Merry Christmas! And Happy Day, if you don't happen to celebrate Christmas.
My Christmas was greeted with yet another symptom of myotonic dystrophy, the particular gem in a group of symptoms that can, in fact, first lead to a myotonic dystrophy diagnosis for many patients: "Digestive symptoms may be the first sign of dystrophic disease and may precede the musculo-skeletal features," state Bellini, et al. (2003) (full reference at end of episode).
In the past, I've suffered this especially special symptom, among other, nearly daily digestive symptoms, to quite debilitating measures. And then it mysteriously disappeared, for the most part, though occasionally revisiting to remind me how little control any of us has when our bodies lose theirs.
Yes, happy, happy, joy, joy!
This Christmas gifted me with another fun day of
fecal incontinence.
It happened just as we'd finished opening presents around the tree with Honey's two kids--his third is, sadly, suffering something along the lines of agoraphobia--fear of leaving the house due to panic attacks, and stayed at her mother's house for the day. Meanwhile, my two, both adults, are 1.5 hours away, one celebrating the holiday with his girlfriend and the other with their Dad, who has a big family filled with my boys' aunts, uncles, cousins--for a Christmas filled with masses of good food and cheer.
Here at Honey's, thankfully most of the kids had cleared the room when, out of the blue, the contents of my guts oozed out of my body into the seat of my Christmas jammies from several years back, my favorites, covered with tiny Miniature Schnauzers but now with something extra, and most unwelcome. I had to ask Honey's son to leave the room, and the look I gave Honey told him all he needed to know.
He'd lived through the times with me when this horrible condition had plagued me for months (several years ago), culminating in a particularly hideous and voluminous "lava" flow while shopping, and my subsequent refuge in a fortunately unoccupied women's bathroom where I had to wash out my jeans and wear them wet back to the car and home, thanking the gods for not exposing myself or anyone else to the humiliation of witnessing the incident. And having a good cry before going anywhere, cold and wet and disgusted.
Fortunately, today, the Christmas jammies could be discarded, and nothing had seeped into the furniture.
I tell this story, hopefully with a little humor, to let others out there with fecal incontinence know that they are not alone. It's not a topic one discusses in polite company, so, what the hell, we are not polite here at the
The Mary Dell Show. We tell it like it is, warts and all. Seeping anuses and all.
After getting myself squared away, I retreated to bed where my hypersomnolence kept me obliviated from the rest of Christmas Day. I couldn't even get up to make my signature turkey gravy, much to everyone's disappointment, though it's now 4 a.m. and I have the juices with which to make gravy for leftovers. Yikes, kind of a weird thing to talk about when I've just described how my body just expelled its own juicy brown liquid!
 |
| Turkey gravy, anyone? |
Unfortunately, I had another little, NOT catastrophic, episode of fecal incontinence tonight while wearing my NEW Christmas jammies, so they are being washed and bleached as we speak. And this second prompted my need to discuss this worst of symptoms with you, Dear Viewer, my non-judgmental friend.
My DNA test for myotonic dystrophy has been completed, but I still don't know the result. I did, however, receive the bill: over $6,000. I'm responsible for it because Dr. RQ at Johns Hopkins Neuromuscular Clinic did not believe such a test was warranted, but my local neurologist asked if I'd be willing to pay for the test (about $1,000, he'd told me). He ended up ordering a battery of myotonia tests, which is why it was so much more. I do have a form to fill out that will lessen the bill because my federal disability benefits were recently approved, and those on Medicaid can have the amount reduced.
Perhaps I won't know the results of the DNA test until the bill is paid, or perhaps the company sent the results to Dr. A., my neurologist. At this point, I'm kind of afraid to know. I hate the thought of spending hundreds, possibly thousands of dollars I don't have on a negative test, but I still say it's worth it to know, yay or nay. If I
don't have myotonic dystrophy, that's good news, indeed. But if I
do have this genetic condition--and I have nearly every sign and symptom, including these digestive ones, of the disease--members of my family, especially those of a younger generation, have a right to know they have these defective genes, if for no other reason than saving them the trouble and expense of a long medical investigation into mysterious symptoms.
