I live in a small town in the Deep South, and love that the weather is so mild I can have my morning tea out on the porch. (Except for in the summer, when it’s too hot by 6 am!). I teach undergraduates and have two small kids. I love to garden, travel and cook. Luckily, I have a wonderful husband who is always up for trying whatever crazy dish I come up with.
Some more about her:
I love art. I have lived in France, England and multiple cities in our very own United States. I’ve traveled to 34 countries – Now that I’m feeling better, I cannot wait to start to travel with my kids.
“Who needs this many teapots?” (Hang on, that wouldn’t embarrass me – It just makes me want a nice cup of tea.)
“That Catherine, she always has her head in the clouds or her nose in a book.” “Huh?” I’d reply, having been enjoying a little alone time in my head.
Symptoms: What current symptoms do you have?
My doctor considers me in remission. I have 1-2 BMs per day, and only rarely see mucus. I haven’t seen blood in the toilet in years. Sometimes they’re rock solid, sometimes they’re still quite unformed. Only rarely (1-3 days per month) do I feel queasy, pain, bloated, or urgency. These rare occasions, though, take me totally out of commission. They remind me of how powerful this condition can be – And how vigilant I must remain.
Why I Stopped SCD / Paleo
Or, Food Allergy Testing Propelled Me Into Remission
I’d like to discuss an approach to controlling UC which is a departure from the Specific Carbohydrate Diet, a protocol often mentioned on this blog. I’ve had my symptoms well under control for at least six months. My current protocol is closest to AIP (Auto-Immune Paleo), but it is still quite personalized. I hope to convey the importance of finding one’s own way. If the approach that everyone else takes does not work, don’t be afraid to take a different path.
I was compelled to write this post when I found a box in the back of the closet. It was heavy and packed with old food diaries. For years, I struggled to identify one single digestive trigger for my symptoms – And failed. I was following the SCD diet, taking my medication, but couldn’t manage to get my symptoms under control. I was better but I was far from well.
My symptoms appeared when I was 12, lasted for a year, then receded until college. While living in a dorm, I no longer had my mom’s sensible cooking to balance out my binges. My dietary habits became appalling. I’d eat reasonably all day long, but by ten pm I’d gorge on pizza. I justified it to myself, saying that the cheese in pizza is full of calcium. I ignored the symptoms (diarrhea, light vomiting) telling myself that everyone had a funny tummy during finals. (Especially after eating an entire box of doughnuts during an all-nighter.) Spending a year in Europe was a revelation to me. Cities were bursting with bakeries, but every person was so trim. How? Small portions, moderation, and lots of veggies. Ah ha! While in Europe, my worst symptoms dissipated. The others, I ignored.
After about a decade of ignoring my on-again, off-again symptoms, I left work and went straight to the ER. For weeks, I had increasingly intense abdominal pain. I could not lift a jug of milk without grimacing. I could not hold my young child in my lap, fearing that he would press against my stomach. I had been sporadically vomiting for days. Pancreatitis was diagnosed and the best approach was digestive rest. While in the hospital, I napped and fasted. All nutrition was administered intravenously. It was as old fashioned as it sounds. Nothing to be taken by mouth, not even ice chips. Nothing should stimulate the digestive tract. (All very Victorian. I kept waiting for the leeches and laudanum to arrive. Mercifully, neither did.) After a short stay in the hospital, I was released with pamphlets on sensible diet and told that there was no medication for my version of pancreatitis.
I was back at the hospital within weeks. This time, I stayed much longer. Digestive rest worked again, hurrah! I was thrilled – Until a few months later, when bloody diarrhea appeared. Along with urgency, bathroom anxiety, crippling hunger and exhaustion. Eating became so fraught that I stopped doing it in public. Food felt like an enemy. We attended a wedding one weekend. I couldn’t make it through the thirty-minute ceremony without a trip to the bathroom. I didn’t eat at the reception, terrified of the results. That was the tipping point that pushed me to see a doctor. After my first colonoscopy, I was relieved to have a diagnosis and a prescription. The medication helped a lot, but didn’t eradicate my symptoms.
