Multiple Sclerosis (MS) is an unpredictable disease, requiring management tailored to each person, so they can remain as healthy and independent as possible. Over the years ICS has developed a specialized program of long-term care for people with MS, so that we can best provide the support our members with this condition need.
The ICS MS Team is overseen and staffed by experts: a nurse practitioner who is a leading MS advocate, registered nurses who are certified MS specialists, and social workers who have experience working with people who have MS. We understand that our members have different symptoms at different times, which can be bad one day and better the next, creating confusion and anxiety. We coordinate the health and social services our members need. We provide information to help them keep up their strength and prevent complications. And, when needed, we deliver specialized services to their door – from a physical therapist to home infusion nurse, wheelchair technician or personal care attendant.
ICS also has a close relationship with the New York Chapter of the MS Society, which conducts exercise classes and other events for people with MS at our Brooklyn Member Center. As an MS certified nurse and a member of the ICS MS Team, I recently had the opportunity to share important information about bowel and bladder management at a day-long Spanish-language MS Society event for families who have loved ones with this condition.
The care and support of family members and friends can be vital to someone living with MS. In educating family caregivers at the MS Society event, it was clear that providing them with information could go a long way in helping them help their loved ones. What follows here is the heart of my presentation.
Just what exactly is MS anyway?
MS is a disease that destroys the protective cover of nerve cells in the brain and spinal cord. This disrupts the nervous system of someone who has MS, resulting in a wide range of symptoms. MS shows up differently in each person, and the symptoms can occur in isolated attacks or may build up over time. Some symptoms may fade completely, but permanent neurological problems are common as the disease advances. Common symptoms are fatigue, numbness and tingling, weakness, difficulty walking, spasticity, vision problems, dizziness and vertigo, sexual problems, pain, cognitive impairment, and bowel and bladder problems.
Why bowel and bladder problems?
Since MS attacks the nervous system, it can have a huge effect on any bodily function that is managed by the nervous system. This often includes disrupting the body’s normal bowel and bladder function. With MS, neurological damage to the nerve pathways interferes with signals from the brain to the bowel and bladder which would normally alert the person that they need to use a bathroom.
This disruption can take many forms. Damage to the nerve pathways may result in an inability to store urine, making the person incontinent, or the reverse – the person may not be able to urinate. If understood and managed, someone with these problems can continue to lead a healthy, independent life. However, what often happens is that embarrassment leads to a delay in seeking medical assistance. This can result in dangerous complications, such as the backing up of urine into the kidneys, urinary tract infections, or kidney stones.
When this happens the person with MS may or may not experience pain, depending upon their nerve function. That makes it especially important to watch out for other signs that something is wrong, such as fever, increased spasms, nausea, vomiting, change in color or blood in the urine, frequent urination, burning or discomfort during urination, flank or back pain, and even seizures. When someone with MS has any of these symptoms they must receive medical attention right away. Infections must be treated with antibiotics to avoid sepsis or death.
How are bowel and bladder problems managed?
Bladder problems are managed in a variety of ways. Medications can reduce bladder muscle spasms that make it hard for the person to empty their bladder. Urinary incontinence can be managed using absorbent diapers, liners or pads. For some people intermittent catheterization – emptying the bladder using a thin tube inserted into the urethra – is a good option; however, for many people with MS symptoms such as spasticity (abnormal involuntary movements) or muscle weakness make catheterization too difficult to do on a regular basis.
Another option is the use of a permanent catheter attached to disposable bag that collects urine. This method can prevent an overly stretched bladder due to fluid retention, but people using it must be closely monitored for signs of infection. Because each person’s condition and needs are unique, and MS can affect the bladder in many different ways, a close collaboration with a healthcare provider – who can be an urologist or another type of medical provider with experience in this area of practice – is essential to creating the best treatment plan.
Problems with bowel control occur for the same reason as with bladder control: damaged nerve pathways fail to signal that it is time for a bowel movement. This often leads to constipation, which may be made worse as a side effect of medications commonly prescribed for MS or due to low fluid intake, which we see often as the person with MS attempts to control their bladder by drinking less. Other contributing factors can be poor dietary habits (not enough fruits and vegetables or other sources of fiber) and physical inactivity, often resulting from mobility impairment. And some people with MS have difficulty swallowing, making it hard to eat a balanced diet or drink sufficient fluids.
As with not urinating, constipation carries medical risks. It can increase bladder problems. It can cause fecal matter to become impacted and backed up, requiring medical attention. Constipation can be managed with diet modification, medications and by establishing a regular bowel routine. Rather than become constipated, some people with MS completely lose control of their bowels, which can be very distressing. Managing this condition may require establishing a bowel emptying schedule and/or the use of protective undergarments. Again, whatever changes in bowel function may occur, it is essential to involve a healthcare practitioner who has experience treating people with MS.
While none of this may be easy, bowel and bladder problems can be managed, but no one can do it alone. With the help of their healthcare practitioners, home care aides, personal assistants and supportive family members, many ICS members have learned to manage these challenges while continuing to lead rewarding and independent lives.
In conclusion, communication is key! Although it may be uncomfortable or embarrassing to discuss, it is essential for people having bowel or bladder problems to talk with their health care practitioners and establish a treatment plan.