I was born and grew up in Guangzhou China, where has been famous for its Cantonese food. I enjoyed eating all kind of local dishes and never had any diarrhea problems except once a while when the food got spoiled.
I came to the United States for my graduate school program in 1992 and started eating American food, such as milk and cheese, which I hadn’t touched at all while I grew up in China. These dairy products were so nutrient-rich, convenient, and inexpensive that a cup of cooked milk with a soft-boiled egg became part of my typical breakfast during my busy school life.
In 1996 I was diagnosed with Crohn’s disease due to constant diarrhea. I was immediately put on sulfasalazine for three months and expected to have medication for the rest of my life. I was shocked at that moment since I was drug-free in my prior life. After five years, thesultasalazine lost its potency, I got diarrhea multiple times a day, and my stomach was constantly cramped and bloated. My medication was switched to Pentasa but the symptoms remained. In 2008, I have lost weight from 100 lb. to 87 lb. due to a Crohn’s flareup. I was put on the cortisone Budesonide and got back to normal energy after a few days of cortisone treatment. I had to rely on this cortisone to suppress my over-reacted immune system. After ten years of on-and-off Budesonide treatment, I developed severe osteoporosis. In order to remove cortisone from my body and avoid its side effects, Doctor put me on humira. However, my symptoms could only be controlled by the combination of humira with cortisone. Without cortisone, the diarrhea, stomach bloating, and pain came back. After taking humira and cortisone for half year, I got shingles which could be the result of an over-suppressed immune system. When the doctor asked me to double the dose of humira and stop taking cortisone, my diarrhea came back. I finally quitted humira and only took cortisone. When all the medication failed and the side effects made my health worse, I had to start searching for a new way of treatment on my own.
I noticed that certain foods would irritate my body such as dairy products. Later, any egg-containing food also made me rush to the restroom multiple times a day. Inspired by the idea of gluten and polysaccharides as a possible cause of inflammation, I changed my diet to mainly meat and vegetables and eliminated wheat products and rice, in addition to dairy products. I also stopped all the medication for Crohn’s. Surprisingly, my diarrhea stopped. I felt so light in my stomach and felt hope for a cure. However, one month later, I was hit by small bowel blockage with vomiting all night long. After a one-week hospitalization with steroid delivered intravenously and pumping out the liquid in my stomach through my nose for three days, my small intestines opened up again. I finally avoided a surgery. I started taking the doctor’s order of a full dose of cortisone again. Four months later, in October 2019, I decided to wane down and finally stopped the cortisone and resumed my non-dairy, non-egg, minimum carbohydrate diet. It worked and I didn’t have diarrhea, gas bloating, or stomach pain any more. More importantly, I gained a few pounds every month. By the end of year, I visited my GI doctor and surprised him a lot by how healthy I looked. He told me to continue whatever I was doing.
During Christmas season 2019, our family drove down to North Carolina. I ate Sushi Tempura and certain dishes in Chinese restaurants. I didn’t feel comfortable in the first evening out. I started diarrhea the second day and it became non-stopping on the third day.
We drove back home as fast as we could. I also started taking my Budesonide but the medication couldn’t keep me from running to the restroom every half hour. By the time we arrived home, I was so weary without eating for so long. I resumed my special diet. My diarrhea magically stopped right away. I suddenly realized that certain foods I was taking in the past few days must have contained something that caused my immune system to react badly. I decided that I really needed to track down the food I ate in a manner as detailed as possible to find the cause.
In early February 2020, I took a colonoscopy test. The test result showed that the condition of my small intestine was much better than five years ago. My C-reactive protein number was also back to the normal range. I was drug-free for four months. It looked like my special diet was working now.
Pandemic began in March 2020. We were so afraid of Corona virus and spent more time at home. I began eating snacks in excess to release stress. A few months later, I started having watery diarrhea more and more frequently. I had to take Budesonide again. Even so, I still couldn’t maintain my body weight.
In May 2021, I decided to take the vaccine. In order to obtain the full effect of the vaccine on my immune system, I waned down and finally quit Budesonide prior to vaccination. During that period, I watched my diet very carefully. It turned out I successfully quit the Budesonide without any flareups.
A few months later, I was overwhelmed by coming stresses: the passing of my father, a higher work-load while working from home, anxiety for the future of my kids… These stresses, in combination with the overlooking of my daily diet, resulted in me beginning to feel sick again.
I was so frustrated by my constant flareups of Crohn’s disease. At this stage I had already exhausted all the medical possibilities except surgery. I asked myself, “What can I do to help myself?” Maybe removing the triggers of food and emotional stresses will make my health better.
I am dreaming of a smart app which will allow me to record all the food I am eating and the sequential problems occurred. It can automatically form a personal database and classify good and bad food for me. The smart app with personal food trigger information will help the patients manage their diet and medication use.
I am hoping the lessons learned from my Crohn’s journey can help me return back to normal health. Hopefully, the sharing of my journey can be helpful for other Crohn’s patients as well.