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Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 11/27/2007 11:43 AM (GMT -7)   
I'm writing a book about a treatment for Crohn's disease, and I wanted to invite people on this message board whose doctors have prescribed that treatment for them to share their experiences. I wrote to the administrator of the board about 2 1/2 weeks ago to request permission to post my request, but haven't received a reply. Any ideas of what I should do next, or if the request was inappropriate, could I find out why?
 
Thanks for your help.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/27/2007 12:57 PM (GMT -7)   
Hi Not sure what the rules are on that but would be interested in knowing what med it is and your reasons for writing the book. We are of the opinion at times that there is not enough info out there about CD and newer meds might need more info out there where we can get it.. I am sure if it is a book to be helpful and informative it would be a good book and we might want to help . One thing for sure this a place where a person could find info from many different people lol gail

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 11/27/2007 2:01 PM (GMT -7)   
Thanks for asking about the book. The treatment I'm writing about is enteral nutrition (special liquid diets), used for inducing and maintaining remission in kids and adults with Crohn's, often as an alternative to steroids. I'm writing the book because in the US doctors tend to think it's too tough to ask patients to use a liquid diet so they don't mention this treatment option. Even in Canada and Europe, it tends to be offered primarily to children, and much more rarely to adults. Granted, a liquid diet for a few weeks is not something that everyone wants to try, but I think it's good for people to know all the available options since Crohn's is so tough to manage.

I got interested in the subject because I have a chronic inflammatory disease that does not exactly fit any of the known diagnostic categories, but is closer to Crohn's than anything else. That led me to experiment with enteral nutrition myself; unfortunately, it does not put me in remission. But the more I read about it, the more impressed I was at how effective it could be, especially in people with small intestinal Crohn's, and I thought it a real shame that patients weren't being told that it was available. I wanted to offer the kind of nuts and bolts information that I would have liked to have when I first thought about trying enteral nutrition, and I also wanted to draw together in a reader-friendly fashion all the studies and case reports that help clarify its benefits and limitations as a treatment. The other thing I'm including is experiences of individual patients with enteral nutrition, because I think when you're considering a therapy, knowing how others have dealt with it and what they think of it is particularly valuable. Anyway, sorry this was so long, but that's basically why I'm writing this book.

gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 11/27/2007 2:23 PM (GMT -7)   
Hi Sounds very interesting I have not tried it but did take ensure and I do beleave that it was a great help to me I had very good results as getting weight on but of course I was on prednisone too . Are you talking IV supplement or things like ensure and boosts because there are lots who I am sure would have very positive things to say about it. Your right having info about what your taking makes a difference. lol gail

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 11/27/2007 3:27 PM (GMT -7)   

Liquids like Ensure are exactly what I'm talking about, taken by mouth or through a feeding tube, rather than intravenous nutrition (TPN). Other brands people use include Modulen IBD, Vivonex, Peptamen, E028, etc. Some people take them as their primary treatment; others use them as you have, strictly for weight gain, or for growth in kids (and those, too, are important uses that I am covering in the book, and would love to have people's input on).

 

Ensure can work really well, by the way -- there have even been a few studies of its use to induce remission in Crohn's, but they were published back in the 1980s and few people are aware of them. I want all that information out there where people can find it, rather than having to dig it up in a medical library themselves!


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 11/27/2007 5:39 PM (GMT -7)   
Writer,
Our administrator was away about the time you likely wrote to him. Please write to him again at admin@healingwell.com describing your request. It is likely he is behind in catching up with his email due to being away and the recent holiday. I shall also send him a message regarding this post.
Ides
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


Admin
Forum Administrator


Date Joined Jan 2003
Total Posts : 9658
   Posted 11/27/2007 6:40 PM (GMT -7)   
Writer,
I'm sorry I didn't reply... I get hundreds of emails and it is impossible to respond to them all in a timely manner.  Regarding your request.... typically I don't allow book participation requests, unless it is academic in nature.  I hope you understand.
 
Peter
Peter Waite, Founder/Editor
HealingWell.com - Community, Information, Resources
www.healingwell.com


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 11/28/2007 8:00 AM (GMT -7)   

Ides, thanks for passing along the message, and Peter, thanks for  the reply. Sorry it won't be possible.

 

For anyone who's been following this thread, and would like to follow up elsewhere about the book project, I post fairly regularly on the Dragonpack board for parents of kids with Crohn's and a message there will find me.

 

Best,

 

Margaret


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 11/28/2007 8:22 AM (GMT -7)   
Writer, after my son's diagnosis in June his doctor put him on prednisone for about 8 weeks. Since then (knock on wood) he has been doing really well with the exception of about 10 days in early October. We believe he began a flare at that time. Through an acquaintance on the Dragonpack board you mention, I was aware of enteral nutrition as a alternative to prednisone.

Ironically, my son had a regular check-up scheduled with his GI during the week which he had his flare. Prior to that (and at the beginning of his flare) I explained to my son what enteral nutrition might be able to do for him--calm things down and restore "normalcy" without going back on prednisone. He was really, really motivated to try it because he hated his experience with prednisone.

As you mentioned in your previous post, his doctor was less than supportive even though he admitted it is a viable alternative. As you said, his doc said a liquid diet is very, very hard to do and would mean 4 to 6 weeks of nothing but liquids. My son didn't care. He wanted to avoid the prednisone above all.

Thankfully the liquid nutrition did the trick, and it only took about one week! I would be happy to share further details if you would like to email me personally. We used very little Ensure or Boost due to the high refined sugar content. There is another product on the market with which we had success.

Thanks for posting this and good luck with the book!
EMom

Grateful for everyone's help here!

Mother to 15 year old boy just diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, and a good multivitamin.

Started The Maker's Diet in early September.


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 11/28/2007 8:45 AM (GMT -7)   
EMom,

Thanks so much, I will e-mail you.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/28/2007 9:03 AM (GMT -7)   
Writer- Ill be emailing you.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 11/28/2007 9:08 AM (GMT -7)   
Thank you very much, Fitzy, I will watch for your message.
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