This excerpt from my book Beyond Embarrassment is such a perfect example of a doctor going through the motions of an exam and me not asking enough questions at the end of the exam. I hope that if a situation happens to me or even you in the future, we take the time to get the important answers. We need to understand how to advocate for ourselves.
From the book..
During my yearly physical, I have blood drawn for various tests. The physician listens to my heart, looks in my mouth, and checks my weight and height, blood pressure, and other statistics. She checks over my whole body to make sure nothing is developing that needs my attention. My bladder, bowel, and nervous system are not a big part of this appointment. But there are times when I need to remind my family-practice physician that my body reacts a little differently than that of the “average” patient. I need to advocate for myself.
During one routine physical, the doctor felt my ovaries as part of my pelvic exam. As a woman, I need to be aware of the risks of ovarian cancer. The American Cancer Society estimates that, in the United States in 2014, about 21,980 women would receive a new diagnosis of ovarian cancer and that about 14,270 women would die from it. So as we went through the pelvic exam, I was listening carefully. The conversation with my doctor went like this:
One of the symptoms of ovarian cancer is constipation.
Well, since I have a Neurogenic Bowel, I am always constipated; my bowel is chronically sluggish.
The other symptom is feeling bloated.
Since I am chronically constipated but use stool softeners, the bloated feeling is not foreign to me.
Discomfort in the abdomen is another clue.
There are a lot of reasons that I get twinges of pain once in a while. It is just a way of life for me.
My ovaries were tender after the exam, which is another symptom of ovarian cancer. But the topic was dropped, and, quickly, we were onto the next body part.
As much as I like my family-practice physician, I felt like my doctor forgot that I had some nonworking parts and did not really understand that my body had its quirks. As I left the appointment, I wondered if I should have persisted and asked how I can know if I may have ovarian cancer, given that the usual symptoms occur as part of my daily experience with Neurogenic Bladder. I discussed the situation with my urologist, and she suggested that I work with her in the ovary department.
My point in all of this is that, no matter how well we get along with our doctors, we need to prepare for our visits with them, because even “normal” issues can be more complicated when combined with the symptoms of any chronic illness.
Are you prepared for your next doctor’s appointment to advocate for yourself?
I’m starting to urinate on my own after 5 months of a neurogenic bladder.Mine was caused by a viral infection of my brain and spinal cord. My diagnoses were Acute Disemminated Encyphalomyelitis and Transverse Myelitis AND Meningitis.A pretty big attack to survive of my nervous system.I’m happy to share that I am no longer partially paralyzed and even was able to ski in my yard recently!Here’s my question.My Urologist, while nice and had great credentials, is really not much help.I asked her if there is any information online about what it’s like when a neurogenic bladder starts to heal and she said no.Nothing on line because no one knows and if there is anything, it’s probably wrong.I asked her what I should be doing, as I’m still cathing and retaining, and she told me, each time I get the urge, I should urinate and then cath the rest out, not retain and then try again in 10 minutes.She was surprised that I hadn’t been given a “hat,” to measure and told me to come get one at her office.what I really want to know, is what can I expect now that my bladder and nerves are really healing?The doctor also told me to make sure I’m not peeing more than 500 at a time.And, I need to keep cathing until I’m only getting 50 or less out.She said if it’ doesn’t heal to that point in 2 years, it probably won’t.Of course, I’m ahead of schedule with my healing.My prognosis for a full recovery is 6 months to a year or longer.
Thank you for your question. I am sorry for your loss and at the same time let me welcome you to our club. We have a condition that is hard to talk about, and people feel free to make jokes about, so luckily we have found each other. Together we can educate.
The sole purpose of this blog is to offer emotional support for the loss of bladder and bowel function. I am not a medical professional so some of your questions I cannot answer because I do not have that kind of knowledge or expertise. I just know what I have gone through myself and what some of the readers of this blog and my book Beyond Embarrassment have shared with me.
For myself I was told by my urologist that there was a chance my function would come back, but it never did. Unlike you, I cannot pinpoint the cause or time my unfortunate event.
