A Major Victory Over Crohn’s Disease

By Julie Kalivretenos July 5, 2010

It’s been a week since the big GREAT news! As I start the day this morning I can still hardly believe this new reality, feeling as if I’ve dropped a 500 pound burden off of my back. I have so much to say I can hardly keep it structured in paragraphs, much less a single blog post!

Over seven years after being diagnosed with Crohn’s disease, the greatest thing that could ever come from the recent tests I’ve undergone this past week is that it is officially in remission! In fact, no Crohn’s was detected whatsoever, it has diminished, vanished, essentially POOFED!

I do have two wee little stomach ulcers, though…but what are mere ulcers? Now that I’ve slayed the dragon, no problem! Piece of cake!

Recent history:

Rewind to about three weeks ago. I was sitting in my family physician’s office reviewing the latest blood work results. I’d just undergone my annual physical, which includes a (more extensive than usual) blood comprehensive, the regular “physical” routine, and some scripts for gastro-related tests. Something worth mentioning here are the other little pieces to the triumph: a vast improvement of my iron, hemoglobin, B-12, and vitamin D levels. They were at an all-time low three to four years ago, and took almost equally as long to normalize. Last year I underwent two iron infusions and was just shy of requiring a blood transfusion. These types of deficiencies are unfortunately pretty common in people with Crohn’s disease. Still, I’m in the low-normal ranges of each so I will not be taking it all in stride!

Lately I’ve been experiencing some different types of pain and discomforts, particularly on my left side beginning beneath my rib cage and descending. It’s a different sort of pain than the typical Crohn’s flare, usually permeating from the right side. In fact, I haven’t had any right-side flare-ups for many, many months. Any complaints are in this new location and range in intensity, occurring several times per week and sometimes I don’t feel it for many weeks. At its worst, it feels like burning, prickling, stabbing pain, or like many stabs at once as if something was inside of me trying to fight its way out. Sometimes it’s like hunger so intense it’s gnawing, and wakes me up in the night. And then there’s the spontaneous swelling and inflammation that literally makes me look 6 months pregnant!

So back to my family doctor, who is absolutely amazing (like a younger Dr. Oz – woot woot) and I drop in to see him every two to three months. Prior to last month’s physical I had reluctantly agreed to try a new medication, Pentasa. It’s a little less aggressive than the norm and addresses the inflammation in inflammatory bowel disorders. And it seemed to be working well. One of the concerns of Crohn’s disease is that if it goes unchecked and not kept under control, it not only can worsen in its current location, it can spread to other sites, even to other organs in the body.

After sharing the latest abdominal discomforts with my doctor, our first concern was Crohn’s progression. He immediately ordered a CT scan, and shortly thereafter I was back in the gastroenterologist’s office for the next step in diagnosis: the wireless capsule endoscopy. If you’re not familiar with this procedure, it’s actually extremely cool. First thing on a Wednesday morning, I swallowed a capsule containing a tiny camera that went on a 10-hour journey of capturing 360∘photography of my insides, from the esophogus, on through the stomach, the small intestine, and finally concluding somewhere at or around the large bowel. The particularly neat and helpful thing about this procedure is that it can view areas of the small intestine that were otherwise too deep and evasive for doctors to see through other means.

I returned to the gastroenterologist late that afternoon to have the data recorder removed, and was informed by the physician’s assistant, “The doctor typically reviews the results on Fridays. We’ll schedule you a follow-up for next week to go over them.” Okay, sounds great!

So to my surprise, the very next (Thursday) evening, I received a phone message from the doctor at about 8:00 pm, “Please return my call immediately.”

Well, “holy shit” is all that went through my head. Why is he calling me the very next evening? This cannot be a good thing! I’m always the optimist, but since when does a doctor call you at 8:00 at night to tell you everything is brilliant!

“You have two new ulcers and some inflammation,” he proceeded to say after finally frantically reaching him, “We need to schedule you immediately for an upper endoscopy, biopsy, and a colonoscopy.”

Lovely! The news sent shudders of worry and fear right to down to my bones. I’ve been working hard for years to do the right things, to be conscientious of diet, my emotional and spiritual well-being, and to always keep a positive and progressive mindset that my body can – and will – heal itself! As much as I like and respect my doctors, as confident as I am in their competency, they always heir to a side of caution which doesn’t so much sound like the rosey things we’d like to hear. And that is okay and predictable.

That subsequent weekend brought on some blue worry and anxiety, to say the least for my husband and I. He had once lost a spouse to cervical cancer, and couldn’t bear the thought of anything like that happening all over again. I felt terrible for him, and tried to be as optimistic as I could. But the reality was I had bought into the doctor’s news as an interpretation of bad news. Never mind having to undergo a drug induced stomach flu in preparation for the colonoscopy – 12+ hours of sheer misery!

