It all began so mundanely. It was the beginning of October, and my husband picked up an intestinal bug…
(Warning: there will be talk about diarrhea in this post. There’s no way around it. But there won’t be details.)
… and then passed it on to me. After 10 days of being sick with this intestinal bug, I woke up one morning suddenly feeling better.
Except the diarrhea continued, though the frequency and other… characteristics changed. Days passed and the frequency increased. I tried the BRAT diet. I tried all starches. I tried extra fiber, acidophilous pills, yogurt. I figured maybe the IBS I’d had for years was just all out of whack from the bug and I’d get better. Except I didn’t get better—I got worse. And I began to feel very, very unwell and weak. After a week of increasing diarrhea, I returned to my Primary Care Doctor, who was quite concerned and mentioned sending me to the hospital if he couldn’t get me an appointment with a GI doctor that day. The GI doctor I saw was helpful, but couldn’t know what was wrong without a plethora of tests, which I proceeded to get done. In the meantime, while I was waiting for the test results, the diarrhea continued.
It didn’t matter what I ate. The more I ate, the more frequently I had to use the bathroom. I was drinking as much as I could stomach to stave off dehydration, but it wasn’t the loss of fluids that worried me. It was the loss of energy. I felt like my life was being drained out of me each time I used the toilet. I began having trouble functioning. It became hard to walk. I lost 8 pounds in 3 weeks, even though I was eating as much as I could and drinking bottles of Gatorade every day. One night, at 3:30AM, stuck on the toilet, a thought came to me: “What if I just never eat again? Then the diarrhea would stop.” Reason kicked in and I realized that wasn’t a viable option, but it did occur to me that I could stop eating solid foods for a time, by switching to Boost or Ensure.
I sent my husband out that day to purchase Boost or Ensure and switched to an all-liquid diet for several days. And the frequency of the diarrhea finally began to lessen. More importantly, I started feeling stronger, like I was actually absorbing nutrition from what I was consuming instead of just losing it to the toilet. When the test results began coming in and confirmed it wasn’t any sort of infection causing the diarrhea, my GI gave me a drug called Lomotil, which further reduced the frequency of my diarrhea and allowed me the confidence to start leaving the house again… though I always was aware of where the nearest bathroom was. I was still unable to eat solid foods, however, as the pain and diarrhea would ratchet up in intensity whenever I tried.
3 weeks later—the day before Thanksgiving, with only occasional tastes of bland solids like saltines and small bits of pasta in chicken or beef broth, I was finally diagnosed with an autoimmune disorder called Crohn’s disease. Crohn’s disease is an Inflammatory Bowel Disease, like Ulcerative Colitis. Like my Juvenile Rheumatoid Arthritis, it’s an autoimmune disease, meaning my immune system had now decided to attack my intestines in addition to my joints. I was started on a drug called Pentasa, which worked very quickly.
Thanksgiving Dinner arrived. I was determined not to be drinking Ensure at Thanksgiving dinner. How can I possibly describe the sensation of eating that piece of turkey, that piece of kielbasa, that cranberry sauce…? It was bliss. Pure, unadulterated bliss. Eyes out-of-focus, nothing-else-in-the-world, bliss. I spent a good 10 minutes nibbling on that piece of kielbasa, savoring the zest of the spices, the juiciness of the meat, the tang of the bitterness from the sauerkraut it was cooked in… And that turkey, that turkey that my husband had cooked and basted for hours, with that gravy and homemade cranberry sauce mixed in with it. I nearly cried out of sheer joy.
Thanksgiving Dinner was the start of my reintroduction to solid foods. With Crohn’s disease, anything can be a trigger, causing an increase in pain or diarrhea. This meant that I had to introduce one new ingredient (including spices) back into my diet at a time. The next several weeks led me on an exploration of solid foods. I still relied on Ensure for more than half of my daily nutrition, and whenever I found a new trigger, I would switch back to an all-liquid diet for two days to give my intestines time to calm down. By Christmas, I was beginning to have a clear understanding of what my intestines could and couldn’t tolerate.
The tale should have ended here, with my Crohn’s understood and my triggers mostly discovered. But my body—my teacher, my guru—has a wicked sense of humor and wasn’t done challenging my relationship with food.
It was the 1st week of January. I had just finished recovering from the flu and was finishing a preventative course of antibiotics when I began having diarrhea again. This time, the diarrhea was different and came with a very high level of urgency. I couldn’t leave the house. Lomotil was completely ineffective. I immediately switched back to an all-liquid diet, but it had no effect. The GI doctor on call over the weekend put me on Flagyl (in case the antibiotics had given me the infamous C-difficile bacterial infection) and told me to increase my Prednisone dose to 20mg a day. These measures helped moderately, but not enough. I switched to all-liquids, but it seemed like even the Ensure was causing the pain to increase. By the end of the 2nd week of January, I was beginning to have a lot of pain right below my right rib cage. By Sunday, January 13th, the pain was severe enough that I was regularly screaming out in pain.
