This post is probably going to come as a surprise after my earlier comments about alternative medicine. My conclusions over the last couple o weeks came as a surprise to me too, and I took a long time to think about how to write this post in a way that does not offense anyone.
Some of you probably read my vents against doctors. I have since read a lot and understood a lot and it is amazing that there actually are good doctors out there considering what we're putting them through.
This post is about my thoughts on Evidence Based Medicine and managing your health especially with a chronic disease. Last year I complained about having ulcerative colitis. I kept on with flares every couple of weeks ever since. We added more conservative medicine and then tried Prednisone (which worked dramatically well, but would not cause remission unless I stayed on it... long term use of steroids is not my ideal healthcare plan, so I weaned off as soon as possible), tried 6MP, a chemo drug that is sometimes useful for ulcerative colitis as well. My doctor recently suggested Humira - an auto-injectable drug for rheumatoid arthritis and Chrohn's.
Trying more and more powerful drugs gave me pause. Instead I decided to stop and think. My thoughts were that a colon-sparing diet, while not advised by my doctors or any doctors on the Internet should be a better solution. If you cut yourself, you don't just go out and play in the dirt, you add a band aid or a glove, you do something to protect the cut while it's healing. I understand that the flares are not caused by food, but it makes sense to spare the colon while it's flaring and eating milder foods.
I read that Aloe is good and I went with it. I found a place that sells this supplement. The research for it is done by an MD, and I found good revisions about it. And I went against my own advice and got this quite expensive supplement. It came with a chart for my symptoms that I am supposed to fill out and fax each 30 days. It also came with a suggestion of a diet. It still has starches and vegetables and protein, it's just avoiding high-fiber, dairy and gas-causing foods.
For three weeks I finally feel better than ever before. The symptoms are still there, healing little by little, but I can live and feel comfortable at work and not hate my life. And I could have done this an year ago if my doctors didn't discourage me from trying anything... because it doesn't work. I was going to try stronger and stronger medicine without first trying to slightly change my lifestyle.
I don't know if it's the Aloe. I actually think the diet is the main benefit. I think charting is important. And maybe the Aloe is doing its part as well, maybe it's just placebo. I don't really care. I feel great and I wouldn't stop either one.
My doctors went with Evidence Based Medicine. Now, I am not the one to argue with Evidence Based Medicine. I think we absolutely need to go with it. But I think it's misunderstood and misapplied. I think that a lot of doctors don't understand when and how it applies and have no idea how to read the studies. It is so difficult to study all aspects of a human life or even of one disease. You can just make guesses and pick up a few aspects to study. In addition, with the drug companies having the most money, most research will of course go with the drug research - less controversial too because you can make double blind studies. So you have these specific studies that you extend. In my case I think that the studies are about food not causing the flares, but what I needed was something to help me get into remission, and food restrictions might help with that.
On the other hand each person is different and the studies are built to be as general as possible. So maybe diet didn't help 75% of the people, but what if I am within the 25% that it actually helps. (a disclaimer here: I did not actually read any studies, I do not think I am able to interpret them correctly, I am just trying to see where I went the wrong direction and learn something)
So, my conclusion is that with a chronic disease you need to know your own body and know and understand what is good for you. Doctors are essential of course and know a lot about everybody, but only you know yourself. The first step when diagnosed is to log each symptom and start tracking down what's going on. Whether it's anxiety or hypertension in pregnancy or colitis, knowing what's going on and having data is invaluable. Log it down, chart it, learn trends and patterns. And here is where alternative medicine is different and better I think than traditional medicine: it encourages lifestyle changes, noticing what's going on and mild solutions before jumping to the big guns. Of course I don't talk about cancer here or any other acute disease and also not about the potent herbs with side-effects.
In my life, in the name of evidence based medicine, I was told that there's no need to stop going to work when I was pregnant and seriously ill with preeclampsia (yes, there is a study that proved that bedrest is not better than no bedrest for preeclampsia), but my baby died a week later and I had no clue about it. I would think that telling us: you and your baby are very sick; if you need to work, there is no evidence that this will hurt your baby, but taking some time off and resting as much as possible would probably be better (of course someone could argue that worrying to death is not that good either).
I was told there is no need to chart my blood pressure on a chronic hypertension pregnancy, but when things started going down I saw the trend and told my doctors about it. The climbing blood pressure could have been easily dismissed in weekly office readings.
I was told there is no need to diet or log what I'm eating because it doesn't matter... and here we are again... it actually matters. So go to your doctors, listen to them, but know yourself and manage your own health. And if you are sick with a rare or terrible prognosis disease either learn to read those studies or find someone that can read them...correctly!!! probably not your PCP, unless you are lucky.