I started this blog because like you, I was so hungry for answers. I searched for comments to give me comfort, and I wanted to converse with others.
There are many levels to nerve damage. Some of us need to watch the clock and cath on a schedule, so we do not allow the urine back up and stretch or ureters. This can cause problems with our kidneys. That is probably why your urologist wants you to measure your urine output. I feel full only when I am dangerously full.
As far as healing and the possibility that you will regain your ability to urinate on your own, time will tell, just like your urologist has said. It is also possible that over time your bladder will stretch like a over tight balloon. Did she mention that your bowel can be affected by this as well? For some reason the urologist I went to, in the beginning, did not tell me this. For years I struggled with an underactive bowel, not understanding that it was a permanent condition for me. If I went for long hikes, I would have an accident because I did not understand that my sluggish bowel would build up in my gut, and by exercise it was finally allowed to expel. Now I understand that if I exercise and eat raw vegies and fruits, I am safe if I have a BM in the morning before I start my day. Pay attention to this, because often when the bladder nerves are affected, so is your bowel.
I think a big part of your question is the plea for medical professionals to write more for us so we can learn more about our condition. Unfortunately we have a condition that is not a casual conversation. Writing a letter to Aunt Betty and to tell her about my bowel and bladder function is just not done.
If you are a medical professional please write to us.
Some suggested topics are:
1. Does bladder and bowel function come back when the ability to walk comes back or are they separate? Are there statistics? What are our chances for FULL RECOVERY.?
2. Are there hospital support groups being considered for those with inadequate bowel and bladder function? Where do patients go to have my very personal questions answered?
3. Is there anything we can do to get our damaged nerves back?
4. What are the best products to use? Please write more about the different types of PRODUCTS, catheters, diapers, swimmers, pads that we can use. We as consumers want choices.
All the world is full of suffering. It is also full of overcoming.
Have depression? What you can do to help.
Many years ago, I was diagnosed with neurogenic (under active/paralyzed) bladder and bowel. Because the unfortunate tidings were hard to accept and process, journaling and blogging became my routine. On the web, my pack and tribe came alive. Being part of a group of lively people is so important. Together we trade advice on how to live a full life, get through the work day, live an active existence, and take what is dealt, with our pride intact. Embarrassment during that adjustment period, in the beginning, became part of my life, at least at first. Amazingly after the initial shock wore off, I rallied to the news. A new protocol was for me. Being a casualty of this crazy condition was not a path I wanted to go down. I made a choice to be open about my physical condition.
At times, I live with depression which is like living with an invisible tiger. He bites and claws at me; sometimes he is quiet with just a little nudge that lets me know he is there. At low points, he is persistent and hard to shake off. Luckily, sometimes he leaves. He is a secret in my life because of the shame his presence brings. My life experience is full of abundance. He cannot stay if my heart is grateful.
To outsiders I had a perfect life. My depression and paralyzed body parts were not only hidden, they are hardly ever talked about. Although my positive self-image was (still is) normal, I continue to deal with medical complications because of having broken and paralyzed parts. For years, a mantra filled my head: “Class and beauty do not equate to bowel and bladder control.” Sincerely I believe this. Yet the grueling part for me were the back to back bladder infections, a common hazard of using a catheter to empty my flaccid bladder. The brutal feeling of bladder infections caught me off guard: a twinge of discomfort in my bladder and general feeling of malaise. OK, that is saying it nicely. The feeling that I could punch a hole in the wall is more like it. I pushed through the pain with a positive attitude. Being the model urological patient was a high priority for me. Following the doctors’ orders was (still is) important. I developed a support system through writing this blog. I had the coping skills to handle my medical condition, most of the time.
For a while all was well. The tiger who strove to steal my life, took a break.
Shocking news came my way. It was hard to rally a second time.
