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Wednesday, January 15, 2014

CROHN'S COLITIS CELIAC DISEASE : ULCERATIVE COLITIS - MY STORY PART ONE

HI. I AM NOT A DOCTOR. THIS BLOG IS SIMPLY MY STORY, MY OPINIONS, AND MY OBSERVATIONS. I'VE DONE MY OWN SEARCHES FOR INFORMATION AND COME TO MY OWN CONCLUSIONS. NOTHING IN THIS BLOG IS INTENDED TO DIAGNOSE, TREAT OR PRETEND TO CURE ANYTHING. SUPPLEMENTS AND SOME FOODS CAN AND WILL INTERFERE WITH YOUR MEDICAL TREATMENT AND MAKE THINGS WORSE.ALWAYS CONSULT WITH YOUR DOCTOR. FINISH IN THEIR ENTIRETY, ALL THE MEDICINE YOUR DOCTOR PRESCRIBES.  DISCONTINUE YOUR MEDICATION ONLY WITH YOUR DOCTOR'S PERMISSION, AND ALWAYS TALK TO YOUR DOCTOR BEFORE YOU TRY OR DO ANYTHING NEW IN THE CONTEXT OF YOUR UNIQUE HEALTH SITUATION.

THIS IS MY STORY: PART I.

In 1980, I had a total immune system collapse.  I was diagnosed with an INFLAMMATORY BOWEL DISEASE(IBD)called ULCERATIVE COLITIS (UC).  I had no idea what that was, had never heard of that disease and was confused over what had happened to me.  It came on so suddenly.  It's not like I had a history of intestinal problems.  On the contrary, I was active, engaged with life, a school teacher with a bright future and married 5 years to my high school sweetheart.  And then all of a sudden I was seriously ill.

I didn't know what hit me.  Those of you reading this know the symptoms only too well.  They are horrifically painful.  Every bleeding, rectal cramp drained my energy to where all I could do was cry until my tears wemt dry.  I was prey to my body as it appeared to be attacking itself.

(Children, turn away for a moment...)

I have to tell you, though, I was feeling so much dis-ease, I was willing to do anything to feel better. The bowel movements - did I say they were painful? -They are exquisitely, excruciatingly, blindingly, painful. I didn't just see stars, I saw new constellations that haven't been discovered yet. Oh, did I forget something? Oh, yeah, I've left out the explosive bloody splatter in the bowl. Tarrantino would look away from that scene, I swear it was that bad. And, after many, many minutes (feeling more like hours, months, & years) of cramping, enough to put a red ring around my exhausted, crying derriere, I'd pop out a stool the size of the tip of my pinky. And all from my new seat, my new window to the floor of the world: my toilet. Like nothing you've ever experienced before, unless you've experienced it before. And then you know only too well. I have felt this pain.

I needed a doctor.

Back in 1980, the internet was a distant future dream. I relied, as a patient should, on my doctor and pharmacist for the information there was. I trusted my doctor to treat and to cure me. It's the way I was brought up and taught to think about doctors. They are our healers.

My thought at that time was that my symptoms came on so suddenly, there had to be a trigger or maybe a mosaic of triggers, affecting me.
Homeopathy, naturopathy, whole food nutrition, acupuncture and yoga were terms I wasn't even familiar with. Food allergy diagnosis was confined to an allergist's office and a series of shots.

No, thank you very much.

So, my doctor, my proctologist/gastroenterologist, my ass doctor, the expert at all things rectal, had little else to offer except to follow his prescription. Which I did faithfully, as should any patient, by taking the medication prescribed for this disease. In my case, my prescription was for a drug called Sulfasalazine (U.S. brand name: Azulfidine; Europe and Hong Kong brand names: Salazopyrin and Sulazine.) This drug was developed in the 1950's for the treatment of rheumatoid arthritis.

When the symptoms first hit me with their full vengeance - as this was no gradual breakdown - I went to the doctor, a prominent proctologist in my area. Proctologists are the ass doctors. They examine rectums all day long. That didn't seem to comfort me. Consulting with my doctor after the examination, diagnosis and prescription, I asked my doctor what caused my condition.

