Saturday, November 7, 2009

the "no more pain until this remicade shit kicks in" diet

No matter how much research I do, my mother will always be smarter than me.

She will always be better at taking care of me when I'm sick than I am.  H.B. is new at all this, but someday he will be better at it than I am, too.  Mom is close enough to it to know the personal urgency, and far enough removed from it to consider what I have moved on from and forgotten is important.

The Short Term, for instance.  I've been so enthused about finding new ways to make vegetables more benign that I've forgotten that if I'm still having pain, they're probably not a good idea at all, even cooked and pureed.  In the long term, the SCD-esque diet will probably be quite helpful in maintaining whatever level of pain-free I can achieve with the Remicade.  But I have not gotten there yet -- clearly.  In the short term, I have to allow myself to eat grains and starches: although they're probably feeding whatever gut flora are overgrown and causing problems, they remain the only food stuff that (unless consumed in large quantities) goes down with little to no pain.  At this point in time, the goal is to avoid  pain.  Balancing diet to maintain that state has to come later.  Horse before the cart, etc.

I've always had trouble with fresh fruits and vegetables; whether it's Oral Allergy Syndrome or Crohn's, it's an inflammatory reaction, which, if it's happening in my mouth and esophagus is probably also happening in my intestine.  Since I don't have a spy down there, and my doctors seem to think my scans are "clean", I can't know for sure, but I would postulate that since my left large intestine and mid-lower small bowel throw temper tantrums whenever meals reach them, there has to be either a bigger stricture problem than Dr. P and Dr. S could see, or an inflammatory reaction to the food itself.  Deductive reasoning says one of these things must be occurring.  Good thing I have an amazing doctor to help me figure out which so I can make it go away faster... oh, wait...

My mom and dad are also the only people other than myself who have been doing this as long as I have.  Granted, they haven't lived with me for some time, but they remain my health care consultants and medical advocates in times of need (which lately is fairly often, especially if I'm in drug-delusion mode).  They remember details from the Original flares from over a decade ago... I'll be damned if I can remember flares that accurately from when I was that young.  Pain has a unique way of making my brain cease to function.  I also have a sneaking suspicion that details stick in your mind better when you're trying to keep your child from suffering.

Veggies are too new yet -- even cooked -- to strain in my belly, it seems.  Given the ridiculous flares of the past three days, it was too soon to kick out so many carbohydrates from my diet; I need them to cushion whatever else I'm putting in (which at the moment is some variation of Boost, applesauce and sushi -- yeah, small quantities of raw fish are also harmless, go figure).  So, in my mother's honor, I'm admitting defeat and stepping back to the "no pain until this Remicade shit kicks in" diet.


  1. Rice is hard on your digestive system when you have Crohn's. Why not try SCD 100% for a couple of weeks and see what happens. Just don't add the almond flour or peanut butter for quite a while. There is a list on that shows when to add different foods. I'm sorry your having such a hard time. best wishes

  2. My thoughts go out to you. I hope that you're feeling better soon. In reading your posts, I keep thinking of what a strong person you are to deal with all of this. It sounds so painful. I'm sure it's frustrating too. I wish you all of the best and hope that digestive peace finds you soon. Or you find it. Listen to your body. It knows what you need much better than any doctor.

  3. Anonymous -- thank you for your suggestion. There are so many staples to the SCD that I can't tolerate at this point in time that the full throttle diet would not sustain me. The Pecanbread site is certainly helpful, and I'll no doubt use it as I start to mold my diet more.

    Comfy Tummy -- what kind thoughts and encouragement. I had intended for this blog to primarily be a scientific one, and a medical log - my Crohn's lab book, as it were. It has become a little more personal than I would have liked, and it seems I'm not doing a very good job of portraying the positives in my life... you remind me that I may need to give more attention to balancing my approach so that people aren't given the impression that I am miserable! Your wishes are well received and warmly appreciated.