Tuesday, April 26, 2011
I begin to see how topics and videos can go viral so quickly on the internet. The number of links that radiate out from just one web page can eventually lead you or I in hundreds upon thousands of different paths. Every now and again, I do find that I come across some relevant information. I have seen several Twitter posts about SCD (Specific Carbohydrate Diet) and the book Breaking the Vicious Cycle. I have also seen several bloggers mention both the SCD as well as the book. I see so many people that talk about how great the diet is and about the remission they experience when they adhere to it.
I think I would like to read this book just to see if it can help me. I have looked at some of the legal and illegal items on a partial dietary list and saw that I agree with it from my own trial and error. Would be great to be able to incorporate something new.
I continue to do research on Crohn's Disease. It is just something that I do; I believe that at some point there will be a break-through that doesn't appear too good to be true. In lieu of that panacea, though, I have only found that there are apparently some more surprises to look forward.
People with Crohn's Disease and Ulcerative Colitis -- due to the nature of the malady -- are more prone to the following issues: eczema, psoriasis, atopic dermatitis, asthma, arthritis, hay fever, rhinitis, diabetes, and multiple sclerosis. All of these are auto-immune disorders that are caused by the same out of control elements in our body with the past two items having the least case study support. I don't look at this knowledge as a bad thing. Knowing ahead of time what may be in store for me allows me to plan and live my life accordingly while also attempting holistic preventative measures.
Monday, April 25, 2011
Oh the fats in food, they are so much fun. Too little fat in your diet and you won't be able to absorb certain nutrients that are fat-soluble. Too much fat in your diet and you wind up with steatorrhoea. In the case of someone with Crohn's disease, your body won't want to absorb fat most of the time and you will have steatorrhoea a lot of the time. At first, I thought it was a great thing that my body very rarely ever absorbed fat. I would eat things then that make me cringe now. My body wouldn't get fat and that was all I was worried about. As I lived longer though and tested myself for foods that hurt, I came across some articles that talked about how some people get bound up with pain by eating too much fat in their diet. These were normal people written about in the article and the revelation gave me pause.
It was at this point that I decided to cut out as much fat as I possibly could from my diet. Fats were bad and I was hell-bent on proving it. Going from one extreme to another, it was amazing at how quickly the "fat pains" went away. Yes, they were "fat pains." As mentioned in The Pain, different triggers illicit different pains. It was during this time of experimentation with fat that I learned that there were specific, dull, bloating, lower abdominal pains that I could link directly to eating too much fat -- whether good or bad. I was so happy that I was learning the triggers for the different pains in my life and removing them. The more difficult part, though, was finding out how to bring fats and oils back into my diet before I experienced some sort of vitamin deficiency. No matter how much someone may want to get rid of all fat in their diet, it is impossible. Your brain needs fat. Your body needs fat to absorb things like Vitamin E.
Many personal trials later, I found oils and fats that were not only good for me but tasted good as well. The number of fats and oils I will never touch again are too numerous to name. I have found that I have the least ill-effect with virgin oils; my favorite being first, cold-pressed, extra-virgin olive oil. I haven't found an upper limit to how much I can consume before pain starts. Its flavor is so good, that a little usually goes a long way. Other natural oils also are good, but none seem to do as well by me as the olive oil.
I do cheat every now and then with some real, unsalted, artisan butter. The amount I eat is so small, but the flavor is so rich that it is all worth it and pain free.
Sunday, April 24, 2011
I am continually reading new articles on Crohn's Disease followed up with research on secondary items to boost my understanding of the main article. I find it interesting how validation and precedent are many times manipulated by an author in order to boost their opinion or point of view. Don't get me wrong, I do the same thing. A well written article will use validation and precedent as a tool to augment the point of view and the perceived reliability of the author. What brought this thought process on are the two articles below:
While these are both very good and very interesting articles with relevance toward those with Crohn's and Colitis, the author's have disguised their opinions very deftly with citations and self-referencing titles. Many people would argue that these people are, in many cases, experts in their field and I would agree with the sentiment. The issue that comes about over time is that people, both expert and layman, lose sight of the subjectivity and begin to accept these arguments as wholly objective.
This conditioning of layman and expert to see opinion as something that is objective has a deleterious effect on patients as people neglect the fact that there might be other information in the world that is either complimentary, supplementary, or contradictory to the original argument. While an expert may be free thinking, they are so conditioned to adhere to an elder argument (precedent), that there can be many times where they are just as blind as their lay counterparts.
