THE GENERATION-LONG JOURNEY OF A CROHN'S PATIENT:

by an anonymous patient

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, the
sultasalazine 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.