I'm back ... and on Twitter now ...

Hello again!  I've been in remission for about 9 years or so, but my Crohn's started to return late last year.  The symptoms have only been minor, but I wanted to head them off before they progressed any further.  Rather than immediately jump on the anti-TNF biologic bandwagon, I wanted to pick up where I left off with trying to understand the underlying cause of the disease and what alternative (i.e. low-risk) therapies are worth trying in place of or, if necessary, in concert with the pharmaceutical approach.

I'm catching up on research and news and thought I'd share that in case it's helpful for anyone else out there suffering from Crohn's, UC, IBD, or auto-immune diseases in general.  Something else that changed over the past decade was the introduction of Twitter!  I've used it personally and professionally over that time and figured it might be an easier way to share news and research with minimal commentary.  And then perhaps when I'm ready to draw some conclusions, I can blog here in long-form.

So, if you're interested in joining me on my research journey, follow me on Twitter here:

@LetsBeatCrohns

Cheers!

Healthy Labs launches social network for people with Crohn's

I'm in the tech industry in Silicon Valley myself, but this one slipped past me surprisingly.  Catching up on my news, I came across the launch of a new social network that allows people with Crohn's to track their health and share experience with others in an online community.  The company that launched it is called Healthy Labs.  They called the site Crohnology.

Here's an article about the launch of the site.  And here's a link to Healthy Labs.

Congrats to Healthy Labs on the site!  Great idea!

Nice overview of IBD, CD, and UC from Duke Research

Came across this nice 50 min overview video from Duke (my alma mater) covering different types of manifestations and management recommendations for inflammatory bowel disease, including both Crohn's Disease and Ulcerative Colitis. Highlights of note:

• minute 36:00 - The speaker comments on clinical protocol for inducing remission right around minute 36. Gives you an idea of what your doctor is basing their recommendations on.
• minute 39:30 - Non-Anti-TNF agents that are under clinical trial and study for treatment of IBD. Everything from helminthic therapy to stem cell treatment.

Some Interesting Blogs and Forums

Upon doing a Google search for "gaining weight on the Specific Carbohydrate Diet", I came across several pretty interesting blogs and forums. Here they are (short list):

• HealingWell.com Crohn's Disease Articles - array of articles on IBD and Crohn's
• HealingWell.com Crohn's Disease Forum - seems to be quite a bit of activity on there, including folks that are very well read up on the latest IBD research studies. I was pretty impressed by people's knowledge.
• Fanatical Adherence - blog from a young man on his attempt to have a "fanatical adherence" to the SCD diet. Interesting note, he regrets having taken himself off meds too soon as he developed a stricture in his colon as a result of excessive inflammation -- leading to a resection surgery. He continues his diet. He's 5'10" and at one point was as low as 115 lbs, but now a healthy 150 lbs. (Although, ominously, he hasn't posted anything in about a year).
• Living With Crohn's Disease - collection of blog postings via WordPress that cover a wide range of topics from the basics of the disease, to treatment options, to drug side-effects, to dealing with your doctor, etc.

Dr. Hoffman on Crohn's Disease and Ulcerative Colitis

I came across several great articles from Dr. Hoffman on the topic of IBD, specifically Crohn's and Ulcerative Colitis. Hoffman runs a center that combines both modern and natural medicines in treating illnesses. I'm still reading these articles, but they are so helpful I thought I would forward them on. I found the first article off of the scdiet.org website, which is also great. Not a coincidence that Hoffman wrote the foreword on the Breaking the Vicious Cycle book.

Here are links to a few articles:

• Crohn's Disease and Ulcerative Colitis - great article from 1995 that highlights the Specific Carbohydrate Diet and even new therapies like low-dose naltrexone
• Addressing inflammatory bowel disease - includes a very long list of treatment options with discussion of each
• Candida - discussion of candida overgrowth / infections and its link to IBS. This is why I am currently drinking Chamamille tea (as it is an anti-fungal).
• Inflammatory bowel disease update - similar to the first article listed above, but also includes a few success stories that are quite interesting (all involving IV treatment which I had not thought of)
• How Does Dr. Hoffman Treat Crohn's and Ulcerative Colitis? - discussion of treatment approach that Dr. Homman might take (excerpt included below)

And here's a sample of a treatment program:

An example of our treatment program is described below.

TESTING:
IgG RAST food panel, Candida antibodies, anti-gliadin antibodies, Vitamin D, B12, folic acid, homocysteine, zinc, iron, ferritin, testosterone (healing in men), and DHEA (healing in both sexes)

DIET:
Specific Carbohydrate Diet (tailored to reflect results of IgG RAST)

SUPPLEMENTS:
SCD-Compliant Probiotics, Vitamin D, Enteric-coated Fish Oil, EGCG, Curcumin, Zinc, L-glutamine, Methylcobalamin, Methylfolate, DHEA

OTHER THERAPIES:
Low-dose Naltrexone, Chrohn's/Colitis intravenous "drips", antifungal medication (Nystatin, Diflucan, etc.), bio-identical testosterone

There was a very long list of potential therapies and supplements in the above articles that I will likely be investigating more and experimenting with myself. His services don't seem too expensive, but he doesn't accept any forms of insurance, so its all out of pocket. They appear to have offices in Manhattan (New York) only.