(Ellen Ripley, oh how I feel your pain.)
Can I have a new bowel please? Pretty please? And a new digestive tract while I'm at it? It's been a long time since Ruprecht, my recalcitrant bowel, first made an appearance both here on the blog and in my life. And since those first heady days of gastric apocalypse, there has been little improvement. There have been changes. But not one of those changes have been for the better.
Where once it was the big D, diarrhea. All day. Every day, Day after rank, day. It is now the big C, constipation, with the odd burst of D just to mix things up.
When stuck with diarrhea, you long for constipation.
When stuck with constipation, you long for diarrhea.
A regular healthy poo is up there with finding proof of Nessie. It's just not going to happen.
The grass is always greener, or browner in this case, on the other side of the fence.
But in truth both pose their own problems. Both now cause me syncope or pre-syncope. The rush of diarrhea, triggers my Vagus nerve, and that in turn leads to a full body melt down. It is completely disabling. I'm yet to find a trigger for it's arrival. Why my body goes from weeks of besser block to mount Vesuvius is still unclear. I have examined my diet, stress levels, activity levels, medication timing, the works. And still I'll wake up some mornings and it's on, on like Donkey Kong. And for a day I'll be caught trying to balance the competing needs of my bowels, vomiting and passing out. Holding on to consciousness by my fingernails. After which I left more shell, than person. It's an emptiness built of exhaustion and expelling all your organs and squidgy bits out of your confused and overwhelmed body. There's just....nothing.
And then it's back to constipation. Besser block, in need of a jackhammer, constipation. For weeks. Painful, debilitating weeks. I was excited the other day, to discover that I had gained 2kgs. I had been hovering around 50kgs which is way too underweight for my 168cm frame. Then it dawned on me. It was poo weight. And, as someone pointed out over on FB, poo weight doesn't count. A moment's excitement dashed with a dose of reality. The Movicol which was supposed to help me move, ended up causing nausea, vomiting and a bp drop. And so my stomach which already looks pregnant after eating, anything, ends up distended and rock hard from the buildup.
And with both there is the pain. Stabbing pain. Cramping pain. Pain that leaves you doubled up and in tears. It stabs in your abdomen and it stabs in your bowels. It overwhelms and leaves you crying on the tiles in your bathroom, or on your bed, or on the couch, or the carpet. The pain of spasming bowels that still won't pass anything is a pain unto itself and not one I'd ever wish on anyone. And then the meds you give into, because the pain is so incredibly bad, end up exacerbating the problem. Catch-22 eat your heart out.
And just as you finally pass that first bit of besser block and have blessed relief, you are hit with the first stirrings of the dreaded diarrhea again.
And you know even if you should manage to even have a half-hearted attempt at a real poo, it's never all. You never feel empty. It is half-arsed in every sense of the word. Because your colon is a poo-tease, and it sits back laughing maniacally, stroking a white cat, while you weep at dashed hopes.
You thought you'd have normal poo? Fool! Mwahahahahaha
Dysautonomia can play havoc with your digestive tract. You fill up quick when eating. You vomit up food. It simply sits in your abdomen doing nothing. It moves, or doesn't move. Too quick. Too slow. Too....something. Something, that it's NOT supposed to do. Something that involves pain and communing with the porcelain.
There is no greener side of the fence. We can laugh at it. Poo and all that surrounds it, is rife for humour. My friend Rach's recent post about self-administering enemas is hilarious (head over and check it out), but I also know what living like that can do to your sense of self. As strong as you become dealing with illness year after year, there are certain moments where you want to sob into your pillow.
It is incredibly debilitating. To your body and to your spirit.
And so you change your diet. You scour support groups and Medline and Pubmed. Is there something new? Have you missed an important paper? You meditate. You beg the Universe for an answer. You shell out cash for alternative therapies. Traditional Chinese medicine, naturopathy, reiki, healing ceremonies and crystals. You align your chakras and bark at the moon. Just in case. Because if you never tried and it was the answer....desperation wins and your bank balance loses.
And then you revert to taking a med to make it stop, make it start, to keep down the vomit and stop the pain. Because you have to manage it somehow to survive.
The world doesn't stop for you to do a six month wholistic treatment, where you focus solely on your health. 8 hours each day dedicated to taming your innards is a pipe dream. If you have kids, or a husband, partner, job, dog, desire to concentrate on something other than your health for five minutes a day, you can't just fixate on your defunct digestive tract. In reality, it's just one of a myriad of problems Dysautonomia throws up. When all your systems are dodgy it's hard to pick what to focus upon, except for the most pressing issue in the moment.
And it all leads to added anxiety. To worry about toilet availability. To worry about pooing yourself in public, or vomiting. Or both. Will today be a constipation day, or a diarrhea day? Will today be painful, well, more painful than normal? To knowing that if you don't get the med/food/water/energy mix just right, an outing could end up a complete disaster. Will the nausea impact on your ability to head out of the house, chat to others or simply remain upright? Will the burst of diarrhea end up in yet another ED visit? Will the excruciating stomach pain end in yet another ED visit? Will.........
But I take heart in the fact that I'm not alone. I don't want anyone else to be in this position, but the relief and comfort that comes from having friends going through the same or similar things is beyond words.
Plus, the ability to share a wry poo joke with someone who is also bent over, or stuck on, the porcelain?
Now that is priceless.
And it's only 12 more days until I see the autonomic gastro. Please let him have some answers. Feels like I've been waiting forever
Faith No More's, Falling to pieces, just seems so apt today.
Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,600, keep donating and hopefully we can reach $10,000.