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!

Aiming For A Bittersweet Life: The Liberation of Expecting To Become Disabled

Most health advice and guidance teach us what to do to avoid illness. I spent many years following all the advice and making my health a priority with diet and exercise. Once I was diagnosed with Multiple Sclerosis, my view of wellness expanded beyond just my physique, vitals and medical test results.  It now includes adventure, purpose, giving, gratitude, finances, outlook and relationships as well as physical fitness.

My outlook on my future has evolved to believing disability is inevitable for me if I don’t die young. There’s liberation in knowing disability awaits. While I continue to do things that improve my health, I’m embracing illness and aging. Assuming my body will decline someday has been freeing. I don’t live in fear. It’s like my leash has come off and I’m eager to do everything that requires physical mobility. I want to prioritize experiences and activities that depend on my body’s abilities and do them sooner than later.

I think of it as aiming for a bittersweet life to be positive. Living a positive life includes experiencing grief and anger and frustration. It's finding the beauty in all of those experiences that makes for a positive life. Sometimes when I'm feeling low the best thing to do is to watch a sad movie or listen to a song that breaks my heart because then I know I’m living all of life and not just the pleasant parts.

It’s not a negative perspective. It’s embracing the future as it could be given MS has no cure and the medications available today merely slow disease progression. Thinking positively doesn’t mean only hoping for the best outcome. It means assuming things will fall apart periodically and it’ll be okay. I’ll adapt. I’ll continue to find purpose and experience joy. All lives will end. A bittersweet life satisfies the wonderful and the heart wrenching, and I want to experience it all.

Part of embracing a future with an eroding body and disability is cultivating the skill of living well with loss. Get really good at it. I try not to sidestep it or just get through it but to genuinely embrace loss. My goal is to have had such a satisfying life with fulfilling relationships that there will be grief, but there will also be a sense of satisfaction that I didn’t hold back or miss out.

Positivity is not being happy; it's finding grace in that ugly terrible.  When I feel fear, I analyze it to figure out what it is I'm afraid of. My perspective is not just looking at the bright side of things. It's accepting the hard, challenging, frustrating and miserable as having their own form of beauty. 

Somewhat similar to physical agility where people are able to move and fall so that they don’t injure themselves and can get back up, I aim for emotional agility where I’m able to feel heartbreak and fear without it injuring or paralyzing me. The skill I spend the most time cultivating is experiencing pain, fear and discomfort without lashing out.

Since the day I was diagnosed with MS in 2008, I’ve become liberated and made myself and my goals priorities. Cultivating the skills to live through and embrace loss, find beauty in everything, and aim for the bittersweet has given me a positive perspective that works for me.

New Year’s Resolutions, Taking Stock & Creating a Personal Health Reference Manual

I used to think it was more important to just do things than to track them, but now I see the value in writing them down and acknowledging how far I’ve come over time. When the calendar year ratchets up and I think of myself as another year older, it’s a natural time to reflect and make goals. I like to review what I’ve accomplished, endured, thwarted and nurtured. When I’m feeling like I have a lot I still want to do, knowing how far I’ve come is a reality check for my expectations.

I aim for full life wellness, and I categorize my areas of wellness as health, home, relationships, finances, creativity and adventure.  At all times, I try to have at least one goal for each area. I like to incorporate small activities in my life that move me toward achieving my goals, and I like doing one or two large projects at a time that leap me forward on a goal.  Depending on my levels of energy and obligations, I’ll do a little or a lot on the larger projects. I try to establish and maintain balance in my life without sacrificing or ignoring another aspect of my life. My overarching goal is to keep working toward something while appreciating who, where and what I am now.

My 2017 Resolution: Take stock.

I think it’s helpful to take stock.  To think about what made me happy in the past, what I love about the present, and what I would like my life to be soon or someday. Committing those thoughts and ambitions to paper or a digital file allows me to look back over time to see if I still want the same things in life now that I thought I wanted in the past.

I’m taking stock figuratively and literally. I’m pouring through all of my personal belongings, my finances, my routines and my data. I’m compiling the things I’ve learned over the years since I don’t always remember something when I encounter it again. This will focus my attention on what I have, what I could adapt to use differently, what I still want, and what I’d like to upgrade for the perfect fit.

My hard copy health tracking information to compile

My Personal Health Reference Manual

A big project I’d like to accomplish this year is compiling all of my health information for things I’ve experienced, tried and currently use. I aim to create and maintain a binder for all the ways I keep my health in check. It will include all the successful and unsuccessful treatments.

