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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » LDN - how do I approach my GI?


08-05-2013, 04:46 PM   #1
ChristieJP
 
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LDN - how do I approach my GI?

Quick background: I developed gluten sensitivity (probable celiac disease) in 1998 (never biopsy tested) and have been gluten-free since then. Over the last few years, I've been having more and more digestive problems and have cut lots of things out (beans, pineapple, watermelon, most meats . . . sound familiar?) Suddenly in January, I had one bout of rectal bleeding and lots of abdominal pain in the RLQ area. I thought it was another bout of endometriosis (diagnosed in 2000; uterus and ovaries removed in 2002), but my gynecologist wanted a colonoscopy - and hey, what do you know?! It's not endometriosis at all; I have Crohn's! (diagnosed in May of 2013)

This is a very new thing for me. I am a researcher, and I don't like the drugs he immediately prescribed for me. I haven't taken them. He gave me Lialda and Uceris. Not only are these drugs VERY expensive, but they have terrible side effects and they scare me. I am not YOUNG young, but I'm only 38 and I don't want to be taking long-term type drugs that will damage my kidneys and liver and give me cancer. I know all side-effects listed on drug bottles are scary, but these are extra-scary. Plus, I don't agree at all with the typical battle plan of depressing the immune system. I think it needs to be stronger, not weaker.

I have developed a supplement protocol based on scientific studies I have read, and I have been eating low-residue (it seems to help the most so far), but my symptoms are getting worse.

I would like the next step to be LDN rather than immuno-suppressants and steroids, but I am uncertain how to approach this with my doctor. I plan to print out the research behind what I have already been doing to decrease inflammation and promote healing (boswellia, turmeric, aloe vera, L-glutamine), and I will take the LDN studies with me, too. But I don't think he's going to like a patient coming in, not being "compliant," with a request for a particular drug that isn't part of the standard treatment . . .

If it doesn't go well with him, I have an appointment in September with an M.D. at the Integrated Health Center in Phoenix . . . hope she will be more open to the idea.

How did you approach this with your gastroenterologist? Should I take along my secret weapon (a whip-smart husband who can think on his feet quicker than I can?)

Any hints or advice is greatly appreciated! Thanks for all your posts on this topic - I have been educating myself well for the last two months!

-Christie
08-06-2013, 05:57 PM   #2
Kev
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Hi Christie

Looks like you've already decided on LDN. If I might suggest... if you really want LDN to be seriously considered by your doctor... then go in with the info on it, and nothing else.

Don't overload your doctor with all your other non LDN related material, research, etc.. Focus on it for the moment... pick your target.. (or choose your battles). Then you need to decide how much you want it? Would you be willing to switch doctors if he/she isn't convinced by your research? Many doctors dismiss the information we 'patients' come up with... I went prepared to do battle... I had all the info (one research study), and if my GI declined, I was going to ask my GP, and if he declined, I had the name and phone number of a US doctor who did phone consults (at $700 USD a pop). I even had the formula for making my own LDN from 50mg pill and distilled water. It never came to that.. I was very lucky.
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
08-06-2013, 06:14 PM   #3
ChristieJP
 
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THANK YOU for this advice, Kev. I respect your experience and self-education! Good idea to just focus on the one issue that's the biggest deal to me (LDN is it). I tend to err on the side of being overprepared.

I have other diagnoses, and more than one time, my doctors have not agreed with the treatment route I chose to take. I really hate it - feeling like the "bad patient" who just won't listen to the professionals, darnit!

I am willing to switch doctors. I have another one lined up in case this one says no, and I will try my GP, too, but she's usually pretty stubborn about not doing anything "risky" (i.e. not traditional treatments). Eventually, I think I can get there and get started to see if LDN will be as helpful to me as it has been for others (like you!)

Thanks again, Kev.
08-08-2013, 10:36 PM   #4
ChristieJP
 
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Update: My doctor was REALLY open and asked to keep the studies I printed out; he was impressed by the endoscopic proof (not just symptom relief). So I now have a script for LDN in hand! If anyone in the Phoenix Arizona area is looking for a doctor who's willing to give it a try, PM me and I'll give you his name and office.

Thanks again, Kev, for all the advice and experience you have shared on this forum.

-Christie
08-09-2013, 05:23 PM   #5
Kev
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Well, you are welcome. I hope you get your LDN, and it works wonders for you. I thank you for your kind words... the thanks are appreciated... I, I just feel embarrassed.. (odd, I admit.. I figure it is "I" who owe a debt of thanks.. that I can never repay.. for the person .. and I'm forced to admit I can't recall who posted the original link to the 1st LDN study... but, if it hadn't been for that link.. wellllll, I shudder to think where I might be now... ANYWAY... my postings on here... it's my way of repaying that debt, or call it a case of... pay it forward... or I'm just a long winded old fart who likes making a stink).

There you go... if it works for you... then you tell two friends.. and they'll tell 2 friends..
(OK, that reference is so old, only other dinosaurs will get it)

All the best
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