The same answer, common today, exited his lips, "We don't really know." I was advised to consider cutting back on red meat and dairy. And to take my medication.

Absolutely brutal.






I didn't want to eat ANYTHING because I wanted to put off having that dreaded intensely personal experience as long as I could. I SO hated the feeling. I felt powerless. Food just turned me off because I knew the pain of elimination was the end result (pun intended). I felt as though someone had taken a steelwool bottle brush to my intestines. Everything was on fire. I was miserable. It wasn't punny back then.

After the doctor's diagnosis, I started taking my prescription, Azulfidine, and sought out a nutritionist who prescribed a diet that was cooked, steamed or prepared in such a way that it was soft and easy to digest. Almost like baby food, which might be a good choice today because they've improved the taste and much is now organic. Today, if I was suffering, I would definitely look into baby food. Also, no red meat. No dairy. No alcohol. No caffeine. No soda. You know, none of the good processed stuff I loved to eat.

To replace the protein I was no longer getting from red meat, I tried adding soy based items like tofu to my diet.  I learned pretty quickly soy was an exacerbator of mine. Hence, all soy and tofu products were eliminated from my diet.  Small pieces of fish and chicken combined with rice were good.  It was a slow, grueling process.  The softer, easier to digest meals did make things easier.  Along with taking my doctor's prescription, I began to feel better.

11 months later, with the help of the medication (which, by the way, turned all of my bodily fluids orange) the symptoms had subsided and my doctor took me off the medication. Other than the orange part, the medication agreed with me and I didn't have any other noticeable side effects.

1981 began well. For about three months.

I was feeling better and, of course, I went back to some of my old ways...a cheeseburger and fries washed down with a large diet soda. Yum! I LOVE LOVE LOVE coffee and soda. I got back into the stuff and I drank a lot of it. I was a teacher; I needed that caffeine to survive, for goodness sake!

So, three months later, I had a flare up. Another dose of painful, bloody elimination.






I didn't understand. Wasn't I supposed to be all better? I had followed my doctor's advice and prescription for a year, and now this? I thought, "I hate this soooo much!" And here I was again, flaring, spotting, cramping and getting ready for the big explosion. I was so upset.

Of course, not fully armed with the information I would later, much later, have, I went back to my doctor. Where else was I going to go? This time, my proctologist prescribed suppositories. I left the doctor's office feeling 'Oh, this is great... A bandaid for my bleeding ass! Thanks doc!" as I cheerily danced away. I never even got a follow up call. I guess I wasn't yet ready for surgery so why bother? I don't know.

And that was the last time I saw any proctologist for my treatment. I really felt my diagnosis was a systemic problem that my procto could only treat. Infuriatingly, there was only the doctor's lip service to nutrition. I was determined to solve my own diagnosis by understanding all I could about nutrition and how my body metabolizes food and sources of energy and what were the sources of energy that I could consume without the aggravated outcome I'd been experiencing.

My goal was to understand my own immune system and become its best friend. And if that salvo was the best my proctologist could do, I was certainly going to have to do this without the help of western medicine. Western medicine gave me one of its best and brightest in the field of ass diagnosis and treatment and, in essence, gave me their best shot. It appeared they were going to treat my dis-ease as a lifelong condition, not cure it. With little sympathy outside the medical establishment, I chose to turn elsewhere.

I really wanted a cure. However, if I could manage my IBD diagnosis, my ULCERATIVE COLITIS, without drugs, I would consider it a huge victory, and a "cure" for myself. I would test myself over and over again for 20 years before I finally got the message. I examined a lot of information along the way and, one by one, I found out some information that I applied to my situation.

When my body experienced these symptoms, I couldn't hate my body. I had to flip that paradigm because what I discovered was that I had to fall in love with my body all over again. Loving my body, and acting in its own best interest, is part of what I believe I'm supposed to do. After all, I didn't make my body. It's a precious, precious gift of life. It turns out, I was poisoning my best friend. And I had to stop.