As you can probably see, I have a love-hate relationship with precedent and validation. I love them as means to learn and move forward. I hate that they are made to appear black and white; there is no such thing in our world. I always keep in mind, that a precedent was at some point a new thought that broke previous conventions. At some point someone had to have free thought and synthesize something new. Isn't that what we should be doing?
Friday, April 22, 2011
In the past couple days I have seen some questions concerning non-stop hunger come to me from different people; I think this was prompted by my blog about how I don't feel hunger like others. I got to thinking and it is amazing how a couple of questions can jog someones memory and then lead to one of those "AHA!" moments. There have been SEVERAL times when I have experienced an unending or insatiable hunger.
After having written Hunger Pains, there are those that would ask how it is I can say I have felt an unending hunger if I usually never feel hungry or full. I would say to look back at Prednisone. I didn't go into detail about that long-standing prescription as there were just too many ill side-effects. It doesn't help that it is touted as a cure-all or used as an umbrella for so many different issues in the medical world. Nor does it help that most of the people that prescribe this drug don't really know how it will affect their patient; this is why you will only ever see me write about the ill side-effects of prednisone. I am getting off topic.
One of the side-effects I have experienced while taking prednisone is an unending hunger. It doesn't start right away and it did take me several years to figure out what was going on. It is worth noting that there are both short-term and long-term doses of prednisone that are used, depending on the severity of the flare-up, with quick and long taper periods. I have very rarely ever experienced a feeling of insatiable hunger when on a short-term regimen of prednisone; but whenever I have been on long-term doses I have always gotten to the point that I just never felt full.
Now what does it mean to never feel full? It means that I was eating over 8,000 calories a day and still not feeling full -- a healthy diet is between 1,500 - 2,000 calories per day for someone that is not too active. I was eating to the point that if I ate any further I would vomit because of how full my body was, and yet I still did not feel full. It took me a while to work up enough will-power to actually stop eating with the amount of hunger I felt. The worst part wasn't the unending hunger. No, the worst part of this aspect of the prednisone is that I was lulled into a false sense of security for some time. I felt that I could eat anything and it would not affect me due to the prednisone; but it was only a cover.
While I shan't go in depth on what you should and shouldn't eat while on prednisone, I will say that if you eat contraband while on prednisone in order to try and deal with the hunger you will use up all of your daily funds rather quickly. Would you run your AC while the windows and doors are open? If the AC was running so well that it got cold, would you turn on the heat to make it warmer or turn down the AC? I now watch what I eat while on prednisone and am mindful of stopping when I get to a certain point. I have memorized the portions that work for me when I feel no hunger and apply those same portions during those times I take prednisone. I haven't found a way to get rid of the endless hunger other than stopping the prescription.
Thursday, April 21, 2011
Almost a year ago, a friend of mine made a comment about being "out of spoons." My mind immediately went to the cartoon, "The Tick," and his battle cry, "SPOON!" I made a comment based upon my initial interpretation. My friend seemed perplexed and that started a fairly long conversation about what her statement meant. After talking to her, I looked up "The Spoon Theory" online and read it through. I can't tell you how many times I have tried to explain how it feels to have Crohn's Disease. The issue always came in the translation -- feelings are just too subjective.
What made this theory so ingenious was that it took the explanation out of the realm of the mind and made it tangible. I could tell a friend or an acquaintance that the pain I feel is like a 50 ton wrecking ball with spikes inside my gut, but unless that person experienced the same pain they would just never understand. Now all I have to do is use this story as a basis for my own explanation.
I tend to use money, interest, and late fees (calculated by the minute) when I try to explain about myself now -- a person's eyes get very big when I start talking about compound interest. It is amazing how many people assume pain and diseases are linear in their effects. I wish my experiences were linear, but the pain and issues are always exponential and compound. I would say that on a good day I have about a dollar's worth of pennies. Every task has a cost. I can choose to borrow against that cost and pay later. The issue comes with the compound interest and the late fees. I have to make that choice to spend the penny now, pay two cents in a couple of minutes, pay fifteen cents in ten minutes, etc.
Yeah...definitely a good read for someone that needs help in trying to explain their situation.
I really hate insurance companies. Why do I have to prove the same thing EVERY month? My life is difficult as it is without the additional crap that is heaped on me by them; but I am getting ahead of myself.
