Summer heat and an irritable bowel.
As we hurtled eastward on Interstate 80 toward Pennsylvania, Y2K hurtled toward us. People were hoarding water and canned goods in anticipation of an apocalypse just five months away; all thanks to a simple programming error.
Much would transpire in those upcoming months, but for now my family and I were heading to the Rainbow Gathering on the California coast. Maybe this communal collaboration would teach us valuable lessons when Y2K finally arrived. Meanwhile, we looked forward to a week of freedom and camping with our kids.
Somehow, we trusted our reliable 15-year-old Volvo — with its 160,000 miles — to get us there, overflowing as it was with camping gear, water filters, one tent, two kids, a food-stuffed cooler, and backpacks. No worries! We’d change the cloth diapers of our youngest child, Shalom, in the car’s “way back,” and wash out dirties at gas stations.
As we drove (slowly, to keep the car from overheating), we pinpointed the finer logistics of the coming week. Would Coo-Coo-Ca-Choo Kitchen be there? Would we find a camping spot near Kid Village? Would drugged-out louts or child molesters be lurking? Would we have enough food and water? How far would we have to hike in? Could our son Ocean even walk that far at age 4? It was all very exciting to ponder. We were crazy! But it all seemed so daring, and adventurous. It was fun.
It was also a nightmare because of irritable bowel syndrome (IBS).
The Long Trek In
The hike in was far and terrible. Mud patches regularly sucked 4-year-old Ocean’s boots off. He’d try to work them out of the mud, then fall behind, get frustrated, and cry. I was exhausted from sloshing through the mud with my enormous backpack, regularly circling back to help Ocean. When I finally put him on my shoulders and marched on, it was epic. I felt manly in the suffering.
Meanwhile, Mom soldiered on with Shalom on her back. I knew we were getting close when I saw stinky, disheveled kids with Tom Sawyer fishing poles sitting on the side of the path fishing around not for fish, but for pot. Soon after, we arrived at “Party Town,” the main camp. We pushed on for Kid Village.
Our water source was a spring from the ground. “Bring containers and stand in line,” we were advised. Food — for which the Rainbow Gathering is famous — was served from makeshift, open-air kitchens, carefully set up weeks in advance by skilled, caring folks. Ovens, tables, counters, and canopies were all built with a combination of found and brought supplies. Thanks to human ingenuity, much of this self-made equipment worked beautifully and the food was creatively sourced and incredibly tasty, as far as camping goes.
The only thing left to determine was the location of the bathrooms.
A Dark Night And Stormy Night … In My Bowels
In the middle of the first night, Ocean woke up needing to go “really bad.” Someone with a large beard and dreads, much like myself, said, “You gotta go over there.” Because of all the wet grass and Ocean’s small stature, I put him on my shoulders and headed toward “Urine-Nation.” To better experience the glory of the stars, we trekked sans flashlight.
The smell alerted us that we’d neared our destination.
I turned the flashlight back on and saw one completely filled latrine. We looked for option two. With the flashlight sweeping from left to right, we found the second latrine, also completely full. At this point, Ocean’s urgency had become an emergency. I scrambled to find an out-of-the-way, clean depression for my desperate boy. Unfortunately, many, many, many, other people had had the same exact idea. We were carefully traversing a minefield.
A few hours later, back in the tent, I awoke soaked in dread and foreboding. I knew I would have to go back to that minefield, perhaps many times. And I was right.
I didn’t know it then, but the roiling in my intestines was the first sign of my first bout of “irritable bowel syndrome,” or IBS, that was never diagnosed as such. The beginning of a five-year mystery ordeal that would nearly cost me my life, or at least my life as I knew it.
You Can Run, But You Can’t Hide (From Irritable Bowel Syndrome)
Baseless optimism led me to believe that the problem would be eradicated with two charcoal pills swallowed with water pumped by hand into a pseudo clean cup at dawn’s first light. I swallowed the pills and staggered back to my tent, sweating and shaking with intestinal doom. Over the next hours, my fever rose steadily. With my bowels still in turmoil, all we could do was pack up and drive back to Minneapolis.
I spent most of the ride lying in a feverish haze, with the occasional lucid moment and very frequent bathroom stops at the outset. Eventually, fewer stops were needed, as there was nothing left. Once home, I slept for days, only getting up to have diarrhea or to soak in a cold bath. Each time I felt swaddled in invisible hot cotton candy, with muffled hearing and a strangely optimistic outlook, I knew it was time to get in the tub to keep the fever from spiking past 104 degrees. Tylenol just wasn’t working anymore.
From July 4 to August 1, 1999, I visited emergency rooms and clinics, searched online, talked endlessy to health and wellness people in co-ops in effort to wrest control away from my bowels. But nobody knew what the heck was wrong with me. Immodium AD became my candy. I was prescribed a steroid and sulfasalazine after stool and blood samples failed to yield any valuable results.
Doctors and others kept referring to irritable bowel but never formally diagnosed my condition. That was fine with me, because I worried that a diagnosis could saddle me with a “pre-existing” condition that would lead to insurance nightmares. But when doctors started talking about removing my colon, I knew I was in far deeper medical trouble.
Meanwhile, the steroids kept me hyped up while a careful diet in combo with the sulfa drugs kept me mostly out of the bathroom. When I wasn’t feeling awful, I was feeling great. As much as I wanted the Prednisone suppositories to be short term, it was nice to feel good sometimes. But deep down, I knew this drug cocktail was no cure.
I began to think I had a condition requiring constant medical maintenance, like diabetes.
