Complication: Constipation

“You are going to write about WHAT?” my wife said when she heard about the blog post I planned to write.

“Yep, I said, “a blog about clog.  Constipation.”

Everyone has experienced constipation[1]. It occurs due to illnesses, as a side effect of medications, and as a result of dietary indiscretions. Many older people experience the problem intermittently, if not chronically.

Imagine this is your normal state. No matter how much you exercise, what you eat, or how much you drink, you find yourself frequently suffering from bloating and abdominal pain.  This unpleasant and potentially dangerous condition eventually afflicts most Parkinson’s Disease patients. It is ironic: hands shake; legs quiver; head tilts; trunk squirms. But bowels don’t move.

The problem typically arrives early in the PD patient’s disease life cycle. Constipation, tremors, balance issues, soft voice, and a disappearing sense of smell may be present before diagnosis or shortly after that. To compound the problem, many Parkinson drugs cause constipation. For many PD patients, constipation is an ever-present, defining part of the disease.

Years ago, my vegetarian friends insisted it was all about diet.  The problem, they said, was my predilection for good French red wine and aged cheese. My own empirical research revealed that the wine was fine, thank goodness, but the cheese, alas, was a plug.

I must become a vegan, I thought.  Absolutely no animal products. No meat. No cheese!  Forget the eggs benedict. No dairy products.  No ice cream. NO ICE CREAM!?  Ice cream happens to be my favorite dessert, so under no circumstances would I give it up. Ditto for red wine and occasional cheese.

Still, I tried the vegan route for a short while—no go, so to speak.

The advice came from every quarter.

“Drink eight to ten glasses of water a day.  Eliminate coffee and other caffeinated drinks and all alcohol; caffeine and alcohol dehydrate you. Water aids elimination.”

“Exercise more. Walk 10,000 steps a day. It will help the brain and the bowel.”

“Get more fiber. Take Metamucil^®.”

“Drink prune juice every night before bed.”

I tried them all. Did any of these treatments help?  Each of these remedies worked a little, and they may well work for normal people.  Parkinson’s patients are not normal when it comes to the digestive tract, however, and must take a different path, or a combination of paths. I am not convinced that high fiber/high water consumption cures constipation. In my case, it made it worse. I tried prune juice, but I could not determine whether it worked, for I grew tired of prune juice.

My first exposure to a discussion of the causes of constipation[2] devastated me because I am under treatment for three diseases that may cause constipation:  hypothyroidism, Parkinson’s and celiac disease.  No wonder all the usual constipation remedies did not work well for me or only worked intermittently.  If I was to avoid frequent severe abdominal pain, I needed to find a solution that was safe, self-administered, and could be used when I travel.

Changes to Try

Diet:  Yes, I know I made light of my vegetarian and vegan friends, but I have found that salad, fruits, and vegetables move through the pipes easier and quicker than dairy products and meat.  I do eat fish and red meat but in tiny portions.  I have found that soups and stews with a little fatty meat, beans, and other vegetables are both nourishing and easy to digest and move.  These meals-in-bowls are easy to swallow, and choking is less likely.

Liquids:  I have not found that drinking lots of water relieves constipation; I drink when I am thirsty, but no more.

Medicine:  From 2003 until 2010, I experimented with diet, Metamucil and similar types of high fiber products, and other nonprescription solutions.  I found it necessary to resort to laxatives.  I wanted something nonprescription, non-addictive, easy to take, and easy to travel with.  Most of all, it had to be safe and reliable.  By “reliable,” I mean it had to produce predictable results.  My Parkinson’s doctors and my gastrologist confirmed that my then-latest choice, MiraLAX^®, was safe and reliable for long-term daily use. Despite the clear warning on the box stating, “use no more than 7 days,” I have been imbibing this drug nearly every day since early in 2010. I am nervous about doing this and would like to find a substitute, but so far, I am unsuccessful in my search.

What is MiraLAX? MiraLAX, also known as PEG3350, is an osmotic laxative. It is non-prescription and not a stimulant nor a narcotic. MiraLAX comes as a white powder that, when mixed with four to eight ounces of water or other liquid, has the effect of increasing the amount of water in the intestinal tract to stimulate bowel movements. I have found that the colder the liquid, the more palatable it is.  It generally starts to work in two to four days.

It is the same stuff you take when you prepare for a colonoscopy, except the test prep requires a much larger dose. Apparently, its safety for long-term use partially depends on PEG3350 not being absorbed by the gut. I began to take it in 2010, after studying its safety[3] and efficacy.

