Life With a Supra Pubic Catheter: What I Wish Someone Had Told Me
It’s been a while since I’ve written a blog, made a product or recorded a podcast. The reason? Because when your life is thrown upside down from health complications, it’s REALLY thrown upside down. If you’re familiar with my story then you know what led me to needing a Supra Pubic Catheter for a Neurogenic Bladder (under active), but if you’re new here you can learn more about my journey by catching up on these reads: Realities of a Hysterectomy and My Neurogenic Bladder. After having a Supra Pubic Catheter placed in July 2024, I’ve been trying to adjust to life with a Supra Pubic Catheter, so if you’re new to the Supra Pubic Catheter life, let me share some tips I wish I knew during the early days.
Life with a Supra Pubic Catheter: What I Wish Someone Had Told Me
When your bladder isn’t working and you need a catheter of any kind it can be so overwhelming. Backing up to 2014, I had a catheter when I was suddenly hospitalized for Severe Preeclampsia. That little catheter caused so much pain, and was connected to a lot of trauma from surviving Severe Preeclampsia. So naturally, when I became dependant on a catheter full time in March 2024, I was so overwhelmed and discouraged by it.
At first I had an indwelling foley catheter which caused so much additional pain and trauma to my urethra. When my urologist reccomended a Supra Pubic Catheter (SPC) in June 2024 and explained how it would bypass the urethra I was all in. It sounded simple enough, a small incision in your lower abdomen straight into the bladder, bypassing the urethra completely. But, let’s just say it isn’t always sunshine and good days with an SPC, there are still so many hurdles to overcome.
Recovering From a Supra Pubic Catheter Procedure:
Healing Takes Time:
When I first got my Supra Pubc Catheter (SPC) placed in July 2024, I was told it was going to be a simple, easy recovery. “You can be up and moving in two weeks or less”, ok, so what does it mean if I’m not? Does that mean I’m not like everyone else? Or are the recovery guidelines that they give out, completely out of touch with reality? After living with an SPC for so long and meeting tons of SPC users via social media, I’ve learned that I wasn’t the only one who didn’t adjusted to life with a SPC like it was no big deal.
The reality is: Your body is unique, and no one can stick a timeline on that. If it takes you longer to recover than someone else, that’s ok! You aren’t the only one, and it certainly doesn’t mean that you are doing something wrong. Giving yourself peace of mind and reassuring yourself that it’s ok if it takes a little more time, is one of the best gifts you can give to your body. Pushing yourself, and thinking ‘what’s wrong with me? I need to get moving‘ is cruel, but so common. You don’t need to rush yourself, it’s not a race or a competition, you can take your time.
It Can Take Time to Accept the Change:
The medical field likes to say things like “it’s easy”, but the reality is: adjusting and accepting a Supra Pubic Catheter can take time. If you aren’t immediately like “yep this is a part of me“, that’s ok. It can take time to accept this hole and foreign object protruding from your body. And in many cases, the bag that’s attached can also make you feel a little uneasy and overwhelmed. Be patient with yourself, talk yourself through it. Look down at the incision and remind yourself that it’s a tool to keep you healthy, not bring you down. Just like there is no definitive timeline on healing, there is no timeline on accepting your Supra Pubic Catheter. I’ve had my Supra Pubic Catheter for nearly two years, and sometimes I still feel a little shocked that this is my body.
Bladder Spasms are No Joke:
Truly, no one in the medical field will warn you about the bladder spasms, and if they do – then consider yourself lucky! Your bladder is likely already struggling with trauma just from the underlying issue that has made you need a Supra Pubic Catheter, so throw in a hole in the bladder wall and a tube permanently poked into it and that’s an easy recipe for bladder spasms. Bladder spasms can be extremely debilitating and they seem to be different for everyone depending on your condition. Generally they are classified as sudden, involuntary contractions of the bladder muscles. Think contractions, but of the bladder instead of the uterus.
Bladder spasms can cause a sudden uncontrollable urge to pee, urine leakage, and pain in the pelvic area or lower abdomen. For me, it looks a little different. I have an underactive (atonic) Neurogenic Bladder, which essentially means my bladder is “paralyzed” or “dead”. So when I get bladder spasms they present themselves as extreme pain in my urethra, shaking of the catheter, and agonizing cramping from the surrounding muscles dealing with the agitation from the pelvic floor. There is usually an uptick in bladder spasms after a Supra Pubic Catheter change, laying super still and using a heating pad seems to help me and many others with the spasms.
Supra Pubic Catheter Changes Can Be Very Painful
One of the biggest inaccuracies that I was told was that Supra Pubic Catheter changes shouldn’t hurt. So, I went the first year with mine thinking that I was pathetic because of the agony that I would go through with the changes. Only to find out, that it’s actually more common for people to experience painful Supra Pubic Catheter changes, especially when the bladder has suffered trauma and damage. If you feel like the Supra Pubic Catheter changes are too painful then tell your doctor, and ask for ways to help minimize that pain and trauma.
Infections are a Concern
Before I got a Supra Pubic Catheter I did a ton of research because I wanted to make sure that I wouldn’t be at a higher risk for infection. Everything I read made it sound like a Supra Pubic Catheter was a lot safer than an indwelling foley catheter for infections. But, two months after getting my Supra Pubic Catheter I ended up with a horrendous Pseudomonas Aeruginosa infection. Despite countless rounds of antibiotics and more frequent catheter changes, that bacteria was stubborn to get out. And truthfully, that can be really scary and defeating.
It’s yet another situation where you feel like the odd one because how did you end up with such bad infections, when the majority of research says you shouldn’t. But, it all goes back to the point I’ve made over and over again, and that is that every body is different and unique. For some, they may never encounter a complicated UTI from having a Supra Pubic Catheter, but that doesn’t mean it doesn’t happen.
Don’t Push Yourself to Get Back to “Normal”
After I got my Supra Pubic Catheter I thought I could jump back into my old life. I wanted to do intense workouts, start running again, and get my tummy to shrink down a bit. But any time I would try to push myself in any way, I was met with extreme pain, blood in the urine, bleeding from the incision and I’d be down for days. I had to learn to let my body lead when it came to “getting back to normal.” As much as I want to “push through the pain for results”, the reality is that there is no “pushing through the pain” when you have a Supra Pubic Catheter. Listening to your body and offering it gentler forms of exercise is important. The reality is that you have a literal hole in your body with a tube always there. Your body needs patience, grace and gentle movement.
Life with a Supra Pubic Catheter: Things are Different Now
The truth is: getting a Supra Pubic Catheter doesn’t make life abundantly easier. It comes with its own challenges, good days and bad. And it’s important to recognize that. Pushing yourself and ignoring your pain won’t get your anywhere. But being gentle with your body, giving it the time and rest it needs and understanding that pain doesn’t mean you’re doing something wrong, is important. There’s no user manual on how to go forward and live your life with a Supra Pubic Catheter, because everyone is different. So, it’s up to you to learn to listen to your body and help it learn to adjust to life with a Supra Pubic Catheter.
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