CROHN'S COLITIS CELIAC DISEASE : ULCERATIVE COLITIS - MY STORY PART TWO











HI. I AM NOT A DOCTOR. THIS BLOG IS SIMPLY MY STORY, MY OPINIONS, AND MY OBSERVATIONS. I'VE DONE MY OWN SEARCHES FOR INFORMATION AND COME TO MY OWN CONCLUSIONS. NOTHING IN THIS BLOG IS INTENDED TO DIAGNOSE, TREAT OR PRETEND TO CURE ANYTHING. SUPPLEMENTS AND SOME FOODS CAN AND WILL INTERFERE WITH YOUR MEDICAL TREATMENT AND MAKE THINGS WORSE.ALWAYS CONSULT WITH YOUR DOCTOR, FINISH ALL PRESCRIPTION MEDICINE YOUR DOCTOR PRESCRIBES. NEVER DISCONTINUE YOUR MEDICATION WITHOUT YOUR DOCTOR'S PERMISSION, AND ALWAYS TALK TO YOUR DOCTOR BEFORE YOU TRY OR DO ANYTHING NEW WITH YOUR UNIQUE HEALTH SITUATION.


MY STORY PART 2

My insides were so raw during the initial months of my diagnosis, I would have done anything to have a regular bowel movement. During that first year, in addition to following my doctor's advice, I started seeing a nutritionist who advised me on food choices that might allow my intestinal lining to be less inflamed on the inside. My nutritionist's belief was that it was possible. I had hope.

My nutritionist advised me to eat lots of easy to digest foods. Portions were always measured by the cup, and I learned to eat several times a day as a consequence. I follow that pattern today. Small portions, 5-10 times a day. Chicken or turkey or fish with a little (1/4 cup) steamed white rice and any kinds of steamed vegetables; apple sauce, bananas, papaya, scrambled eggs, cream of rice cereal, dark chocolate (72% or greater cacao content), water and chamomile tea or aloe vera juice with plenty of water throughout the day.

Vegetables and fruit were to be steamed or cooked until soft or liquefied, as in smoothies. I always eat fruit at a separate sitting or as a snack between meals. Fruit sugar or refined sugars when eaten after a protein meal can cause excess gas, heartburn, flatulence. This is due to the fact that sugar digests faster than protein. Protein slows the digestive process, the sugar ferments, voila! Where's my antacid?!? Like a lot of people, I love fruit and little sweet treats; I just can't combine them with protein dominant meals. And I don't want to get

I had to avoid all dairy products, which meant no milk, cream, cottage cheese, cheese, ice cream, yogurt; Also, no red meat, alcohol or caffeine and definitely NO SODA. My nutritionist's immediate goal was to try and remove the stress from my digestive system and, by doing so, bring down my inflammation. The working premise was that my diminished and fragile immune system needed to gain strength and use its energy to heal.

Working with both my doctor and my nutritionist, my symptoms did finally subside.






I credit nutrition as being part of my overall success. Nutrition, imagine that. Today, I've added almondmilk to my food choices. I'm allergic to soy. Plus, most soy in the U.S. is now GMO soy, or Genetically Modified Soy. Search: monsanto gmo soy

You'll recall, when I first saw the doctor, I was told they were unsure of the etiology, or cause and development of, Irritable Bowel Disease (IBD), specifically, Ulcerative Colitis. They only knew what some anecdotal, patient-reported exacerbators might be: dairy, red meat, raw vegetables, citrus, alcohol, caffeine and stress. I noted that those were my initial clues to healing from my dis-ease after that that first year and the subsequent flareup about three months later. I felt I was on the right track, but, my goodness, I didn't realize it was going to take 20 years of this to finally figure everything out for myself.