Last year, I was startled by a new declaration, made by my doctor: antibiotics would now be my companion for the rest of my life. The doctor went on to explain to me that I was now classified with third stage kidney failure. Risk-taking is not allowed. Youthful indiscretions are forbidden, because fourth stage kidney failure means dialysis and getting ready for a kidney transplant. The visits to my beloved urologist of many years became less frequent. I was introduced to a new type of doctor, a nephrologist. Who ever heard of that? Kidney doctor is easier to say, don’t you think? Nephrologist! Give me a break! A new doctor. The word is difficult to pronounce; it gets caught in my mouth.In one single, life-changing doctor’s appointment, my school girl, fresh as a pea image of myself, was shattered. I saw myself as frail. My world was rocked off kilter.
Suddenly, my invisible tiger came out and clawed itself miserably to me. I could not shake it off. Days and days went by and despair become my constant companion. What I knew was stripped away. The new doctor, a new protocol, caused the tiger to return, so fierce that he tried to make a permanent home. The tiger then held fast for months, regardless of what I did. Through coffee time with friends, hiking beautiful hills, whatever I wanted to do, he gnawed through my flesh and caused a bleed that made me weak. No words popped into my head, as they once did. If they tried, the tiger ate them up. The tiger stole my voice. The prose was gone. The tiger sat on my shoulders then and acted brave. He became obvious to those close to me; he did not even try to hide.
Temporarily buying shoes helped. Cupcakes, warm, flying straight out of the oven, would upset my stomach. Old friends’ voices felt good to hear, but I did not share my secret. Nothing of what I really wanted to say was said, because I was ashamed at giving into my fear. Nothing helped. What to do?
Ready for a change, I took the first step looking outward. I broke free from despair.
At wit’s end I decided to volunteer at a rescue mission on Sunday evenings. Why not? I needed to fill my time and I was losing interest in feeding the power-hungry tiger. That simple decision changed my life. Volunteer work for me, in the past, had been enjoyable but for the last few years I had become lethargic in my civic duties. When we drove up to the mission for the first time, the bright colors of the building were pleasing to see. The dinner of fried chicken, corn, biscuit, salad, and cookie was ready to be plated. Many, many plates. Chicken server extraordinaire duties were mine. Using tongs, making the decision of who got what, took thought. The importance of my role to decide who got what took all my concentration. Being a mother of four children I understood that the piece of meat and the impartialness of the allotted combinations was important. Suddenly, my concentration was on chicken parts. Not my body parts. My body felt warm. My back pain was slight. I was pleased to see hunger replaced by fulfillment. My feet hurt a bit, but where my kidneys are housed, in my back, forgotten.
There was no clawing at my heart and forgotten emotion filled me. At that moment, there was no room for the tiger.
I noticed and really appreciated my life for the first time in months.
Gratitude filled my being. The feeling of appreciation for the small things in life caused contentment and that warm fuzzy feeling felt well with my soul. For so long I was blind to the important things in my life. I have a roof over my head. I can eat whenever I want. I have a family to go to when I need help. Now my outlook became sprightly. What a sheer relief I felt as I walked out of the mission on that first day. Every day I need to remember that the small things in life are the most important. Being the center of my universe does not make me happy. Looking outward is more pleasurable than looking inward.
My thoughts turned outward, which starved my tiger. For a wonderfully long time he simply disappeared.
Epilogue: I wrote this essay last year and I am happy to say that my kidneys are doing much better because I am taking a daily dose of antibiotics. Depression is real for us because we live with setbacks. This holiday season my suggestion to you is to give to others and seek help if you need it. If you need help getting through the season, please seek help.
Here are some USA numbers that might help, if you feel desperate.
Now I am bold when it comes to my health story. This attitude is new to me because I have not always felt this way. At first I was horrified, then very embarrassed by my diagnosis of neurogeneic bladder.
After trying to learn more about this difficult condition, I felt frustrated because I could not find the information I needed on how to live a normal life. I started this bolg as Trudy Triumph because was ashamed of my broken bladder and bowel and I needed a friend to talk to.
I found you.
Much later after I decided to write the book, Beyond Embarrassment, my editor asked me to write about the hardest day ever.
This first sentence of the first paragraph of the book, was my horrible day story, because I did not want anyone to know my medical secret. I was ashamed.
