Crohn's! Now what?
October 21, 2011 12:27 PM Subscribe
So it's been definitively confirmed that I have Crohn's disease. What are the best resources for information on the web in terms of "official" sites and blogs by others with the disease?
I've done some searching and there is, as with anything health-related (or ANYTHING really), a lot of crap out there. I'm looking for good personal blogs or forums to read other people's stories and also for any sites with the best information.
Luckily things are pretty moderate for me - it all happened this summer and I dealt with weight loss, arthritis, mouth sores, and the usual GI issues, but I haven't had surgery or anything like that. I've been on prednisone and will now be tapering off and will be going on 6-MP. Some of the accounts from others that I've read seem WAY more severe than I've had to deal with and I suppose I'm still in the "wait, what do I have here?" stage?
Would love to hear from any Mefites who have gone through this with any advice, recommendations, whatever that you have!
I've done some searching and there is, as with anything health-related (or ANYTHING really), a lot of crap out there. I'm looking for good personal blogs or forums to read other people's stories and also for any sites with the best information.
Luckily things are pretty moderate for me - it all happened this summer and I dealt with weight loss, arthritis, mouth sores, and the usual GI issues, but I haven't had surgery or anything like that. I've been on prednisone and will now be tapering off and will be going on 6-MP. Some of the accounts from others that I've read seem WAY more severe than I've had to deal with and I suppose I'm still in the "wait, what do I have here?" stage?
Would love to hear from any Mefites who have gone through this with any advice, recommendations, whatever that you have!
Best answer: You'll definitely get some useful info from the Crohns & Colitis Foundation (CCFA).
posted by MsMolly at 12:56 PM on October 21, 2011 [3 favorites]
posted by MsMolly at 12:56 PM on October 21, 2011 [3 favorites]
My Crohn's-suffering fiancee swears by James Scala's "Eating Right For a Bad Gut." Diet is a huge part of controlling Crohn's and that book is a great resource for shaping what you eat.
posted by Holy Zarquon's Singing Fish at 1:19 PM on October 21, 2011
posted by Holy Zarquon's Singing Fish at 1:19 PM on October 21, 2011
Note: The above is a book, not a website, but the most current version can be had on Amazon for a quarter.
posted by Holy Zarquon's Singing Fish at 1:19 PM on October 21, 2011
posted by Holy Zarquon's Singing Fish at 1:19 PM on October 21, 2011
An interesting and provocative post on Crohn's that has some equally interesting links throughout. Whether this has value is something I can't personally speak to.
posted by eisenkr at 2:48 PM on October 21, 2011
posted by eisenkr at 2:48 PM on October 21, 2011
Nthing CCFA - it was recommended by my doctor. It's a little reserved, but is full of useful information.
posted by plinth at 6:01 PM on October 21, 2011
posted by plinth at 6:01 PM on October 21, 2011
Best answer: By the way, while on 6MP you should get CBC blood tests as recommended by your doctor - one of the side effects is to make your white blood cell count go into the toilet and that needs to get caught.
Prednisone is a real bad boy. I got pretty much every side effect under the sun including hard to control rage. I had to let Mrs. Plinth know that if I got up and walked out on the room she was not to follow. It was pretty unpleasant. It also spiked my appetite - hard to manage at times.
posted by plinth at 6:31 PM on October 21, 2011
Prednisone is a real bad boy. I got pretty much every side effect under the sun including hard to control rage. I had to let Mrs. Plinth know that if I got up and walked out on the room she was not to follow. It was pretty unpleasant. It also spiked my appetite - hard to manage at times.
posted by plinth at 6:31 PM on October 21, 2011
Best answer: ibdsucks.org is a unique forum for crohnies and ulcerative colitis sufferers and their families and friends. We've been helping each other deal with this shit since 1994. Lots of info, personal stories, sharing, support and humor. No ads. None.
I'm the owner and sysop. C'mon down.
posted by qurlyjoe at 6:47 PM on October 21, 2011
I'm the owner and sysop. C'mon down.
posted by qurlyjoe at 6:47 PM on October 21, 2011
Response by poster: plinth - Thanks - Yes, I have standing orders for blood tests starting next week for monitoring 6MP side effects. Luckily, I haven't had a huge amount of prednisone side effects, other than more energy at first and some zits. I'm starting to taper down tomorrow, so I'll be glad to get off of it.
qurlyjoe - Awesome. Thanks!
One thing that I also seem to be lucky about is that my doctors narrowed in on what this was quickly - it seems like a lot of stories from others involve a lot of bad diagnoses. So... thankful.
posted by stefnet at 6:53 PM on October 21, 2011
qurlyjoe - Awesome. Thanks!
One thing that I also seem to be lucky about is that my doctors narrowed in on what this was quickly - it seems like a lot of stories from others involve a lot of bad diagnoses. So... thankful.
posted by stefnet at 6:53 PM on October 21, 2011
Best answer: When you are in the mood for something informative but also entertaining, try Anger Burger. She has a wicked sense of humour! She does blog about food in general (and posts some cool recipes), but she also writes about living with Crohn's.