The idea for this project came to me after my hip started hurting. I know that my hip can hurt when I jog longer distances, and I could tell that I’d overdone it. I believe the cause is foot drop that slightly affects my gait when I jog and triggers a misalignment in my hips to compensate.  In the past, I’d curbed my distances to deal with it. Sadly, it took hurting my hip twice in a month and six weeks of recovery time before it occurred to me I’d dealt with this before!  I remembered that I had physical therapy exercises from seven years ago that helped heal my hip from the same problem.  My hope is that using these exercises will not only allow me to heal my hip faster but prevent future injury and allow me to work back up to longer distances again.

This experience made me realize I need a personalized easy-reference health manual to manage my health with less stress. MS affects each person differently, and it requires constant adaptation to live successfully with MS. I want to reduce the amount of time spent enduring something and wracking my brain figuring out what will work for me in order to hasten effective treatment. An up to date personalized health reference manual will help.

The information I want to compile will include the following:

Conditions, Symptoms, and Injuries

1. Indicators, triggers and causes

2. Preventative measures including lifestyle choices, nutrition and activities

3. Treatments including prescriptions, exercises, and natural remedies

     Pros
     Cons
     When it’s effective
     When it’s not effective
     Why I choose this (or don’t)

4. Experiences with this issue - what’s worked or failed

5. Theories for why my body reacts a certain way - correlations proven and disproven

Sources of information I’ll use to compile this reference manual include:

• Tracking calendars of health data and disease modifying drugs
• Notes I’ve taken at health appointments
• Physical therapy treatments and exercises 
• My memory
• Books and internet resources that can trigger my memory for things I’ve tried but didn’t write down.
• Medical records from doctors

I’ve included a couple of examples at the end of this post that I’ve put together so far. It’s tailored to my health and experiences, so yours will look different. It’s also a work in progress, so I’ll keep adding and editing it as time passes and I change.

I wish I was low maintenance. Sadly, as I’ve aged I’m getting to be higher and higher maintenance. I joke that at least I’m doing the maintenance and not pushing that responsibility onto other people!

That said, if I do ever need help with my health, this will be a great tool for anyone helping me.  They’ll know what I've already tried, what works, and what hasn’t worked. I won't need to start from scratch with each new provider. 

This is organizing my health from my information and experiences. It frees me from relying on information from the web each time I confront an issue. Sometimes the information can just be too much, and what will help me gets lost in the mass of opinions and recommendations. This is organizing around me and benefiting from the decades of experience I have being me.

Examples of pages from my Personal Health Reference Manual:

(Apologies for the formatting. Blogger is a bit tedious and not very accommodating for this.)

My Interview With Health.com

In January 2016, Health.com interviewed me for an article, "6 People Explain What It’s Really Like to Live With MS." A small portion of it was included in the article, and I'm posting the full interview here. Reflecting on my responses from almost a year ago, I'd say my answers still ring true for me today.

Can you describe your first symptoms? Were you ever misdiagnosed before learning it was MS?

The symptoms that led to my MS diagnosis were extreme fatigue and numbness. The first time I realized something was off was when I leaned forward at my desk and couldn’t feel the keyboard pushing against my belly. The tingly numbness progressively expanded within a few days to include all of my body from the bra-line down to my toes.  I could walk, but I tripped more and fell a few times. I assumed all would be fine, and I even ran a 12K race with fatigue and a numb body.

I also realized after the fact that the fatigue I had been experiencing for years wasn't normal. I just thought each time I was exhausted that I was fighting a cold, stressed, or working hard and needed to rest. I also realize now that constipation was an early MS symptom for me. 

I wasn’t ever misdiagnosed prior to learning it was MS. The results from MRIs of my spine and a spinal tap made it clear that I had MS and led to a diagnosis within a month of my first known symptoms. The number of lesions that were old and not currently active in my spinal cord made it obvious to my neurologist that I’d had MS for years. 

When did you first receive your diagnosis? What was it like to hear?

My first known exacerbation involved three days at the overcrowded emergency room at Harborview Medical Center, a trauma center in Seattle, where I was told that the chance of me having MS was low. After a spinal tap, MRIs in the middle of the night, eye tests, and a round of steroid infusions, I was released with instructions to see a neurologist.

My diagnosis occurred at a scheduled neurologist appointment the morning of my son’s graduation. It was a complete shock to me, because I’d thought of myself as very healthy. I’d assumed the numbness I’d had would turn out to be explained by something simple and curable like sciatica. I knew nothing about MS, so my first reaction was to ask the doctor if she was sure (yes) and then if MS is fatal (no).  The neurologist acted as though it was no big deal to tell me I had MS, gave me information on four disease modifying medications to review to decide which one to take, suggested I sign up for Bike MS, and gave me the book, “MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis, ” by Allison Shadday. She also told me to look online at the National MS Society webpage to answer any questions I had.  I was dumbfounded. 