And if you work at a school, you understand it is a bit like working in a fish bowl..
From the book, Beyond Embarrassment:
“We are all faced with a series of great opportunities – Brilliantly disguised as insoluble problems .” —John Gardner
That Monday, I came to work full of trepidation. I had become exasperated over the weekend as I fumbled and said words that I should not have said, all because I had spent long hours in my home bathroom learning to use a woman’s intermittent catheter. I cried several times out of the sheer frustration. My new toileting routine took so long. I felt like I had been given a life sentence to a porcelain throne. Today would be my first day to use a catheter at work. I had only minutes to find a private place and wash my hands; only then could I struggle to unwrap the lubricant, unwrap the catheter, and then finally find the small orifice on my body to insert it. Thinking about finding that spot on my body made me sweat, though the day was cold. Walking through the halls of the high school that day, I felt like a freak.
I chastised myself for drinking the extra cup of coffee at daybreak. There was little time to catch my breath let alone use the restroom, even on a good day. Worrying about how I would manage emptying my bladder within a fifteen-minute time frame was not what I wanted to think about as I started my day. Location was the key. I ruled out my initial idea of the nurse’s room, even though it had a larger area and a private sink. I worried about the long line of staff and students that might form while I took such a long time. What if someone got sick and needed the bathroom? No, I would use a quiet, private restroom upstairs. The door was usually locked, so it would be perfect.
At the start of my break, I sprinted up the stairs, and, at the top of the flight, I ran into a friend, just starting her break as well. The unending conversation continued. I wanted to lose her and take care of business. It was clear that the discourse was not going to stop, despite the fact that I gave her little encouragement. She followed me to the door and watched fascinated as I unlocked that coveted vacant restroom. I was stunned as she lightly said, “What a good idea to use this rest-room. I’ll go after you.” What could I say other than, “No, please, go first.” Disgraced, I slipped back into the classroom tardy.
I would like to be part of a support group of neurogenic bladder. I am very concerned about it as far as the urologist advised me to self-catheter twice a day. I am in shock. My husband is helping me right now but I have to get used of it. Also I am afraid that doing two catheters a day I will not able to do by myself. My bladder is working but obviously it is not doing it well. I have a lot of retention. I am very, very sad, and to read your blog made me think that not everything is lost. Forgive my English, I am Spanish speaking, and I live in Israel. Thank you if you can get in touch with me, thank you very, very much!
Thank you for your email. You are exactly who I write the blog for. I agree, the diagnosis is devastating. I felt so compelled to start this blog because I felt as you do. You are very fortunate to have found out. I suffered for years before I discovered that my bladder was the size of a large melon.
As far as support groups, I am on one, on Facebook. It is called Neurogenic Bladder and Bowel. I have tried others and they have not worked for me as this one has. It is a closed group, so ask to join.
This group has helped keep me sane. Not long ago I woke up and felt complete fear. I had a busy day, I was constipated (often if you have an underactive bladder you have a underactive bowel as well.) I had bladder pain and I was off to a substitute job at a nearby school. I was not sure how I was going to pull the day off. I sent a post out to this Facebook group and really let it rip..whaaa, whaaa, whaaa, you know what I mean? I was willing, but my body was weak. It just felt good that there was a group of folks out there who understood how I felt. I received the sweetest comments and wonderful encouragement. I agree, support groups are important.
You did not mention your physical limitations in the email. Are you physically able to cath yourself? It is easy to learn. You will become more independent. Also, it might be better for you to cath more than twice a day. Talk to your doctor about this. If you are able, I promise you will get used to using a catheter. I use a small compact cath and use it about 4-5 times a day. I sit on the toilet, as I use a catheter.
I do not use a mirror because there is no need to.I find this funny because I am sure a male urologist suggested that women use a mirror. Men can see their parts. Perhaps whoever suggested that we use a mirror (a male I would bet money on) could not imagine that seeing is not important to us. We women were born with a three dimensional road map and have never seen our private parts. We need to feel. We do just fine without a mirror.
