Monday, May 29, 2017

Dealing With Embarrassing Symptoms: Constipation

When MSAA asked if I wanted to contribute something for their theme this month I knew I had a lot to say, but I was uneasy being frank about a topic that would be on the internet for anyone to judge. It was exactly that reason why I didn’t play it safe and just talk about embarrassing symptoms generally.  Because I felt a bit of fear sharing my experiences with constipation, I decided it was the perfect one for me to discuss.  Courage gathered and challenge accepted. So here goes…

There’s no glamour in being good at living with a chronic illness, but there is dignity in exhibiting confidence and acceptance of the reality of living with an incurable health condition. Aging gracefully is met with admiration, and I maintain that living confidently and openly with an illness is worth undertaking.  People living with illness deserve to live a life without shame or feelings of inadequacy for circumstances beyond their control.

Constipation is a common Multiple Sclerosis symptom. It’s embarrassing, and it’s an uncomfortable topic to discuss.  Try to get over the embarrassment of bowel problems.  If the doctor doesn’t have previous experience with an embarrassing issue, it won’t be the last time.  You may be teaching the doctor something that will be useful for the next patient.

People that have helped me with different aspects of MS constipation over the years have been my Primary Care Physician, Neurologist, Physical Therapist, Urologist, Naturopath, yoga instructor, people in my MS Self Help Group, and close friends who have had their own experiences or been caretakers for their parents.

The MS Self Help group I’m in doesn’t ever respond, “T.M.I.,” or shut down a conversation when they’re uncomfortable. They may get quiet and let others speak, but I’ve never seen someone tell a person the topic isn’t appropriate. Meetings are a perfect resource and safe environment for sharing our specific problems and learning what other people do.

People are trying to be helpful when they diagnose your problem.  They’re sharing what worked for them in the past, and they’re excited that they might be able to help you. With constipation though, it’s necessary to look at the consistency of your poop before deciding how to fix it.  Most treatments assume you’re constipated because medications are hardening your stool or you’re not getting enough fiber or fluids in your diet. Sometimes those suggestions can help alleviate constipation. But with MS, that may not be the cause or remedy.

Sometimes the problem isn’t the consistency of stool; it’s that the poop should be able to move but won’t. Your fiber intake and hydration level can be perfect and your poop can be the perfect consistency, but the inner and outer anal sphincters may not be operating on command.  The problem can be that the nerve messages flowing from the brain to the anus aren’t getting there to let a bowel movement happen naturally.  It can also be that spasticity is refusing to let the muscles relax. If poop is the right consistency, then more fiber doesn’t help with this.  With laxatives, you can get the poop to a diarrhea like consistency to alleviate unsatisfying bowel movements.  While it’s a relief to empty the colon, it’s a roller coaster approach to dealing with constipation.

Pooping regularly and easily requires the perfect combination of good stool consistency and the anal sphincters functioning correctly. When the poop is good but MS lesions are blocking nerve messages or spasticity is wreaking havoc, there are a number of things that can help:
  • Self-diagnosis: Learn how to detect the root issue causing constipation. Is it stool consistency, malfunctioning nerve messages or something else?
  • Schedule: Allow time for coffee, tea, or medications to take effect before you need to be somewhere.  It may require getting up earlier and taking more time in the morning.
  • Movement: Stretch, twist, and move the mid-section to shake up the system to help induce a bowel movement. Exercising on a stationary bike, elliptical or treadmill is good since you’re likely to be close to a bathroom when you feel you need to go.
  • Self-massage: Look on the internet for “self massage for constipation.” There are a lot of videos and suggestions for how to massage the abdomen to induce a bowel movement.
  • Breathing: Look on the internet for “breathing exercises for pooping.” Focusing on breathing and moving the belly can help focus attention away from the sphincter, relax the rest of the body, and trigger the involuntary muscles that can help a bowel movement.
  • Gut health: Probiotics and prebiotics can help maintain regularity, and they come in a variety of forms from pills and liquid supplements to fermented foods and yogurt.
  • Bowel training:  Learn what each muscle in the pelvic region feels like when it’s tightened and when it’s relaxed in order to better control them. Kegels can increase the strength of the muscles and the ability to control them. Biofeedback with a trained professional can help with learning how to better control the external anal sphincter.  The internal sphincter isn’t under voluntary control, but learning to relax the muscles in the area can help with bowel movements.  
  • Pooping position: Make sure to sit in a position that isn’t making it harder for the body to have a bowel movement.  A foot stool like a Squatty Potty creates a squatting position while sitting on a toilet so that the colon is straight and not kinked.
  • Supplements: Senna and magnesium are among the many, many laxatives available in pill, liquid and tea form available to soften stool if needed.
  • Enemas & Suppositories: Saline enemas and glycerin suppositories can be effective for emptying the bowels when constipation lasts too long and immediate action is needed.
  • Bidet toilet seat*: This attachment to your standard toilet can stimulate the body to have a bowel movement less invasively than an enema, and with time it can in a way train the colon to respond to the water.  It can also help reduce the instances of UTI's for some people who use a bidet.
  • Botox injections and muscle relaxing medications are treatments that can help neutralize the effects of spasticity which is another common MS symptom that can lead to constipation.

