Monday, May 14, 2007

100 Questions and Answers About Crohn's Disease and Ulcerative Colitis

Today a present came for me in the mail. It came from the folks at Abbott who make Humira, which is a drug I am considering for the treatment of my Crohn's Disease. The drug has all sorts of positives and negatives and of course, that is something best left to a doctor, the patient and the family. If I get angsty about our next step, I will probably blog all about those.

In the meantime, I have been researching that next step the modern patient way. I have read about the options on MedicineNet, WebMd, CCFA, etc. I have read blogs and boards. I have also visited the sites related to the medications. Now, big pharma gets a bad rap. I can certainly gripe myself. However, in some cases, they do provide some really valuable patient information. I tend to take what I can get and ignore the marketing materials and push for this drug or that drug.

I signed up for the newsletter at CrohnsOnline.com. It came with the offer of a free book that I had seen on Amazon but not in real life...100 Questions and Answers about Crohn's Disease and Ulcerative Colitis. Wow! A free book. Yep, I know, mailing lists and such. I can't say that I am ever really annoyed by Crohn's mail. (not like I am when my insurance company sends me a "We noticed your blood pressure was high at the last visit, did you know we had these resources to help you and why don't you do this and this as well?" umm yeah it was high, I was seriously dehydrated and really quite sick, thanks) In any case, nearly all of the mail I have ever gotten, whether it be from a pharmaceutical company or CCFA has been helpful in some way.

By the way, if you haven't ever signed up for the CCFA mail, do so. Asacol will put you on the CCFA for a trial run if you go to their website (or at least they did) and you will still get the CCFA mailings for quite some time. Their magazine is really good in a glossy sort of way. I find the CCFA membership fees a bit to expensive for me but I do love the magazine. CCFA also has the best resources online (all free) for folks with IBD. They do great work.

Anyhow back to my free book. Crohn's Online is an Abbott site. However, you have to really dig to see even mention of Humira and there is a bit of basic info about Crohn's. The book is the big prize though. In exchange for your info, and presumably the occasional mailing about Humira (They have a very detailed yet fairly clear privacy policy-do read it)...they send what really is a nice informative book. The book does talk about TNF medications in a very thorough answer to one question. However, it is NOT a book that you need to fear is pushing this or that. It gives a lot of basic information on diagnosis, medications, complications plus answers a lot of those questions that you might not want to ask your doctor. (like how come I feel so "crappy"?, the answers to sex and pregnancy questions, why your skin is falling apart, how to lose weight while being unable to eat fruits, vegetables and whole grains, how to keep weight on while being unable to eat at all, etc. ) The book is simple, nicely set out. I like the question and short answer format. I think it probably is a good reference for everyone with this sort of Tummy Trouble, whether newly diagnosed or whether you are a crohn's blogger who had to toss the computer on the bed to run to the bathroom during the writing of a post, like this one. In fact this one. Who did. Right in the middle of the sentence. You wanted to know that. I know you did. In any case, get this book...get it free by visiting the CrohnsOnline.com website linked above, or buying it from Amazon or grabbing it from the library, though I think it is one of those books someone with tummy trouble might should just have on hand. (because as you know, in the middle of a flare, when you need to know is it time to call the doc, go to the ER or take some Tylenol, you are in no shape to visit your library)

1 comment:

peppery said...

Thanks for posting about this. It's nice to have as much information about Crohn's and UC as possible.

I like your blog. Good luck with your medication deliberation...