Within four months of my diagnosis, I had three C-Diff infections. That meant three courses of intense anti-biotics. One afternoon a nurse from the CDC called to ask if I’d been eating at the same restaurant repeatedly. Let’s face it, when the CDC has your personal number, something is not working. Besides, I had been making all of my own food. I knew that I needed to change tactics. While talking to friends at bible study, one woman told me that her aunt had Ulcerative Colitis. She treated it with a holistic approach and dietary changes. And had done so for decades! I called her immediately, and she’s been my guide through this journey. She was the first person to tell me that I could make the decision to view my UC as either a disease or as a condition. Incredibly, she discussed what I could do in concrete ways that made sense. She was the first person that I knew who used diet to treat a serious medical condition. Never had I seen it successfully done by someone with my condition. She gave me BTVC, along with other resources on SCD and the Paleo diet. These Real Food diets helped me so much – But I still needed something more.
After six months of SCD diet, then four months of Paleo (I removed beans and dairy, added root veggies), I felt so much better. Sometimes I only had 3-4 BMs per day, but still I felt depleted and exhausted. All. The. Time. I knew that ten months wasn’t so long – But everything that I read from online communities discussed how these diets instantly granted a ‘new lease on life’ and how they ‘had tons of energy.’ I beat myself up because I couldn’t put my finger on the issue. What was I doing wrong? I had very low energy and was constantly starving, always taking snacks if I’d be away from home for more than two hours. I would nosh on prosciutto and nuts and fruit and hard-boiled eggs between meals. Some days I’d devour 5,000 calories – All Paleo approved. So why was I still so hungry? Why was I still running to the bathroom?
My physician was very supportive of my dietary changes, but she wanted to run a panel of tests to see if something else was wrong. It turned out that the medications had reduced bone-marrow numbers, which were much worse than my previous aplastic anemia. My kidneys were not functioning properly. My thyroid was misbehaving, as well, so I was put on more medication to help regulate that. (Synthroid). She believed that the bone-marrow and kidney issues were side-effects of the medication, so advised me to slowly decrease the dosage. I felt, and still feel, so privileged to have a doctor who supports holistic practices. She demonstrates empathy and understanding at every visit – When she used the word remission, she hugged me!
Finally, I found a nutritionist whom I liked. She urged me to try a serum-based food allergy and intolerance test. (This is considered more specific than skin-based testing, which most allergists utilize.) With her help, I was able to shake nuts, eggs and nightshades. (I had reduced these, but had never totally removed them.) She helped me look at the situation objectively and removed emotion from the equation. Other potentially SCD/Paleo legal foods like beef, cauliflower, bananas, onion, cucumber, cumin and black pepper were pin-pointed as triggers. I was buying those nearly every trip to the grocery store! The first few weeks that I made the alterations to my diet, I felt brand-new. I was left with most meat and vegetables for my meals. I slowly, methodically reintroduced foods and have seen mostly success.
It’s been two years since I did the allergy/intolerance test. Still, I feel incredible. I eat some starches now. Never more than one cup servings and no more than twice a day. When symptoms resurface, starch is the first thing to go. I eat two quasi-grains, buckwheat and quinoa; also, winter squash, pumpkin, rice and most root vegetables. Ideally, I front-load my calories: a nice lunch and maybe a mid-day snack is better than depriving myself and eating a huge amount late at night. Coffee is back, although no more than one cup in the morning after I’ve eaten. The rest of the day, I have tea. Very rarely can I eat salad or raw veggies. I eat very little fructose. Yep, that means most fruits and some veggies are out. I might go for a week with no fruit. When I do have it, it’s a few slices rather than an entire piece of fruit. Sugar and sweets, even those made with honey or maple syrup, are bad news. I keep nuts to a low quantity, rarely more than 10 almonds at a time . (Which makes almond flour a big no-no.). I aim to make vegetables 70% of my diet, which means that I eat them at every meal and snack. I sneak spinach into everything. From meatballs to muffins, nothing is safe from greens. Rice protein is a daily habit. I still focus on lots of good fats, especially animal fats and coconut oil. Bone broth is always bubbling in my slow-cooker. Fermented vegetables are a pillar of my diet. This provides a constant and varied stream of probiotics to aid in gut health, and is so simple to make at home. I make my own sauerkraut, often with the help of my kids. (Rubber hammers, anyone?). I eat a lot of meat, primarily chicken with some pork, turkey and fish for variety.
