So frustrated...and I hate the Lakers

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ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 6/14/2009 8:25 PM (GMT -7)   
LDN was doing so good!  I had solid stool, no pain, was feeling great!!!! But this stupid fistula wouldn't go away, and the doctor scared me into Pred. and 6mp.  Told me I needed more aggressive therapy or it would be a bag for me.  Did I do the right thing?  How soon do you think I can go back on LDN??  I'm not making it up, I swear, LDN was gold for me. 
 
And I hate the Lakers!!!
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
100mg mecaptopurine, 20mg Prednisone, 500mg Metronidazole 3x daily, Darvocet for dessert.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/15/2009 6:41 AM (GMT -7)   
Its my understanding that 6mp is to be a longterm medication. You might want to talk to your GI about how long he plans on you being on the 6mp. Not sure if you can take it and the LDN together, but at this point it might be best to get your fistula under control first before thinking of trying the LDN again. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 6/15/2009 8:10 AM (GMT -7)   
OK, I'm from Boston, I always hate the Lakers!

But, I'm just going to play devils advocate here. If the LDN wasn't healing the fistula then it wasn't gold for you. You need to find the RIGHT combination to keep ALL of your symptoms and problems in check and if the fistula is running wild then LDN isn't strong enough.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 6/16/2009 4:10 PM (GMT -7)   
LAKERS RULE! http://www.healingwell.com/community/emoticons/yeah.gif basketball domination and supremacy is back in LA. granted they are not as exciting as the showtime lakers of the 80s, but still a great team. we show the rest of the nation how to riot, er i mean celebrate, after winning a championship.

exjohnson, i dont know who your team is, but i detect a touch of jealousy.... http://www.healingwell.com/community/emoticons/tongue.gif

sorry zanne, but the refs began the dynasty for the pats. that was a fumble - every replay shows it and every one who ever saw it, like it or hate it, has no choice but to agree with it. if that call was made correct, the pats dont go to win the superbowl and start their run and brady goes back to back up next year when bledsoe returns. instead the raiders begin their run of multiple superbowls cos gruden doesnt leave. think about it. look at how much a botched call changed the destiny of these two teams. but i understand your hate of the lakers from the boston celtic rivalry of the 80s - what great games. i'll never forget magic's baby sky hook in the key to win it. super sweet! http://www.healingwell.com/community/emoticons/smilewinkgrin.gif
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 6/16/2009 4:51 PM (GMT -7)   
I hear ya, Zanne, but remember, fistulas end up becoming their own thing after they set in. It'd be like if crohn's caused you to break your ankle, and you went on Remicade. It might control the crohns, but you have to do something about that ankle. That's how a doc friend explained it to me.
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
100mg mecaptopurine, 20mg Prednisone, 500mg Metronidazole 3x daily, Darvocet for dessert.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 6/16/2009 6:54 PM (GMT -7)   
Hi Hope the meds work for you, where is your fistula located? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~Blessed are they that have the joy of helping others~ gail


ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 6/16/2009 7:15 PM (GMT -7)   
I haven't heard the term LDN before.  What does that stand for.  And . . . what do the Lakers have to do with it?  ha ha  I happen to be a Lakers fan.  You'd think I would be a Jazz fan being from Utah and all but I hate the Jazz.
Crohn's Disease.  Diagnosed 13+ years ago.  I've been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  This last time has been the worst.  I'm now full of ulcers from my stomach all the way down to my anus.  I'm currently doing Humera 40mg injections every other week.  I'm also on Imuran and once a day Lotensin.  I'm in the process of weaning off my first round of Prednisone.  I recently joined a local crohns disease support group that meets monthly.  It has been great talking to and meeting other people who share the same disease.  I hope to continue gaining insight through this forum as well.


ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 6/17/2009 7:30 AM (GMT -7)   
LDN means low dose naltrexone. There's a lot of buzz about it.

And gail, it's an anal fistula.
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
100mg mecaptopurine, 20mg Prednisone, 500mg Metronidazole 3x daily, Darvocet for dessert.


yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 6/17/2009 8:36 AM (GMT -7)   
I hate the Lakers too!!! Just like I hated the Bulls when Jordan was playing. Kobe's so good it's no fun to watch. Weird I know but that's how I feel. about all the Crohn's stuff.....

Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 10 months ago. Was on Remicade but just recently switched to Humira because remicade stopped working, B-12 injections and iron.
God Bless. Tony

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