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
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'”
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
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?
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?
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.
- Reach out for help
- Do not stay home and brood
- Be brave and bold
- 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.
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!
Dear Trudy and Friends of the Group,
Here we are planning to travel to Argentina where my dad waits for me; he is 92 years old. I am very anxious about it. It is my first time to travel with caths. Our plane travel will be very long, and to cross the Atlantic means 12 hours on the plane. I do cath “standard”, so they are the long ones, those which are made for men and not women, although a lot of women, like myself, use them. The question: can this be done in the tiny bathrooms on a plane? Sorry if I am so ignorant or lack imagination, but it is hard for me to see, under these circumstances. I have had to go through many technical problems with my cath!, but now I am doing very well. Thank you for any tip of information i can get from this wonderful group.
With love and hope,
Ana from Israel
Glad you are ready to consider travel. I think it’s an important step to taking charge of your life by doing the things you find important. I want to encourage you and assure you that it will be both a fun and exciting time for you and your Dad, and even more so with a little preparation and planning. I applaud you for having the foresight to reach out to the group. Several things come to mind for you to consider, as you prepare for your upcoming trip.
Pre-Trip: I always take an extra form for antibiotics and a pre-signed lab slip from my doctor, that allows me to get my urine tested to see what type of bug I am growing/susceptibility to antibiotics, etc., if an infection starts. A lot of times when we cath it leaves us prone to bladder infections and even if the doctor you visit at your destination will write his or her own lab slip, at least you have an example of what you need for them. This might be especially important when traveling to another continent!
Tips particularly regarding cathing:
I have found some major problems when flying the friendly skies. First obstacle, the automatic flush on the toilets in many international airports. Sometimes, when reaching down to cath, I trigger the automatic flush. To avoid nasty water contaminating everything, I just hover above the seat and wait to start cathing, once all is clear again. Try hovering above the toilet at home to practice, because your catheter insertion point will likely be in a different location when using different toilets of varying heights, etc. It is good to practice cathing at home with a short forced “intermission” before you cath, so you will be used to it and won’t get stressed on your trip. It’s important to be ready for whatever lies ahead.
TIP #2 – I have found that airplanes generally have short/low toilet seats in their lavatories. In fact, the first time I tried to use a catheter on an airplane I shot pee onto the floor because it flowed right out and under the short seat while I cathed. So, I want you to be prepared by expecting a likely short distance to work with, especially if you’re using the long catheter, and you will be fine.
TIP #3 – Bring plenty of catheters and pack/distribute them in different places throughout your luggage, so you have what you need in case your luggage is lost or, heaven forbid, stolen. I always thought that if that happened I could just go to a hospital for what I needed. But, that might take time, and when traveling, you can’t always be close to a major hospital. For the life of me I still find it hard to understand why drug stores don’t stock catheters and other “medical equipment”. But, I have been told that it is generally beyond the scope of their business, which caters to carrying merchandise they can easily move/sell. Crazy, Don’t you think? At any rate, it makes life inconvenient/more challenging for those of us who cath daily.
I AM sorry you only have men’s-size catheters at your disposal. There are some really small practical catheters on the market that work great for a woman’s ureter. The one I use is called Speedicath, manufactured by Coloplast. It may not work for your trip, depending on your timeline, but why don’t you email Coloplast directly and see if there are sales reps in your area? You can review the information on this website: https://www.coloplast.com/contact/coloplast-israel1/. Of course, you will need a prescription to get things started with a new supplier. You could possibly have what you need mailed to you. (That’s how I receive my catheters). There is also a new product called Compactcath. This catheter is suitable for both men and women. See more at: http://www.compactcath.com/. Both catheters are pre-lubricated and sterile, and you can easily fit several in your pocket, zipper-pouch bag or purse.
Final TIP #4 – I always carry extra clothes and keep plastic zip-lock (self-closure) bags and wet-wipes on hand, at all times, in case of bladder/bowel mishaps. If you have what you need, your trip will be carefree and you will enjoy peace of mind.
Have fun on your trip, Ana.
How about the rest of you. Any additional trip tips for Ana you’d like to add?
I am going to get real with you and take a moment to express what really comes natural to me: Honestly, “What would Jesus do?” Here goes:
Not long ago our school district had a meeting for substitute teachers at the local high school where I retired from and occasionally “sub”. I’ll set the stage: The auditorium was packed and there was only one woman’s restroom.
When I go to the Ladies’ Room to pee, I ALWAYS wash my hands first. I wonder if it raises eyebrows because to some it might seem a bit out of order. I always wash my hands again, Yes, twice, before and after, my duty is done.
As I cleanse my hands, it always allows me to get the “lay of the land”. A double sink with paper towels and a trash can beneath, on either end, in this case. The paper towel holder and trash can, were right in front of a full wall mirror. Multiple stalls, means many seeing eyes. No secret disposing of trash, by golly.