Bladder infections, are the hardest part of an underactive bladder, for me. They happen at inconvenient times. Using a catheter is not perfect and it leaves us susceptible to them. This is something that we live with, but the good thing is, we live. Perhaps we have broken bodies. All do really. What is not broken is our soul. We have a lot of living to do!
You are not alone. There are many of us that lead happy, productive, good, lives. Many children learn to use catheters too. Now you are part of our club. Welcome.
An Excerpt from my book,
by JoAnne Lake (this is my real name) with Julia Parker
So, here is how to insert a catheter without looking. The key is to understand the anatomy in the female genital area (vulva). The clitoris kind of stands out on its own. The vagina is the large opening behind the clitoris. The urethral opening is between the clitoris and the vaginal opening. I start by washing my hands with soap. The catheter I use is self-lubricated, so that takes out a big step. If I accidentally touch the tip of my catheter with my hand or another object, I throw it away, to prevent infection. I do not clean my labia at the time of insertion, since I shower once a day. My urologist told me it is not necessary, anyway. There is another school of thought, and that is that cleaning your labia with an antibiotic solution before using a catheter is best. My thoughts on this vary. I know there are bacteria in the labia, but the stinging that can happen if I had to put a solution on my labia six times a day makes me “ouch” just thinking about it. For advice about this, ask your doctor.
After washing your hands, gently press the catheter in the area between the clitoris and the vaginal opening, and soon you will find the spot. There is definitely an opening, which will become apparent as you probe gently. It will happen, I promise. After I use my catheter, I throw it away because reusing catheters can cause bladder infections. If at all possible, I suggest you use a single-use catheter.
Occasionally we are fortunate enough to have a guest.
Michelle Llamas is a blogger from Drug Watch
We all rely on drugs and medical devices to improve the quality of life for us and out loved ones. But sometimes drugs put device companies put unsafe products on the market, ones that give us conditions that are worse than what we needed treatment for originally. When that happens, Drug Watch is there to help.
Doctors are people too, and even those with the best intentions might not always understand how a drug, medical device or surgery can affect some patients. For this reason, it is always best to be prepared when visiting your health care provider.
When faced with a neurogenic bladder, doctors may offer a few treatment options to patients. Any treatment that promises a better quality of life can be attractive. But, while some of these treatments may offer benefits, they may also harbor unknown risks. In the case of neurogenic bladder, doctors may recommend fluoroquinolone antibiotics for chronic urinary tract infections or a mesh bladder sling for incontinence. Studies have shown that while there are some benefits to these therapies, the side effects might outweigh them.
Here is some information on these two treatments that can help you be your own advocate.
Fluoroquinolones are the most commonly used type of antibiotic in the U.S. They include drugs such as Cipro (ciprofloxacin), Levaquin (levofloxacin), and Avelox (moxifloxacin). The most popular of these drugs is Cipro and it makes up 80 percent of all prescriptions. These drugs are popular because they treat a wide variety of bacterial infections. It is the preferred treatment for urinary tract infections (UTIs) and bladder infections. But these drugs also come with a long list of side effects.
For individuals who already suffer nerve-related conditions like neurogenic bladder or bowel, these drugs can be catastrophic. In studies, fluoroquinolones are linked to peripheral neuropathy — a type of nerve damage that can be permanent. It causes poor bowel and bladder control, burning pain, organ and gland dysfunction as well as digestive issues. In 2013, the FDA added a warning to fluoroquinolone labels advising of the risk.
Other serious issues related to these antibiotics are tendon rupture and aortic aneurysms and dissections — bulges and tears in the aorta. The FDA has a black-box warning for tendon rupture associated with fluoroquinolones. A study in JAMA medical journal showed these drugs can cause a two-fold increased risk of dissection and aneurysm in the first 60 days after taking one of these drugs.
Fortunately, these are not the only antibiotics and treatments available for urinary tract infections. Some of these include trimethoprim/sulfamethoxazole (Bactrim DS, Septra DS), nitrofurantoin monohydrate/macrocrystals (Macrobid) and fosfomycin tromethamine (Monurol). Keep in mind, no drug is free of side effects, but patients should be able to make a decision based on risks and benefits with their doctors.
