“All disease begins in the gut.” – Hippocrates

Wednesday, April 7, 2010

Tracking your Symptoms

As I alluded to in 'The diet part 1', to have any hope of success, and more importantly, to keep track of your progress (progress is morale, remember), you will need to track your symptoms and track what you eat. We'll deal with tracking symptoms first.

Note: You can use Fitday to journal your symptom information, but I wanted data I could play with, so I made up my own system.

Why track symptoms?
The answer to this may seem obvious, but in case it's not, let's outline the goals.

1. We track symptoms so that we may know when a treatment is working and when it's not.
I used my tracking system to prove, statistically that none of the treatments my Dr. prescribed were working. Then when I started the SCD, I showed him the data--the SCD had begun to turn my symptoms in just under 2 weeks, where Immuran, Prednisone, Colazol, Asacol could not. He was impressed. And I believe this detailed tracking of my symtoms was integral in gaining his support for my quitting medicine in favor of the SCD.

2. We track symptoms so that we can see progress.
Seeing progress, either forward or backward progress, is the key to adjusting the diet early on. For example, I learned that split peas really helped, where white beans did the opposite. The effects are noticeable, but without symptom (and diet) tracking, I never would have been able to ferret out what the problem was.

3. We track symptoms so that we can better inform our doctor of how we're doing.
Each time I came in to the Dr. he would ask me, "So, how are you doing?" I didn't know, really. I knew I was bleeding, had diarrhea about 10 times a day (sometimes more sometimes less), but my answer really depended on how I felt THAT DAY. Not a good way to judge the progress of a condition like Colitis. Once I started tracking, I could answer my Dr. with more specifics. I showed him graphs of the number of times I went to the bathroom each day. I overlaid those data with number of bloody stools, with timing of stools, with meds taken, with other whole body symptoms like tiredness, fever, shaking, itching, etc. Sure, it's geeky, but it works. Below are some examples of Excel sheets I used, and the Data Base I used.

In tracking your symptoms there are oodles of things you can track, but here are the essentials:

  1. Your bowel movement (BM) frequency. How often do you go a day?
  2. Your BM quality. Is it formed? Loose? Watery? Explosive?
  3. Is there visible blood? How much? A teaspoon, or does it fill the toilet? Is it bright, or dark?
  4. Your weight and energy levels.
  5. Other symptoms like cramping, skin irritation (itching, sores), joint pain, headaches, flu symptoms--Immune diseases like ours produce symptoms elsewhere in our body that can teach us. So, don't ignore things like itchy skin (which can be a sign of increased disease activity) just because your belly feels alright. When I first started on probiotics, I broke out in hives all over my body. I did some reading, and it turns out that I started with too high a dose, too fast. I backed off, the hives went away, and I increased the probiotic dose more slowly. My skin still itched some along the way, but I've been at twice the minimum therapeutic dose now (7-10 billion CFU) for over 2 months, without irritation.

Crohn's Colitis Foundation of America (CCFA) has a symptoms tracker you can print and use: www.ccfacommunity.org/.../CCFA_FlareSymtomsTracker.pdf

Personally, I wish it were in a PDF Form, so I could type it, but you can't get everything at once, right?

Below are examples of the way I tracked my symptoms and presented them to my Dr.

This is an example of a chart that I made for my doctor. The chart graphs two 'indicator' symptoms, stool quality and stool frequency, on a Likert scale. (If this is too geeky for you, that's okay. Here's the bottom line: Be able to demonstrate to your doctor and yourself how you're doing. Period.) The black line graphs the quality of my stool, while the gray data graphs the number of times I went each day. The overlay implies a correlation between the two (which we would expect), and the regression lines show a pretty good improvement trend. These are the data I showed my Doctor to prove to him that the diet, in the absence of medicine, was inducing 'remission'. I had already shown him graphs like these without the diet, while on a suite of medicines. Those data showed no improvement. I used this one to prove to him that I wasn't taking a huge risk, that I had thought through what I was doing, and it helped me evangelize a bit and teach him about the diet. If anyone wants to start tracking at this level, I'm happy to email my sheets to you.

OK, this is a bad screenshot, but the point is that I made a simple Access Database with which I could quickly (in less than 5 min/day) collect all the data I needed. Play with it, and see what you come up with; something that works for you.

Get tracking today! It's worth it.

Onward to health.

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