I am not the kind of person to scream at pain. I have a very high pain tolerance. But this pain was unlike any I’d ever experienced. It throbbed on the pain scale at a 9 and then the spasms would make that 9 seem insignificant. Concerned, my husband contacted my GI, who told me that it was likely my Crohn’s responding to a new trigger food and to take some of my left-over hip replacement surgery pain medications.
That Monday, January 14th, I woke up to the same level of pain. I struggled to care for our 5 cats, but gave up in the middle of their breakfast. I just couldn’t continue on like this any longer. I contacted my husband and told him he had to come home. Now. Thankfully, he did. Once he arrived home, we planned on taking me to the emergency room. As I was getting ready to go, I began feeling very nauseated. I ran to the bathroom, swallowed the vomit… and had to shout for my husband to help me down to the floor.
“I can’t do this any more. Call an ambulance.”
One ambulance ride, 12 hours waiting for a room on a stretcher in the hallway of the emergency room triage area (luckily right next to a bathroom), several tests later, I was finally given a diagnosis:
Usually caused by severe alcoholism or gallstones. Neither of which were applicable to me.
I spent 3 days NPO—nothing by mouth but ice chips—and was started on IV fluids, pain killers, and 15mg of IV steroids every 6 hours. By Tuesday afternoon, I was feeling much better. The pain was still very much present, but it wasn’t at all comparable to the pain I’d been in.
And being in the hospital began to have an unintended effect on me: because I wasn’t feeling up to doing anything and was constantly being interrupted, I spent most of my time sitting and waiting. Just sitting, just waiting. Mindfully. I’ve always wanted to attend a Buddhist retreat and been unable to because of my health challenges, and now it felt like my health had finally allowed me to go on the retreat I’d always wanted to attend.
Thursday morning, I was allowed clear fluids: apple juice, chicken broth, jello. I’m normally not a fan of apple juice, and I’d have enough chicken broth in November to last me a life-time, but after 3 days of ice chips? They. were. fantastic.
Two days later, I was released from the hospital, with a tentative diagnosis of Autoimmune Pancreatitis (because my immune system is one hell of an over-achiever!). This diagnosis came with significant dietary restrictions, especially for the days immediately following my hospital release:
- Low sugar.
- No protein.
- No fat, especially saturated.
- VERY small amounts of food.
Those first few days, I starved. Literally. I had gained 22 pounds of water weight from all the IV fluids from the hospital, which dropped off in 2 days, but after that water weight was lost, I kept losing. I would lose about 2 pounds a day, because I was unable to eat. The smallest amount of food would cause an increase in pancreatic pain.
But the 40mg of Prednisone was working, and I slowly began to increase my daily intake of calories. I slowly began to tolerate small amounts of protein, sugars, and unsaturated fats.
With Autoimmmune Pancreatitis being a chronic condition, I will continue to be limited in how much I can eat at once, especially how much saturated fat my pancreas can tolerate. My new diet is 4 300-400 calorie meals a day (plus 1 or 2 100 or so calorie snacks), with no more than 3g of saturated fat in any one meal. And I will likely have to avoid all red meat, at least in any significant quantity, for the rest of my life.
A recent dinner: Linguini with chicken sausage, tomato sauce with basil and oregano, and green peppers
But eating… Eating has become sacred to me. Each bite of solid food is a joy. And I am
eating all solids now. The Prednisone has soothed my intestines so that I no longer have to rely on Ensures for half of my daily calories. (Ironically, Ensures are actually very hard on a pancreas, because they’re high in protein, sugar, and have a gram of saturated fat, so I will need to use these with caution in the future.) Even eating such bland foods as Cheerios has become a delight. I am so thankful to be able to eat. And dinners have become such a journey! What will I try tonight? What new levels of protein or saturated fat can my pancreas now tolerate?
For years, I tried to lose weight and find a way to eat more mindfully. I wouldn’t have chosen to lose the weight this way or to learn how to eat mindfully by losing the ability to eat for several days, but I’m grateful to my body for this gift.
Eating—having the ability to eat, having access to food—is a gift. It’s a precious gift, one too many people in this world don’t have.
When I eat now, it’s with a sense of wonder. May I never forget.
PS: Another unintended effect of my hospital stay is that I’ve resumed my daily sitting meditation practice. I got into the habit of sitting and waiting, and I’ve enjoyed continuing that now that I’m home and getting well.