It would be easy for me simply to say that I’ve been remiss and lazy in not posting here for so long, but the simple truth of the matter is that my Thanksgiving holiday was followed rather rudely by a seriously nasty head cold and sinus infection that had me laid up in breathless agony for about 7 days. This post has been long in coming, and there’s so much I’ve wanted to tell you about, so this will be an omnibus posting (omnipost?).
ITEM) The holiday itself was absolutely lovely. In addition to spending time at my brother and sister-in-law’s house with friends and family, I managed to stay 99% SCD-legal. I’m fortunate to have a family that is so supportive! It’s also helpful to have a sister-in-law that is a crohnie and who spent a couple of years as a strict SCD-adherent! My brother, Jerud, is the meat-master of the household, and he did not disappoint. His turkey was brined, then smoked, then roasted, in addition to being wrapped in bacon. It was sublime! My SIL, Lisa, made a lusciously creamy mashed cauliflower. I seriously need to get that recipe because it was unlike anything I’ve ever managed to make. Diana and I brought a butternut squash gratin (this had cream in it and wasn’t strictly legal, so I avoided it), roasted Brussels sprouts, which were a big hit, and following tradition, we brought along a fancy cocktail. In this case, we infused a bottle of Wild Turkey bourbon with cardamom and cranberry. We then mixed it with spiced cider (SCD-legal!), lemon juice, and maraschino liqueur (this was my one dietary concession). This was one delicious cocktail, and I don’t even like cider! Overall, the evening was perfect, and I can’t wait to use the frozen turkey carcass to make some yummy stock!
ITEM) I mentioned in an earlier post that I’d been invited to take part in a Crohn’s blogger summit. I’d also expressed in that post some cautious skepticism over the fact that the summit was being hosted by a pharmaceutical company, UCB, that manufactures a Crohn’s drug (Cimzia®). The key panelists for the summit were Ally Bain, of Restroom Access Act, aka Ally’s Law, and Dr. David Rubin, co-director of the IBD Center, as well as Ally’s GI doc. Also on the panel were Michael Christian, a crohnie, Crohn’s advocate, and Crohn’s parent, and Jan Jeffords-Schenck, a product manager with UCB. There were 8 bloggers in the conference, including myself. In order of introduction: Sarah Choueiry, of My Journey With Crohns. Sara Ringer, of Inflamed and Untamed. Ashley Hasty, of A Hasty Life. Julie Kennedy, of The Sick Adventures of a Semi Colon Girl. Nadia Fuad Deane, of The United Colon Vlog. Katie Clark, of Chronic Style. And finally Sean Ahrens of Crohnology.
Sadly, this was at the height of my head cold and my notetaking skills were less than stellar, so I can’t give you a full blow-by-blow of the full presentation. I’ve been led to believe that there may be a video or transcript available at some point, so hopefully that pans out.
I think that, for me, one of the most interesting parts of the conversation was a ‘state of the union’ presentation by Dr. Rubin, in which he spent some time talking about the current thoughts regarding Crohn’s in the allopathic world, along with some revealing information about why IBD diagnoses are so problematic. I had been under the impression that differentiation between Crohn’s and colitis was fairly simple and that presentation of the two conditions is easily distinguished. As it turns out, this just isn’t the case. Apparently IBD is not only idiopathic in origin, but also in presentation. Also interesting was his observation that there is increased recognition that Crohn’s symptoms can be extra-intestinal, but also that many extra-intestinal symptoms are directly related to bowel inflammation.
Another useful topic of conversation was, “Living well with Crohn’s”. Some of the juicier points raised during this discussion included:
- Set high standards for care, and be your own, most vocal, advocate. Hold your doctors accountable for the care you expect to receive. If they don’t step up, find a new one!
- Use technology. The internet is full of useful information, and huge numbers of IBD-ers are using it as an adjunct to the information their doctors give them.
- Get the most of your your Dr. visits by asking lots of questions, and making sure that your provider has all the information they need to understand the ‘whole person’ context of what you tell them. If your doc isn’t interested in this info, consider finding a new one!
There was a lot more to the discussion than just what I reviewed above, but again, my notes are… spotty, at best. Overall, I felt that the summit only just scratched the surface of what it could be, and I’m VERY hopeful that it will only be the first in a series of such meetings. I feel that this could be an effective and important avenue of information dissemination, and I’d love to be a part of it! My thanks to UCB for the invitation to participate.
ITEM) Due to my lack of involvement with the CCFA, I was only recently made aware of Senate Resolution 199, which names, in perpetuity, the second week of December to be National Crohn’s and Colitis Awareness Week. Because of the late notice, and my continuing cold recovery, I’m not likely to do much about it this year, but I’ll definitely mark it on next year’s calendar. In the meantime, what about you? Are you doing anything for the week? I’d love to hear about it!
ITEM) I’ve made several mentions of the newly formed SCD Support Group here in Portland. For those of you that are interested, the next meeting is next week, Dec. 13th. It was a great inaugural meeting last month, and I’d LOVE to see more of my local readers this time! Here’s the details:
FOCUS for December 13th, 2012 Group:
What favorite food or dish do you feel you’ve sacrificed for The Specific Carbohydrate Diet? Let us help you find a replacement dish!
*Come prepared to share local and on-line resources for SCD legal
foods and ingredients
*Bring your favorite recipes and/or cookbooks to share
Well, kids, I think that’s about all I got for now. Diana tried a new recipe this week for a Texas-style no-bean chili. It’s in the crock pot right now, and the house smells AMAZING!! If it tastes even half as good as it smells, I’ll be sure to post the recipe here!