Eventually, I was convinced there was an answer for me beyond my doctor's initial diagnosis. I was simply determined - perhaps naively - that I wasn't going to live with this condition controlling me. Whatever it took, short of going back to my proctologist and his, for me, bandaid prescriptions, I was going to find my answer and control IT, whatever IT turned out to be. My diagnosis was confirmed by my proctologist, and I believe I was diagnosed properly and according to the modern medical book. My doctor took me as far as modern medicine could. I was hoping for another solution for me.

I was praying there was another, non-prescription answer. 

For myself, I felt there had to be an answer or answers to my dis-ease and I wasn't going to stop until I found the balance and management I was looking for. As I've said, I believed my symptoms to be systemic, that some mosaic of triggers in my body was causing my immune system to react as it did. It was my initial intuitive hunch. I egan exploring alternative medical approaches.If I could learn how to manage my dis-ease, without drugs, I would consider that a victory and a "cure". Without the internet at the time, I had to rely on the few books and articles available as well as alternative medical professionals, including my nutritionist and eventually my acupuncturist and homeopath.

I looked into holistic, naturopathic, acupuncture and Ayervedic treatments reputed to strengthen my immune system.

Along with the guidance of my nutritionist, I found a treatment that had over 3,000 years of usefulness in the healing arts, and I decided to try it: acupuncture. That was the next big step in my journey. For me, acupuncture provided the relief I was seeking, and I was so grateful. I didn't have to believe in it either. It really worked for me. My acupuncturist educated me about this amazing and fascinating healing art and about supportive herbal supplements and mental approaches to my healing process.

At first, my acupuncture treatments were several times a week, necessary to jump start the harnessing of my own energy (energy, or "chi", prounounced "Chee")in my own healing process. All needles are only used once per patient and then medically waste-disposed after the doctor removes them at the end of treatment.

Acupuncture is bloodless and painless (just a little twinge now and again as the acupuncturist's needles tap into your energy flow, your "chi") and lasts about 45-60 minutes. Eventually, after several months, my acupuncturist tapered me down to maintenance levels, about once a month or so. At that point, it was up to me, really. I had the control.

In the meantime, I learned a lot about the wisdom and history of acupuncture. It fascinated me that some person(s) 3,000 years ago thought to do this, to use needles to tap into a body's energy fields and elicit connective healing. Who the heck thought of this? For me, it was like a miracle gift of genius.

During my acupuncture treatment, I have to tell you, I used a bit of super-focused self-hypnosis. I employed specific visualizations and positive, healing affirmations along with the visual of white light, to relax and focus my entire being on healing. I continually visualized seeing light and sending that energy to be part of the healing my own inflammation.

I focused on my breathing, slowing it down and relaxing into the moment. I felt that by engaging my whole being in the process - mind, body and soul - I was able to better guide and therefore control my own upward healing arc. Internalizing positive, healing affirmations and directing that energy to my
gut healing, I would always rest my thoughts before drifting off to a relaxing sleep, with a personal suggestion that, when I awoke from treatment, I would awaken feeling alert, refreshed, balanced and re-energized.

With my acupuncture, there was never any drug-like hangover feeling, ever. Just calm, relaxed, focused and synergistic healing energy. That's just me. I always left the acupuncturist's office feeling great. Even after the first session, I felt better and more in control. I needed this time for me and I took it. I had to invest in me because I was worth it.

For me, ACUPUNCTURE had wonderful healing benefits. It tapped into my body's own healing forces. So, I followed my acupuncturist's advice and, along with some herbal supplements he suggested, I healed again. I felt I was really on my way toward understanding and managing my ailments. For me, acupuncture was part of the answer. As I felt better, I exercised more with cardio and weights and began to get back the tone I had lost during the illness.

Acupuncture was gradually reduced to just doing a tuneup every month or so. Keeping to the dietary guidelines was still important. And I was good.

Again, for a while.






I was again lulled into thinking I was now managing my IBD, my ULCERATIVE COLITIS. And, again I backslid. The IBDelicious taste of all that processed foodstuff kept tempting me back to the dark side of processed food consumption. I started the backsliding process slowly at first, just treating myself, just testing the waters. Everything seemed ok so I indulged some more. And about 6 weeks later, wouldn't you know it, another flareup...