Several years ago, my liver almost failed and the cause was one of my main medications. Apparently this medication creates a byproduct that builds-up in and can damage the liver if created in high enough quantities. This is usually only a problem for people that have a resistance to the drug and have to take very high quantities of it in order to get the desired anti-inflammatory results. I am NOT one of these people. In fact, my body is VERY receptive to this medication; so receptive that I only have to take the minimum dosage to get the maximum affect. This astonished not only me, but my doctor. With my life and the way things go for me, I just took this as one of the small miracles that I will be given in my lifetime.
Well, mix me and a small miracle for any amount of time and there is bound to be a disaster. That time came when I started to feel sick and appear jaundiced (a lot of yellow in my skin). My doctor was stumped. Several blood tests showed that my liver enzymes were out of range to a ridiculous level and that my liver was shutting down. Queue the tests to figure out what is going wrong. After trying numerous tests, me removing MANY things from my diet and getting a 2ft needle stuck in my side by the Joker (another story), and my specialist doing some research; I was told that there was one possibility that might fix the problem. My doctor told me that the one medication that was working with me so well might be the cause of my issues due to possible by-products. A blood test later and this was confirmed. Apparently I am one of those very few people that creates large amounts of a particular by-product while taking this medicine. It was this by-product that was causing my liver so many issues.
Lucky me, I not only show that I am an oddity among oddities again; but I also get to take another medicine. I give my sad face to the doctor; take the new prescription directly to the closest pharmacy; and turn the script in so that I can get rid of the liver failure and yellowing skin. Within 30 seconds of giving the pharmacist the new script I was told that I couldn't take the medicine because of an interaction with one of my current medicines. So I explained the situation to him like my doctor had explained it to me. The new medication is technically for gout. It isn't supposed to be used with my medication (the one causing liver issues) because the gout medication binds with a by-product of that medication (the one causing my liver issues) and becomes useless against gout. That is fine, though, since I don't have gout! In fact, I WANT that binding to occur so that I don't need to have a liver transplant! The pharmacist looks at me with that "lights are on, but nobody's home" look and says he has to call the doctor.
Anyways, this was my foreshadowing of things to come. Thanks to people that can't think outside the box, I must have the pharmacist manually enter in this prescription EVERY month, get turned down by the insurance because of the interaction, have the pharmacist call my doctor, then have the doctor fill out the SAME form he/she filled out the month before JUST so I can get one of my prescriptions.
Wednesday, April 20, 2011
On Sunday, I finally got to bed at 1am. I was then woke up at 530am on Monday morning. By 2pm on Monday, I was feeling the changes in my belly. I could tell that the lack of sleep was having an ill effect on me. I could feel ripples of subtle pain as they moved through my mid-section. It is amazing how nuanced and idiosyncratic pain feels to me now. In the beginning, it all just felt like pain. Now, the type of pain tells me what I have to do to move forward and to keep from getting sucked in to that whirlpool leading to a full-blown flair-up.
I drank lots of water, stayed away from edible contraband, and got through the day. I think I finally passed out at some point between 10pm and 11pm on Monday. I woke-up 12 hours later feeling a hell of a lot better. Even feeling better, I was not back in full form. I am always amazed at the quick descent into, and the very slow climb out, of this whirlpool.
Wednesday, April 13, 2011
I was talking to my partner about Godiva chocolates today. He was telling me how, as much as he loves it, he doesn't want to eat it unless he is a little hungry. That was why he didn't want any when we were in the mall the other day -- he wasn't hungry at all. My first comment to that was, "I don't have that problem." As I got to thinking about it more, I realized that I haven't really felt hunger like most people do for over 16 years. I remember what it used to feel like when I was growing up. I would get a twinge of hunger that would grow the longer I ignored it. When mealtime came, many times I could recall only the hunger leading up to it. For some reason, after my first hospital visit, feeling hunger hasn't been the same for me. For a little over ten years, I never felt hunger -- at all. I was a 6ft tall man that weighed in at about 100 lbs. If I didn't remember to eat, then I just didn't remember. I actually had make a conscious effort to eat for the longest time. In many cases I would care around bottles of Ensure just to make certain I was getting the nutrition I needed.
The converse of never feeling hungry was that I also never felt full. I could eat and eat and I wouldn't know when to stop for the longest time. Most people rely on that feeling of being sated to stop eating. I was used to getting that feeling for so long that when it was gone I would eat to the point where I would vomit. I just ate too much. I eventually learned to keep better track of the portions to make certain that I stopped myself before getting to the point of rebuke. At some point, I did start to get back some semblance of hunger pains and feeling of being sated. It is a bit odd for me now, as I am having to relearn a new set of feelings and urges. Where as they were gradual in the beginning and non-existent in the middle, they are now more akin to an ON and OFF switch. One moment I will be fine, and then the following moment I will be excruciatingly famished. I can be eating and enjoying my meal and then, like a light switch turning off, I am stuffed to the brim.
