Of course, lately I've been ravenous for Crohn's info and middle-of-the-night Googling of my docs is not unheard of. Here's a comprehensive interview about Crohn's with that "second opinion" GI I saw this week, Dr. James Lewis, who is a colleague of my primary care GI at the University of Pennsylvania. You can listen or read the the transcript. He discusses anti-TNF drugs (aka biologics) that I am considering, along with surgery. He also talks about the new argument to begin treatment with the most aggressive meds (biologics) upon diagnosis, instead of the traditional "step-up" method (which is how I am being treated).Thank you for taking an interest in my disease and treatment options. I sometimes feel very alone in all of this, and these past six months have been the most trying of my otherwise very fortunate life. It feels wonderful and reassuring knowing my friends and family are reading and backing me up!
Hot Areas of Crohn's Treatment Research, via Everyday Health
Kathryn, thanks for the updates. So many possibilities, when you would just like the whole thing resolved. Whenever I wake up in the night, I think--is Kathryn awake? And send thoughts and prayers your way.
ReplyDeleteLove you,
Nancy
First of all, what a sweet mother-in-law you have! Aren't we lucky to have such great in-laws?
ReplyDeleteSecond, I'm sorry I didn't have time to read all 18 pages of the transcript, but from what I did read it sounds like Dr. Lewis is feeling pretty optimistic about possibilities for at least a good treatment, even if they don't think they will find a cure anytime soon.
Know that we're pulling for you!
Kathryn, received info re blog from your mom. I am going to read more later on today. My son has uc and is now 23. I worry about the med's he is on everyday and pray for him, but I will say that since starting remicade 4 yrs ago, he has been pretty good. He really had no quality of life without it. I will include you in my prayers and pass any info I receive on to you. I have listened to one webcast from the Mayo Clinic and it was very interesting. I also heard about steroids which they are testing which dissolve directly in the intestines instead of the entire body so there are less side effects. I think I heard correctly it is in testing phase. I could go on and on. Again thanks for info and I will pray for you.
ReplyDeleteThank you everyone for your well-wishes!
ReplyDeleteNancy H: I got a full night of sleep last night; yay!!! (I'm sort of on a schedule: one night of little sleep, one night of ok sleep, and then back to the beginning again and again.)
Lauren: Yes, I am very lucky! ;-) Also, yes, it seems there are lots of meds in the pipeline. I am hopeful.
Nancy A: Thank you for visiting! I'm afraid you're going to find a lot of asinine stuff on here too (pictures of cats bathing, for example, ha ha) but I talk about Crohn's about 1/4 of the time. I am considering Remicade, but a GI just suggested Cimzia, which may not be so harmful for babies (although there is no conclusive evidence either way for any of these meds). The most frustrating thing about this disease is that there are a couple of different options and my docs are wishy-washy on what path to pursue since there is not "correct" course. But I should be glad there are options at least! My thoughts go out to you and Kyle; this is such a frustrating disease.
That website is excellent! There's a whole series of audio webcasts:
ReplyDeletehttp://www.everydayhealth.com/crohns-disease/webcasts/