I am one of a growing number of people that suffers from Crohn's Disease. Crohn's Disease is an auto-immune disorder that I have suffered and lived with since I was 16 years old. After a very recent flare-up, I decided that I should document my episodes and experiences. Most of the documents and writings I find on the web are rather cold and my hope is that I can show -- through my words -- what goes through my mind.
Around 2008, life changed again as work took on a life of its own. I was so busy. So busy that I wasn't getting sleep and I needed to stay awake. I had been doing rather well with my 2pm cut-off for caffeine, but that can only last so long before an artificial lack of sleep causes one to look for methods to fill the gap. It was at this point that I learned that I could add shots of espresso to my coffee. I also learned that I could order shots of espresso alone as a drink. So I did what any good consumer, workaholic would do and started to add shots to my coffee in the morning. I also started drinking cortaditos throughout the day. A cortadito is an espresso shot in Miami for those that have not visited this little country at the tip of Florida.
Like most drugs, my body would start to tolerate the current level of caffeine and I would up the dosage. This continued for a little more than a year. At my height, I would drink 12oz of coffee with 3 shots of espresso in the morning. Another of the same in the afternoon. And then 1-3 random shots of espresso through the day. People in Miami have little diners everywhere selling cortaditos and so they are VERY easy to come by. One morning I looked in the mirror and saw a sullen face. I was so tired. I had hit a plateau and I could no longer substitute caffeine for sleep. I was taking in so much caffeine, and it had never occurred to me that there would be a point where it would no longer work. The decision to remove a big chunk of caffeine from my diet came at this point; the decision was helped along by my stomach and frayed nerves.
I gave up all caffeine cold-turkey. Bad, big mistake that no one should EVER make. The next day I was hit with an exhaustion I have never known in addition to a splitting migraine. It didn't matter how much will power I had, I was not going to make it through this going cold-turkey. I decided to be a tad more realistic and decided to wean myself from caffeine in a slow manner. I decided on a plan of action: 1. No more lone shots of espresso. 2. Reduce my afternoon shots to zero
3. Remove all caffeine after 2pm (again).
4. Reduce my morning shots to zero
5. After allowing my body to equalize, remove the morning coffee and any remaining caffeine.
I just went slowly removing the caffeine, bit by bit. Always making certain that the transition was minimal. I knew that it wasn't going to be easy to break the habit, but I had no idea that it would take me three years to get to step 5. Let me repeat that: Three years to get to the point where I was only drinking a small cup of coffee in the morning and nothing else. The amount of pull caffeine has on the body is amazing. And then to feel the yearning for caffeine for three months after removing it entirely from my diet; it makes me wonder how such an addictive substance can be legal.
Today was an abysmal day for me. I felt it coming last night, but I was not expecting to be hit as hard as I was. When I woke in the morning, I was hit with vertigo. I learned the hard way that I was fully immersed in vertigo when I got out of bed and immediately fell to my left and to the floor. For those unaware, vertigo is chronic dizziness. When experiencing vertigo, your body loses sense of which way is "UP." As I settled in for my slow-motion adventure of the day, I was able to pin-point that my body thought that "LEFT" was "UP."
For someone that has never experienced prolonged dizziness and vertigo, it can be a bit difficult to understand. To better understand the feelings and sensations, try holding yourself on a rope at different angles. At each of these angles, you will notice a weird feeling as your body tries to tell you to correct yourself. Hold yourself so that the left side of your body is pointing toward the sky; that is how I am feeling right now, except that no matter which way I turn or lay down my body still thinks that the left side of my body is in the up position. This obviously causes me great anguish and limits my mobility. I cannot walk without assistance and I find that I must prop myself so that I don't fall to the left.
I have been experiencing vertigo since I was young and have been unable to pin point the cause. I can only assume my recent trips coupled with an inability to sleep and early 5am rise on Monday contributed to my current predicament. I would really love to hear if others have had to deal with vertigo, how they have managed, and if anyone has found a cause for it. I know that I do not have peripheral vertigo, which is caused by the ears. I can hold my neck and back of head and alleviate the vertigo, which leads me to believe I experience central vertigo.