But cutting to the chase, after Monday’s examinations, the doctor gave word to my husband as I was still under sedation, “There is no Crohn’s present, the large intestine and colon look great, we just now need to diagnose the cause of the stomach ulcers…” WOW. I mean, WOW!!!

And to no surprise, he cannot really give an explanation except to say that “it happens”.

Cleaning up diet and healing with raw food:

Ironically, during this past week I’ve been contacted by a few Crohn’s sufferers or who have an afflicted loved one, that are so very anxious for help and anything they can do within their own empowerment to help them overcome it. The common question asked by these most recent contacts, as well as with most others in the past is “does diet really make a difference?” And my answer is absolutely, positively, without a doubt, and most certainly in light of this most recent news…YES!!

What I cannot confirm at this point in time is exactly how or what, very specifically and singularly in terms of my diet (if anything), may have sent the old Crohn’s packing. I suspect it was combination of choices, exclusions, and a cumulative effect of dietary changes over time.

I also don’t believe that healing is limited to a physiological level, you need to also involve your mental, emotional, and spiritual states of well-being – essentially your whole Self must be involved. For purposes of keeping this posted contained and focused, I will speak mostly of the dietary aspects as they pertain to Crohn’s. I could so easily parlay into other very relevant pieces of an overall picture of health. And these are important too, which I’ll save for later postings!

We’re all at a different benchmark when attempting to heal from chronic disease or any overall health matter. No two people walk the same path or fight the same exact battles. We all heal at our own pace. It is no different for Crohn’s disease. The cases range from minor, as mine was considered, concentrated in a small area, or it could be much more severe, extensive and widespread.

I’ve been on such an amazing journey these past 10-12 years, with diet being just one single aspect. I thought that describing pertinent events and breaking them into a timeline – excerpts from my “health diary” if you will – would be helpful.

My overall health before Crohn’s was historically very good. I’ve always been very physically active and slim, and at times was unknowingly and inadvertently at risk of being underweight because of Crohn’s. I am 5′-4″ and currently stay at about 11o pounds, and was 100-105 in my 20′s. Before the time line below, I took for granted that I could eat most anything at any time. After all, if you’re not overweight, no worries right? Wrong.

1999-2002: Some of the worst and most painful symptoms I’ve ever had came after eating red meat. I didn’t eat it often, but began to notice this common denominator. One night after having an all-American supper of filet mignon and potatoes, followed by being bedridden in horrible pain for over 3 days, I said, “no more”. It was around this time that I’d also taken notice of certain dairy items. I remember having similar painful reactions after eating ice cream or drinking milk products, however, no discomforts with cheese or yogurt even to this day. Pain to a lesser degree came with eating popcorn or any corn products. In 2000, I began my yoga practice, and found the course only natural to explore vegetarianism, which I began to do gradually. Still, I would occasionally eat poultry, seafood, cheese and yogurt. At this time, I had not even been officially diagnosed with Crohn’s.

2003: This was a bittersweet year. I had just received my Raja-hatha yoga certification and felt healthier, more energetic, centered, and knowledgeable about nutrition and well-being than I ever had in my life. I was even teaching healthy cooking classes privately and for groups, tying it in with the nutritional aspect of my certification, expressing my love for beautiful, vibrant, healthy cuisine!

But in April, the typical debilitating abdominal pain I had grown so used to over the years came back one night and not alone. This time, more severe symptoms surfaced. I woke up at 4:00 am with a fever accompanied by vomiting and bloody diarrhea, and the pain was more excruciating than ever. I checked into the hospital knowing something was very wrong, where I remained for 4 days. There, I went through an extensive barrage of testing and was ultimately diagnosed with Crohn’s disease.

I’ll never forget my initial meeting with the hospital’s gastroenterologist. He handed me a huge stack of information about Crohn’s and IBD and “the LIST”. The LIST was seemingly endless columns of “possibly” offensive foods. And then of course there was the medication, some of which was intended to be on a permanent basis. I was prescribed Remicade, a brand med for treatment of autoimmune disorders ; Cipro, an antibiotic, Prednisone, a steroid medication; and oxycodone for the pain.

After reviewing the LIST I wondered what on this Earth was left for me to eat besides mashed peas or baby food? It included virtually every fruit and vegetable I loved, and that I relied on for nourishment. At this point I’d been 100% vegetarian for over a year, and while I understood the concept of a process of elimination to alleviate food-aggravating symptoms, I felt I’d already accomplished much by my present diet and becoming a vegetarian. The thought of taking meds for the rest of my life just sounded impossible and miserable and I thought there must be a better way, a natural way!

I began the quest for what diet and lifestyle methods delivered the true meaning behind “let thy food by thy medicine”. The first truly inspiring person that I immediately fell in love with was Christina Pirello, who had healed herself of leukemia through a macrobiotic and vegan diet, and Chinese medicine. When I came across one of her books, “Glow”, it became my bible. She introduced me to macrobiotics and so many other simple ways to alternative health, and the book served as a major platform as I dove into the under-workings of food industry, planetary health, veganism, alternative healing, essentially an entire new world!

