Crohns disease 10yrs LDN 3 weeks

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Hello I am new to this site. Have had Crohns disease for 10yrs and have been on many drugs. Last reaction was to Remicade and severe. Was on daily Entocort for years because no other meds were working. Have never had surgery and my recent colonoscopy done in Nov 09 showed disease in sigmoid colon and terminal ileum. Have been treated the last 5yrs in LA California by a large research IBD center which was not supportive of LDN. My MD stated not enough research, that research that was done was incomplete etc. etc. After much frequent and loud debate I finally got a script for LDN 4.5 mg. I have had no side effects at all. I am off Entocort and am hopeful that LDN is going to work for me. This treatment is a major shift to the traditional treatment which is suppressing over active immune system. I am very excited about this approach of working w my immune system and am grateful for someone mentioning to me Dr. Jill Smith's continued research using this drug. Am also on SCD for years and I do cheat occasionally but the diet has also helped w my symptoms. Was not a believer w this diet until I saw my symptoms significantly decrease within a short period of time. If I can provide support to any others on this treatment please don't hesitate to contact me. I am also very interested in those that have been on LDN for Crohns and their experiences. Thanks
 
Welcome to the forum and thank you for the offer of help. I'm glad your having good experiences with your new drug and I hope things stay that way for you for a very long time. Welcome and good luck.
 
pain in the butt,
Hello, I am on the Specific Carb Diet for about 6yrs. Breaking the Vicious Cycle by Elaine Gottschall is what I highly recommend for the guidelines. There also is websites on this topic which cover the basic food groups to avoid. The theory behind the diet is carb intolerance thus balancing of intestinal flora. There have been some limited studies that have found the diet has decreased bowel inflammation thus reducing symptoms and healing of bowel. What I have found for myself is it defiently has reduced the cramping, and food triggers. Have gained weight and it has eliminated my sinus and reflux issues totally. It is strict so what I did was take it slow and eliminated one item at time. If you cheat as I do go back to diet the next day. Good Luck and keep us posted.
Debbie
 
Hi Debbie, welcome to the forum (and blame it on my faulty memory if I already welcomed you elsewhere in the forum... nothing to do with crohns, its always been faulty)..

Anyway, I've been using LDN for over 2 years, very successfully and absolutely no side effects. I've found that it isn't bulletproof (foolproof). I can have flares IF my immune system is stressed by something else; cold, flu, etc.. BUT, I simply stick with the LDN and it all works out in the end. I haven't gone the SCD route... I thought about it, but it was simply too strict for me.. Congratulations on sticking to your guns to get LDN prescribed, and here's hoping it works for you as well as it has for me. It certainly changed my life, and I dread to think of where/how I'd be if I hadn't managed to get it.
 
hI

hI Debbie,

Im new to this site, i dont have chrons but my husband has had it for 10 years, he has just recently had an operation involving cutiing out a fuscia from down below, this is his second operation with this problem but now it is a lot worse and it is due to his mediation not working. He has previoudly been on many drugs such a premisolone, immuran and salzaparin. He is now on a drug called Humira, worked for a while but it has now stopped. If you tell me a litlle bit more about this drug then maybe i could mention it to my husbands specialist. I am in Australia, where abouts are you from?

Hope to hear from you soon
 
I have been taking LDN for over a couple of years. I also use some other self treatments, but LDN is the mainstay.

I have been doing just fine. I am at about 95% of normal and not too much variation from that.

Dan
 
Thanks for info on diet I give you a lot of credit I don't think I could stick to it. I can't eat alot of things as it is and I'm still learning what bothers me because sometimes I'm ok with something and other times I'm not . I do know that popcorn nuts fresh fruit raw veg. have me on my knees . Also not sure what LDN is . I'm tapering on pred. and take bentyl and enema so not sure whats next will find out feb. 24 I hope.
 
CrohnsHobo,
No it was not UCLA but Cedar Sinai. My care was transfered from University of Chicago to Cedar when I moved to West Coast. Have been treated there for 6yrs and recently needed to get second opinion. My Doc started out very open to complementary treatments in combination w tradtional approach to Crohns. However, since his promotion in Research IBD clinic he and I were not agreeing on many things so it was time for a different member to lead my team. Found GI closer to home and got new script from someone else for LDN. Informed my new GI what I was doing and he was willing to monitor me after looking at my recent Pathology report etc. Will see what happens. I feel very hopeful on LDN week 4!!
 
Dan,
I would say 95% is Excellent re keeping symptoms in Check. I'll take it. I was reading someones response that this is a slow process not the quick jolt u get w other courses of treatments. I have been through the ringer and back w side effects. Some worse then the symptoms of my Crohns Disease. I am willing to stick w this and see what happens. Felt a little off the first week but I feel pretty good week 4 LDN and SCD. Am also taking probiotics for about 10yrs.
 
Kev,
Thanks for the support on the LDN. Knowledge is power and I really was determined to get this script!! Did you have any surgery prior to starting LDN? Am just curious to see if those that have not had any surgery do better then those that have had surgery eg resection etc. My new Doc told me he is seeing two types of Crohns patients those that have positive bx, symptoms but not surgery and those whose disease which manifests itself w fissures, resection etc.
 

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