Share Facebook


07-06-2013, 03:11 PM   #1
Charleigh
Forum Monitor
 
Charleigh's Avatar
 
Join Date: Nov 2012
Location: Southern USA

My Support Groups:
LDN and SCD?

Does anyone here combine the two? E is losing some progress . While we are committed to this diet, we are thinking about adding LDN to it to help reduce inflammation. I would love feedback on this
__________________
Mom to 4 incredible kids ~ 17, 15, 13, & 7
Including Incredible "E" ~ 15 year old Crohn's kid
Diagnosed at 11.
Enteral Nutrition
07-06-2013, 03:17 PM   #2
Clash
Forum Monitor
 
Clash's Avatar
I think Jmrogers4 did SCD when they first started LDN but it may have been paleo.

Good luck.
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
07-06-2013, 03:30 PM   #3
Charleigh
Forum Monitor
 
Charleigh's Avatar
 
Join Date: Nov 2012
Location: Southern USA

My Support Groups:
Thanks, clash. It was SCD. I have actually pm'ed with her about it. Jack's success is what made me think we should give it a try . I'm just not willing to go the typical top gun med route yet.
07-06-2013, 04:30 PM   #4
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
You know, before I got ill, I was one of those AR folks who refused to take so much as an ASA for a headache. I just had this thing about taking, relying, on medications. Then I got my intro to the not so wonderful world of IBD. And medications became a very big part of my life. But those... side effects... you know the ones I mean.. you see the ads on TV, and they go on about the benefits of this drug or that drug, then they start with the disclaimers... and it is usually the same low key, low volume, monotonous drone of info... almost as if, if they skim thru it quickly and quietly, you won't even catch what it is they're saying. Those scare me. One of those medications put me in the ER. To me, it was a case of... damned if you do, damned if you don't. So, what do you do to fight this disease? And, what if it isn't you fighting it... what if it is your child. The thought one or both of my sons might have to face the same unsavoury choices I was dealing with didn't sit well. Then someone posted a link here, to the original Dr Jill Smith study at Penn State, and I spotted a glimmer of hope. A well known drug, used for decades, in a very low dose, might be the key to controlling this disease without all of those risks associated with the 'typical' drugs doctors trotted out. So, I started LDN in November of 2007. At the beginning, I had the occasional vivid dream that 'they' said could happen. Best side effect EVER!. I've taken 4.5 mg of Naltrexone every nite since, and basically I got my pre-disease life back. And, no issues, no other side effects, no sign of anything stemming from my long term protracted use of the drug. Nada, zilch, zip. Nothing. Just a return to being healthy... (well, as healthy as a man closing on 60 can be, considering those other drugs I took). You see, the thing I was really shooting for, was some way to treat this disease.. IF my sons got it (knock wood so far) where they could live just a normal life, without those nasty side effects to lose sleep over, and without having to live like a monk. (I never went SCD, but in the early days I was on hi protein, low fat, low residue, low fibre, lactose free, sugar free diet that made things like.. cooking, going grocery shopping, eating at a restaurant, traveling, etc., a real nightmarish challenge.)

Now, I eat whatever I want... OK, so if I eat too many green vegetables, or too much roughage, I pay a price... I have a GI tract full of scar tissue that will never go away. But, otherwise... I live a normal life.... with an otherwise incurable disease.. by taking 1 pill a day (at bedtime)... in such a low dose it is almost completely side effect free.. and life is pretty good.. There have been two studies on its use in adults, and one on its use in children. It has a success rate comparable (I say better) to any other medication you might consider for treating IBD. It may be my personal bias speaking, but I think LDN is the perfect treatment. I 'think' it should be the defacto standard treatment that doctors trot out first when treating IBD. I'm hoping someday that will be the case, and it will resolve 90% of IBD cases... and a whole lot less folks will have to live this horrific nightmare called Crohns. OK, off the soapbox. Short answer.. I have combined diet and LDN to treat my disease in the early days (although I never went SCD) and it worked. I found that I didn't need to stick to a diet, LDN by itself works. I would suggest that if you have any form of IBD, a good, healthy, sensible, IBD friendly diet is common sense.
Of all the medication options out there for IBD, LDN is the safest I have ever heard of.

Period.
__________________
KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
07-06-2013, 07:34 PM   #5
Jmrogers4
Moderator
 
Jmrogers4's Avatar
Yep we did SCD for about 2 weeks and then switched to Paleo for about 3 weeks and gluten free for about 8 weeks, we had a really hard time with the SCD because Jack just doesn't like anything, Paleo was a little easier for us. He got a little Foreman Grill and made himself lots of chicken and steaks (we did cheat and he ate ketchup). He now eats pretty much anything although we do try and stay away from too much processed food but we haven't found anything that really bothers him anymore but then I think we are both a little PTSD about food in general.
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
Reply

Thread Tools


All times are GMT -5. The time now is 07:19 PM.
Copyright 2006-2017 Crohnsforum.com