2006: Until now, my flares were occasional and fortunately none as severe was what landed me in the ER three years ago. During 2006, there were many changes in my life, mostly quite positive, exciting, and many in a short period of time. I moved from South Florida to Orlando, got a new job, got married, moved again, and gained an instant household of five – and that’s all a very brief list. During our hot honeymoon phase of marriage, we were also living up our love for food, traveling, and celebrating a bit too much with the bubbly and wine! Although my husband is a vegetarian, he’s a very liberal JUNK food vegetarian, so I was starting to eat things that weren’t typical for me (if it sounds like it is all his fault, well of course it is 🙂 . I was eating a lot of pasta, fried food, processed mock meats, butter, and cheese – not at all my norms. Slowly but surely it began to catch up.

Now regardless of the splurging and careless eating, I couldn’t help but notice several books with “raw” on their spines high up on my husband’s library shelf. Of the most notable, Juliano’s “RAW”. I had heard of the raw diet over the years, but never did I do any research because like many people do, I’d dismissed it as a diet of boring and more boring – sprouts, plain salads, and little else. I thought that I was WAY too much of a foodie, and a raw food diet wouldn’t be any better than the LIST of doom!

2007: On the heels of increased flares, and additional new concerns such as acute anemia, menstrual issues, aches, pains, and depression, I began to slightly panic again when my doctor suggested medications. I jumped right into the raw food lifestyle to learn everything I possibly could. An internet search brought me to well-known Angela Stokes-Monarch and her incredible weight loss story. From there, the search results became viral it seemed, with case after case of people who had healed their chronic conditions with raw food. I also quickly found out that the food is anything BUT boring, especially when July brought me my first visit to Pure Food & Wine in New York City. I was immediately on board! I became so excited about the new adventure and world of raw food that I started this blog.

2008-2010: Things did get worse before they got better. I was on and off of medications, struggling with iron, vitamin D, and B vitamin deficiencies. I was trying to continue exercising regularly but it was more sporadic because of deficiency fatigue. My menstrual cycles were crazy, my tummy was always upset. There was a great deal of stress going on in our family life. I had to have two iron infusions, which is basically liquid iron administered over several hours via IV port. However, despite all this I kept good consistency with my diet by keeping at least 80% of my intake raw and eliminating anything processed.

Eventually, my energy, nutrient levels and overall health began taking a gradual incline. And since January of 2010, my iron levels have been sustained in low-normal range. This alone has given me so much more energy, so I’ve been exercising regularly five to six days a week by running, resistance and weight training, and doing yoga. And of course, my diet has continued high raw, which brings me to the present day.

Just a few of the key foods? GREENS….I eat a lot of greens and I can’t emphasize enough how important they are! Human blood is so similar to chlorophyll, and the nutrients found in dark leafy greens nourish and heal, literally giving us life! I also eat a rainbow of antioxidant rich foods, like blueberries, strawberries and colorful bell peppers. Coconut water is also magnificent for healing and hydration. I am now healthy and Crohn’s free!

Tips for your own journey to healing:

1 – Acknowledge that the dis-ease exists, but do not fuel it by believing in its power over you. Healing occurs in leaps and bounds when you awaken to the psychological effect, and how much of the dis-ease resides in the mind. I never realized just how true this was until I was told I was in remission.

2 – Acknowledge the dis-ease exists, but do not fuel it by taking your health for granted! If you make progress but revert to not-so-good habits, it’ll bubble up and remind you.

3 – Don’t identify yourself and who you too much with the dis-ease. We do this so often (“Hi I’m Julie and I have Crohn’s disease”) and don’t even realize how the dis-ease begins to define who you are, which empowers it to become permanent. You are not your dis-ease!

4 – Everyone has a unique relationship with their dis-ease, and therefore you have to find your unique inner strength, mental, emotional, and dietary combination to overcome it. Dis-ease exists not at just a physical level, but it is only at the physical level that medicine or diagnosis can assist. Heal your entire being.

5 – Keep an open mind and an open heart to healing. But don’t blindly follow advice because someone swears by a single “miracle” method, especially if that method is being sold in a box or has a lofty price tag. Take in as much information as you can learn and use your inner guidance, wisdom, and discretion. We all have this internal compass. Find what works for YOU.

6 – Take care of the physiological aspect of wellness with diet and exercise, but be flexible because not all habits need to be etched in stone. When we put all of our efforts and faith in a single routine or habit, it leads to being stuck in a rut and may create road blocks to recovery. Be aware that what works for our bodies one day may change in the future.

7 – It is okay to take medications, and it is a personal decision whether you decide to or not. Choose wisely and if you must take them, do not rely on them as a permanent lifeline, but just as a temporary bandage while your body heals.

8 – DIET DOES MATTER. EAT YOUR GREENS, LOTS OF THEM. Eat something green with every meal, the more green, the better. GREENS HEAL.