Obstet Gynaecol, 113 (2006): 482-485  http://onlinelibrary.wiley.com/doi/10.1111/j.1471-0528.2006.00875.x/epdf

 

Taken from, Beyond Embarrassment: Reclaiming your life with neurogenic bladder and bowel.; pages 122-124. 

By JoAnne Lake with Julia Parker, M.S., M.LI.S.

 

 

 

Consider the Risks before Surgery

Women contact me regarding surgical procedures they are contemplating. I tell them that I am NOT a doctor . . . just a gal who is trying to figure life out, like everyone else. Desperate women ask me about Interstem, mesh inserts, so many questions . . . that if I am honest, I would tell them that only God knows.

Today, I am reposting words from my original post of April 25, 2013, below. I re-opened this past musing and started to try to rework the words to make them more current. I thought I would just try changing it around a bit, to help those currently contemplating surgical procedures. After reading it, though, I stopped in my tracks. I could not change it because the original words bleed with the raw emotions I felt as I understood for the first time that my neurogenic bladder could have been caused by a surgery that might have been preventable/avoidable.

There are risks and benefits to ALL procedures. My own personal story is a good example of this. I bled and bled all those years ago, while I was trying to come up with a solution to my pelvic woes. A hysterectomy sounded like an easy fix. I am here to say surgeries ALWAYS have risks. Consider your options with your eyes wide open. I am sure that the paper work I signed included a clause that I risked losing the complete function of my bladder and/or bowel. I was not paying close attention to all the risks. I was sure I was ending the current problems I was experiencing and then All would be well.

Ladies, please consider ALL the risks.

My post from long ago . . .

I opened a book this afternoon and after reading a certain section, I released an audible sigh.  I realized for the first time that my neurogenic bladder and bowel could have possibly REALLY been caused by the vaginal hysterectomy I had in 2000.
At the time, those many years ago, I felt so desperate. My periods were lasting longer that 3 weeks at a time and the flow of blood was making me weak. To say I was desperate is an understatement. My doctor had retired, so I was not seeing a physician regularly. I know now that it is not such a good idea to be without a person overseeing my medical care!  What I should have done is gotten started with a new doctor right away. One of the best things we can do for ourselves is to go to consistent, yearly, well checks. Perhaps, in my case, things would not have gotten so out of hand.
I went to a new OBGYN who was not recommended to me. Her office was near my home. After I described my symptoms, she ordered an ultrasound. The results showed that I had fibroid tumors.  She suggested that I have a hysterectomy. I was so ready to have the tired feeling and inconvenience over, that I would have offered up my first born child. A hysterectomy sounded like a piece of cake!
First I went in for shots to shrink the tumors and after a few months of shots, I went in for a vaginal hysterectomy. No need for an abdominal incision, an easy pass through the vagina would do the trick. I was relieved to hear that because the recuperation time would be minimal….They would go in and take my uterus and the cool thing is they would also take my cervix and from that point on there would be no need for pap smears.  How easy!-(?????)

DID I CONSIDER THAT I MIGHT HAVE CONSEQUENCES THE REST OF MY LIFE?

Quote taken from;  A Woman’s Guide to Urinary Incontinence

A John Hopkins Health Book
By, Rene Genadry, MD Jacek L. Mostwin, MD
The Effects of Hysterectomy on Incontinence  (Not all parts are quoted)

The vagina and bladder share some nerves and surrounding muscle and ligament supports. The greatest potential for negative effect on the urinary system after a hysterectomy comes from damage to the nerves which extend toward the bladder, since they are detached when the cervix is removed. When the cervix is removed it is LIKELY that nerve damage will occur because the ligaments of the pelvic region are cut during the operation. Some women will develop incontinence soon after or several years after the operation.

I experienced a flood of emotion after reading this, because it also mentioned in the book, that only in severe circumstances should a woman’s cervix be removed. I do not consider fibroid tumors being extreme, but now you know and so do I. For years, I experienced stomach aches as my bladder stretched and stretched. Now I know there is a strong possibility this could be why I have a neurogenic bladder and bowel…Well maybe…

The other part to all of this is the lack of information I found on Google and Bing to go along with/support this section of the book I have shared with you. In every article I read on the internet, the consequence of the removal of a woman’s cervix, mentioned the risk of not attaining orgasm, but not that the danger of cutting nerves and ligaments could cause neurogenic bladder and bowel. Agreeably, orgasm is important. I find it interesting that the orgasm feature was the “biggie” with these reports.
We live in a man’s world, girls. I guess in medical literature, priorities are made.
In my lifetime time there have been many bad ideas, health-wise, masked as the miracle cure. All the procedures for male prostate issues that are passing by the way-side. The sling, my goodness, there are so many suffering from consequences of that one! I guess we are trying to do what is best and slowly moving forward.
It just kind of makes me melancholy, thinking that perhaps things could be different. I could have had a doctor who handled the surgery differently.
What if . . . .
Well, I suppose I wouldn’t have met you . . . and I am so very happy to have met you!

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