I have always wondered if others with Crohn's Disease have experienced anything similar. Have you?
Tuesday, April 12, 2011
I am so tired. I feel like I could sleep for 24 hours or more. I wish I could and I know I would sleep that long given the time. I used to drink 3-4 cups of coffee a day, but I haven't had the time to recuperate from all of that coffee and my sleep deficit is just too great. Currently, I can't drink more than one coffee a day or I will spiral down. If I don't get some large amounts of sleep soon, I won't be able to have even a cup of coffee.
Sunday, April 10, 2011
Exercise is a really tricky thing for me. In the long run, I know that keeping up an exercise regimen will only benefit me. The issue is with the here and now. As with everything else in my life, there is a precarious balance that I must strike between an active and a sedentary life. It is very easy for me to overexert myself; and the overexertion has nothing to do with how sore my muscles with be the next day. For some reason, too much activity causes inflammation to set in. This means that I have to stop long before I ever get tired or sore. The effects are more pervasive with cardiovascular exercise as compared with any form of weight training -- not a good thing for my heart.
Since my major surgery back in 2001, I have been studying my body's reaction to just about everything I do. In that ten-year span, I have also let myself gain some weight. While I weighed about 100lbs in 2001, I now weight about 195lbs in 2011. I had no issues letting the weight add on, I just looked far too sickly back then -- and it's nice to have a "battery" to fall back on when a flare-up occurs and keeps my body from absorbing anything I put into it. I think that I am at that point where I can start exercising in a more routine manner. I am slowly adding sit-ups, push-ups, and pull-ups into the exercise that I perform. I am taking the stairs when they are available and walking a lot more, in general. I am hoping that layering on additional items over a long period will help me overcome the propensity for a flare-up as has happened in the past.
Thursday, April 7, 2011
It is so difficult to find food that is not laden with artificial or refined elements. I don't think people realize just how much it adversely affects their body. I know how it affects my body. For some reason, it takes MUCH less of a bad thing to cause me issues. Whether it be refined sugars or flours (all white), artificial sweeteners (splenda, aspartame, saccharin, etc), or artificial fats (margarine, olestra, etc.), it doesn't take a lot and it all causes me issues. What I find amazing, is that these tortuous elements are put into products and then marketed as Diet or Healthy -- usually Diet. I am happy that the labeling has made my life easier since I will spend less money by NOT purchasing these items and not have to worry about accidentally purchasing any of them. In the beginning, it was quite easy to stay away from all of that crap. Unfortunately, more of these items are seeping into everyday groceries and pre-packaged items. Whereas before, I worried about new items and the slight possibility of something unknown getting into my food, the threat wasn't as great due to the fact that I would be getting low exposure.
I really don't care for the super oily taste of artificial fats. I really dislike the metallic taste of the artificial sugars. The pain that they all cause just gives me pause. I wish that I could be a health nut by choice rather than out of necessity.
Tuesday, April 5, 2011
It is amazing how sleep influences my life. When it comes to my health, it is as close to a panacea as I have found. If I have eaten something new that causes a flare-up to start, I can usually crawl into bed and sleep off the ill effects so long as I didn't over do it. I rather like the fact that I can just use my bed as a medication, of sorts. As with most things in my life, though, sleep is also a very big indicator of where I am, in terms of health. Wanting more sleep is usually a very good indicator that my body is not doing too well. There have been times in the past where my body has been so worn down that I have slept for over 24 hours without waking. At some point in the past, I tried to just push myself through the sleep-craving. Inevitably, I would get worse to the point where only medication would help the situation. I now sleep when my body tells me I need to sleep.
Sunday, April 3, 2011
It has now been over a week since my last drink. I had been drinking at least one drink every night for about two weeks. It was at this point that I realized my body diverges from anyone else's body further than what I expected -- I cannot drink continuously over several days.
I have never been a big drinker and it was rare for me to have any bit of alcohol more than once a month. March was a especially trying month for me and I found myself craving certain flavors more often than normal. The toll taken on my body is still not paid in full. I still feel the need to sleep for several days without waking up. I won't be drinking that much ever again.