During my son’s graduation later that day, seeing elderly people with walkers and moving slowly held an entirely new perspective for me. I was scared for what my future held, and I just wanted to hold it together to celebrate my son’s big day. 

The next day I began searching the web and library for any information I could find about MS. I called the NMSS and joined the local self-help group. 

What is the biggest day-to-day challenge you experience?

My biggest challenge is definitely fatigue. I diligently monitor my energy level, and I take it seriously when it dips to the point of feeling like regular living is like trying to walk through water. I monitor what makes me feel energized and what taxes me, and I budget my activities and energy to maximize my productivity and happiness. 

How about some of your happiest, most positive realizations or memories since being diagnosed?

The biggest shift in thinking I had that helped me transition from feeling betrayed by my body to feeling compassion for myself was to recognize that my body isn’t my enemy. My body is great at a lot of things, and my immune system sucks at distinguishing between foreign invaders and the insulation on my nerves.

Lots of people talk about having MS as struggling with MS, fighting MS, or battling MS. And that may work great for them, but it never resonated with me. Constantly fighting seemed exhausting to me when I was already experiencing extreme fatigue. And fighting myself made me feel powerless. Thinking of my body as a buddy that is doing the best she can made me feel like I had some control. It made me feel like I could help my body continue to do as much as possible for as long as possible. 

In the past eight years I learned to worry less about what can go wrong, and I look forward to what can go right even if things don’t go my way. Specific things I’ve done since being diagnosed that brought me joy were doing yoga, learning to trapeze, singing karaoke, visiting France, walking a marathon, changing my career, and starting a blog, “Keep Doing What You’re Doing,” at http://stacieprada.blogspot.com.  MSAA has been terrific at supporting my writing and providing thought provoking themes to consider. Above all else, I cherish the personal relationships that have developed and strengthened since my diagnosis. 

What are the biggest life changes you've made to accommodate for the disease?

I’ve started making myself a priority in my life. I learned that diminishing my health and putting work or other people’s needs ahead of my own contributed to my MS disease progression. I learned that pushing myself when I’m tired or ignoring symptoms has a cost that I’m not willing to pay with my mobility or future health. I now make time to enjoy my life today and balance it with planning for my future.  And when I can’t do everything I want to do, I accept it without guilt as a low price to pay for my future quality of life.  

What are the biggest misconceptions about living with MS?

I think people want to believe that what works well for one person will work for every person and that if one person can do it than everyone can. We’re all different, and MS affects us all differently. While we can share our experiences and learn from each other, it’s all trial and error in figuring out how our bodies can best cope and thrive with MS. I’ve also learned that what worked for me last year may not work for me today.  It’s constant adaptation. 

What is your mantra for staying positive and strong while living with MS?

When I feel low my mantra is, “I will feel good again, I will feel good again, I will feel good again.”  I also tell myself, “I don’t know what I need to learn or think about differently to live with this, but it’ll happen.” It helps me to stay open to lessons, believing they’re around us all the time. I trust that when I’m ready to learn the lesson I need, the opportunity will be there for me.

I also remind myself that things can always be worse and that my life is good.  I try to change what I can, accommodate what I can’t by making changes in my life, and look at challenges with a different perspective to feel better. 

What advice would you give to someone newly diagnosed

It’s more of an approach than a sound bite since each person is different, is in a different place in their lives, and reacts to an MS diagnosis differently.  That said, I like them to know that they don’t need to figure out forever right now.  If symptoms came and went prior to diagnosis, then they’ll likely continue to come and go.  It will get better, and their life may even get great.

I actually wrote a blog post specifically on this topic, Pay It Forward: Talking To People Newly Diagnosed With MS.  


From the responses I provided to the interview questions, Health.com wrote the following:

"It’s all trial and error in figuring out how our bodies can best cope." — Stacie Prada, 45, county treasurer

  
The first signs of fatigue and numbness eight years ago didn't phase Prada. "I just thought each time I was exhausted that I was fighting a cold, stressed, or working hard and needed to rest," she says. "I assumed all would be fine, and I even ran a 12K race with fatigue and a numb body."

On the morning of her son's graduation, Prada finally saw a specialist. "The neurologist acted as though it was no big deal to tell me I had MS, gave me information on four disease-modifying medications to review to decide which one to take, suggested I sign up for Bike MS, and gave me [a] book," she remembers. "I was dumbfounded."

