Managing bladder and bowel symptoms in NMOSD

When neuromyelitis optica spectrum disorder (NMOSD) affects the spinal cord, it can cause multiple symptoms, including urinary and bowel problems. These issues can affect your comfort, confidence, and day-to-day life.

Understanding their causes and identifying ways to manage them can make a meaningful difference in your well-being, both physically and emotionally.

How NMOSD can affect bladder and bowel control

NMOSD can cause inflammation and damage to the spinal cord. This can disrupt the communication between the brain and the nerves that control the bladder and bowel, leading to a loss of control.

Damage can occur at different locations along the spine, which explains why NMOSD bathroom issues can look different for everyone.

For example, one person may experience urgency because the spinal cord is damaged in the area that signals when the bladder is full. Another person may experience issues with retention or constipation because the damaged area may affect the messages that signal the bladder or bowels to empty.

NMOSD bladder and bowel problems may change over time, especially during relapses. You may experience a sudden worsening of incontinence during a flare, or you may have ongoing symptoms with fluctuating intensity.

Because of this variability, it’s important to regularly communicate with your care team to reassess your symptoms and find the best ways to treat them.

Common NMOSD bladder and bowel symptoms

NMOSD affects everyone differently, and it can cause different bladder and bowel symptoms. These may include:

• the need to urinate more frequently or urgently
• trouble emptying the bladder or bowels
• accidents or leakage
• constipation or difficulty passing stool
• urinary tract infections
• abdominal discomfort or bloating

How symptoms can affect daily life

Bladder and bowel symptoms can interfere with NMOSD daily life management, from influencing sleep quality to affecting your scheduled activities.

• Disrupted sleep: Experiencing an urgent need to use the bathroom throughout the night can disrupt your sleep. As a result, you may feel groggy and tired the next day.
• Anxiety over potential accidents or leakage: Worrying about a bowel accident or urinary leakage may cause anxiety about leaving the house. You may find yourself having to plan your days around ensuring access to a bathroom.
• Stress and embarrassment: Managing these challenges can be very stressful, and you may feel embarrassed when accidents or leakage happen. These issues can lead you to avoid social interaction and become isolated.

Everyday strategies that may help manage symptoms

Living with the bladder symptoms and bowel issues that can occur with NMOSD can be challenging, but some strategies can help you navigate them. They include:

• Building a bathroom routine: If possible, try to go to the bathroom at regular times, as this may help reduce urgency or accidents.
• Fluid timing and hydration: Avoid drinking too much liquid shortly before bed to reduce frequent nighttime urination.
• Diet changes that support digestive health: Ask your doctor or a registered dietitian to recommend a diet that can help with constipation, bloating, and related issues.
• Tracking symptoms: Record your symptoms in a diary to help pinpoint triggers or timing of symptoms. You can share the diary with your care team, who can advise you on how best to address your symptoms.
• Planning ahead for outings and travel: Try to identify bathroom locations in advance and carry any necessary supplies, such as an extra pair of underwear, wipes, and pads.

Treatments for NMOSD bladder and bowel symptoms

Your care team can determine the most appropriate treatment for your specific symptoms.

NMOSD bladder and bowel issues can be treated with medications, as well as other approaches. One approach is pelvic floor therapy, which can help strengthen the muscles that support the bladder and bowels.

NMOSD symptoms, including those affecting the bladder and bowels, often change over time, so your treatment plan may need to be adjusted. Communicating regularly with your care team is essential to effectively manage your NMOSD symptoms, especially when your condition evolves.

When to talk to your doctor 

It’s important to know when to discuss your NMOSD urinary or bowel issues with your doctor so that they can adjust your treatment plan if needed.

In general, you should let your doctor know about new or sudden symptoms, as well as worsening symptoms. In some cases, they may signal a relapse, and your doctor will be able to determine whether that’s the case. You may also be referred to another specialist, such as a urologist or gastroenterologist, for further examination.

Talking about bladder or bowel symptoms can feel uncomfortable, so it’s good to prepare for your appointment. You may want to write down your symptoms ahead of time and practice discussing them at home.

Managing bladder and bowel issues in NMOSD plays a key role in not only controlling symptoms but also helping you maintain comfort, dignity, and quality of life. Through open communication with your care team and other strategies, you can try to manage the impact of these challenges on your well-being.