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07-31-2011, 09:18 AM   #1
BosnianboyCD
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Join Date: May 2011
Location: Kent, Ohio
9 weeks on LDN

Sorry about the delay in updates. So, I wish I came here bearing news about an amazing recovery after more than two months on LDN. However, that is not the case. It's been 9 weeks on LDN and I feel like I'm back at square one. My abscess is hurting and another one formed (or got larger if it was there already). I have blood almost every time I go. My stools aren't very formed. A lot of the time when I go it's just blood and mucous. It's been like this for over a week now. It's really discouraging. I mean I'm still not giving up on it because I want to give it the full 12 weeks before losing hope. I'm hoping that this is jut a little set back now. My 21st birthday is August 20th and all I want for it is to be able to have a beer with my friends without regretting it the next day. At the moment, it doesn't look like that's going to happen.
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21 year old student at Kent State University. Born in NJ lived in Bosnia for 6 years.
Diagnosed in 2003 at the age of 13 with UC. 2011 Diagnosis changed to Crohn's Colitis.
Had a few remicade infusions. saved my colon. Ineffective now.
Currently taking eight pills a day- Sulfasalazine. Flaring up moderately.
07-31-2011, 10:40 AM   #2
Kev
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Join Date: Jun 2006
Location: Halifax, NS, Canada

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Bosnianboy

Sorry to hear that there's been no eureka yet. I think your gameplan of staying on the 12 weeks is sound... longer if you have the pills. Speaking of which, are you certain that they came from a reliable source? One of the bits of info I garnered from the LDN forum (lowdosenaltrexone.org, I think) way back was that not all sources are reliable, and if it is not properly formulated and compounded correctly, it will lessen the chances of it working. There are all kinds of variables in making it right, and not all pharmacies go the extra mile to ensure it is. Another bit of info (and this is dated, from back in 07) was that candida (if you have it) can play havoc with LDN doing it's thing. Candida is one of those things doctors don't address or consider, but that doesn't mean it isn't a real issue. There is a simple test to see if you have it... look for long strains/strands in your saliva... if you have that, then start taking acidophilous to help combat candida. I'm not an expert or authority on this, just passing on anecdotal info that might help, OK?
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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
07-31-2011, 11:34 AM   #3
handle
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I think you are brave to persist with the LDN. I also think it might be wise to at least add some pred enemas to your routine, or even a short sharp burst of pred to get those symptoms under control.
good luck.
07-31-2011, 03:29 PM   #4
BosnianboyCD
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Join Date: May 2011
Location: Kent, Ohio
Thanks for the input Kev. I got it from a reliable pharmacy according to lowdoesnaltrexone.org. I will see my Dr. asking him to give me a test for Candida. I got the pills from Irmat Pharmacy in NYC. I'll keep at it and see what happens. I'm not giving up.

Handle, Thank you. That means a lot to me. I'm highly considering starting up on enemas again. However prednisone wreaks havoc to me and makes me worse. Weird, I know.
08-01-2011, 08:53 AM   #5
lanaklingenberg
 
Join Date: Apr 2011
Location: Stoughton, Wisconsin
BosnianboyCD - Sorry to hear of your struggles. Just a quick suggestions - if your disease is primarily in your colon, ask your doc about Entocort in lieu of prednisone. Its also a steroid, but is only absorbed in your colon so you don't have the systemic side effects pred can cause.
08-01-2011, 09:25 AM   #6
xJillx
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Location: Pennsylvania

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I am sorry to hear about your set back this week. I agree that some pred enemas may be needed to nip this flare before it becomes worse.

Please continue to keep us posted.
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Jill

Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
08-01-2011, 09:27 AM   #7
mizgarnet
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Join Date: Dec 2010
Location: spartanburg, South Carolina
Hang in there. I had some similar issues when I started LDN. It really took about 3 or 4 months for me.

Wendy
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DX'd - 1991
08-01-2011, 02:14 PM   #8
KaLa
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Join Date: Mar 2011
Location: New Jersey
Did you ever try mesalamine (Rowasa) enemas? They help me stop bleeding when I have a flare - and no steroids. I have UC.
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