“You are actually one of the least complicated cases I will consult on this week,” says the big shot surgeon at Famous Medical Center in response to my husband’s query about whether or not she’d ever dealt with a complicated surgical history like mine before.
She isn’t being unkind, or even egotistical. I don’t remember a lot of the other details of that consultation, but I do remember those words very clearly because they were quite reassuring. She probably followed it up with some frank words about not promising complete success (she was brutally honest – something I liked very much about her) but it was such a relief to hear that there were even sicker and more desperate people. To hear that she could maybe fix me so that my guts weren’t going to be spilling their contents outside holes in my belly forever. That perhaps I’d be able to eat real food again. That maybe, just maybe, I would even get healthy enough to fulfill the dreams of a future my husband and I had on our wedding day just months before the drama began.
I hold my husband’s hand even tighter, and for the first time in years, I dare to believe that health was within my grasp.
Of course, the story doesn’t begin (nor end) there. There were 6 surgeries leading up to that one. Days stretching to weeks stretching to months in a hospital bed or recovering at home. Interminable hours spent in waiting rooms and doctor’s offices.
And before that, there was over a decade of Crohn’s disease, remitting and relapsing. Each time damaging my colon even more, putting down layer upon layer of scar tissue that eventually became the strictures that necessitated the first surgery. Which led to the emergency surgery, the life-threatening infection, the slow recovery, the incisional hernia, the bowel perforation, the unsuccessful repair attempts, the months on TPN.
The sense of despair.
And even after the big shot surgeon fixed my plumbing and I was sent home from Famous Medical Center able to eat and use a toilet like anyone else, I was still a long way from really being healed.
I still am.
My physical health is improving, since I stopped waiting for it to just happen and started adjusting my diet to take control of it myself. I owe much to that surgeon who fixed up the mess left by the previous four chuckleheads (to borrow a phrase from husband) who had taken their turn hacking away at my guts. I am forever indebted to her and to the excellent care I received at her hospital.
But perhaps I never would have needed her if I had taken a different treatment path after the Crohn’s disease diagnosis over a decade earlier.
I’m sitting in another doctor’s office, this time at Prominent University Hospital. I’m alone this time. I’m 19 and I have been referred to this gastroenterologist, a specialty I had never even heard of nor knew how to spell before that, because I have been crapping my brains out every morning for several months, I’m anemic, and my primary care doctor noticed inflammation and something “unusual” around my anus during my annual gynecological exam.
“I think you have Crohn’s disease,” he says. I have no idea what that means, but I burst into tears. I am not sure if they are tears of relief that this thing that has been tormenting and embarrassing me has a name (and therefore probably a treatment), or sad tears.
He ran a few tests to confirm his suspicion and prescribed me some drugs. I happily took them. I asked about diet and he said what I hoped to hear – that there was no evidence that what I ate would make any difference. So I went on with my life, playing the part of the normal college student. Those drugs were replaced by stronger drugs. I went in and out of flares. I mostly avoided thinking about the disease.
I graduated, started working, had an active social lie, eventually met my husband, and moved across the country to be with him where I saw a new doctor who insisted on a colonoscopy since it had been 10 years since my last one. I put it off until a couple months after our wedding. The colonoscopy was a disaster. I had a stricture in my sigmoid colon that was so narrow the scope couldn’t get through. She recommended surgery, I put it off for a couple more months.
Finally, just 6 months after our wedding, my husband kissed me as I was rolled into surgery for a resection. Naively, I believed that in 6 or 8 weeks, everything would be back to normal and our life would be the perfect storybook I envisioned. Instead, I spent almost two months in the hospital, much of it in the ICU. I can’t really write about that time, because I honestly don’t really remember the details.
I had a reprieve where we thought things were back to normal, but then I woke up one morning a year and a half after the first surgery with an incisional hernia, an apparently not-surprising complication from the three surgeries. I had three more surgeries that attempted to fix that but instead just destroyed portions of my small intestine. When we sought help at Famous Medical Center, I had a high output ostomy and another fistula and I had been receiving all of my nutrition from TPN (total parenteral nutrition) from an IV line for almost 6 months.
But interestingly, I was actually relatively healthy. The surgeon ordered several tests, including a colonoscopy, and it showed no sign of active Crohn’s disease. My blood tests were all normal, even my iron stores and CBC. At the time I chalked it up to the well-balanced nutrition flowing into my veins for 12 hours every day.
My belief now is that my relative health during that time was actually not due to the treatment I was receiving, but what I was not getting.
When I got off TPN and went back to normal nourishment, I was told to eat a high-carb, high-protein, low-fat, low-fiber, and low-sugar diet to compensate for my now shorter digestive track. So that meant lots and lots of refined flour. I ate sleeves of saltine crackers, toast with butter and jam, bagels and cream cheese, pizza… I needed to gain weight, so I figured that the junkier I ate, the better.
I gained a little weight, but I didn’t feel well. I started to get anemic. My Crohn’s symptoms came back.
Somewhere along the line I started developing mysterious food allergy symptoms, which an allergist helped me trace specifically to corn. So I revamped my diet. I replaced all the refined flour junk with corn free versions, and the allergic reactions stopped but my anemia continued to get worse.
And then I had a lightbulb moment while I was getting a blood transfusion. When had I not been anemic? When had I actually felt good? When I was eating nothing at all. It had to be the food. I started searching the web and after years of mostly pretending I didn’t have a disease, it was overwhelming to discover whole communities of people writing about it on the internet. I found the Specific Carbohydrate Diet, I ordered the book Breaking the Vicious Cycle and I dove in, with the unwavering support of my dear husband.
The improvement was not dramatic, but after 30 days I could definitely say that it was happening. So I continued. I still had bowel symptoms, but after 60 days my hemoglobin started going up. From a dangerous low of under 7, to 8.1, to 9.6, to 10.3! And then after just four months of eating this new way, I got handed a lab printout sheet that I didn’t recognize. Where were the multiple letter L’s, indicating my usual low results? They weren’t there. It was normal! My hemoglobin had broken the 12 point barrier and my hematocrit followed shortly after.
“… one of the least complicated cases…” I rejoiced in that statement back in the surgeon’s office. It gave me hope when I needed it so badly.
I don’t know what the future will bring. I’m not naïve enough to think that this is the end of the story for me and Crohn’s disease. I may have flare-ups again. I am still on one very advanced drug and I don’t know if I will ever get off of it. I hope I never need prednisone or other drugs with serious side effects again, but they might be necessary at some point.
In the mean time, I am just trying to keep it un-complicated.
Take deep breaths. Get lots of sleep. Practice yoga. Play with my dog. Enjoy life.
Don’t eat food that damages my guts. Do eat real nourishing food from nature. Be brave. Be gutsy.
Gutsy by nature.
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