|"The best way out is always through." Robert Frost|
It was all so confusing. Nine months prior I had made all the right decisions to improve my health. I had been committed and disciplined. I eliminated processed foods, switched to quality meat and organic produce, and I cut out grains. I had already eliminated sugar and dairy years before, knowing they caused sinus issues, and I had been experimenting with gluten-free for several months prior to that. I wanted to be healthy; to reduce my risk of getting cancer, to change my relationship with food, and to nurture by body with the foods it was designed to eat.
I had also quit my full time job and opened my own practice. I tossed out the alarm clock. I eliminated my commute. I incorporated mindfulness into every day and my stress levels significantly decreased. I started CrossFit and got in great shape. I even started this blog to chronicle my health journey and share my love of food with you. I had worked hard for all this, and I was on a trajectory towards perfect health.
Or so I thought.
Throughout the past nine months, despite feeling mostly healthy, gastrointestinal issues would come and go. Sometimes triggered by foods, sometimes by nothing at all. I would have moments of relief followed by days or weeks of intense symptoms. I kept thinking my body was adjusting to my diet changes. I wondered if my gut flora was a bit out of balance. I assumed it would probably just go away eventually.
Eventually though, I started noticing I had made a lot of adaptations to cope with the symptoms, and they were interfering with work, my social life, and my exercise routine. One day I noticed that I wasn't recovering from workouts like I used to. I cut back to two per week but this was still too much. I kept complaining that my body "just hurts."
A few weeks later the pain in my joints and muscles was so bad that I could not get out of bed. I had to take pain relievers every day in order to function at all. Massage, Epsom salt baths, heat/ice, stretching... nothing touched it, and in most cases made it worse.
In addition to the joint and muscle pain, I was so fatigued I had to take naps every day. I got regular headaches. My eyes were sore. I developed a skin rash on my hands. I had clothes-drenching night sweats. And worse of all, I feared leaving the house due to the urgent, frequent, and painful trips to the bathroom. Everything I ate seemed to make me sick. I lost 10 pounds in a 10 day period, and not because I wasn't eating but because my body violently revolted against everything I ate.
My naturopath thought I might have had SIBO (small intestinal bacterial overgrowth) but when the herbal and the pharmaceutical antibiotic medications did not work, I knew it was probably something much worse. After a pointless trip to the ER, I saw a gastroenterologist who ordered a stool sample (that's fun) and a colonoscopy (even more fun) the next week.
I don't remember much of the colonoscopy except the nurse dressing me (awkward) and another nurse telling me I needed to fart (huh?). During the procedure they pump air into your colon so when you're in the recovery room (they actually called it The Farting Room) you are told that you need to fart all the air out. I remember the nurse saying, "Come on Emily, don't be shy!" and me responding, while falling in and out of sleep, with "I know, but they just aren't there!" I remember waking up and catching a glimpse of the nurse out of the corner of my eye and asking her if I'd farted yet, "Have you heard anything?" She chuckled and said, "Only a little bit, keep working on it Emily." Unfortunately I did not see the humor in that experience; the medication had me on some other planet where farting isn't funny. Too bad, it would have made the colonoscopy much more entertaining.
I woke up several hours later not remembering how I got home or what my doctor saw during the colonoscopy. I had a voicemail from my pharmacy saying that the prescriptions would be ready the next day. Prescriptions? I don't remember being given any prescriptions. I fished through my purse and found some discharge paperwork with several photos of the inside of my colon and a bunch of medical jargon that I didn't understand. I skimmed down to the summary and saw the diagnosis: Crohn's Disease.
Cancer aside, it was the one diagnosis I didn't want.
What is Crohn's Disease? It's an autoimmune condition that belongs to a group of conditions known as Inflammatory Bowel Disease (IBD). It's a chronic inflammatory condition of the gastrointestinal tract.
What happens with Crohn's is quite perplexing. Essentially, my GI track mistakes healthy bacteria, food, and other microorganisms in my intestines as foreign invaders, and has raged an attack. This produces inflammation, which under normal circumstances is helpful in ridding the body of materials that are actually harmful. But in my case, the inflammation attacks healthy cells, it does not subside, and leads to chronic inflammation, ulceration, thickening of the intestinal wall, and a host of life-altering symptoms.
Some of us are lucky enough (sarcasm here) to get "extra-intestinal" symptoms. Sometimes I accidentally-on-purpose call them "extraterrestrial" symptoms because it sometimes feels like some foreign alien has inhabited my body. For me, these include extreme joint and muscle pain, night sweats so bad I have to change my clothes and sheets in the middle of the night, eye pain, skin rashes, fatigue, and headaches.
There is no known cause or cure for Crohn's Disease. Diet, stress, environmental toxins, and genetics may aggravate Crohn's Disease, but they don't cause the disease on their own. I carried none of the risk factors so this was all very confusing to me. My gastroenterologist says that it's likely a "coincidence" that my symptoms started when they did. And whatever the trigger, I probably would have gotten the disease at some point anyway.
