Living With A Suprapubic Catheter and NMO

Deciding to get a suprapubic catheter for a wheelchair-bound person like myself, with my neurogenic bladder with severe UTIs, was a no-brainer. I had been dealing with a severe and constant UTI that just wouldn’t go away! Due to living with a bad case of neurogenic bladder, I was forced to self-catheterize with a disposable catheter every 45 minutes to 2 hours.

Before getting a suprapubic catheter placement, I was self-catheterizing with a disposable device. I kept getting a lot of UTIs which was affecting my NMO symptoms, especially my body spasms.

So, when my urologist spoke to me about the suprapubic catheter, I scheduled my surgery that same day.

Getting surgery

Like any other surgery I’ve had I was a bit nervous. The surgery itself was done in under 90 minutes while laying under a wide CAT scan machine. I needed to have a full bladder at the time of the surgery so when they poked through, they’d have urine to drain. I was put under a light anesthesia and had a great nap.

When I woke from anesthesia, I had a catheter coming out of my abdominal. I was on bed rest for about the first three days because any movement caused me pain due to incision.

Bladder spasms and recovery

It was a strange feeling, the inflated balloon from the catheter inside my bladder, but it was even more strange feeling my bladder spasming around the balloon. I knew I had bladder spasms and thought I knew what they felt like - but nothing like this.

It was a bit uncomfortable because I kept feeling pressure on the inner top part of my urethra. I knew I was draining urine from my suprapubic catheter.

I had to get the incision cleaned everyday by a caretaker. Within the first the first two weeks I had to take it easy, no lifting, no submerged baths (only running water shower), loose fitting clothing, and rest.

Gaining back some freedom

I had a new sense of freedom.

For the first time in a very long time, I could drink liquids at all hours of the day or night. During the day I could go out anywhere and not have to worry about using a public bathroom, especially if it wasn’t handicap accessible. This meant that at night I did not have to worry about waking up at the middle of the night to use the bathroom.

To be frank, it took some time for me to mentally comprehend that my new norm was very different from my past.

UTI free?

The first few weeks I was following my pre-suprapub liquid intake routine, until I finally understood I’d always be draining urine no matter the time. With increased liquid intake my urine was starting to be a clearer color, and my UTIs were finally subsiding. I started seeing and experiencing what it was like to be able to drink limitlessly and become UTI free.

What an amazing new sense of freedom!

Why it was worth it

I finally had the liberty of stepping out of my house without having to worry about a public inaccessible bathroom. I can finally drink liters of liquids without a care, whether it was day or night. I can have a full night's sleep and go through a REM cycle without having to wake up my husband and desperately spasm wheel or walk my way into the bathroom, avoiding a fall risk.

I got my privacy once again and I didn't need assistance in the bathroom. This incredible feeling and sense of independence was worth getting the suprapubic catheter!