So, between 1981 and 2001, I bounced around from being mostly in good health to having some flareups. Each time I would have a flare up, I would scold myself for backsliding and thinking I could get away with it. I would be so angry with myself. I knew what to do, didn't I?

Why wasn't I able to stick to the guidelines? Oh, right. That other stuff just tastes so good. All the fat, salt, sugar, creamy, carbonated, carbodelicious treats were so tasteful and alluring (and, I've learned, addictive).

This time, THIS TIME, I was REALLY determined. I had to eliminate my exacerbators once and for all. This time, I would REALLY listen to my body. After all, it was screaming at me again.

In the meantime, because a flareup took a few weeks to heal, I'd have to go through a mini-healing process again of doing my acupuncture, seeing my naturopath, and following the dietary guidelines I knew were part of my regimen. And, having had probably more than a dozen or so flareups in this period of 20 years, I began to really connect the emotional and physical dots.

Ok, so I'm a slow learner. I've been living with this diagnosis since 1980 and I've only been symptom free since 2001. All that I think I know about myself is being put into this blog.

I probably should've done some of this with talk therapy, but I didn't. I would be in it now, though, especially if I was still suffering. Talk therapy can be good. It sometimes helps to see your issues through the eyes of an objective professional, to understand the deeper things going on and help keep you focused on your goals. Consider talk therapy as a possible outlet as we with IBD tend to keep a lot on the inside, too.

Part of the healing process is to let toxic thoughts find their exit relieving you of some of the stress you feel, a natural exacerbator for much of what ails many. Stress is a killer. Talk therapy helps you balance the emotional load and encourages you to take time for yourself.

So, for me, independent of therapy, I realized my pattern of backsliding: After healing, I would be good for a little while, maybe a few months or more, and I would convince myself into thinking I was again invincible, all healed and good to go, and then I'd be tempted again and I'd backslide with the crap. And, after I started up again with the crap, while I was consuming the crap, it took my body about 6 weeks before my next flareup. 6 weeks to break down. Ugh.

So, this time was my second to final epiphany. I was determined more than ever to heal once and for all. There would be no more backsliding into unhealthy choices! In my research online, I looked at what others wrote about the food choices of those who live to be a healthy 100 years of age or more. That became part of the mozaic of my motivation. To live a healthy, long life.

No more breakdowns.

That fickle finger of fate (I hate the word 'finger', by the way. You?) and final fateful flareup occurred in the year 2001.

The culprits? Soda pop, coffee, energy drinks and energy bars, and more caffeine, soda and coffee. I finally put two and two together and stopped insisting the total was 5. Ding, ding, ding! Epiphany!

It took my body less than a week of caffeine withdrawal headaches to flush it from my system. Water and tea and aloe vera juice are what I now drink exclusively. I love Rooibos (pronounced: roy-boss) tea, camomile tea, and hybiscus tea. All are naturally caffeine free. I might have a glass of wine socially.

That said, I sure do miss the combination of sweet bubbly cola and caffeine racing down my throat.  I could easily slug a six pack during the day. But, no more. Done. Finit.  Finished.  Kaput. I've since learned it was like drinking acid; I believe it broke down the natural ph balance of my body and affected my gut's ability to fight off inflammation. For me, it was like drinking fire. I had to put the fire out.

Around that time, the internet became my friend.  I searched for information regarding immune system support.  I discovered the value of food combining, anit-inflammatory natural supplements, the nature of inflammation in the body and how to manage it.  I discovered much about the human body and what an amazing system it is.  Overall, it helped me support healthy food and supplement choices.

I've gone (mostly) organic and eliminated a lot of processed foods. I cook more and I'm in control of the kinds of meals I eat. When I eat out, I'm careful to avoid exacerbators.