So, I go in and do my business and at completion I notice there is no trash can in the stall! I am now horrified. I have this long skinny catheter, yellow now, in fact, that still needs to be disposed.
I chastise myself because I usually carry little baggies for this very thing. I could have put it in a zip top and slipped it in my pocket or purse. But, in this instance, I did not have one.
Do I wrap it in toilet paper, long and soggy? . . . Then walk discreetly through an ocean of my peers with a dripping tube, as I try desperately not to make eye contact with other women, some of which I have worked with for years, by the way . . . to finally toss my bulky, tattletale, millstone away? Or do I take the easy way out?
These are my choices:
a) humiliate and expose myself to prying eyes and the possibility of questions I don’t want to answer
b) take the cowardly route?
Remember, the restroom is packed with women that I want to look cool in front of . . . AND there is a full length mirror in front of the trash can. [No secrets there].
I’m sorry to report: I just kicked the offending object behind the toilet. If you are a custodian, I indeed lament my deed. Please accept my apology — I in no way feel proud. I was backed into a corner. It was simply a survival tactic.
Just as a person bound to a wheelchair fights for sloped curves and wheelchair access, I take my fight to: “Within the public restroom stall”. My disability is hidden for the most part. Many don’t know. Please, if you have any say in how a public restroom is set up, please insist that a trash container is incorporated into the stall itself. It provides a certain amount of hygiene and privacy. Basically, it allows me to save face.
Neurogenic bladder comes in all kinds of shapes and sizes. Some of us use aids. Please help us dispose of them privately, and safely.
What would you have done?
Endometriosis can cause bladder and bowel problems, but most prominently, it results in intense pelvic pain and monthly cramps for an estimated more than 6 million women, in the US, alone.
Today I feel compelled to share some thoughts and memories with you. As a high schooler, my first symptoms of menstruation, as a teen, were very painful periods. The first day I would be in so much pain due to cramping that I would need to lay down and because of the pain, I almost always vomited. When I was older, I had a difficult time getting pregnant and then after I endured several miscarriages, wonderfully, I had 2 babies in a row. After that my painful periods went away.
It is unlikely my own bladder and bowel symptoms stem from endometriosis, but this topic is newsworthy all the same because it does raise havoc on one’s body and many times, women do not realize the painful periods and painful sex they are experiencing are caused by it. Endometriosis is a medical condition in which functional endometrial tissue (the mucous lining of the uterus) is present in the pelvis outside of the uterus. When a woman with this condition has her menstrual cycle, the tissue grows and bleeds even though outside of the uterus, it cannot easily run out of your body.
Remember often times pain is a message. Help can be found, the squeaky wheel gets the oil.
Get help if you need it.
Dear Mr. Limbaugh,
On Wednesday, September 6, I was listening to your program when you mocked a reporter for sharing on the news about a bowel accident he had while in the Press Room at the White House. You said that it is not ok to talk about these things.
I disagree. It is important to talk about this problem because so many suffer from this condition. The embarrassment it causes is crippling. To make matters worse, some are even stricken with fear about sharing these symptoms with their doctors.
This condition does not only happen if you eat contaminated food from an unlicensed street vendor, it can happen as we age, have a stroke, develop Multiple Sclerosis, I truly could go on and on.
You shamed families who have loved ones and do not know where to turn when this problem arises because they are horrified at the thought of admitting they have this problem.
I feel so strongly about this topic, I wrote the book, “Beyond Embarrassment: Reclaiming your life with neurogenic bladder and bowel. The book is my story with added information from medical research librarian Julia Parker, MS, MLIS.
I wrote the blog for years under a pen name Trudy Triumph because I was so embarrassed by my condition. When the book came out I decided to add my real name, JoAnne Lake, because I felt that people like me need a voice.
Do I feel a bit uncool at times? Honestly NO, not now. I feel like we are uncharted territory for the trampled upon and now we need to kindly ask for our rights as well. Our rights to share our concerns, ask for help at work, ask for grace at times.
Yes, many of us need aids when toileting. Many of us carry extra clothes. We are your mothers, fathers, teachers, neighbors, and even reporters. We need compassion, not to be told to keep quiet.
I plan on sending you a book. Hopefully it will give you an insight on those who suffer, mostly quietly, but need a voice all the same.
Kind Regards and always a fan,
JoAnne Lake aka Trudy Triumph
Question to Trudy
I want to point two things out to you. Neither a mirror or holding the labia apart really helps a women use an Intermittent Catheter.
Our body is built to work with us, not against us. This is why in all cultures, women squat to pee. On the toilet we squat, too. If you don’t hold your labia to pee then you will not need to hold your labia when you cath. When we sit on the toilet and spread our legs the labia naturally opens. When you see pictures of women needing to hold their labia while inserting an intermittent catheter I guarantee you that it was thought up by a person that has not thought it through. When you urinate, the flow of urine is unobstructed. I rest my case
The use of a mirror is unnecessary, truly. I wish women were not trained this way. Trust me, you can find parts of your body by touch. I am sure a male thought this up because the thought of never seeing ones private parts is incomprehensible to them.