Bladder slings, also called bladder neck slings or transvaginal mesh slings, are one of the surgical treatments for neurogenic incontinence. This treatment is more common in female adults and children diagnosed with the condition, but some males also undergo the procedure. Doctors use the patient’s own tissue or a synthetic plastic mesh implant to support the bladder neck and help it close to prevent urine from leaking.
One study in the Journal of Urology showed a high rates of success — 70 and 90 percent — in treating incontinence after surgery. Study authors found the sling “safe [and] relatively easy to perform and cost-effective compared with most alternative procedures.”
However, the FDA has also received thousands of reports of women who suffered severe complications. These include mesh erosion, nerve and organ damage, severe pelvic pain, hemorrhaging and other issues. Surgery to remove the implant and repair damaged tissues is costly and carries its own complications.
Many of these women filed lawsuits against mesh makers for failing to warn them about the risks. When considering a surgical treatment, make sure you use a doctor who specializes in these types of surgeries and can discuss the risks and benefits. Make sure to get multiple opinions if necessary. Surgeries using the patient’s own tissue may have fewer complications than one with synthetic implant.
Be Your Own Advocate
In her book, Beyond Embarrassment, JoAnne Lake discusses her own struggles with being prescribed a fluoroquinolone for a bladder infection and discussing her treatment options with her doctor.
“My body had enough problems, and I was not willing to risk having painful cartilage issues along with all the other things going on,” JoAnne wrote. “My doctor was quite offended when I would not take his drug of choice, and he refused to offer an alternative.”
JoAnne shares the importance of having a doctor who will listen and be willing to work with the patient. Patients need to be their own advocates, she says. Sometimes, this means going through a number of doctors before finding the right one. It also means being an active participant in treatment.
Fortunately, the internet is a great resource. Read up on any prescriptions and procedures and be ready with questions.
Bio: Michelle Y. Llamas is a writer and researcher for Drugwatch.com. She is also the host of Drugwatch Radio and has appeared as a guest on podcasts and radio shows. Her work has appeared in peer-review journals.
When we wrote Beyond Embarrassment, the goal was to offer comfort and compassion to those dealing with neurogenic bladder and bowel, because this disability is so embarrassing.
The tag line, for Trudy Triumph, the blog and the book, is…Shed the shame and stand proud.
This award shows that the judges understood the point of our book and I am thrilled that it stands among other motivational books.
I did not do this alone. Julia Parker did most of the research. She helped with some writing and tons of proofing. Most of all, she was a friend through the entire process. She continues to be an encourager to me, as I try to encourage others. Dr. Lora Plaskon was the icing on the cake. It is impossible to write a medical book without the endorsement of a medical doctor. She is such a good doctor because she cares about the person. She noticed my blog early on and was happy to see a patient’s voice. The forward she wrote for the book is right on. As a writing team, we truly needed each other.
Knowledge is power. Besides my story, I chose to add medical research and interesting tidbits to the book, for a feeling of community and understanding.
Comments about the Living Well Awards
“The Living Now Book Awards recognize books that help readers help themselves, to learn about enriching their lives in wholesome Earth-friendly ways. Lifestyle publishing categories such as home, health, family and personal development are the fastest-growing segments of book publishing today, and the Living Now Book Awards help demonstrate the importance of these books to readers and their vitality in the marketplace.”
“Books are an important tool for gaining knowledge about life-improvement goals, and the Living Now Book Award results announcement is a must-read list for helping us achieve those goals.”
“Authors and publishers all over the planet are helping readers sense the need to slow down, see and feel the natural world around them, and to find balance in their lives. The Living Now Book Awards are intended to recognize and promote newly-published lifestyle books that help us keep ourselves, our families, and the Earth healthy – today, and for future generations.”
The judging panels include experts of editing, design, reviewing, bookselling, and library. Judging is based on content, originality, design, and production quality, with an emphasis on innovation and creativity. The judging panels include experts of editing, design, reviewing, bookselling, and library. Judging is based on content, originality, design, and production quality, with an emphasis on innovation and creativity.