Even though I've eliminated some tasty processed treats from my buffet, I don't feel limited. Being symptom free for over 10 years, I have learned to eat small portions several times a day. I can eat pretty much whatever I want (except for the processed exacerbators). I have reintroduced red meat into my diet and make a mean organic turkey and grass fed beef chili. Yes, I use chili powder. Yes, I eat jalapenos and I love a little spicey meatball every once in a while. Counterintuitively, spices are my digestive system's friends. Certain spices are plant based SUPERFOODS.

Too, I'm a Dodgers fan, living in LA my whole life, so when I go to a game, I always have a Dodger dog with mustard. I just don't overdue it and on those days I indulge, I make sure I have my digestive enzymes and fish oil capsules with me. The capsules of fish oil help the meat digest and eliminate smoothly with no constipation at all.

Because I now follow the best advice I've been able to discover, I feel that if I'm good 98% of the time, for goodness sakes, I can indulge with a little crappy - yet oh so tasty - meat every once in a while. But, remember, I've been symptom free for over 10 years. I've become knowledgable about my condition.

No more soda, though. The more I read about soda, the more I'm glad I'm away from it. It's one of the worst exacerbators for my Ulcerative Colitis. And these new energy drinks are so full of inflammatory chemicals and caffeine, they're like an atom bomb of ACIDIFICATION. More about ACIDIFICATION on another page of this blog.

So, for me, it's water, chamomile tea, rooibos tea, and hybiscus tea, almondmilk, ricemilk, aloe juice, coconut water, and an occasional glass of wine. I eat tuna, chicken and turkey, organic grass fed beef, wild-caught salmon and fish, and organic eggs. I can have small salads with any combination of thin sliced, raw veggies of any kind with an oil and vinegar dressing, as well as Greek yogurt for its probiotics. Naturally, I continue to steam and soften my veggies in my meal creations, often incorporating mushrooms, kale, baby spinach, broccoli, brussels sprouts, asparagus, artichoke hearts, jalapenos, onions, garlic and other spices into my egg dishes and my beef and turkey chili.

Equally important, I also watch how I combine my foods. There's really only one rule I follow here: I don't combine sugary foods like fruits or sweet treats with protein meals. I always have my sweets and fruits separate from a big protein meal because of this: In the stomach, fruit or refined sugars digest faster than protein. So, if you're wondering why you get indigestion after following that steak and potatoes with chocolate cake or pie ala mode, this is the war going on in your tummy: The sugar is trying to get to the blood steam fast, and the protein is simply slowing that process. When sugar follows the protein, the result is quick fermentation, causing gas, noisy discomfort and odiferous flatulence. Not a socially winning formula, to be sure.

And, no, you can't just eat antacids. In a condition marked by digestive distress, antacids are the wrong answer. They're not even a good bandaid.

I never use antacids because I follow this simple rule: Eat smaller portions and don't eat your sugar after you've had a big protein meal. It's that simple. You're just going to feel sickly bloated and I don't want you to think that by taking an antacid everytime, everything will be fine. It won't.

The next thing you know, you're popping antacids every day (read the label: there's a two week limit on that stuff). Next up: Proton pump inhibitors or surgery anyone? And, don't worry. If you survive this endurance test, they'll have something new for you to try. Real soon.

As a matter of fact, they're looking to recruit people for experimental treatments. I wish for you not to become a cautionary tale.


The next professional I found was a wonderful HOMEOPATH.

HOMEOPATHS and NATUROPATHS are licensed and trained individuals well-versed in the nature of keeping your immune system strong and keeping you on your path to health. They are knowlegeable about supplements and dietary modifications to help with an individual's personal challenges. My homeopath, who I now go to only on occasion, has taught me much and kept me healthy and strong. Their goal is always your health, your immune system and how to strengthen it, and the nutritional balance in your life. Ayervedic medicine, too, has a nutritional based philosophy toward balanced health that is worthy of further personal investigation.

So, accupuncture, following dietary guidelines and supplements, involving myself in my own stress management activities (exercise - hot yoga is my new passion - meditation, self-hypnosis and talk therapy), a good NATUROPATH and the internet are all firmly placed in my arsenal.

I can still get hit by a bus, but I believe I won't have any more flareups.