April is IBS Awareness Month, or as some would say: “April is the month for irritable bowels.” But thousands, if not millions of people suffer chronic digestive problems that are not only lesser-known; they’re often more difficult to diagnose and just as debilitating (if not more). Though the diseases are far from something we’d like to “celebrate” here at Blisstree, we’d like to think there’s something to be gained from even the worst symptoms and chronic disease. And so does Dori Manela, whose chronic bowel problems took three years to diagnose. In honor of anyone with IBS or otherwise, here’s Dori’s story. We hope it inspires:
On August 7, 2007, I ordered sushi for dinner. My life has never been the same since.
About six hours after my meal, I got nauseous; inconvenient timing, given the 13-hour flight to Israel I was about to board. I spent the first five hours of that turbulent flight throwing up, and about half of my trip to Israel was spent sick and in bed. Eventually, I started to feel better and figured I’d recovered.
Except that I never really did.
Once I returned home from the trip, I figured my, er, bathroom routine would go back to normal. I waited. And waited. “Normal” never came. A few weeks later, I looked down in the shower to see that my stomach had become horrifyingly distorted. Some areas were raised, others were lumpy; I had no idea what was going on. As weeks went by, I was having terrible gas pains unlike anything I’d ever known. The bloating was so extreme I had to leave work on multiple occasions to buy new, bigger pants. Oh, yeah…and I had barely gone to the bathroom at all since weeks before in August.
The next three years were filled with doctors, ER visits, medical tests, medications, missed workdays, bigger clothing, canceled plans, depression, pain, discomfort, more tests and still more medications.
Three years. That’s how long I spent in limbo, before receiving diagnosis. In the meantime, all I knew was:
- High fiber foods were a nightmare. Salad, apples, and oatmeal all caused my abdomen to blow up so severely, I looked pregnant. I actually purchased maternity pants to accommodate my painfully growing belly.
- Laxatives did nothing. Drinking a bottle of magnesium citrate did nothing, and even an entire colonoscopy prep produced absolutely no results – aside from feeling like death with some vomit on the side.
- Prescription constipation meds didn’t do anything, either. And I tried them all, including medications meant for other symptoms entirely, that happened to induce diarrhea as a side effect (the abortion pill Misoprostol and a medication for gout, to name a couple).
- CT scans of my stomach and intestines showed spasming and massive dilation but it wasn’t clear why.
My first doctor didn’t believe me. So when my colonoscopy prep didn’t work she had me come in for the procedure anyway, and afterward, she even told my mother that she was hesitant to treat my constipation because she thought my real problem was diarrhea. Why would I lie about something embarrassing with something even more embarrassing?
My second doctor was incredibly well-meaning but very far off the mark. As test after test revealed inconclusive or negative results, he began to suspect I suffered IBS. But that didn’t stop him from sending me for invasive, expensive (insurance doesn’t cover this) and humiliating pelvic floor physical therapy. The kind with anal probes. I wish I was making this up. (And I wish I’d had enough insight at the time to step back and say “this is ridiculous; enough is enough.”) My problem wasn’t with my butt muscles — of course I knew this! And later, I took a test to prove my theory (one the doctor had failed to mention), and who would’ve guessed! I never needed pelvic floor physical therapy at all.
My discomfort took over my life. At first I canceled plans with friends; then I just stopped making plans. I gained weight until I felt uncomfortable in my own body, and I even got to a point where I didn’t recognize myself in the mirror. I hated myself, and for the first time in my life, I was depressed. I spent entire weekends in bed. It felt like weights were pressing me down, so naturally, I just didn’t get up.
I was only getting worse, and in the most traumatic experience of my life, my doctor manually dis-impacted me on his examining room table as I lay there with hot tears streaming down my face – and a diagnosis of IBS.
When I switched to my third doctor, I told the new one my story. The first words out of his mouthL “You absolutely do not have IBS.”
It was a relief to hear confirmation of what I suspected all along, but that didn’t mean that either of us knew what was really wrong. All we really knew was that at some point after I ate food, the food stopped moving. We still had to figure out where — and why — the food stopped before I could receive treatment. And despite the long list of test results I’d collected by this point, none of them held the key to my diagnosis.
It took three more doctors and many more tests to get an answer. Once we had an answer, we confirmed with even more tests. Finally, I had my official diagnosis: colonic inertia.
My stomach and small intestine moved things along at a normal pace, but once it got to my colon, there was practically no movement. The theory is that when I was sick back in 2007, the virus I had might have resembled my colon. The antibodies that went to attack the virus also attacked my colon in the process, causing nerve damage. While this is a more common phenomenon in the stomach and the heart, it is certainly plausible. It’s also the best theory as to why I was fine one day and chronically ill the next.
After trying even more ineffective medications, my doctor suggested I see a colon and rectal surgeon. I was getting by on enemas and colonic hydrotherapy to move my digestion along, but I was also feeling desperate so I went to see what the surgeon had to say. There was bad news, and there was bad news: If I wanted to have a baby, there was a chance my colon could rupture. The solution? A subtotal colectomy – removing the entire colon except for the rectum.