Here are all her blog posts to date (page 1, 2) that specifically deal with Crohn's.
posted by hurdy gurdy girl at 8:51 PM on October 21, 2011
Here are all her blog posts to date (page 1, 2) that specifically deal with Crohn's.
posted by hurdy gurdy girl at 8:51 PM on October 21, 2011
MeFi's own melissam runs an excellent blog about nutrition and life from an evolutionary perspective; I've found her posts on digestion informative. She has IBS and/or Crohn's, I believe.
posted by Earl the Polliwog at 9:13 PM on October 21, 2011
posted by Earl the Polliwog at 9:13 PM on October 21, 2011
Best answer: Welcome to the club! Crohn's really does run the gamut -- I was diagnosed around 15 years ago, and haven't had a surgery yet (knock wood). But other people have to go under the knife fairly soon after diagnosis. Hopefully you can get off the nasty steroids and onto something else that can help with remission.
A couple of things that have helped me immensely: vitamin D and gluten-free. Yes, some doctors will tell you that diet and vitamins can't do anything about Crohn's. But I (and many other Crohnies) feel much better, and that's what really matters. Vitamin D can help improve immune function, and wheat tends to be a bully that can tear the heck out of your guts. I also eat relatively low-carb and low-fiber to keep things un-scraped.
Diet can also be a your-mileage-may-vary issue. I've known people who have to avoid spicy foods and red meat. Neither bothers me, but a sandwich on white bread can leave me with diarrhea, aching joints, and that deep muscle pain that makes you feel like you have the flu. Many people have been helped by eliminating various things from their diets, so it's definitely worth a shot to try removing various things and seeing if it helps.
Here's a previous new to Crohn's AskMe that had some good info in it.
posted by themissy at 9:58 AM on October 22, 2011
A couple of things that have helped me immensely: vitamin D and gluten-free. Yes, some doctors will tell you that diet and vitamins can't do anything about Crohn's. But I (and many other Crohnies) feel much better, and that's what really matters. Vitamin D can help improve immune function, and wheat tends to be a bully that can tear the heck out of your guts. I also eat relatively low-carb and low-fiber to keep things un-scraped.
Diet can also be a your-mileage-may-vary issue. I've known people who have to avoid spicy foods and red meat. Neither bothers me, but a sandwich on white bread can leave me with diarrhea, aching joints, and that deep muscle pain that makes you feel like you have the flu. Many people have been helped by eliminating various things from their diets, so it's definitely worth a shot to try removing various things and seeing if it helps.
Here's a previous new to Crohn's AskMe that had some good info in it.
posted by themissy at 9:58 AM on October 22, 2011
Best answer: This is a new site that's launching, so not sure what it will be like. They also have a twitter account worth following: Chrohnology.
posted by dripdripdrop at 10:57 AM on October 22, 2011
posted by dripdripdrop at 10:57 AM on October 22, 2011
Best answer: My husband has fairly good luck with Humira up until recently (he has serious psoriasis, too-they often go hand in hand. Yay, and thank god we have great health insurance). Recent flare up has led to a 13 week course of prednisone now-lots of late nights and occasional crabbiness or wackiness. His doctor feels strongly that there is no one dietary answer. I'm not sure what we think. I really don't want to go gluten free-I'm the main cook, there's 5 in our family, and that's a pretty radical change (hey, I looove my homemade bread and pasta and cupcakes....). If he decides he wants to try, we'll do it. Not much helpful here, but good luck.
posted by purenitrous at 9:37 PM on October 22, 2011
posted by purenitrous at 9:37 PM on October 22, 2011
Best answer: 'Welcome' to the community. I am a UCer (last 5 years), frequent at HealingWell and Patients Like Me
I eat EVERYTHING (in vegetarian and spicy spectrum) but in moderation. Gave up on alcohol the day I started Azathioprine. Supplement my diet daily with 2000IU of Vit D and 1000mcg of Vit B12 (Will switch this to methylcobalamin instead of cyanocobalamin soon)
Some good advice you already have gotten and the truth is your life has changed forever. The above two places have helped me immensely and by default I have a habit of taking everything with a pinch of salt especially with alternative therapies other folks use, mainly due to the wide gamut of this disorder.
My personal advice, delay Remicade and Humira as much as you can.
Good Luck.
posted by zaxour at 6:09 AM on October 23, 2011
I eat EVERYTHING (in vegetarian and spicy spectrum) but in moderation. Gave up on alcohol the day I started Azathioprine. Supplement my diet daily with 2000IU of Vit D and 1000mcg of Vit B12 (Will switch this to methylcobalamin instead of cyanocobalamin soon)
Some good advice you already have gotten and the truth is your life has changed forever. The above two places have helped me immensely and by default I have a habit of taking everything with a pinch of salt especially with alternative therapies other folks use, mainly due to the wide gamut of this disorder.
My personal advice, delay Remicade and Humira as much as you can.
Good Luck.
posted by zaxour at 6:09 AM on October 23, 2011
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posted by Apoch at 12:33 PM on October 21, 2011