SCD and the doctors

Life gets more and more interesting as we get older it seems. Two years ago and I would not have been able to tell you what ulcerative colitis or pancreatitis were, but I have now become somewhat of an expert in them. I can tell you standard courses of treatment, criteria for diagnosis, and progress of the conditions. I can also tell you some things you probably don't want to hear, even the doctors don't particularly want to listen.

One of the lessons I learned over the last few months is that the nurses who you meet can be much more open-minded than doctors. Take, for instance, the case for dietary treatment of UC. There is a diet that has existed since the 1950's called the "Specific Carbohydrate Diet" (SCD for short) which is used to treat not only UC, but Crohn's, Celiac and even some forms of autism. The diet is gluten-free, lactose-free and disaccharide-free. If you talk to your doctor about it you will be told the same thing I was told. "There is no study proving a connection between diet and effective treatment of UC. Medicine and surgery are your only options. A diet won't hurt, but it probably won't help."

Most nurses will tell you that this is a bunch of baloney...at least when the doctors are out of earshot. Why? Because there are no studies being conducted to prove the connection, and doctors rely on large-scale double-blind studies to base their treatment upon. Why no studies? Most of them are sponsored by large pharmaceutical companies who will make no money, and in fact will lose money, if such studies are performed. The nurse who explained this to me has two degrees in nutrition in addition to her nursing degree and has been in healthcare fro 25 years. Moreover, she took her health care into her own hands when the doctors gave up on her.

Other treatment options I discussed with my doctor included things he had either not known of or decided not to tell me (like using "Low Dose Naltrexone"). I needed to at least know what these options were before having them dismissed.

The moral of the story is that you must advocate for yourself, or have someone in a position to do so. Treatments may be out there, but you may not get a completely unbiased opinion from your doctor alone. Listen to your nurses, do your own research. Along with the conditions that come with being a little older comes a certain degree of assertiveness and that most Biblical of characteristics, wisdom. "How much better to get wisdom than gold, to choose understanding rather than silver!" Proverbs 16:16 Gain understanding of yourself, your body and your conditions and it will be better than having gold or silver.