Scleroderma and Managing Incontinence

Scleroderma and Managing Incontinence

By Paula Erwin-Toth

When you live with scleroderma, you are facing challenges big, small and in-between. There is one topic you might find difficult and embarrassing to discuss with your health care provider: incontinence. But as a long-time nurse I can assure you that you are not the only one. Incontinence is a topic many people are fearful to discuss with their doctor, nurse, and even family members. In fact, even some health care providers are even reluctant to bring it up with their patients.

How does scleroderma affect incontinence?

Although issues related to fecal incontinence are more common in people living with scleroderma, urinary incontinence may be a problem as well, especially for women. Scleroderma is a connective tissue disorder. The overproduction of collagen can impact the function of the muscles that allow us to chew, swallow, digest and/or move food along the gastrointestinal tract. Sometimes this can cause the muscles to become out of sync or result in a narrowing or stricture along the way. It can also affect muscles that allow us to sense when the bladder and rectum are full and allow us to control when we go to the bathroom. If there is a narrowing or stricture along the way, your body will pull more fluid into the intestine in an effort to push the stool past the narrowing. This can result in terrible abdominal pain that usually comes in waves and is followed by explosive watery, diarrhea which can be very difficult to control. A very dangerous complication, although uncommon, is a complete bowel blockage. If you suspect this is the case, you need to head to the nearest emergency room!

Preventing skin breakdown

Incontinence Associated Dermatitis (IAD) is not “just diaper rash.” Skin breakdown around the anal area is not only painful, it can cause swelling or infection and can interfere with your ability to tighten your external anal sphincter when you are trying to control your stool. Caring for your skin to prevent breakdown and timely treatment should breakdown occur are important. Here is how to best do that:

Some tips to help you manage incontinence

Although having incontinence can be very uncomfortable and frustrating, there are several things you can do that help manage it.

  • Keep track of your episodes of incontinence. There are many diary or journal examples you can follow from the simple to complex.
  • Be sure you and your health care provider are using the same terms. Incontinence can mean different things to different people. For example, are you unable to control when you pass gas but can control your stool? Can you control your bowel movement if your stool is thicker, but have no control if it is watery? An absorbent pad or pant made specifically for incontinence can add security in case you are not able to get to the bathroom in time.
  • Have your skin care supplies with you, you may even want to moisten a few soft paper towels and store them in a sealed plastic bag and carry extra underwear for ‘just in case’. Also, carry a small plastic trash bag so you can dispose of your soiled paper towels and pad/pants since you do not want to cause plumbing problems.
  • There are small ‘Can’t Wait’ cards available to help gain access to toilet facilities when you need them most whilst helping to reduce any embarrassment or confusion regarding your need. They discreetly state “I cannot wait! I have a medical problem which requires bathroom access right away. Thank you for your understanding.” Show this card to staff at a business or at the head of a long line to the bathroom to enlist their help in giving you bathroom access. A few states even have laws that require bathroom access to people with medical needs.

Incontinence may cause people to feel isolated and alone. Depending upon the underlying cause there are many treatments available that can help you correct or more effectively manage your incontinence.

Remember, just as you do not allow scleroderma to define you, do not let incontinence take away your power!

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