When I was first diagnosed with ulcerative colitis (UC) I got tired of explaining what it was to people, why I was trying a different diet (Specific Carbohydrate Diet or SCD), and why I would look at food with both desire and fear. Mostly because I felt like I was not very good at it. 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.
Anyway, I was not very good at informing people about ulcerative colitis. As a result, I would get tongue tied when trying to talk. To make things even more difficult, the medical side does not consider diet a major factor in keeping ulcerative colitis under control and in remission. And for people who are suffering from ulcerative colitis, opinions also vary on the role of diet. Some people swear by diet, others scorn it, and some people fall in the middle.
In the beginning, reading Elaine Gottschall’s book “Breaking the Vicious Cycle” was extremely useful. I felt that it helped me understand some of the science behind ulcerative colitis and it gave me a pathway to follow through the Specific Carbohydrate Diet. I desperately needed a path because I was so lost. Everything I ate bothered me and I did not understand why or what to try next. Nothing I was reading from the “official” medical side about ulcerative colitis was explaining in any great detail what was happening to me.
I thought writing a summary or synthesis of the different information I was wading through would help me more easily 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 the whole process to spread awareness of ulcerative colitis, which is sadly on the rise.
- We are all born with bacteria in our colons and everything lives in harmony.
- Something upsets the balance. Ulcerative colitis is believed to be caused by the interaction of:
- Genes you have inherited (damn you ancestors!)
- An abnormal reaction of the immune system to certain types of bacteria in the intestines
- Environmental triggers
- Inflammation is the body’s response to what it perceives as a threat. Once the immune system of someone with UC switches on, it doesn’t know how to turn off.
- Because the immune system can’t turn itself off, open sores (ulcers) develop on the surface of the colon, which bleed and produce pus. This produces excess mucus.
- One of the last steps in the digestive process happens at the microvilli
- Microvilli are small finger-like projections on the surface of the colon
- It is at the microvilli that carbohydrates are “processed” by being split apart by enzymes embedded in the microvilli. After they have been properly split, the carbohydrates can pass into the bloodstream and their nutrients are transported into the body.
- During an intestinal disease however, the structure of the intestinal surface is altered, excess mucus can prevent contact between the microvilli and sugars, or the enzymes in the microvilli can be completely damaged. This leads to the malabsorption of different types of sugars.
- Glucose is a single sugar molecule (monosaccharide) and is found in fruit, honey, properly made yogurt, and certain vegetables. It requires no digestion and can be easily absorbed through the cells of the small intestine, enter the body, and nourish it with nutrients.
- Two sugar disaccharides like sucrose (sugar) can only enter the bloodstream after they have been split.
- Many sugar polysaccharides like starch can also only enter the bloodstream after they have been split.
- The sugars that cannot be processed remain undigested in the small intestine. This causes a reversal in normal operations. Instead of nutrients entering the bloodstream, water is drawn into the intestine and the nutrients it carries is lost through diarrhea, depriving the cells of the body of energy, minerals, and vitamins.
- Bacterial overgrowth occurs. The sugars that remain undigested in the small intestine provide energy for further fermentation and growth of intestinal microbes. This growing population of microbes give off irritating substances, causing the intestinal cells to further protect themselves by producing more mucus.
- The cycle continues
What SCD does is try to nourish the individual while cutting off the food source that microbes depend on. Kind of like the whole slash and burn tactic Russians used every time enemies tried to invade: cut off the food supply and enemies die. Thus the grain-gluten-sugar-lactose-and-soy-free diet. By eliminating these foods, you decrease undesirable stresses to your intestine, freeing it up to heal faster and reduce the chances of relapse.
I clung to this diet.Desperately. I wanted it to work. Desperately. There are so many people who live medication free through diet and I was going 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.
Even with medication and a strict ass diet, I still managed to land myself in the hospital twice. I spent all my time in the kitchen because everything was made from scratch. I was still not getting all my nutrients. I still was skinnier than normal. So I stopped judging myself. After my last flare I ate some saltine crackers. Then sourdough bread. And then I eventually started eating similar to how I had before being diagnosed with ulcerative colitis. I went almost a year without a flare. But I had another one, so I’m always still trying to figure out how to live with this disease.
After three years, I find myself in the middle. Diet has a role in managing ulcerative colitis. But for me, it does not mean excluding a lot of specific types of food. In the beginning, the SCD diet really was a life saver. It helped me to eat without fear or pain, gave me directions to follow, made me understand my disease in a fuller way, and gave me hope.
But now I follow my own body’s instincts. I listen to it. 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.
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 went through in the various stages I have experienced (initial symptoms, diagnoses, treatment, remission, and relapse). Here are links to the first 6, but there are (sadly) many more.
Also under Health Updates are Ulcerative Colitis Confessions, where I write about subjects I have difficulty talking about because they might seem negative or they deal with mental health, insecurities, or body image issues that have arisen since being diagnosed with ulcerative colitis.
Thanks for reading!