It has now been two years since I gave up caffeine. I'd be lying if I said that I haven't had any caffeine in the past two years. Every now and then, I do have a small 6oz cup of black tea. I think I have had three cups like this in the past year. I am truly amazed at how such a small portion of black tea can make me feel so energized. Three years ago, it used to take me drinking an 8oz cup of coffee with three shots to feel as much of an effect as I feel now with just the small cup of black tea. This realization is what keeps me away from almost all things laden with caffeine. Not going to lie, there are some days that I feel so dog-tired and contemplate getting a cup of coffee in the morning. On those days, I push through it with yoga, jogging, working out, getting in the pool or something else to get my blood going.
I look back on myself in 1997 and remember all of the foods and beverages that I ate and drank. The amount of caffeine that I ingested was staggering. I would continuously drink Coca Cola, coffee, tea, and other caffeinated soft drinks throughout the day in a non-ending stream. It didn't matter that the foods were laced with caffeine. I just "enjoyed" the flavor and kept on taking these foods into my body. As much as I took in, I was always tired and I always wanted to sleep throughout the day. When it actually came time to go to bed, it was so very difficult to go to bed. As tired as I was, I suffered from insomnia.
I started reading about what I could do to help with this situation. There are a lot of interesting postulations, theories, hypotheses, and opinions out there. Of everything I read and learned, the one item that resonated with me the most was stopping caffeine after 2pm. There were many people that wrote about how this self-imposed rule helped them sleep better.
I tried and I failed. With high school and then college, I needed the "energy" to get me through. Had I known what I know now I might have kept with the reduction. It wasn't until 2005 that I actually made myself follow the rule. It was very difficult to only drink non-caffeinated beverages after 2pm. Caffeine was in everything and was hawked without a second thought. I eventually managed to keep myself to this rule and eventually found that I did sleep better. At this stage in my life, I had been giving myself B12 injections for 3 years; I think that this gave me real energy that allowed me to break through part of the caffeine chains.
Everyone in the USA has heard of the FDA. For those that haven't heard of it, it is a federal agency better known as the Food and Drug Association. Like most other governmental agencies, the FDA is populated by a large number of people from myriad backgrounds. At its inception, I can believe that this agency was focused on helping and advocating for the general populace. I can believe that in its time this agency has done a lot to set standards that have improved the health and eating habits of many. Unfortunately, I can see what worked, even a few decades ago, is not viable in our current world.
Big corporations have learned how to purchase their own rules while also lobbying for legislature to create loopholes. I am not anticapitalist, but I am in favor of full disclosure of any information pertaining to the food I eat. When I read about GMO's, time-bomb foods, addictive additives, nutrient stripping, it does give me pause. All of those cheap foods are created using methods that make them empty. Yes, they are cheap by themselves, but one must still purchase all of the singular nutrients that were stripped out of the foods during processing. Are those foods really cheaper when you have to purchase all of the components separately?
The minimum standards set forth previously, while good as a stepping stone, have become a benchmark for measuring health. The minimum standards were set as a means to measure for everyone to know what was necessary to just get by in life. These standards are far below what is necessary for most people to live well or even to thrive or be active. That's right, there are minimum standards and then there are healthy standards. Unfortunately, healthy -- or maximum -- standards are not so easily quantified and we, as a society, are lazy.
Everything is based on calories and singular components. Why are we so focused on calories? We are starving ourselves of nutrients by worrying about the number of calories we eat. This calorie counting is only exacerbated by the fact that our foods have been processed down to the singular components listed as necessary by the FDA and then laden with sugar, salt, and artificial fat devoid of any nutritional content just to make those foods palatable.
I think about these points and realize that FDA approval no longer means, "Safe for consumption." Instead it means "According to these corporate sponsored studies, we are assuming this untested food is safe." I read about ingredients that are banned in other countries across the globe. I read about these same ingredients require warning labels in California. How can something be considered toxic in England or California but be safe according to the FDA. I despise over-legislation and rules for the sake of rules; but something tells me that the FDA is not going away any time soon. It would be wonderful if big business was removed from the equation. Let them pay for the studies by putting money into a lump account that funds all studies for the FDA, this way it becomes a true double blind study.
The more I read and learn, the more I just want to live on a farm and grow my own food.