When you get ready to insert an intermittent catheter:
- Wash your hands really well.
- Sit on the toilet with your legs spread or squat if you do not have a toilet.
- As you put your catheter near your labia, put your ring finger near your your upper leg (by your labia). Use the same spot every time. In the beginning, this will act as a marker. (Your urethra is between your clitoris and your vaginal opening).
- Gently probe the area for your urethra. I use the same finger, my ring finger to guide the catheter to my urethra. (For me it is off to the side a bit because of stitches which were the result of the use of forceps during the birth of a ten-pound baby).
- Gently probe the area and insert the catheter.
- You will find it, I promise.
I understand that there is a lot of stress the first time few times you do this. It is hard. I used to sweat buckets the first few times. But, rest easy, it will become second nature. I also ended up being a bit sore, initially, because I probed a bit too hard, in the beginning.
If you sit in the same position on the toilet, the area around your urethral opening will be in the same place every time. Remember, if you end up going on a hike or need to use a porta-potty, the spot you need to find will be shifted; fear not, you will find it. That is why I suggest that after you get comfortable with the same old, position, shift yourself so you do not fret the first time you venture out.
TIP: When I am camping and do not have access to clean water, I pack condoms to put over my ring finger as a barrier, because they are sterile and my hands are not.
I also want to add a note about botox. Some women with an overactive bladder find great relief with botox.
I am sorry that you are diagnosed with a underactive bladder (UAB), for even a short while. It is what I have as well, although I will probably always have UAB. The good news for you is that now you understand what is going on. There are many, not as lucky as we are who have a sluggish bladder and suffer symptoms, but do not know that their difficult symptoms stem from a broken bladder. You are one step ahead of them. You’re proactive and taking care of your problem.
In the book I wrote with Julia Parker MS MILS there is so much more about catheters, including Foley Catheters that you might like to read. This sample below is offered as an encouragement to stay the course and embrace your new life with intermittent catheters.
From the book “Beyond Embarrassment”
Advantages of Clean Intermittent Catheterization
Sterile intermittent catheterization was developed in 1947, and, by 1966, a long- term study concluded that this method is state of the art in the management of Neurogenic Bladder. The advantages of clean intermittent catheterization (CIC), which is regarded as the most effective way to aid in bladder-emptying disorders, include a lower risk of urinary tract infections (UTI), urosepsis, and renal damage, besides providing autonomy and mobility. [8,9,10] Prior to the availability of sterile intermittent catheterization, renal failure was one of the most frequent causes of death in spinal-cord injury patients, besides the abnormal backflow of urine back up into the ureters from the bladder (vesico-ureteral reflux). (Pressure within the kidney itself can severely damage it and prevent normal function.) Because urethral catheters are the most frequent cause of UTIs in hospitalized patients,  it is important to adopt a system that reduces that risk. Sterile intermittent catheterization, when used long term, reduces renal scarring and bladder calculi (stones),  which are common in bladders containing stagnant urine.
Please keep in touch and let us know how you are doing!
References and Notes
8 Spinu, A , et al. “Intermittent catheterization in the management of post spinal cord injury (SCI) neurogenic bladder using new hydrophilic, with lubrication in close circuit devices—our own preliminary results,” J. Medicine and Life 5, no 1 (2012): 21-28
The use of Clean Intermittent Catheterization is so well accepted in some parts of the world that they are provided for free by the health agencies of many countries They are viewed as an application of the concept of the inseparability of biomedical and social aspects in human functioning, based on the system established by the World Health Organization in 2001, the International Classi cation of Functioning, Disabilities and Health (ICFCH) For example, since 2008, the Romanian National Assurance House (the Health Plan of Romania) has fully supported the unlimited use of four closed-circuit hydrophilic catheters per day for patients diagnosed with Neurogenic Bladder
9 De Ridder DJMK, Everaert K, Garcia Fernandez L, et al. Intermittent catheterization with hydophilic-coated catheters reduces the risk of clinical urinary tract infections in spinal-cord injured patients: a prospective, randomized, parallel comparative trial Europ Urology 2005 48: 991-995
10 Vapnek JM, Maynard FM, Kim J , “A prospective randomized trial of the LoFric hydrophilic-coated catheter versus conventional plastic catheter for clean intermittent catheterization,” Journal of Urology 169 (2003): 994-998
11 Tenke P, Jackel M, Nagy E Prevention and treatment of catheter-associated infections: myth or reality? EAU Update Ser 2 (2004): 106-115
12 Donnellan SM, Bolton DM “The impact of contemporary bladder management technique on struvite calculi associated with spinal cord injury ” BJU International 1999 84(3): 280-285