Mama has a potty mouth and other social taboos

Sometimes things are better left unsaid.  Some aspects of life are better kept in secret, not to be pondered in public places or discussed in polite company.  Seriously, when it comes to bathroom habits, many of us take on the morals of the Victorians and blush in a most uncomfortable fashion.  Especially women.  Bathroom habits are not only off limits for conversation, but should never, ever, under and circumstances be heard when engaged upon in public.

Seriously, when it comes to bathroom habits, many of us take on the morals of the Victorians and blush in a most uncomfortable fashion.

I have to admit that while my husband has no qualms whatsoever about discussing his toilet habits in a public forum, I tend to clam up and remain somewhat anal retentive.  Then I got sick and all my social decorum was thrown out the window.

See, when one is diagnosed with neuroendocrine cancer, one of the first questions that has to be answered is whether or not one experiences uncontrollable bouts of diarrhea. Suddenly, one is discussing whether or not its possible to make it to a bathroom when such attacks hit.  Does this particular issue leave one housebound, fearful of being less than a few steps from a bathroom at any given moment?  What happens in public?  Is the first inclination to hunt down the location of every bathroom within a 12 foot radius?  Is it so bad that an app is required that gives very specific locations of every public restroom in the immediate vicinity?  After all, if said diarrhea attack happens out of the clear blue, its best to be prepared.

What happens in public?  Is the first inclination to hunt down the location of every bathroom within a 12 foot radius?  Is it so bad that an app is required that gives very specific locations of every public restroom in the immediate vicinity?

I have to admit that when it comes to neuroendocrine cancer, I’m a bit of an anomaly. While I did have somewhat embarrassing  public bouts of diarrhea for a short period of time, my problems have tended to run in quite the opposite direction.  So far opposite, in fact, that I have told my husband a better career choice for me would be in the diamond making industry.  I have tried laxatives, stool softeners, and any other torturous medication on the market to no avail.   Nothing seems to jumpstart this stubborn colon of mine and convince it that it has a job other than just taking up valuable real estate. Unfortunately, this particular organ has a stubborn streak that parallels, and in some instances even exceeds, mine and no amount of coaxing can convince it to perform its singular function.

To add insult in injury in this particular case, the treatment for neuroendocrine tumors requires a monthly injection of lanreotide to keep these little beasties at bay.  One of the side effects, happily for most NET patients, is constipation.  This has proven to be a bit more than my poor body can bear and has had some rather unpleasant effects.  In this rather sticky situation what is a girl to do? More laxatives, enemas, and even a trip to the emergency department for what the doctor called the “mother of all enemas” could not make this stupid organ perform its basic function.  I have left doctors scratching their heads in confusion, and one even sending me home with a prescription for an industrial sized container of GoLytely…something in which I flat out refused to torture myself.

One of the tests I had performed during the diagnostic phase was a capsule endoscopy. This test discovered more than 38 lesions on the wall of the small bowel, causing the doctor to call me on a Sunday with the results and a technician to tell me that I was the proud winner of the most thumbnails in a diagnostic report that he had ever seen; a dubious honor I must say.  These nasty little beasties were the root cause of severe abdominal pain, the reason for an increase in the lanreotide injections to twice monthly, and the final impetus to seek medical treatment at a speciality clinic in New Orleans.   If I could get answers to all my problems, I thought, this would be the place.

One of the awesome doctors that I met during our intake at the Neuroendocrine Tumor Program at Ochsner Medical Center Kenner was Dr. Boudreaux.  He has such an optimistic outlook that it is impossible not catch his enthusiasm.  After reviewing my medical history and listening to my particular gastro-intestinal complaints, he confirmed that I was not his average NET patient, but he was confident that he could make that stubborn colon do its job. We met with him for a total of 45 minutes and in that time both my husband and I were eager to have him do his best to get me back up and running normally again.

After reviewing my medical history and listening to my particular gastro-intestinal complaints, he confirmed that I was not his average NET patient, but he was confident that he could make that stubborn colon do its job.

I think what got me the most excited about being cut open stem to stern and having several major organs resected was the prognosis that it would result in two bowel movements a day.  Two day!! Wow! I was lucky to have two a month! What a relief that would be! So with a light heart I headed to surgery, eager for a life that might actually be normal after an intense and rather invasive operation.

Well, Dr. Boudreaux’s first incision met with my colon eagerly jumping out to greet him, a declaration, which the doctor admitted to my husband afterward, of that’s not normal and I can fix that, to a diagnosis of megacolon and a removal of the sigmoid colon to help alleviate the chronic constipation and have it function somewhat normally again.  So, surgery came, surgery went.  Portions of the large and small bowel were removed to no avail.  Nothing, and I mean nothing, has changed.  Well, that might not be entirely true.  I have found myself gassier than I have ever been in my life, to the point where it is somewhat embarrassing and difficult to leave the house.  I find myself bloated up and uncomfortable and back to hoping laxatives and stool softeners solve the problem.  Dr. Boudreaux remains baffled and I continue to defy the neuroendocrine stereotype.

Maybe it is not for me to have answers to what exactly is going on with this stubborn colon this side of heaven.  Maybe it is just my “cross to bear” in this life.  Whatever the situation may be and to what ends this is working in my life, I am learning that the discussion of GI issues cannot be relegated to the realm of the taboo.

Making the decision to ignore, self-medicate, or just live with annoying symptoms can have lasting consequences that weigh heavily on quality of life.

It is important that if anything, anything at all, seems a little bit off to make sure to carry that conversation to a medical professional who can offer advice, medical intervention, and, most importantly, diagnostics to make sure it is not a symptom of a much larger problem. Making the decision to ignore, self-medicate, or just live with annoying symptoms can have lasting consequences that weigh heavily on quality of life.

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