Six months ago, my life was entangled in rubber tubes. A Hickman catheter snaked out of a hole in my chest, exporting blood samples to visiting nurses and importing the most nuclear of antibiotics, Vancomycin to my veins. Yet, in my world, there were hundreds, no, thousands, of rubber tubes, sitting in boxes marked “mentor urological catheters”, clear unisex tubing that permitted me to do what most everyone does routinely: urinate.
And so it had been for over a decade. Interstitial cystitis and a neurogenic bladder robbed me of the simplest joys and the most basic freedoms. My medical quotidian was complex: every two hours, I swallowed 5 milligrams of Percocet, combined with 325 mg. of Tylenol, and waited until the throbbing in my bladder quieted just enough for me to slide, trembling, into a bathtub full of tepid water. I’d hold my breath, and then weave a catheter into a urethra scarred from too many infections, too many years of catheterizing. I’d urinate as much as pain would permit, shower, get dressed…and wait to begin the process all… over …again. (Note: Most women need to catheterize while lying down because the female urethra closes upon sitting. Catheterizing in water provides a modicum of pain relief for IC patients whose bladders are generally ulcerated.) In between, I’d swallow other medications: Elmiron and Pyridium to numb my bladder; Klonopin and Prozac to numb my soul.
I’d listen as my children made excuses for my absence: “My mom can’t go on field trips/vacations/most anywhere…because, because, because.” The drive I once had to get healthy diminished with time and continued disappointment. I was trapped in a pharmaceutical house of horrors. Percocet, Elmiron, and Pyridium relieved my pain just enough to let me catheterize, yet their metabolic effects were destroying my liver (my liver enzymes were continually rising); Vancomycin lessened my chronic bladder and kidney infections after I had become resistant to more common antibiotics; yet, I had managed to test positive for VRE, Vancomycin-Resistent-Enterrococcus, a result, my cavalcade of doctors asserted, of frequent stays in the hospital and exposure to the strong bugs that live there. The Percocet usage, a secret that nearly crippled my psyche, caused urinary retention, increasing my rate of infection, and making the process of catheterization, albeit less painful, all the more frequent.
Rarely, I peered into the narrow darkness that was my future: I’d die of sepsis, something I battled at least once a year, or, if not that, liver failure. It was all too bleak, and sadly, I was too busy with my mad mess of drugs and tubing to care. Sure, I’d hear the occasional wonder story of alternative medicine, and cheered on by my cynical doctors, I’d laugh, “Ha! Money better spent on the ever-increasing cost of antibiotics, pain relief, and tubes.” When a good friend sent me 15 grams of powdered Kratom, with a note that it had improved her IC symptoms, I stashed the stuff in my spice cabinet forgetting about it until I needed a bay leaf.
A package of dirt, I thought. That the stuff tasted like dirt didn’t spur my enthusiasm. I mixed a bit with melted ice cream and expected nothing other than nausea. Within thirty minutes, however, the pain in my belly and back simply…evaporated. Still skeptical, I ordered a few ounces of Kratom to try in earnest. I discovered that at least for me, Kratom provided multiple forms of relief. Most importantly, it worked as an analgesic, relieving my chronic pain far more effectively than Percocet. It didn’t cloud my brain, AND it didn’t cause urinary retention. In fact, it seemed to ease and accelerate the catheterization process. Within a week, my two daily doses of Kratom (two tsps. in the morning, three in the evening) put an end to my decade long/40mg. per day Percocet addiction. Suddenly, I became able to catheterize without pain, to empty my bladder thoroughly, and halve the frequency of the routine itself. That alone caused my near-constant infections to cease. After a few months of being infection-free, my surgeon removed my Hickman catheter; D/C’d the IV Vanco, telling me I was well enough to use oral antibiotics, if necessary.
Something else happened as well. Slowly…gradually…perhaps as a result of feeling better, perhaps because I was free of the mind-numbing effects of Percocet, I was able to relinquish the other drugs as well. No need for Prozac because I wasn’t depressed: I could do things, go places, be a wife and a mom again. Sure, I still had a neurogenic bladder, a bladder that couldn’t release urine on its own, but the difference between catheterizing every two hours vs. every four-five hours revolutionized my world. There was time enough at last…to play with the kids, to go to the zoo, to chaperone the field trip, to play jacks on the floor, to toss the Frisbee with the dog. There was time. And perhaps because I was living life rather than suffering it, I, for the first time in a decade, could fall asleep naturally. I tapered the Klonopin as quickly as I did the Percocet, something unheard of in the medical world. In fact, the only medication I take now is a mild prophylactic antibiotic every other day, just to keep the catheterization procedure from playing host to E-coli.
I understand that Kratom is used for a variety of purposes, and like all things beneficial, it offers the potential for abuse. For me, however, Kratom slowly, serenely, without hallucination or fanfare, handed me life: devoid of constant pain, devoid of an imprisoning catheterization routine, devoid of liver-consuming pharmaceuticals.
I have studied the complicated chemistry of Kratom, and no, I don’t understand how it works. I do know that the small amount of Kratom I take in the morning both relieves my pain and gives me energy---energy that I’ve used to exercise and to work toward improving all aspects of my health. The larger amount I take at night seems to quiet my mind: no longer do I toss and turn with anxiety. Better yet, for the first time in forever, I can make it through the night without waking to catheterize.
So what do my doctors think?? Though they’ve all written, “Spontaneous Improvement” on my medical charts, their comments range from, “It’s a psychological effect,” to “It’s too soon to tell if improvement will last,” to “Go figure.” And that’s good enough for now. What does tomorrow, next week, and next year hold for chronic pain patients like me? For the first time in a long time, I can answer simply: hope.
To those of you who have made Kratom available: I am deeply grateful. Thank you.
Anyone in a similar situation who wishes to speak to the author of this story can contact her at the below e-mail address. We ask that you are respectful and considerate to this person as she has become a very good friend of ours.