This post was written by Tyler Penn. Quite a story.
“Several weeks after my 21st birthday I went out for drinks with my friends. The next day I woke up with, what I thought at the time was, the worst hangover of my life. I reassured myself that I probably had food poisoning or a stomach flu. I started having dreadful thoughts about my health after about seven days of endless diarrhea and nausea.
That subsequent month, my life became an inconceivable disaster; my existence consisted of a series of frequent bathroom trips. The healthcare provider involved in my care ran a series of blood and stool tests, rectal exams, and colonoscopies. I was diagnosed with moderate to severe ulcerative colitis, a type of inflammatory bowel disease causing inflammation and ulceration to the large intestine.
The oral meds I was sent home with apparently were not strong enough to lower the inflammation in my colon. The frequency of bathroom trips increased to approximately fifteen to twenty times a day and I began noticing copious amounts of blood leaving my bowels. I lost forty pounds and was down to 120 pounds at 5’11”. I reached a point of complete physical exhaustion and an inability to do anything except assume a fetal position in bed.
I was admitted to the hospital with extreme weight loss, fatigue, and dehydration. I would stay in the hospital for a week, receiving a heavy dose of steroids and antibiotics. After I was discharged from the hospital, I was subsequently readmitted 24 hours later for severe nausea and diarrhea. Every day spent at the hospital increased my chances of needing to have a colostomy (colon removal surgery) and having to wear a bag on my abdomen to collect feces, which is not a charming thought to a 21-year-old.
It was about this time that the disease started taking a psychological toll. The symptoms were embarrassing- the disease is unpredictable and may go into remission, then a flare unexpectedly. Individuals with ulcerative colitis have a forty percent greater chance of colon cancer and most of the powerful immune-suppressive drugs have negative side effect profiles and often begin to lose therapeutic value.
I became depressed and began to lose hope. I didn’t know if I could support myself and live the kind of life I had planned. I had to drop out of all my college courses because I missed so much class. My social life faded into obscurity as I became increasingly self-conscious with every pound lost.
Fortunately, my disease went into a temporary remission several days later thanks to the cocktail of drugs I was put on. I left the hospital with a desperate longing for answers.
The post-hospital follow-up appointment with my gastroenterologist was extremely disappointing. The response I received to one of the many questions I asked about my disease was, “why don’t you consider taking a vacation?”. It was clear that my expected role as a patient was to be a passive receiver of medication. The message that was being conveyed, whether conscious or unconscious, was that only the experts are qualified to think and we must have faith in their authority.
I had a preconceived notion that diet likely had a large impact on this disease (gastrointestinal tracks main purpose being the assimilation and elimination of food), but my gastroenterologist was confident that diet had no influence on my disease. Oddly enough he did make the contradictory statement that dairy may make my symptoms worse.
At the time I didn’t know any better, but I suspected something was wrong with the message my gastroenterologist conveyed. I wanted to believe him because I didn’t want to change my life or my diet, so I took his advice and continued to eat a standard American diet. To be fair, I did receive some nutrition education. The dietician I consulted in the hospital told me that I should drink more Ensure, a corn syrupy, chocolate flavored, bottled protein shake. The downside was that every time I drank this, it went straight through me. I was also given some vague advice to eat foods low in fiber and to avoid individual food triggers. This did not instill much confidence in the nutrition advice I was given.
For the most part, I was asymptomatic and remained in unexplained remission until about six months after leaving the hospital. When I started showing symptoms again, I was reminded of the crushing uncertainty I had felt while I was in the hospital. I took the prescribed drugs again with little to no relief.
I decided to revisit the previous suspicion that diet had something to do with my disease. A major diet change is conceptually simple, but difficult in practice. Even still, it seemed easier to live with dietary restrictions compared to bearing the burden of ulcerative colitis symptoms. I also liked the idea that my fate was in my own hands; an idea that was not very common in the ulcerative colitis support groups.
I did what any responsible patient would do, and I followed the dietary advice I found on the internet. I wanted to try a special diet for at least a month. I started with a dietary protocol called the Specific Carbohydrate Diet by Elaine Gottschall, a biochemist and mother determined to find an alternative to surgery for her little girl with UC, who was unresponsive to standard medical therapy.
After a few weeks of following the diet with disciplined obedience, I had about an 80% reduction in my digestive symptoms. I had some of my first solid bowel movements in quite some time. I began sleeping better through the night, my acne started clearing up, joint pain was eliminated and I started gaining weight. For the first time in my life, I could sit still and focus on my school work for extended periods of time without getting distracted and giving up. The result the dietary change had on my health was the closest thing to a miracle that I have ever experienced.
I now consume a gluten-free, dairy-free and egg-free paleo diet. If I deviate much from the diet, I have to pay the consequences with digestive symptoms. I hope that others may find my story useful and if you would like to read more about different treatments I have tried then head over to my blog.“
Congrats!! Many people your age don’t have the smarts or the will to find answers. i know I didn’t at that age.
Luckily I had support from a lot of very helpful people on the GAPS diet and SCD diet forums. In some ways I think it might have been easier because only had 21 years of bad food habits vs 30+ yrs of bad food habits might have made it more difficult for me.
This sounds very familiar. I have a friend who seems to have these symptoms, but doctors are unable to help him at all. It’s been going on for years. Thank you for sharing. I’m forwarding this to him, i’m sure he’ll find your blog of interest.
Hey Tyler, sounds like quite a journey. I think some doctors are in for a rude awakening! Have you considered trying an all meat/fat diet. I am assuming that your paleo diet includes fruit, vegetables, nuts and seeds.
When I was first in a flare which active symptoms, I did the Intro diet of the GAPS diet. It is basically all bone broths and meat soups with maybe 1-2 well tolerated veggie (usually carrots) for a week. After that I slowly started adding back fruits and veggies that I tolerated. I now eat a majority of the fruits and vegetables with the exception of a few (white potatoes, corn, legumes, soy). I am pretty active in terms of working out and biking so I tend to feel a bit better workout wise with more carbs, although my gut does a little better on the lower carb side of things.
“After a few weeks of following the diet with disciplined obedience, I had about an 80% reduction in my digestive symptoms. ”
Was the few weeks longer than 30 days? I ask because I’ve had good results on 30 days of AIP but not remission and I wonder if I should go stricter elimination or stick it out for the 2nd month.
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