MiraLAX is available in premeasured packets that each contain a daily dose (see Figure 1). This packaging is ideal for travel.  For home use, you can buy it in bulk (see Figure 2).  Thoroughly dissolve MiraLAX in water, juice, or some other liquid.   A “blender bottle,” or plastic shaker containing a ball-whisk, is handy for preparing and drinking MiraLAX because a quick flick of the wrist keeps the drug in solution (see Figure 3). I carry one of these bottles in my suitcase for travel.

Figures 1, 2, and 3

       

I URGE ALL READERS TO ASK THEIR MEDICAL PROFESSIONALS THEIR VIEW ON THE SAFETY OF MiraLAX and PEG3350 

Practical Remedies for Home and Travel

The remedies and related paraphernalia I present are my current solutions to these problems. Before you begin to take a new medicine, even an over-the-counter product like MiraLAX, talk to your doctors. I am not 100% happy with what I take now but have not found anything better.   You may chuckle at my equipment list, but you may eventually adopt something similar for travel, and later for home. Despite diet, exercise, and drinking MiraLAX every day, I still suffer extreme bloating and delayed bowel movements for up to four days. This delay happens most often when I travel. To be comfortable on an airplane or a long car trip, I wear pants one size larger than usual.

Constipation and Frequency of Urination

Another constipation-related problem for me and many others is pressure on the bladder from bloating and retained stool. This pressure causes markedly increased frequency and urgency for urination. Unfortunately, these sudden urges typically happen at night, and it is not uncommon for bowel movements to join the nighttime parade.  Six or more nocturnal trips to the bathroom are common. As all Parkinsonians know, nighttime walking is dangerous.

The only safe solution to avoid the risk of falling during nighttime trips to the bathroom is not to walk at all.  A plastic portable urinal works well (see Figure 4 for a urinal made for men; other models are available for women).  These items are inexpensive, easy to empty and clean, and claim only a small space in your suitcase.  The problem is the lids do not close well and, if the user has a tremor, an unpleasant spill could result.  My best idea is a portable pail that is lightweight, folds for travel, and can contain the urinal from bedside to toilet in safety (see Figures 5 and 6).  Finally, a sanitizing solution completes the bedside and travel kit (see Figure 7).

Figures 4, 5, 6, and 7

         

Effective solutions to every PD challenge often require a multi-pronged response of new habits, new medications, and physical tools to make life easier. Constipation is no different, but many patients are more comfortable discussing their tremors than seeking help for their constipation. If you have come upon a helpful solution, please share it in the comments. Thank you.

[1] Constipation refers to bowel movements that are infrequent or hard to pass.  The stool is often hard and dry. Other symptoms may include abdominal pain, bloating, and feeling as if one has not completely passed the bowel movement. Complications from constipation may include hemorrhoids, anal fissure or fecal impaction. The normal frequency of bowel movements in adults is between three per day and three per week. Babies often have three to four bowel movements per day while young children typically have two to three per day.

Source:  Wikipedia

[2] Constipation has many causes.  Common causes include slow movement of stool within the colon, irritable bowel syndrome, and pelvic floor disorders. Underlying associated diseases include hypothyroidism, diabetes, Parkinson’s disease, celiac disease, non-celiac gluten sensitivity, colon cancer, diverticulitis, and inflammatory bowel disease. Medications associated with constipation include opioids, certain antacids, calcium channel blockers, and anticholinergics. Of those taking opioids about 90% develop constipation. Constipation is more concerning when there is weight loss or anemia, blood is present in the stool, there is a history of inflammatory bowel disease or colon cancer in a person’s family, or it is of new onset in someone who is older.

Source:  Wikipedia

[3] Before I decided to take MiraLAX every day, I researched the product. Additional support for my decision came from a July 2003 study entitled “Safety of Polyethylene Glycol 3350 for the Treatment of Chronic Constipation in Children,” by D.S. Pashankar, MD, MRCP; V. Loening-Baucke, MD; W P. Bishop MD.  In this study, they concluded that “long-term PEG (polyethylene glycol 3350) therapy is safe and well accepted by children with chronic constipation…”

Since 2010, there have been new concerns about the use of PEG3350 for children under 17, and especially long-term use. The FDA has reportedly “… received thousands of child injury reports – spanning back as far as 1999…”  The June 19, 2018, edition of The Legal Examiner reported that the FDA, in 2014, funded a group of scientists at the Children’s Hospital of Philadelphia to examine the “… reports of parents who say MiraLAX causes extreme neurological symptoms in children.”  Researchers expect to release their results of the preliminary investigation later in 2018. This initial study will determine whether PET3350 enters a child’s bloodstream, a prerequisite for it to cause side effects. Despite this suggestion of elevated risks for children, most doctors believe PEG3350 is safe for adults.