The body is an engineering marvel, and when it works well it seems super simple.  When things stop working as well, it takes a lot of self-discovery and research to figure out what’s going on. Embarrassing symptoms are frustrating, because they drastically increase the discomfort quotient and reduce the options for gathering treatment options.

Learning to overcome feelings of embarrassment will go a long way to diagnosing and finding treatments for symptoms.  Be courageous. Be confident in your duty to advocate for your well-being.  Be a good example and resource for others who may need to find their own courage to do this someday.

* The suggestion regarding bidet toilet seats was added after a reader suggested it and described how it has benefited her. Many thanks!

Saturday, May 6, 2017

We All Have Hardships And Inspiration Is Everywhere

This father lived a little over a year beyond his daughter’s death. He was in the middle of his 75th year when he died, and his daughter perished in the midst of her 47th year in her antique airplane. His passion for flight had become a joy for her to share with him. To learn to fly and live adventurously – these were in a hobby they could share that would help her connect with her father and feel loved.

Sometimes we don’t get what we need. This father, my grandfather, became fatherless at the age of nine at the beginning of the Great Depression.  This boy was thrust into the role of man of the house and helped support his mother couriering laundry for people. He’d pick up clothes for washing and return them clean. The price was a nickel as I recall.

The daughter, my mother, became motherless at the age of two. She learned her mother had left the family and wasn’t coming back. This toddler didn’t speak for hours, and ever after she spoke with a stutter she hadn’t had before. And when the daughter died, she left four daughters grieving.  They were three young adults and one child ten days shy of ten years old. All of them – the father, the daughter and the granddaughters - all lost someone they needed. The fact that they all lived with the absence doesn’t mean their loved ones weren’t needed. The void gets filled in some way – with heartache, distraction, and sometimes purpose, but that person never gets replaced.

There’s a new monument near the father and daughter’s graves. Three children all gone on the same day, much too young and with senseless cause. The Tower children were taken in an instant. I looked it up later and saw they’d perished in a house fire. The mother had escaped, and the father lived elsewhere. The fire was ruled an accident. It was the worst kind of accident – one that can’t be fixed.

In each of our grief we can feel isolated and lose sight of the grief others have had or will experience in their lives. There’s always a story that is more tragic. To feel the worst pain we’ve ever felt gets some perspective when we compare ourselves to people enduring pain we imagine to be exponentially greater than our own.

This doesn’t mean we should minimize our own pain. It only means we have an ounce of knowledge of the pain, loss and grief someone else might be enduring that helps us see what there is to appreciate in our own experience.

When in poor health it’s natural to compare ourselves to when we were in better health or to others that we presume are in good health. It’s helpful though to compare ourselves with those with greater challenges. Noticing perseverance is inspiring. It’s a helpful reality check for me to see people who can’t walk at all when I’m only tripping and in pain or to see people with permanently clawed hands when mine are aching and not cooperating as much as they usually do.

I could fear their reality as my fate, and when I allow that it depresses me. But when I look beyond the conditions and consider their lives as a whole, I’m inspired by their resilience, perseverance, and matter of fact acceptance of their conditions.

I may be chronicling my declining health, or I may be sharing a life worth living with challenges. You’ll form your own judgments, but I see it as sharing our invisible conditions to connect us and to remind ourselves that we aren’t alone in our fears, grief or hardships. We all have them in one way or another at different times in our lives.

There’s comfort in compassion without pity. While it may just be my pride showing, I prefer it that way. I try to convey my compassion with respect for the differences in our experiences that doesn’t come across as competing for the Who Had It Worse award. And I like it when people are able to do the same for me.

It’s beautiful to know we each have a unique experience and still we all share feelings about them that bind us together. To feel a kinship laced with understanding, respect and love for our fellow grievers, survivors, sufferers and thrivers is heartening and motivating to keep going when it’s tougher than usual. It can give us the strength we need to continue with our own hardships when others are in the midst of greater suffering.

Among my sisters, it was a given that our youngest sister had it the hardest. She’d had so little time with our mother and she still needed so much. At least we’d had our mother’s love and support through young adulthood.

I think of the Tower children and their family. I can only imagine the grief their parents live with. My mother died twenty-three years ago this month. It was a decade before I was able to talk about my mom without showing visible grief. The family of these children has been living with their absence just over a year. In their invisible condition, I hope people show them kindness, patience and compassion even when they know nothing about their lives.

And I hope people give this.  Not because the Towers deserve it, but because people can be amazingly kind.

Each of us has challenges. Sometimes we’re lucky and the things we’re dwelling on or frustrated with aren’t monumental. I think everyone always has a set number of challenges that they’re dealing with that are frustrating. It’s just at times that huge life events or conditions move in and make the rest seem inconsequential. When my problems are small I can appreciate them for their trivial nature, and when they’re big I can look for inspiration to keep going.  There’s always someone out there that is living well with more difficult circumstances. And that's heartening for me.