Today her fatigue is near-constant. "I diligently monitor my energy level, and I take it seriously when it dips to the point of feeling like regular living is like trying to walk through water."

Her new attitude isn't to "fight" or "battle" the disease. "That [language] never resonated with me," says Prada, who also blogs for the MSAA. "Constantly fighting seemed exhausting to me when I was already experiencing extreme fatigue. Thinking of my body as a buddy that is doing the best she can made me feel like I had some control. It made me feel like I could help my body continue to do as much as possible for as long as possible."

Feeling Connected and Nurtured When I’m Alone on Christmas

Families seem to be expanding and shrinking simultaneously these days. With second and third marriages, births, in-laws and kids by marriage, the number of people I care about and am related to keeps growing. At the same time, divorce, death, living miles away and conflicting schedules reduce the number of people I spend time with in-person during the holidays.

This year I vacationed over Thanksgiving week, and I enjoyed a lot of time with family and friends while having a lot of fun. Now I’m back at home and while I’ll have plenty of parties to attend this month, I anticipate spending Christmas Day alone. Living far away from my closest family members makes it impossible for me to spend all holidays with them. I enjoy spending time with others, and I enjoy my time alone. Still, there’s something about the holidays that is tricky. If I don’t plan ahead, it can be easy to fall prey to self-pity.

In my life, I’ve experienced a couple decades of small family gatherings and another couple decades of large and wonderfully chaotic extended family holiday events. More recently I’ve experienced celebrating holidays solo, and it’s coerced me to think hard about what will allow me to enjoy the day alone. For me, I feel nurtured if I can include some time connecting with people important to me, some time outside reflecting and appreciating all of the good things in my life, and some time indulging with good food and drink.

If I’m going to be alone on a meaningful day, I try to connect with others in one or more of the following ways:

1. Try to set up a time to Facetime or phone people important to you. If schedules are complicated, email or text a holiday greeting.
2. Do things to connect with people throughout the month or year, not just on or near the holiday itself.
3. See if friends will invite you to join them. You can be somewhat subtle by asking what they’re doing. They’ll ask what you’re doing and often invite you to join them, but make sure before asking that it’s someone with whom you would like to spend the day.
4. Ask a neighbor if they’ll be around. You can get together for an hour for coffee, tea or wine. It doesn’t need to be big, just something to break up the day and include some interpersonal connection.
5. Volunteer at a local charity. You can help prepare or serve a meal for others. You can also just be a smiling greeter if you’re not able or up to performing tasks. Listen, share, learn and connect.
6. Tell people that you’ll be alone and would appreciate a phone call. Often people assume I have it all together and will be busy. They’re happy to connect when they know it’ll be appreciated and not a bother.
7. I’ve never found a relationship that does better from no interaction. Give people a chance, and don’t assume the worst. Appropriately credit responsibility for behavior to the person doing it. Feel good about yourself. Make sure you feel good about your behavior regardless of the actions of others.
8. Consider people you know that may also be spending the day alone. Make plans to do something together for a portion of the day.
9. Post something to Facebook. One Thanksgiving I enjoyed watching the sunrise on the beach while drinking coffee.  I took a video of the sunrise and shared it with friends while expressing my gratitude for them in my life.

Some of the ways I’ll nurture myself include the following:

1. Do something special for yourself to commemorate the occasion. Do something indulgent for you, or engage in some activity you love. Sit on the beach, go for a walk, or stop at a coffee shop that’s open. What you love may be totally different than anything I would ever consider.
2. Find a restaurant nearby that’s open, and go alone if you want.  At the very least you’ll talk to people that have to work instead of spending time with their own family.  It’s usually a very friendly time.  Plan ahead since a lot of places are closed on holidays.
3. Visit and leave flowers at someone’s final resting place. Honor the impact that person had on your life.
4. Make and enjoy a meal you love if you enjoy cooking.
5. Decorate, even if it’s just a holiday themed bouquet or plant. Differentiate the day and your surroundings from every other season or day of the year.
6. Get outside. Even a rainy, cloudy day outside can feel better than staying inside or under cover.
7. Think about what you could do so that you’ll feel loved and appreciated even if it’s just you who loves you.
8. Make sure you find a way to enjoy the time instead of just trying to get through it. 

Connecting with people important to me takes some initiative. Lots of them have a busy day ahead, so it’s good to plan in advance to make sure my emotional needs met. Overall, I’ll be happy if I remember to genuinely look at the bright side, do something I love, connect with everyone I care about either during the month or on the day, and find a way to be generous.  And if nothing else works, I’ll distract myself and remember tomorrow is another day.