This is a happy day indeed. To be understood is to feel whole.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease or motor neuron disease, is a progressive neurological disease that causes the neurons that control voluntary muscles (motor neurons) to degenerate, according to the National Institutes of Health (NIH).
A monthly activity they participate in is a picnic for families who are dealing with the various ramifications of this disease. We all know that there is safety in numbers. There is acceptance and comfort that leads to an inner joy. For Allen and Sophie this time together with other families offers a kind of normalcy to their situation, an opportunity to ask questions, and most important a community that knows exactly what they are going through.
I see this blog similar to the picnic mentioned above. It is a place where we can be real and share our concerns with overactive and underactive bladder and bowel. Our plight is not common in conversation at the dinner table, similar to what Allen and Sophie deal with. For them, a discussion about dying a slow death is not a topic most want to have, so to be with others in a similar situation helps to feel normal.
Are people dealing with difficult situations supposed to be glum all of the time? Absolutely not! We have but one life, so it is important that we find the joy in our situation and move forward.
Today Allen and family members are planning a trip to a gun range. The men plan to hold Allan’s gun up as he aims for that target, but mostly I suspect they will have a day of men talk or perhaps men non-talk. Regardless they will be together and enjoy each other.
No matter what life throws at you it is possible to find JOY
Let me encourage you to be joyful in spite of hard circumstances. The alternative will bring you down and ruin your day. Can you give a friend a call? Can you create a beautiful picture? What can you do to find your joy?
Last week I received a question from a reader. It threw me a bit because I was tempted to put on my “Mommy hat” and say, “No, stop, you don’t want a bladder infection, stay home!” Luckily, I have an adventurous side, as well. I met my husband in Europe and as you can see by this picture, we backpacked. I can completely understand the need to at least try. Let me first share Cara’s question with all of you:
I’m new to your blog. I am 31 years old, and I also suffer from neurogenic bladder and bowel due to a spinal cord tumor that was removed two years ago. My boyfriend and I are planning a three-month backpacking trip to Southeast Asia, and I’m at a loss of how to plan!!! I’m not at [all] worried about intermittent cathing, but I’m worried about how I’ll handle my bowel regimen when I’m not even sure what toilets are going to look like in the various towns we visit. Do you have any connections or resources with anyone who has done a similar trip?
I have never backpacked in South East Asia but I have backpacked enough to know that clean hands are nearly impossible and reliance on your water purifier is very important. My question to you is have you traveled much? Are you ready to work through obstacles and if you need to are you able to pay for medical services?
I did ask a dear friend, Sue, who has done extensive travel to the area. She said that the nicer places have western-style toilets. For the remainder, expect a hole in the ground. She has visited several doctors over the course of her travels. Once she was bitten by a rabid dog (yes, she had to have the shots because there, the people get the shots, not the dogs) and another time she had a sinus infection. Both times she found the doctors competent.
I wrote a letter to David Chancellor from the Underactive Bladder Foundation, a group dedicated to improving lives for those of us with an underactive bladder. I know you wrote that you are interested in backpacking and David’s reply speaks to staying in hotels. I will share this all the same because it has some very useful information.
~From David Chancellor~
I trust you are well and it’s great to hear from you! I agree that this is an important topic from one of your reader’s. Thanks for shooting me an email!
Having traveled near that part of the world (Taiwan, China, Australia), I do have some concerns for your blog reader- but life is meant to be lived and with planning this can work! Her post did get me thinking, so I will ramble a little below . . . .
To answer her question, you’re correct in asking if she has travel experience and maybe more details where she is going. The challenges associated with her travel will mostly depend on the areas she plans to visit. In the big cities or major tourist areas of the more industrialized countries like Thailand, Malaysia, and Indonesia, I am confident she will find adequate restroom facilities nearly anywhere.
*When out and about she can rely on medium and large hotels for good bathrooms, as well as large malls or food chains – these can be googled in advanced and plotted out before leaving. When going to the less industrialized countries, as well as rural destinations, access to large enough restrooms may not be as reliable.