Is my diet as nutrient-dense as it could be? Well, no. Perhaps not at every meal. However, I no longer see undigested and identifiable food exiting my body. I feel energetic, sparkling. I can last for 3-5 hours between meals. I have the energy to exercise, which makes me sleep better – Which gives me more energy. I feel that, finally, I’ve broken my own vicious cycle.
This is far from an easy fix. The nutritionist and the testing are not covered by insurance, and the $300 that the testing costs is serious money. However, when I think of the cash that I’ve wasted on food that I plan for, buy, prep, and then can’t eat – It was a cost that I was willing to spend. Find someone who is accredited and who will not charge you until you feel better.
I take my own food to 95% of restaurants, even to dinner parties. Arriving at someone’s home with your own dinner? That’s the height of rude. This is the South we’re talking about. Even dear friends have a tough time understanding why I show up at a dinner party with my own tiffin box. Despite the fact that they lovingly prepare (insert gluten/dairy free dish here), their dinner likely still contains things that will make me sick. Before social functions I give myself a pep talk. I am doing the right thing. I am taking a stand for my health. I will not be swayed. It helps to either bring a treat for myself, or, failing that, to know that I have something yummy on the horizon. (My sweet potato and coconut dumplings, yum!) I rarely drink, despite loving cocktail hour. When I do partake, it’s vodka and soda.
Medication: I’m down to one Lialda per day. Would I like to be off medication entirely? Yes. Do I realize how fortunate I am that I have reduced it from the four that I was once taking? Yes. I have totally stopped Synthroid, so I relish the small victories. I’ve stopped Bentyl, a dicyclomine as well as Hyoscyamine. (Both are anti-spasmodics. They helped quell the bathroom anxiety, but otherwise were full of negative side effects for me.)
Supplements: I take VSL #3 (a strong probiotic) twice daily. Zinc and Vitamin D at bedtime. I take enzymes before and after meals. (Pepsin/HCL Betaine, in one; Amylase/Lipase in another. This is likely connected to pancreatitis, but since these organs are all apartments in the same high-rise it warrants mentioning. Once I started enzymes, my BMs became much more formed. No longer was I able to identify food in the toilet bowl – hurrah!)
Lifestyle: I read a lot about the importance of stress management. Even so, it bears repeating. Remember that no one can control the cards that they are dealt. One can only control how we respond. Stress happens to us all. I try to count the ways that God has blessed me, because He is good.
It is so important to take time for yourself every day. Ideally, I’d go to yoga daily. Realistically, I at least try to do a few stretches. Maybe only 30 minutes, but I do something that brings me joy. Often, it happens before the rest of the house is awake. The easiest way to ensure that I get this time is to do it first thing. Sometimes before the sun is up. The important thing is that it happens.
Which brings me to sleep. Rest is important for healing, but sleep is even more crucial. I aim to put myself to bed very early, and to get at least 8-9 hours of sleep. I walk away from the chores that are haunting me and tasks left undone. Once upon a time, I would have used that time to putter about the house or to check social media – No more. (When I cave and give in to the smartphone’s gravitational pull, I feel so dreadful the next day.) I climb into bed, and read words printed on a page. Not a screen.
To conclude, if you’re struggling and haven’t seen results despite rigorous adherence to a dietary protocol, consider food intolerance testing. Ameliorate it with your own research. It was the springboard that helped get me back on the path to wellness. Everyone should make an informed, well-researched decision. And everyone might need a different path. Working with a professional helped me get there.
written by Catherine
submitted in the colitis venting area