The interval between feeling strong and deathly weak grew shorter and shorter and shorter. By now, our family had moved to Lake Lillian, Minnesota, to build and live in a Mandan-style earth lodge. Unquestionably, constructing the lodge — with massive logs, 12-inch spike nails, and tons of dirt — was the most physically demanding work of my life. We shoveled for days. Most nails took 100 strokes with a sledge to drive home, and countless nails bent instead of driving at all. The logs were unbelievably heavy and dangerous.
Ultimately, this was perfect work for feeling manly on steroids. But it was a nightmare once the effects wore off. Luckily a shot of Prednisone would usually last the day. Once in a while, I cheated and took two.
The Irritable Bowel Nightmare Intensifies
By early October, the “good” intervals ceased altogether. Providence be praised, our home was “finished” and I was working in the city, teaching at-risk high-schoolers on weekends. The hardest part was getting there. Once at school, I kept the diarrhea and fevers in check with medication. Everywhere I went, I took Immodium, acetomenophen, sulfasalazine, and prednisone. Even so, I still spent way too much time on the porcelain throne.
One weekend, we all loaded into the Volvo and headed to the city. The meds weren’t working, and I was very weak. When we got to my friend’s house I was too weak to get out of the car, and yet, at the same time, I was chiding myself for being silly, so I forced the car door open. Closing it behind me was nearly impossible. I lost my breath on the second stair up to the house. By the fourth stair, I nearly passed out. I didn’t even have the strength to open the door of my friend’s house.
It all made sense once I dragged my ass to the emergency room. There, the ER doctors told me I had a blood hemoglobin of 3.9g/dl (normal range for men is 13.8 to 17.2) How had this happened? I hadn’t lost blood. The docs wondered why this had happened, too, and scheduled to drill my hip. This procedure would allow for them to evaluate a bone marrow sample. The docs wanted to know if my marrow was still producing new blood cells. The question itself was frightening enough, and the answer more so: In fact, I was no longer producing fresh blood cells!
My own follow-up research online revealed that a tiny percentage of the population has an allergic reaction to sulfa drugs. The list of cautions on the pamphlet in my medication box stated a patient’s blood level should be monitored in the first weeks, to make sure hemoglobin levels remain steady.
I had never received any such monitoring.
Starting Over — Naturally
From now on, I would stop everything for my irritable bowel that didn’t make absolute sense to me — including the drugs.
In the Saturday Evening Post version of medical care, my doctor might have wondered about the patient who stopped showing up considering such dire circumstances. But in my world of HMO chaos, no one objected or even noticed when I stopped returning for check-ups. Our version of health care lives by the motto “no news is good news.” Drugs suppress or inhibit symptoms. Healing is never mentioned. If you make the symptom go away long enough, you’re as good as healed.
But I wanted to be actually healed. I didn’t want my weakness to be covered by steroids. I also didn’t want my body’s inability to digest food to be masked by a different more complicated drug. I wanted to be truly well.
The idea of reporting for duty at my job as a teacher seemed inconceivable. I tried to imagine how I would excuse myself from my classroom every hour. How would I explain the long absences? How come nobody could tell me what was wrong with me?
The strange thing is, when you’re sick long enough, people get tired of your sickness and begin to record this new sick you on top of the person you used to be. Life leaves you behind. You become an object of pity. Nobody wants or intends this. It just happens.
I had to take my healing into my own hands.
Irritable Bowel Syndrome: Back To Basics
Healing myself meant going back to the very beginning. Though I had no idea what triggered my first symptoms of irritable bowel syndrome back at the Rainbow Gathering, I did have — thanks to my kids — very recent experience with the basics of how humans adapt to eating solid food. I recalled how carefully, slowly, and consciously my kids were introduced to each new food. That precious “solids” phase, starting with easily digestible foods, is what built gastric prowess.
So, like my babies, I began with oatmeal. Then I ate oatmeal and toast. Bananas came next, followed by apples. These foods that were soft and colorless and mushy launched my slow recovery. As I paid strict attention to all foods, I placed intense activities like skateboarding and biking on hold. Just taking a walk was enough of a challenge and reward.
When I slipped up with any foolhardy venture into “unsafe” foods, I’d lurch back three or four days on my healing, meaning I’d pay the price with continuous trips to the bathroom. I had to be excruciatingly careful. I read ingredient labels obsessively.
Tofu was especially terrible. Legumes of any type were triggers. Cruciferous veggies were unbearable, as was any dairy product. Bananas, on the other hand, were great. Oatmeal was beautiful. Barley cereal was a lifesaver. Potatoes were OK. Spices could not be tolerated. Rice also was a savior.
Everything was trial and error and intuition, including a probiotic supplement, the effectiveness of which I never could quite determine.
Irritable Bowel: Healing Gradually … One Food At A Time
As time went on, I added more fiber and color to my dietary regimen. I went through a “lactose intolerance” phase that lasted roughly a year, but that eventually passed as well. Eventually, I was able to reintroduce virtually all of the foods I’d enjoyed in the past. These days I enjoy any and all types of food — the hotter the better. I didn’t think I would ever have that “luxury” again.
I’m 37 now. The beard is gone. The dreads are gone. That whole life is gone — along with all traces of the digestive disasters (irritable bowel syndrome) that made me so miserable. I’m still 6-foot-2 and my weight is back to a healthy 180 (at one point during the “summer of irritable bowel,” I was down to 125).
No surgery or complex medications were needed. Instead, trust, courage, common sense, and intuition won out. Plus the willingness to ditch the drugs and take the slow, careful journey of natural healing. There never was a diagnosis. I still don’t know exactly what my condition was or what caused it. I’m very grateful it’s over, I’m still around, with all of my colon (and bone marrow that produces fresh blood cells!).
And I’m grateful I’m back to loving the adventure of good healthy food and and the thrill of skateboarding and biking with my kids. Life is beautiful!