Sep 9, 2008

Thoughts on managing health with a chronic condition

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.


Anonymous said...

That was a very well written entry. I could not agree with you more. I happened upon it while searching for anything about not wanting to start my 2 year old daughter on a 6MP for ulcerative colitis.

I had a lot of anger over the dismissal of my questions to the doctors about her diet and her disease. We removed dairy right away. But even though her upper and lower scopes were perfect in September and biopsies were perfect...this was 8 months into treatment with a 5ASA...she still flared as soon as she came off of the med. Now we can't get her back in remission, even on the dreadful steroid. And the same diet.

I have come to understand what the doctors meant about no restrictions in diet. It wasn't meant to be dismissive. They meant no particular food will heal a flare and this time, no food caused the flare. But I also agree and have kept her on an "easy" diet without limiting a growing child. Her colon needs a break from any stress while it tries to heal.
(I have kept a chart of everything she ingested/her BM in detail/her sleep patterns/temperament and caloric intake since she was 1 but more stringent since her diagnosis)

I think every person needs to understand that while doctors have experience and information that we may not two bodies are ever the same. Much of medical practice is based on trial and error. It's important that we take control of our health care! Question everything and research as much as you can. Don't be afraid to say no, get a second opinion or try something alternative within reason and with caution. Don't ever rely solely on a medical professional to tell you how you feel or what is best based on the protocol that they follow that they may apply for every body, shape, size and age.

I know there are doctors who do NOT do this. I am not trying to generalize or offend. There are excellent physicians who are very cautious, conservative, informed etc. And that may be most physicians. I just want to point out that this blog is right on the point that you need to listen and take into consideration the advice of your physician and by all means COSULT a physician...but remember that you know you best and you need to be aware of the patterns and internal/external factors that effect you...and you need to be informed. There is SO much information available these days. Find it. Know what you doctor is reading.

We are not willing to put out daughter on stronger and stronger medications when this is a chronic disease and she's not even 3, this is only her second time having a problem! I want her to get well but cannot put someone who has not been exposed to most COMMON viruses and illnesses on a med that lowers her resistance. Yet this is what the doctor feels she needs. And here we are, parents who are her only advocates and have to make the right decision to keep her well. I imagine anyone with chronic illness experiences this dillema. It's a hefty weight to bear. Wanting her to be well, wanting to try anything to get her that way but not wanting to put her at worse risk.

I've concluded there is no answer. Just that we can continue to chart, look for patterns and exhaust all conservative measures in hope that we can get the colitis under control in a reasonable amount of time. She will be 3 on Nov 30th.

Anonymous said...

Just found your blog, not sure how.

This post about evidence-based medicine caught my eye. What I do, is pay attention to my OWN evidence, and phooey on anyone else's!

I have alleviated truly monstrous symptoms by finding out what foods I react badly to; I'm not calling them allergies because allergy is specifically defined as something in your blood, but you can be reacting badly without it being an allergy.

I charted what I ate and how I felt for a long time before I found significant patterns, and then I got a lot better at recognizing patterns. For anyone who has "strange emotional or physical symptoms," I recommend one thing in particular: make a list of your favorite foods, the ones you eat every day or the ones you particularly like, and design a diet that eliminates ALL of them for at least two weeks. See how you feel; then put them ALL back and see how you feel. That will be your evidence. After that you can test one food at a time, in the same way.

I also highly, highly recommend that anyone with a bowel problem seek out the book named Guts and Glory by Jordan Rubin. This is the real stuff, one man's way away from death to exuberant life.

I can't follow that diet because unfortunately one of my food "reactions" is to animal protein, so I am vegan. No one thing works for everybody; but the concept of the *proper* probiotics is of paramount importance and ignored completely by the AMA.

Well, cheers, hope this helps someone.