The goal for patients with Crohn's Disease is to get the disease in remission. This can be done through medication, nutrition and lifestyle alterations. For some it takes years to figure out how to stay in remission. Most will experience "flare ups" many times in their life. Others stay in remission for years or even decades.
Living With Crohn's. I ask myself every day "Why me?" and "What am I supposed to be learning from this experience?" I keep thinking that if I can understand why I have this disease that maybe I can start to heal. But I'm quickly learning that those answers are not available right now and I have to be okay with that.
I am grieving. My life is forever changed. I'd like to say that I've fully accepted the diagnosis but I'm not there yet. My mind rants and raves continuously over this. Every moment of every day revolves around this illness. I am tired all the time. I wake up every morning with pain all over my body. I move like an arthritic 90 year old. I cannot do the same things I used to do. I am embarrassed by the nature of the disease. I'm worried that it will control my life forever. I hate the way my body has changed. I feel overwhelmed in controlling and monitoring every morsel of food I put in my mouth. I am frustrated that I can't plan social events or go on a date without worrying about whether my symptoms will interfere. I get angry when I walk down the street and see someone eating a scoop of ice cream, knowing that I can't do something so "normal.
I feel isolated. Don't confuse that with lonely because most of the time I don't want to be around other people. But nobody really understands what it feels like to be this sick.
I feel like a phony, showing up to work with clients and not telling them why I walk like a penguin or why I keep losing more weight. Some days I don't eat because it's the only way I can guarantee I can sit through 5 sessions in a row without my bowels interrupting. And with the medical bills piling up, taking sick days is not an option. I'm self employed so if I don't work I don't pay the bills.
I get resentful when someone tells me I look great because I've lost a lot of weight, or that I don't look sick at all. If only they could see in the insides of my intestines, or could watch me get out of bed, take a shower, and get myself dressed each day, or know what it's like to be malnourished. I hate it when someone says, "I don't know how you do it, you're so brave." As if I have choice. And please don't tell me you are sorry. How am I supposed to respond to that?
I know you want to help, but I don't need to see your homeopathic doctor that has helped your second cousin's boyfriend with his allergies. I know you want to be supportive, but calling every day to find out what's wrong is a burden because I have to keep calling you back. I don't need any more books to read; I'm on the internet every day trying to get answers and amazon.com has been getting half my paycheck anyway.
What can you do? Offer to help but don't insist on it. Invite me to spend time with you but be flexible if I can't come or bow out early. Do ask me how I'm feeling, but please call, don't text because you won't get an honest answer if I have to write it down. Don't be afraid to ask me questions about the illness. I would rather you have accurate information. Don't make our time together be about food, or at least let me pick the restaurant. Please don't ignore me because you don't know what to say.
What's Next? My gastroenterologists thinks that because this is a chronic condition I could need medication for life. Well, that's not part of my plan. Despite her dreary recommendation, I'm hopeful I can manage this on my own.
The side effects of long-term use of the medication can be dreadful and they increase my chances of getting cancer so for me, this is not an option. There are many complementary and alternative therapies that are worth trying, and I've read many stories of people managing Crohn's entirely through diet and lifestyle changes. I will be one of those people.
For now, because my quality of life is so impacted, I am taking the medications in order to put this in remission in the short-term. My doctor thinks I will feel almost normal again with these medications. Once I start feeling healthy, and I become more aware of what my body needs, I plan to go off the medication. Because I don't have the usual risk factors for Crohn's, and I was already on an anti-inflammatory diet when this started, I will need a creative approach and a lot of support. I'm going to work with a nutritionist that specializes in IBD, start acupuncture and continue massage.
Cooking and creating recipes is incredibly healing for me, so I look forward to getting back in to the kitchen and making amazing meals to share with you. This blog has always been a wonderful platform for me to share my favorite meals and the events of my life. Despite any adaptations I might make to my own diet, Up Close and Edible will continue to feature delicious real food recipes that are free of grains, refined sugar, pasteurized dairy, legumes, highly processed oils, and vegetable fats. I still strongly believe the Paleo/Primal diet still serves as a solid foundation for the most healthful and nutritionally dense diet that exists. And it helps that this diet, and others like it, having been helping people with Crohn's live symptom-free for years.
Also, thanks for listening. I am aware that this is one of my more cranky posts. I think I just had to get the words out. It's important to get this out in the open. I've been holding this in for a long time and it felt wrong to post recipes and blog about other things when my life is so consumed by this illness.
I don't know why I got Crohn's Disease. Maybe it's because I can handle it. Maybe it's so I can understand my clients better (ironically, I specialize in working with people who have life-altering medical diagnoses). I do know that it can only get better from here. I won't be held hostage. I'm convinced of this.