And I, in fact, have symptoms throughout my gastrointestinal symptom from my mouth (enlarged tongue) all the way to, well, you know where.
"Myotonic dystrophy (MD) is characterized by myotonic phenomena and progressive muscle weakness. Involvement of the gastrointestinal tract is frequent and may occur at any level," begins the abstract for an article on these conditions by Bellini, et al, 2006. Our digestive tract involves a series of "smooth" muscles, and these muscles can become weakened in a number of neuromuscular diseases.
As for myotonic dystrophy, "In the upper digestive tract, dysphagia, heartburn, regurgitation and dyspepsia are the most common complaints, while in the lower tract, abdominal pain, bloating and changes in bowel habits are often reported."
Okay:
Dysphagia (trouble swallowing): Check, but mild and sporadic;
Heartburn: Check. Very bad, actually. Diagnosed by ENT and with a hiatal hernia, and prescribed meds.
Regurgitation: Check. I've told doctors numerous times that I fairly frequently cough up stomach contents, but no one, apparently, cares about that.
Dyspepsia: Check. Upset stomach, basically. Very frequent.
Adominal Pain: Check. Frequent.
Bloating: Check. Frequent. Often with very forceful belching.
Changes in bowel habits: Well, that's the topic of the day, isn't it?
I went through months, perhaps as much as a year, with fecal incontinence as well as daily watery diarrhea--I don't think I had a normal bowel movement that entire time. No cause was found, and eventually it sort of resolved, though occasional bouts, as I said earlier, returned.
Over the past year, I'd say I've been constipated more frequently than I've had to deal with diarrhea, but I've had episodes of both.
I'm always aware of my digestive system, on one end or the other, and I don't want to even
think about my digestive system.
But when yours isn't working, you
will think about it. You have to. Or you may find yourself very embarrassed one day. Of course, thinking about it won't guarantee you won't have an embarrassing moment, such as mine this morning when I had to ask my step-son to leave the room. I am just so fortunate to have an understanding, loving partner who immediately knew what the problem was and helped get me into the bathroom.
All in all, it's been a good Christmas. Parts of it have been sad, including a weird rift with one of my sons that I don't even understand and that hurts pretty bad. I'm trying not to think about that; I'm trying to stay happy for the season.
I'd hoped to bake cookies all day Christmas; instead I was in bed, in that nether-nether world where I find myself more often than in waking reality these days.
And then there's the fecal incontinence thing. At least I was home, in the bosom of part of my family, and not out in some mall, when the flood gates opened.
Let's hope for a Happy New Year.
A new beginning, on my son's birthday, the first baby born in Washington, DC, in 1983. I love you, little one now grown, as well as your big brother. The two of you have brought more blessings than I can count into my life, and you are the very best of my accomplishments. I wish I weren't falling apart, and I'm sorry you have to deal with a falling-apart mom. This is not what I would have wished for you two or for me.
All we can do is try to deal with our falling apart with a little humor. Even the gross stuff. Which is what I tried to do today, despite never finding scatalogical humor very funny.
Har har har on Ho Ho Ho Day.
Here's a group that has been fighting back against often debilitating Irritable Bowel Disease with humor for years--and I say, Cheers and More Power To You,
Great Bowel Movement!
Let's hope this New Year gives us a Depends-free twelve months--God bless all of you who have to resort to these measures; I imagine I'll be joining you soon.
Being chronically ill ain't fun, sports fans.
___________________________
Bellini, Massimo, et al. "
Gastrointestinal Manifestations in Myotonic Dystrophy."
World Journal of Gastroenterology 12:12 (1821-8), 2006.
Degraeuwe, J, et al. "
Faecal Incontinence Due to Atrophy of the Anal Sphincter in Myotonic Dystrophy."
Acta Gastrtoenterology Belgium 74:1 (88-90), 2011.