*Heat may also be an issue, as it is hotter and more humid and AC is less widespread than at least I am used to coming from Pennsylvania. In those areas you need to be prepared to rely on yourself and limit situations where you will be away from restrooms or lack privacy. This might mean spending a little more money for accommodations with private bathrooms compared to hostels with eight people per bathroom.
*Also I don’t need to mention that airplane bathrooms are very small and she should be prepared for that. Travel can be very rewarding so it can be worth the challenge, but she should be aware of some of these unique situations.
*Ideally she should bring enough supplies (hand sanitizer, wipes, catheters, and some backup antibiotics) to last the entire trip. Unfortunately, that will mean packing more but that does not have to be a huge burden.
*While there are pharmacies in every country should you need to restock, looking for a specific product in a panic without speaking the language is unpleasant. As a backup – google the translation for brands (or the names of local brands) and names for different goods that you can relay in the local language should you need to restock your supplies.
I have noticed that you have written some insightful blog posts about dealing with neurogenic bladder and bowel while traveling. You should share these in case she has not seen them!
[Feel free to copy any part of what I wrote . . . it’s just some ramblings, no need to credit me!]
In conclusion, my suggestions are to make sure that you bring along:
*Catheters that have an extra sterile component, offering a hands-free device for the part of the catheter going into the bladder. An example of this is the catheter described in last month’s blog post. Sometimes I will pack along a condom to use on the finger that I insert the catheter with, to keep it clean.
*Be sure to bring along an assortment of catheters (some will melt in the intense heat)
*The bowel issue can be managed with these items: Antibacterial soap and hand sanitizer. Handy-wipes are a must as well as zip lock bags.
Whatever you do not trust the water!
* Set up a built-in device to help you empty your bladder regularly. Coloplast offers a timing device app for your cell phone that will help you plan cathing intervals. Alternatively, you can get a watch with a little alarm clock to help with a regular voiding schedule. You will have jetlag and so many interesting things to see, but be careful. I you are like me, you do not feel the urge to pee unless your bladder is too full. We want to save our kidneys by going every 4 hours or so.
*Please make sure you bring enough money to be able to visit a doctor, if you need one A good hotel might be a good respite as well, at regular intervals between backpacking trips.
Right now you have a pretty healthy bladder because you are new to using a catheter. As time goes by you might experience more bladder infections. Be sure you bring along some emergency antibiotic. You might talk to an infectious disease doctor to ask for guidance or your trusted urologist for suggestions as well.
Have a good time & PLEASE write back and tell us about your trip.
Currently I use Speedicath by Coloplast. For those who do not know Speedicath is small and looks like a skinny tube of lipstick. The complaints I have heard about Speedicath is that it is too short and one sometimes has to touch the lubricated ridged tip to insert it easily. But this catheter has served me well over the years.
Now I am provided with another option.
I received a sample: size twelve french. (Fourteen french is what I normally use.)
My first time using the catheter I definitely needed two hands. ( I can’t resit this tidbit. Most medical pictures have a woman separate her labia with one had and insert a catheter with the other. For my book Beyond Embarrassment I had a graphic artist change that in a picture, because actually the act of a woman opening her legs, opens her labia as well. Which is a good thing for the first time I inserted this new catheter!) I needed one hand to hold the device and one hand to pull the tubing out of the wound container. As I pulled the tubing through the protective sheath, the white cylinder you see in the picture (which is great because I am sure this will cut down on infection) I got a little pinch because I did not pull it down far enough.
I then pulled on the tubing to insert the catheter into my bladder, the lubrication is so slight that I could not see the slime but I know it was there, because the catheter is easily inserted. An excess of lubrication can cause a yucky build-up over the day, actually, so it is nice that they have this type of lubrication, with no build up.
The urine flowed out quickly.
The ring shape made it easier to hold.
Countless times I have dropped a catheter in the toilet. Not a fun fishing expedition, by the way! This is the part of their design that is surprising to me. It is secure in my hands and easy to hold while using.
I am sure insertion will get better with practice.
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