Hello everyone and Happy New Year. I am still here and still chugging along. I wish I had more time to write, but life intervenes. I am just writing to let you know that I am still here. I have had some ups and some downs over the past year. I learned that quinoa is the grain of death in November, but on the upside I have increased my running distance from 1/10 of a mile to 3 miles (5k) over the course of the year. As I have time, I will upload additional postings. I am hoping there will be more posts in 2014 than there were in 2013.
I have Crohn's Disease. I have been in remission since 2005, so this past month has been a bit of a hassle for me. I am used to having diarrhea for many days at a time. I expect diarrhea whenever I have a stress-flare or a flu-flare. So when I go to the doctor to figure why my Crohn's is acting up and the doctor tells me it isn't my Crohn's, I am both happy and apprehensive at the same time.
I am very happy that my Crohn's is not flaring. I still have it under control and can keep it under control -- mostly -- with my diet and lifestyle choices. I was quite worried that I would have to reassess the foods I eat to see what had changed into contraband. A big weight has been lifted knowing that I need not do this for my Crohn's.
I am quite apprehensive due to the fact that the doctor told me I was "very constipated." You read that right, "VERY constipated." Both my ascending and descending colon were overfilled and not moving. These two sections of the colon are not normally the same size, but in my X-rays they looked fairly even in size. The doctor went on to give me advise to deal with this condition in the future: 1. You should exercise. Just walking will help with this condition. 2. Be certain to eat more fiber. You need fiber in your diet. 3. Drink more water. You should stay away from soft-drinks, etc.
I can only guess that these three tidbits of advise work on everyone else that comes in (when they have never experienced constipation previously.) I had some news for her, though: 1. I jog 4-8 miles a week while also walking and biking on days I don't go jogging. I have a home gym that I use 4-5 times a week. 2. I eat fresh veggies and juice daily. I get fiber. I stay away from most grains and complex sugars. 3. I only drink water. I drink water to the point that I must pee at least once every one to two hours
The doctor looked at me not knowing what to say to my confessions. Seeing her unease, as I was not a normal patient, I proceeded to ask the doctor what other factors could influence or induce my body into such a state. I then started to ask my questions: 1. What sort of impact does caffeine have on the intestine? 2. How does stress contribute to constipation? 3. Is vertigo a precursor or sign?
The doctor told me that stress could cause the issue, but that stress could be a catalyst in just about any situation given the convergence of several necessary components. She then went on to state that while vertigo isn't a direct cause, it is a symptom of possible dehydration. I told her I had experienced slight vertigo the previous two days. I can only assume that the excessive heat at this time of year caused me additional fluid loss.
I then revisited my caffeine question. The doctor took a moment to weigh the question against potential answers and then told me that caffeine usually has one of two affects on people: it can cause drying up of the colon and it can cause an increase of liquid in the colon, both with varying degrees based on the persons body.
I must postulate at this point that there must be a connection between my caffeine abstinence and the recent onset of this new way my body is working. When I was drinking coffee and other caffeinated drinks on a daily basis, I never had any issues going. In fact, within 6 months of removing caffeine I noticed that loose stool became almost non-existent for me. And I thought this was a good thing.
I am left in the quandary of whether I want to worry about potential impaction or whether I want to return to dealing with allergies. I will see if I can deal without both.
My body has changed. Something is going on and I don't know what. I haven't been in the dark concerning my health and body for over a decade. I have been thinking that I have been dealing with stress-flares and flu-flares, but I am really beginning to doubt that. It feels as though I am stopped up. My belly is bulging and it feels like I am going to burst at the seams.
I have come across the term "antinutrient" quite a bit recently. I remember laughing the first time I saw this word because I really couldn't understand what it meant. As I have read more, I have understood more of the meaning and the application of "antinutrient." There are two concepts surrounding this term that are important as pertains to my Crohn's and I thought I would share.
Our bodies need vitamins and minerals in order to function properly. We eat foods in an attempt to get to these essential components into our system. What most people do not realize, myself included, is that foods we eat can actually remove nutrients from our body. If a particular food mist have iron and Vitamin C in order to be properly processed, then when you eat that food your body WILL have those nutrients to process the food. It will either get the nutrients from the rest of the meal you are eating, the first place your body looks, or it will go to the next available source, itself.
The human body tries to act like a nutrient bank so that we don't have to worry so much about balancing every minute iota of food we consume. Whenever there are excess nutrients, they are stored in different parts of the body for future usage and emergencies. What the body never factored in was that it would only ever receive foods that were lacking in a large number of nutrients needed for processing. The continual consuming of antinutrients has made many of our bodies nutritionally bankrupt.
