“THIS IS A SPONSORED POST WITH AEROFLOW. I HAVE BEEN COMPENSATED THROUGH THE CHRONIC ILLNESS BLOGGERS NETWORK. ALL OPINIONS REMAIN MY OWN, AND I WAS IN NO WAY INFLUENCED BY THE COMPANY.”
In my early twenties, my first “career” job was selling birth control pills to Ob/Gyns, and I soon learned that catheters are used for intravesical therapy, an in-office procedure used to help ease the pain from Interstitial cystitis (IC) – AKA “Painful Bladder Syndrome.” Some patients were even willing to learn how to administer this intravesical therapy for IC, with a catheter, at home, on their own. Despite being diagnosed with IC around the same time, several years before receiving my Ehlers-Danlos syndrome (EDS) diagnosis, I was still unaware that catheters have many medical uses, come in different sizes, or that IC is a comorbid condition to EDS (and “why” thanks to our sensitive mast cells – more on that below).
Fast forward nearly 20 years, filled with a ton of personal and professional experience working with other hypermobile patients, most diagnosed or suspected to have a type of EDS, in addition to hours spent working in operating rooms across the country – added to my personal patient experience as an adult with a laundry list of possible catheter-worthy conditions, my knowledge and understanding of the importance of catheters and their various uses has come full circle. Because of this, today I’ve teamed with catheter supplier Aeroflow to share my experiences and tips.
My personal comfort, in addition to others with EDS who have to use catheters for EDS-related or unrelated conditions, is often due to the overall improved design and functionality. For example, although it can still be difficult, companies like Aeroflow allow patients to choose from a range of catheters to fit their needs and make it easier to manage life with delivering supplies direct to your door and even sending text reminders.
5 Comorbid Bladder & Pelvic Conditions Associated with Hypermobility Disorders, including EDS, that May (or May Not) Warrant the Use of Catheters: (list to not convey a full list of pertinent conditions):
- Pelvic Floor Dysfunction (PFD) – when you are unable to control the muscles in your pelvic floor to have a bowel movement or a complete one. People with pelvic floor dysfunction contract these muscles rather than relax them.
- Prolapse (often linked to PFD) — when a pelvic organ, such as your bladder, drops (prolapse) from its normal place in your lower belly and pushes against the walls of your vagina.
- Urinary & Bowel Incontinence (often linked to PFD) – the partial or total loss of bladder control, or urgency that is sudden and uncontrollable, or the inability to control bowel movements, causing stool (feces) to leak unexpectedly from the rectum.
- Interstitial Cystitis (considered to be a mast cell-caused condition) – recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency(needing to go often) and urgency (feeling a strong need to go).
- Dysmotility (abnormal intestinal motility) – when muscles of the digestive system become impaired and changes in the speed, strength or coordination in the digestive organs occurs. Dysmotility is associated with Gastroparesis, another comorbid condition, which is delayed gastric emptying (or dysmotility) of the stomach.
Conventional Urological Therapies for Bladder Conditions (hypermobility-related or not):
- Anticholinergics
- Elmiron for IC
- Mechanical devices, such as a pessary
- Absorbent products
- Botox
- Surgery
- Behavioral therapies & lifestyle changes (see below)
Complementary and Alternative Therapies for Bladder Conditions (hypermobility-related or not):
- Pelvic Floor Physical Therapy
- Restorative Exercise to correct biomechanics, alignment and to strengthen the pelvic floor
- Pelvic floor muscle-specific exercises – i.e. Kegel exercises
- Bladder training
- Dietary modifications
- Bio-feedback
- Acupuncture
- Mindfulness practices
“The aim of the treatments will be to help alleviate the symptoms rather than cure the conditions.” (source – https://www.bladderandbowel.org/associated-illness/ehlers-danlos-syndrome/)
Living with Hypermobility Disorders and Catheters:
What is a catheter?
“Medical catheters are tubes used in healthcare to deliver medications, fluids or gases to patients or to drain
bodily fluids such as urine. Examples include vascular access devices or intravenous catheters, urinary catheters and chest drainage tubes.
Catheters are generally inserted into a body cavity, duct, or blood vessel. They may be thin, flexible tubes called soft catheters or thicker and more inflexible catheters called hard catheters. A catheter that may be left in the body, whether temporarily or permanently, is referred to as an indwelling catheter.” (source – https://catheters.aeroflowinc.com)
How are catheters used?
“Catheters used for this purpose are called Foley’s catheters. The catheter is inserted into the bladder where it is held in place by a balloon filled with sterile water. Urine drains through the catheter into a bag that can be emptied. It may be used in cases of urine retention, interrupted urine stream, straining on urination, obstructed urethra or for the monitoring of urine output in a critically ill patient or after surgery.” (source – https://www.news-medical.net/health/Catheter-Uses.aspx).
Advice from fellow patients:
I asked a few EDS patients to share their experiences and tips of life with a catheter…
Patient A – “I have EDS and currently alternate between ISC and urethral catheter because I can’t seem to keep hold of them. A tip I would say is remembering that using catheters doesn’t make me different or less like me. I still wear what I want and do what I want. If people stare at me that’s their issue!
Patient B – “I have a suprapubic catheter due to EDS. A great tip is you know the little recycling caddies you get for your kitchen waste? I keep my night bag inside one of those and it stops my kitten putting his claws through it which he kept doing when I was asleep!”
Patient C – “I have EDS type vascular and hypermobile types and have a permanent catheter! My biggest tip is to try your best to use a flip flow valve as much as possible and not rely on a free flow bag if you are medically able to! Since I’ve been re-training my bladder and using a flip flow valve I’ve been less conscious about it xxx”
Patient D – “I have EDS and have been self-catheterizing for 14 years! For me, perseverance is the reason why I have managed to ISC for this amount of time. The first year was hell and wanted to give up every day and get an SPC but so glad I got through it. I don’t feel the catheter going in now and have only had 3 UTIs in the whole time!
Finding a DME (Durable Medical Equipment) Provider & Supply Resources:
Listed below are a few things to keep in mind when things to keep in mind when choosing a supplier.
– Call ahead and ask questions. Do they deliver? What is their ordering process? Insurance submission?
– Ask for an estimate of out-of-pocket costs
– Customer Service – a committed, empathetic, professional and reliable customer service department is critical for alleviating additional stress or worry, and for protecting your privacy when with a chronic condition – or several.
About Aeroflow Catheters:
Aeroflow stocks countless types urinary catheters and urinary catheter supplies from top medical companies such as Bard, Cure, Coloplast, Hollister, Teleflex, and MTG.
- Aeroflow’s catheters can be claimed on insurance
- Aeroflow send monthly reminders so you don’t forget to change catheters!
- Necessary supplies are delivered right to your doorstep. No need for additional trips — decreases the risk of running out of supplies or forgetting to make the trip to get supplies
- Aeroflow has dedicated sales reps and excellent patient-focused customer service
- Website – www.aeroflowurology.com
Cited Resources and Pertinent Medical Research/Articles:
Hypermobility, the Bladder & Pelvic Floor – http://hypermobility.org/help-advice/the-bladder-pelvic-floor/
Bladder & Bowel Associated Conditions to Ehlers-Danlos syndrome (EDS) – https://www.bladderandbowel.org/associated-illness/ehlers-danlos-syndrome/
‘Interstitial cystitis intravesical therapy’ – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5522791/
‘Complementary and Alternative Medicine Treatment for Urinary Incontinence’ (2017) – https://www.intechopen.com/books/synopsis-in-the-management-of-urinary-incontinence/complementary-and-alternative-medicine-treatment-for-urinary-incontinence