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No LDN for me.

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Ulcerative Colitis
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Posted 5/29/2013 4:26 AM (GMT 0)
I've wanted to try LDN to help with things in general. I am in remission on Remicade, but still having loose stools 3-4 times per day. I went an extra week beyond the usual infusion period of 8 weeks last time, and flared badly until I got Remicade back in my system. So... I really wanted to be on LDN to help in case I have to stop Remicade ever, and to see how it might help me in general.

My GP said he's fine with me taking it, but want's my GI doctor's approval first.

My GI doctor says he doesn't see much harm in it, but since I'm in remission he cannot justify any medicine because there is no necessity for it. Basically he's covering his liability in case anything went wrong.

So... no LDN for me unless I find a different doctor.
Posted 5/29/2013 4:32 AM (GMT 0)
I don't see a point in taking extra meds just in case. I would try LDN if Remicade fails. How are you feeling lately? Any improvements with your mono?
Posted 5/29/2013 4:51 AM (GMT 0)
Well, I'm not certain it's mono anymore. Nobody really knows. I'm going to see an Rheumatologist soon to ask what the body aches and sick feeling could be. The infectious disease doctor basically ruled out mono effecting me right now.

The LDN would be more in case I had to stop Remi.
Posted 5/29/2013 4:52 AM (GMT 0)
"but since I'm in remission "


his belief or yours ?


if i had to find another doc to try ldn, that's what i would do -
Posted 5/29/2013 5:05 AM (GMT 0)
Soystud... it's both our belief about the remission. I will find out for sure late June after my next colonoscopy!
Posted 5/29/2013 5:16 AM (GMT 0)
sorry T, but according to the official soystud uc rule book, you and doc are both wrong -

what difference does it make ? not sure - but i think it might if treatment is based on that belief -

but you are right in that the hooter cam will be the final judge -

show it your good side :-)
Posted 5/29/2013 5:43 AM (GMT 0)
I have a friend who told me she goes 4 or 5x a day and she doesn't have any condition, I thought that was excessive. When I go 2x, I start questioning my condition. When I go 3x, there's definitely some concern but more than that, is a lot of times. I guess it's all perspective. When I was flaring, ii would have done anything to get down to 4x but now that I go 1x, if I were going 4x, that would be a major downgrade. Not that success in life has anything to do with number of times in the toilet - i just hate to go more than 1 or 2x a day and i hate it even more if i have to go while at work! Hopefully my UC doesn't rear it's ugly head anytime in the future.
Posted 5/29/2013 9:39 PM (GMT 0)
Just my two cents but I would suggest 3-4 loose stools a day is not remission either.

greed with Soystud. It matters if treatment or refusal of meds is based on that belief. Good luck with the scope. Hope that shows all is well but it may be worth waiting on trying elsewhere to get the LDN until then.
Posted 5/29/2013 10:25 PM (GMT 0)
I also hate to rain on your parade but having loose stools 3-4 times per day is not remission.
Posted 5/29/2013 11:25 PM (GMT 0)
3-4 loose stools a day IS remission IF you also have IBS. Remission means that UC is calmed and your colon doesn't show inflammation. I believe that is my case, and will find out for sure in late June.

When I went on Cymbalta 60 mg daily last fall my stools formed up, my dull pain in my colon went away, and I went to the bathroom less. So that's why I say I'm having IBS issues, not IBD.
Posted 5/30/2013 12:10 AM (GMT 0)
ah ok. Didn't realise the IBS part...maybe I should have read your sig!

Was just basing it my own experience. I'm averaging less than 1.5 per day semi-formed ...but I know I still have some inflammation.
Posted 5/30/2013 2:17 AM (GMT 0)
I have both, and if I had 3-4 a day I'd be worried. But again, mine likes to stay on the constipated side.

Hopefully you aren't flaring and it's just your IBS.
Posted 5/30/2013 2:50 AM (GMT 0)
I've always been a 2-3 times a day person for as long as I can remember. Some people just are like that. So 3-4 is VERY close to normal.
Posted 5/30/2013 3:01 AM (GMT 0)
Thoreau, I agree!!! 3-4x is a freaking BREEZE compared to how bad it can be- no matter if it's considered remission or not. I will NEVER complain about going this much every day when my worst was 30x a day.
Posted 5/30/2013 3:08 AM (GMT 0)
T, you seem a bit cranky tonite - nobody is tryin to pee in your puddin, just giving our thoughts - truth is, you know your poops a lot better than anyone here - sincerely hope you're right :-)
Posted 5/30/2013 3:22 AM (GMT 0)
Haha... sorry for the crankiness Soystud. I've been on my computer here watching radar for the storms moving through my area, and have been responding on here without being really into it, and maybe it comes across as cold.

I'm stressed out a lot lately as well. Uncertainty with my work is a certainty... and it has been getting to me lately.
Posted 5/30/2013 11:43 AM (GMT 0)
Thoreau, you know you can get LDN without the doc if you really want to?

The thing about LDN that most don't realize is that it is an immune system modulator, so why wait until remicade fails?

Why not have a back up system that will take over when remicade fails?

Just my 2 cents...

Posted 5/30/2013 12:01 PM (GMT 0)
I've been in a good solid remission for six months and still go two to three times a day. It can be normal for many people. If I only went one time a day it would be at least two feet long or longer most days :)

Stay say Thoreau; where are you...NE, right?
Posted 5/30/2013 1:36 PM (GMT 0)
hey, no problem T, i know you've got a LOT on your plate right now -

hope you get things figured out soon -
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