How can we expect our bodies to work properly if we are only eating antinutrients? Foods that are processed, homogenized, and overly pasteurized become antinutrients. Commercially farmed produce and commercially raised protein are on the precipice. Artificial components are the worst.
I've been a fairly bad boy this past month. I cheated and ate things I haven't eaten in years. So many people have asked, "...but a little bit of this wouldn't hurt, would it?" recently that I felt compelled to actually test it out. I'd be lying if I said this was entirely altruistic. While I was apprehensive, I was more excited to break this fast than worried.
I did set some ground rules for myself so that I did not put myself in the hospital, I.e. at most, only one meal per day for cheating. I really wanted to see for myself just how much one cheat would affect my Crohn's and my overall health. I am not going to detail every poor decision I made. What I will say is that every small item I ate during an otherwise legal day usually had a noticeable effect on my body.
My biggest cheats were cupcakes and dinner at an Italian Restaurant. I haven't eaten cupcakes in years. I found this little cupcakery and tried one and then another and another. I gorged myself on more than six cupcakes before I stopped myself. I experienced such a decadent sugar rush from the sweets. Within the hour I was experiencing the after effects. As much as I loved the flavors of the cupcakes, I doubt I would make them a habit.
I don't eat at many Italian restaurants due to the preponderance of noodles and breading in most of them. I decided to wave all inhibitions away and had a traditional Italian-American meal on a Thursday night. I had chicken noodle soup, fried mozzarella, garlic bread, baked penne in a tomato-cheese sauce, and hazelnut cookies. Again, things that I haven't had in such a long time. It was amazing just how much I enjoyed the flavor. I didn't feel wonderful the next few days, but I figured that proved I should stay away in the long run. On the following Monday I was in such pain that I couldn't eat the entire day. It took two days for me to recover.
Two weeks later we returned to that Italian restaurant and I ate the same things. This time it was on a Friday. Lo and behold, the same thing happened with my health. I have never experienced a delayed secondary response like this before, but the fact that the same thing happened both times only proved in my mind that pasta, bread, processed cheeses, and sweets are anathema to me. This experience also showed me that there can be multi-tiered and delayed responses with the secondary responses being much worse than the primary.
All of my experiences during this past month only helped to solidify in my mind that diet truly is important to making certain that my life doesn't spin out of control. I can also answer the question, "...but will just a little bit affect me?" Without a doubt, that answer is, "Yes!"
I have been so busy the past month. I haven't had time for very much and I am craving a small break at this point. I haven't really had time to change or experiment with my diet. The last thing I want to do is cause a flare up during a particularly stressful time. I have been training a lot of people at work and 4 of them are starting to show potential, maybe I will have some time to write again soon.
I am now fully decaffeinated. I'd be lying if I said it was easy or a cake-walk to go cold turkey. I have been fighting through my lack of energy and the craving I have for coffee and tea. It doesn't help that I actually enjoy the flavor of black coffee and tea. According to several books, it takes at least three weeks for your body to expel all caffeine from your system and to reattenuate to a normal hormonal regimen.
At the four week mark, I can say that I am finally starting to feel my energy return. I am starting my workouts again and am surprised at how alert I am at the end of the day without any caffeine. In the mornings, I no longer have that shadow of sluggishness. The only time that I feel the day beating on me is around lunch time, and I still feel compelled to get some tea. I will let my body adjust to this new equilibrium, though.
I can see people scowling as I talk about my self-immolation. Why would I do such a thing? Why would I put myself through this hell when I have so many other health issue to attend to? It is because of my other issues that I am doing this. My breathing is better. My allergies don't feel as bad. And I don't like prednisone. Caffeine stimulates your body in a very similar way to prednisone and causes many of the same issues. That was my biggest motivator.
I won't go into nuance, but I do know that the differences in my body and attitude are already perceptible. I will continue on this path and build my energy reserves back to their previous heights.
Our food sustains our bodies. If our bodies cannot process that food, then we become malnourished, get sick and waste away. This series of thoughts is very prevalent in IBD. Everyone "knows" that in the past my Crohn's has kept me from absorbing nutrients thus causing a downward spiral into flare-ups and pain. I am at a point that I am questioning this paradigm. I am asking myself, "What if the entire reason I have Crohn's Disease is because of the fact that I have been chronically malnourished my entire life?"
