I feel like I have so much to tell you guys on the colitis front. I almost feel like I am finally starting to figure things out. Well, sort of. I’m still not in total remission, but I’m getting close, and I definitely have a better perspective on the disease. More on this in minute. First, a quick recap from earlier today!
My new favorite breakfast: Oatmeal with sweet potato + apple puree with ground flaxseed meal and chicken sausage. It’s a delicious sweet + savory combo, and it is soooo incredibly filling””no need for second breakfast today!
After breakfast, Mal and I dropped off Quinn at daycare and then drove to MGH. We both had doctor’s appointments this morning, so we carpooled together. We took the HOV lane and ended up arriving a good 30 minutes before our appointments, so we popped into Whole Foods for a couple of iced coffees. (DO YOU SEE THE SNOW!?! Ugh, go away!)
I actually ordered a decaf iced latte made with rice milk, which was excellent. I lovvvvveee the espresso at Whole Foods!
Mal and I laughed about the ridiculously long straws at Whole Foods, so we snapped a pic on the way out. Wicked long straws? I dunno. It’s the little things in life! Haha!
I had a two-hour Remicade infusion””everything went fine””and then I met Mal for lunch at Anna’s Taqueria. I ordered a chicken and veggie quesadilla with salsa and, of course, it was de-lic-ious. We are such Anna’s lovers.
So, colitis stuff”¦ a lot has happened in the past few months. Ok, where do I start? How about a quick recap?
Last October, I went on Remicade. It started working immediately, but I was getting frequent “loading” infusions, so there was a lot of Remicade pumping through my body. In December, I started getting infusions every 8 weeks, and I made it to February without any major issues. However, I was still having some minor symptoms on and off””nothing major (a little blood, a little urgency, a few more trips to the bathroom than usual), but nothing too scary.
Around this time, I started to get a little frustrated with my symptoms. Basically, I was on this hardcore, chemically drug, but I still wasn’t 100% healthy. I know Remicade is a wonderful drug and, obviously, it gave me my life back, but I wanted to be completely healthy with no UC symptoms. I started to look into holistic options again, and I made an appointment with Mark Mincolla, a natural health care practitioner, who is kind of a big deal around here. He’s helped thousands of people””some of which I know personally””so I thought he might be the key to making me better.
I went to my appointment, and, truthfully, I’m not sure how I feel about Dr. Mincolla. He was friendly and personable (a totally nice guy), but when I told him I had Ulcerative Colits, his reply was simply “that’s easy,” which was extremely off-putting. EASY!? Oh, yea, dealing with this disease for the past four years was walk in the park! Jeez, Louise. BUT, the diet he gave me has actually calmed down my symptoms, so that’s good. He knows his stuff.
I was super strict with the diet for about a week and then it started to make me a little crazy. It’s basically an anti-inflammatory diet with a bunch of specific restrictions, but it was reminiscent of the many diets I’ve done in the past, and it was starting to make me pretty unhappy. I’m okay giving up some of my favorite foods, but when it’s ALL OF THEM (or at least a lot of them), it makes me sad, especially in social situations and when dining out. It just makes me feel like I am missing out, ya know? But, OF COURSE, I will give up my favorite foods for the benefit of my health. I just thought there had to be a better way to balance the two or at least think about holistic healing and improving my health.
Insert the Crohn’s & Colitis Nutrition Foundation (CCNF)!
The Crohns & Colitis Nutrition Foundation is a non-profit organization, which was created to provide affordable nutritional and lifestyle services to those suffering from Crohn’s Disease, Ulcerative Colitis, Multiple Sclerosis, Fibromyalgia, and other autoimmune diseases. They believe patients can drastically change their health and reverse symptoms of their disease through nutrition. The foundation connects experts (Client Advocates, Life Coaches, Nutritionists, and Educators) with patients and organizes specialized Nutrition Heals Retreats with the goal of lifestyle changes and ultimately remission. It’s a pretty amazing organization, and they put me in touch with the co-founder and fellow UC suffer, Dane Johnson.
Dane Johnson was diagnosed with Ulcerative Colitis in 2009. After months of treatment with western medicines, he was on the verge of liver failure and his weight was below 140lbs. Faced with surgery, he decided to use nutrition and lifestyle management to change his life, but it wasn’t easy. During the hardest part of Dane’s transition, Phyllis Johnson remembers her son saying: “Mom, is there a place I can go where someone can help me get well? I can’t do this myself!” Dane’s new regimen helped him gain 30lbs in 60 days! Today he is living a successful, healthy life; symptom and drug-free!
Talking with Dane was amazing. He talked to me for almost 2 hours on the phone, and it was so great to connect with someone who has lived the IBD life and knows how unpleasant and frustrating the disease can be. There were so many things that could go unsaid and didn’t need to be explained. Dane also said so many things that really hit home and changed my perspective on how I live with the disease, like there’s SO MUCH more to the puzzle than just food. Here are my favorites from our conversation:
- Healing is more than just physical. The emotional part of how you perceive the disease is really important. If you have positive energy, there can be a huge ripple effect in how it affects healing.
- What you eat is huge, but it is just a piece of the puzzle. Colitis (and other autoimmune diseases) cannot be reduced to just one thing. You need to look at the big picture and how you are living your life.
- Your goal is to be in remission. Dane said: “If Remicade is working, you are in a great position. Don’t think drugs are bad.”
- Think about what you can do to solve day-to-day/lifestyle problems. Are you having trouble sleeping? Go to bed earlier. Read a book. Use essential oils. Tackle one thing at a time to move yourself toward remission; otherwise, it can be too overwhelming.
- Healing holistically takes awhile. If one thing doesn’t work, find another way. Look for solutions. Pay attention to small victories to keep you motivated. Believe you can heal yourself.
- Be your own doctor. Listen to your inner voice. If it makes sense as a human being (specifically in regard to diet), do that (i.e. gluten-free bread versus a potato). Basically, eat whole foods and pay attention to how they react in your body.
Dane had so many wonderful words of wisdom to share, and they left me feeling more in control of my health than I have ever felt since being diagnosed with UC. For once in a long time, I really, truly think I can get better. Someday, I would like to be off Remicade and live a drug-free life, but, right now, I am focused on living the healthiest and happiest life I can. I will continue to update you guys in the coming months with how things are going.
Dane also told me about Food Matters TV, which I haven’t checked out quite yet, but I wanted to pass it along as a resource just in case you haven’t heard of it.
The end. (This was a much longer post than I planned to write!)