Ulcerative Colitis

I experienced my first ulcerative colitis symptoms in November of 2013. These symptoms included:

Excessive and painful gas and upper digestive issues such as verping (my definition of a mix between vomiting and burping) and acid reflux
An increase in bathroom frequency (15-20 bowel movements a day) with explosive diarrhea
Weight loss
Bloody stools
Intense abdominal pain and cramps, especially after eating
Join and eye pain
Chills and occasionally fevers
Brain fog, irritability, and mood swings

In January of 2014, I was officially diagnosed with a colonoscopy and upper GI tract endoscopy. A couple of months later I was also diagnosed with sacroiliitis or inflammatory arthritis of the sacroiliac joints.

Many people who suffer from IBD (inflammatory bowel disease; Crohn’s and ulcerative colitis) also have other autoimmune diseases like rheumatoid arthritis, fibromyalgia, and lupus.

As I was going through this whole process, I got tired of keeping everyone updated on my condition. I was also not very good at explaining:

What ulcerative colitis is
Why I was experimenting with diet
How scary food was for me

Mostly, I felt like I was not very good at educating people. But a small part of me was also angry. How could people not know what ulcerative colitis was?

Commercial breaks are littered with ads pertaining to ulcerative colitis. Were these ads just going over people’s heads? And the answer is, yes. As usual, we don’t notice things that don’t affect us.

How I Processed My Diagnoses

I was getting tongue-tied while trying to describe ulcerative colitis and my experience. And a big reason for that is information overload.

Reading medical descriptions of ulcerative colitis told me what was going on scientifically, but it was cold. I felt like my experience was so much more than what was being described.

I thought writing a summary or synthesis of the different information I was wading through would help me visualize what was happening to my body.

By writing it out in simple language I would also make it easier for others (hello readers!) to understand. So here is my breakdown of ulcerative colitis.

My Understanding of Ulcerative Colitis

Ulcerative colitis is believed to be caused by the interaction of:

Genes you have inherited. 20-25% of individuals have a close relative with IBD. Damn you, ancestors!
The immune system’s inappropriate response to healthy and normal tissue. Your immune system is waging war on perfectly healthy organs.
Environmental triggers such as early childhood diet, smoking, antibiotic exposure, and infections. Early childhood vaccines are NOT associated with IBD development. Anti-vaccinators shut up.
Gut Microbiome

Once that unique combination of factors triggers the immune system, there’s no turning it off.

Inflammation is the body’s response to what it perceives as a threat. But because the immune system is continually fighting an imaginary threat, damage begins to set in.

Open sores (ulcers) develop on the surface of the colon, which bleed and produce pus and excess mucus. This is very painful, causes excessive diarrhea, and reduces the body’s ability to absorb nutrients.

Malnutrition and dehydration increase until either the flare subsides or medical intervention is needed (aka hospitalization).

Diet and Ulcerative Colitis

In the beginning, I really struggled to find anything I could eat. And I wasn’t getting any diet or nutritional advice from my doctors.

Back when I was first diagnosed, I feel like the medical field did not consider diet a major factor in keeping ulcerative colitis under control and in remission.

But with recent studies on how important the Microbiome is to all systems of the body, and the different ways it can be manipulated (for both good and bad), I think it’s becoming a research focus.

Among IBD sufferers, opinions vary on the role of diet. Some people swear by diet, others scorn it, and some people fall in the middle. I’m a in the middle person.

My Experiments with Diet

Reading Elaine Gottschall’s book “Breaking the Vicious Cycle” was extremely useful after coming home with a diagnosis.

It helped me understand some of the science behind ulcerative colitis and it gave me a pathway to follow in the Specific Carbohydrate Diet.

One of the allures about a diet is that it sets out rules and steps for you to follow that led to certain results. It helps you feel like you’re in control.

I was desperate for both a path and a feeling of control. Everything I ate bothered me and I was lost on what to try next.

Clinging to Diet

I clung to this diet. Desperately. I wanted it to work. Desperately. To me, it seemed like so many people were able to live medication free lives with diet. And I was determined to be one of them.

I felt like if I gave up I would somehow be bad. Like I was underserving or I wasn’t trying hard enough. So I stuck to it for two and a half years.

Most of my time was spent in the kitchen because I made everything from scratch. Traveling and going to restaurants was no fun because there was no food that stuck to the diets I was following.

And with all that work and feelings of isolation, I was still malnourished and having really bad flares that resulted in hospitalizations.

What Works for Me Now

Eventually I finally decided to stop judging myself and listened to my body. I believe diet has a role in managing ulcerative colitis. But for me, it does not mean excluding a lot of specific types of food.

This means sometimes I shouldn’t eat sweets until my bowel movements have returned to normal. Sometimes this means I need to eat more fiber or none at all. It just depends.

This is how I understand ulcerative colitis. But one of the most important things I have learned is that everyone has a different experience of the disease just as everyone experiences a diet differently.

I try to eat a balanced diet, I go with what works with me, and I pay very close attention to my body because what works or not can change.

My UC Story

I have a detailed narrative of my story up in the form of blog posts. Check out my Health Updates if you would like to read a more personal and descriptive illustration of the type of symptoms and emotions I’ve gone through in my struggles.