The (Old) Plan

Originally, the plan was to visit my friends in Arizona who treat cancer patients with ‘nutraceuticals’ and have them work their magic on me. Though I came up with a new plan toward the end of December (i.e., get hooked up w/TPN), I instigated the first plan out of desperation to avoid the GI docs who seemed bent on cutting out my colon.

In retrospect, I’d have saved a lot of time and money (and some muscle mass) by asking my doc flat out: “If I come in to the hospital, will you put me on TPN without requiring me to start on Prednisone again?”

I now think she’d have said, “Yes, right now we want to keep you away from being dangerously close to coding on us.” Or something like that.

Having gotten down to 113 pounds, and freaked the hell out of my family, including my dad way out in Paris, I managed to remember my initial reaction when my MD brother-in-law first told me about TPN (in the context of, “Chris, right now you’re starving. And I don’t mean hungry, I mean that your body is using its own cells for energy.”). I thought, “Wow, I should have started that weeks ago! Not only would it prevent more starvation, it’d also give my colon a break from whatever I may be eating that’s irritating it. And maybe then I wouldn’t have to have surgery!”

Well, that’s what I’m doing now. At first, one GI doc asked me to eat a full diet, on the theory that even if I’m only absorbing a fraction of what I take in enterally, that’s still supplemental calories and nutrition to boost the effects of the TPN. I tried that for awhile, but found my diarrhea getting more bloody and my intuition crying out to do liquids only.

Intuition won again, or so it would appear. A mere 2 days after I switched to mainly clear liquids, my bms dipped below 10/day for the first time in forever. They’re now down in the 4-5 range, which brings me to the plan, as of today, 1/31/09. Actually, there are 2 plans.

Plan B: Surgery. If—after 3 weeks of TPN and liquid diet—my symptoms get worse, or seem to have plateaued, I’ll get cracking on surgical preparations. Those involve consultations with surgeons in order to decide who’d do the cutting, scheduling the procedures, and going through the weeks of prep, procedure, and recovery necessary to get a j-pouch in gear.

It’s worth pointing out that I initially heard about TPN in the context of preparing for surgery, as the standard procedure at John Hopkins is apparently 1 month of TPN plus bowel rest in order to get the colon and body in good shape for recovery. So what I’m doing now fits perfectly into the Plan B scheme.

Plan A: A little fuzzier than Plan B, Plan A involves a lot more realtime tactical maneuvering. Basically, I plan to show a marked improvement in symptoms by the end of week 3, at which point, if colon inflammation is down enough, I’ll introduce “full liquid” and eventually solid foods in an empirical fashion. That is, I’ll try just one new food for 2-3 days in order to see how it affects my digestion/symptoms. If the food causes problems, I’ll eliminate it for now. If not, my diet will be the richer for now including pureed carrots or homemade applesauce.

If there’s anything to the suggestion that ulcerative colitis can be kept in remission through diet, this approach should allow me to keep my colon. Which is why this more complicated route is Plan A.