In the past century, our foods have become processed more and more. Everything is overcooked, extruded, or stripped down to a singular defined purpose. Our original foods were synergistic containing many natural nutrients that worked together in our bodies well. When we destroy most of the nutritional merit of our food through processing, it means we must eat that much more just to get a base minimum in order to survive. Couple this with the added artificial vitamins and minerals that our bodies cannot process as well as their natural counterparts, and we have an issue.
I remember growing up and always having soda, sugar, and other boxed confections continually throughout a given day. Eating this way for so long, and being told by the governing bodies that it is okay, would have depleted so much of my bodies resources and capacity.
I am going to see what happens. My body is a bank for vitamins, minerals, and energy and I currently have little to no savings.
Entities that evolve are able to move forward while those that stay the same eventually die-out. There must always be some form of evolution in how we live our lives, otherwise we aren't really living our lives. I am always reading, always learning, always testing my boundaries. My evolution through time has very little room for absolutes. In reality, there are very few absolutes that stand the test of time. When I read Breaking the Vicious Cycle, the one thing that always disturbed me about Elaine's arguments was the finality of it all. It was all so perfect and absolute. I was already so close to Specific Carbohydrate perfection, that I decided to use the diet as a stepping stone to allow me to do more research without having to worry about whether or not I was going to set-off a Crohn's flare.
Over a year later, I am still doing rather well with my health. The diet I have followed has been a beginners step allowing me to do much research into many different methods of food preparation and into myriad different types of food. I am at the point where I think I need to put theory into practice to see what my body tells me. I am hoping that my research into probiotics, fermentation, phytic acid, organic foods, enzymes, caffeine, etc. will help me take a step beyond. I am not afraid of failure, though. The worst that could happen is that I go back to a strict Specific Carbohydrate Diet.
Don't misunderstand my intent, either. I am not going to be going back to sugars, potatoes, and breads. Those foods are addictive drugs on their own. I decided that my full decaffeination would be that transition point. As of today, I am fully free of caffeine. I haven't had anything with caffeine for three weeks. Let's see where this goes.
It's been so long since I have been in the hospital, that I forgot just how little a patient gets. One of the biggest contributors to any recovery is ample rest and especially sleep. You would think that doctors and nurses would know this and so let people sleep. Instead, patients are poked and prodded throughout the night as a means to supplement the very uncomfortable bed and the noisy, belligerent roommate that wants attention from everyone. I wasn't even the one spending the full night in the hospital this time, and I was drained.
I would hope that at some point, the establishment would realize that they would do better to let us sleep through the night when we are interred so that we might get better faster. Then again, if we recuperated at a faster speed, the hospitals wouldn't be able to charge our insurance like they do.
I love Pedialyte and I extol the benefits of drinking it to just about anyone around me. It is a very delicate electrolyte solution that also replaces zinc lost when we have diarrhea. It is made for babies, so it is still a little harsh on our sensitive systems. I always have two bottles in my home at any given time for an emergency situation. If I am fasting, I will use Pedialyte to help maintain balance. If I find that I have eaten something inappropriate and need to let it pass through my system, I can always rely on Pedialyte to help keep me going when I cannot eat anything else. I am fan.
Last week, I found myself purchasing Pedialyte again since I had caught a bug and was having extensive diarrhea. In the past I have always purchased the original, clear version of the drink; but there was another that was partaking and so he asked that I get one of the flavored bottles. Having only ever drank the clear I had only ever checked the label on the clear. As I was purchasing the fruit flavored variety, I decided to check out the label. I was amazed to find that it had sucralose in it. On a following trip to get more Pedialyte I checked all of the flavored varieties and found that they all have sucralose. I was amazed that such a noxious anti-sugar was incorporated into something that is purportedly made for babies.
In case you have missed my feelings concerning fake sugars: I hate them. They cause so many issues with my system that I stay away from them no matter what. Why would anyone want to use a fake sugar that was originally intended to be an insecticide? Regardless, I still find the clear Pedialyte to be a great help in staving off dehydration and keeping me on the side of the living.
