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:
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🌹
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.
It has been awhile and for that apologies. Let me share a note with you:
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,
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.
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.
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.
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.
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?
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?
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.
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.
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 eyelid was swollen 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 only heat on my 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 that I 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 developed resistance to so 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 with regard to 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 to the antibiotic I am taking to fight chronic bladder infections. He also cautions me to look for a rare side effect, which is a build-up in my lungs that can cause pulmonary fibrosis.
How do you handle acute situations while living with a chronic illness?
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.
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;
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.”
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”.
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.
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 Nolot number and Noexpiration 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
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.
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?
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'”