MS and your bladder

A year ago, I had a suprapubic catheter inserted into my bladder. It has changed my life.

Like me, many with MS have bladder problems. In one estimate provided by the National Multiple Sclerosis Society, bladder problems affect at least 80 percent of those with MS. Typically in MS, bladder dysfunction occurs when nerve fibers are damaged, blocking or delaying nerve signals that control the bladder and the muscles surrounding it. Because of this, people with MS may have overactive bladder, underactive bladder, or both.

Bladder dysfunction can be embarrassing and can interfere with social outings and relationships. It can be isolating – making sufferers afraid to leave the house for fear of accidents or constantly needing to be near a restroom.

This was true for me. With my limited mobility, it came to a point that I couldn’t transfer to the toilet on my own. I had lost my independence. I tried medications but they didn’t help me enough. I needed a change.

A suprapubic catheter is a hollow flexible tube that drains urine from the bladder. It is inserted into the bladder through a cut a few inches below the navel. This is done as an outpatient procedure.

I have a tube running down the outside of my leg to a drainage bag hooked to my wheelchair. Because I don’t have to worry about finding a bathroom (let alone an accessible one!), I have less anxiety. I can go out again. Part of me is back.

Everyday Health: Coping with Bladder Dysfunction

March is MS Awareness Month

Let’s educate people, explain to them what MS is, and how it impacts our lives.

I live with the effects MS has on my body every day. I wake up and need a mechanical lift to get out of bed. I spend all of my time in a wheelchair. I spend an hour every day on physical therapy and exercises. I experience pain, spasms, fatigue, and weakness. I take medications to manage these symptoms. I have secondary progressive MS which means I am progressing with little hope of regaining any function I have lost.

Living with MS is hard. In addition to dealing with my physical symptoms, I have come to realize the world isn’t built for someone in a wheelchair. A step or curb, a high counter, a heavy door – I encounter discrimination in favor of able-bodied people all the time.

MS has a big impact on my life. There’s a common saying, “I have MS, MS does not have me.” It’s supposed to be an empowering message. Unfortunately, MS does have me a lot of the time. My disability is fairly advanced so almost every aspect of my life is affected by it. MS certainly gets in my way. One of the most challenging things about adjusting to MS is it’s ever-changing. You have to be a chameleon and learn to adapt with every turn.

MS is a disease of the central nervous system that damages the protective covering surrounding the nerves called myelin. There is currently no cure for MS, which affects around 2.5 million people globally and 400,000 people in the U.S. While treatments are constantly evolving, more research into the disease, future treatments, and a possible cure is still needed.

Let’s get the word out.

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Watch: MSAA Video: Changing Lives Monday to Sunday