Dehydration is a looming issue for anyone with Crohn's Disease and is a very dangerous thing. This past week, I was able to see first hand what can happen when someone is dehydrated. Dehydration follows a very linear path as someone loses the water and electrolytes in their body to different bodily functions while neglecting to replenish them at a commensurate rate. That means that you not only have to replenish the water expelled, but the sodium and potassium salts that are lost during urination, sweating, and breathing. This is very important to acknowledge for anyone with any form of IBD due to the excessive amounts of diarrhea we experience.
We lose a lot of water. We lose a lot of salts. We lose a lot minerals, especially zinc, when we have diarrhea. If you are just drinking water rather than electrolyte solutions, that fatigue you are experiencing is the first sign of dehydration. If nothing is done to remedy the dehydration, then you will eventually be unable to get out of bed and lose your mental faculties. I saw all of this occur first-hand. If you find that your mouth is dry, it is really hot out, or that you have even mild diarrhea, make certain that you are drinking a pediatric electrolyte solution. Don't drink the flavored varieties, just the clear ones.
I have been in the hospital quite a bit the past few days. I have my computers with me, my iPad and many different phones. I don't think I have ever been patient support in such a capacity before. I already know, and am used to, the general public's lack of understanding of Crohn's Disease especially when it comes to dietary requirements. As this is my first time in a hospital where I am semi-conscious and able to remember my surroundings, I find it very disheartening to listen to the dietitians as they speak to other patients. As I covertly listened to what was being said between "professional" and patient, I think I finally understand the general mantra that most dietitians follow: 1. The patient must eat the dictated meal in order to live. 2. Give the patient whatever drugs is necessary to facilitate number one.
A great example of this was the diabetic that was rushed to the emergency room alongside us and then would up in the same room with us. I know what diabetes is, generally speaking. I know that when someone has diabetes that they must change their diet every bit as much as someone with Crohn's Disease. In fact, most people with diabetes, in my lay opinion, would benefit greatly from following the Specific Carb Diet. Instead, what I saw was the dietitian feeding the patient carbohydrates and sugars in astonishingly large amounts and then administering insulin in order to deal with all of the inappropriate food. Let me put this another way, this is like giving someone a known poison that tastes good because the antidote is handy in large quantities at bedside. What kind of stupidity is this?
It is no wonder that people with any form of IBD have so many issues trying to find some semblance of a real life while trying to find a diet that doesn't cause some form of pain. There is little to no attempt in the mainstream dietary establishment to cater to or construct a dietary plan for patients. The only person that even seemed to realize she shouldn't give the patient sugar was the CNA. Wow...
It's not what you think. I have never been on this side of the equation before. The tremulous shaking and worry that I feel right now is ridiculous. The hospital won't let me in to see him yet, so I am trying to pass some time while calming myself down.
This past week has been a tad difficult for me. Not only did I sprain my left foot, but I also started a caffeine detox regimen to reduce my caffeine intake to 100mg/day. I have finished my first week of the detox, but it takes three to four weeks for anyone addicted to coffee to fully acclimate and for the hormonal imbalance we impose on our bodies to rebalance. Anyone that has gone through "die-off" knows a little about how this feels. Regardless of the situation I am in, the lethargy I am fighting, and the headaches I am feeling I find that after this first week I am starting to feel different. Knowing a definitive timeline for my body to rebalance has truly helped me keep on track. I have had a cup of coffee in front of me every morning just so that I knew I had the willpower to deny the addiction rather than just staying away from coffee altogether. I still allow myself tea (hot and iced) throughout the day, but the amount of caffeine in the tea does not go over my goal threshold.
I may be absent from much of the world while my mind clears. Today is the first day in a week that my mind has been clear and I have not had a headache.
I don't know exactly what I did to my left foot, but it really hurts like hell. I cannot put much weight on it at all. The pain began this past Friday and grew through Saturday. I did a bunch of research and found that the area that was hurt was my midfoot and that it is actually very common for runners and joggers to sprain or break a bone in this part of the foot. After several self exams, I came to the conclusion that nothing was broken. If my midfoot was broken, pressure would have caused pain and it did not. I can only assume that my long job on Wednesday of last week came back to haunt me on Friday. Regardless, I have been inactive while I have been letting my foot rest. Today I was actually able to put some pressure on it in the afternoon without my foot feeling like it was going to fall off.