Flagyl to maintain remission

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WantRelief
Regular Member


Date Joined Feb 2006
Total Posts : 261
   Posted 2/5/2008 7:20 PM (GMT -7)   
Is anyone taking flagyl to maintain remission following resection?
31year old female
CD of Terminal Illeum and Rectum Diagnosed 12/04
Illeocolonic Resection 1/08  (18 inches of terminal illeum, illeocecal valve, right colon)
Current Meds: Pentasa, Fosomax, Iron, Vitamin b12 injections, Vicodin


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 2/5/2008 7:29 PM (GMT -7)   
I took flagyl long term several times. The last time, I got tingly fingers and found out they can cause nerve damage, so my GI told me I should stop taking them. Haven't been on it since. I found it never really helped anyway.
Have you tried pentasa? I've heard it is a pretty good maintenance drug.

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 2/5/2008 7:48 PM (GMT -7)   
I love flagyl! It works really well for me.

WantRelief
Regular Member


Date Joined Feb 2006
Total Posts : 261
   Posted 2/5/2008 7:55 PM (GMT -7)   
Yes, I've taken Pentasa since I was diagnosed in 2004.  It obviously didn't do much for me considering my recent resection, with removal of 18 inches of TI and a grapefruit sized inflammatory mass.  I was just at the GI today and she told me if I wanted to take the Pentasa that I could but there are no studies that really show it helps very much.  She said the best chance for staying in remission would be the flagyl every day.  I  know it has some side effects, specifically the neuropathy but I think that might be better than living with active crohn's disease again.

31year old female
CD of Terminal Illeum and Rectum Diagnosed 12/04
Illeocolonic Resection 1/08  (18 inches of terminal illeum, illeocecal valve, right colon)
Current Meds: Pentasa, Fosomax, Iron, Vitamin b12 injections, Vicodin


WantRelief
Regular Member


Date Joined Feb 2006
Total Posts : 261
   Posted 2/6/2008 10:30 AM (GMT -7)   
bump

31year old female
CD of Terminal Illeum and Rectum Diagnosed 12/04
Illeocolonic Resection 1/08  (18 inches of terminal illeum, illeocecal valve, right colon)
Current Meds: Pentasa, Fosomax, Iron, Vitamin b12 injections, Vicodin


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 2/6/2008 10:42 AM (GMT -7)   
Flagyl used to be employed more as a maintenance drug for Crohns and I was on it for some years with no side effects and generally good results (now on 6mp). If you can tolerate it, it may work well for you, though keep in mind that every Crohnie is a bit different.

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 2/6/2008 11:12 AM (GMT -7)   
Sometimes i take it when my fistulas act up so much that I have no other recourse. However, it always makes me nauseous (few other meds do) and often i get an achy feeling in the rest of my gut.
"The things that make us feel so abnormal, are actually the things that make us all the same" - from PostSecret: Extraordinary Confessions from Ordinary Lives - by Frank Warren


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4100
   Posted 2/6/2008 11:29 AM (GMT -7)   
I keep getting in these cycles of D and Flagyl is the only thing that seems to work, although I am not understanding the mechanism for this. How long have some of you taken Flagyl - what dosage and for how many months?
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares


MBJOH
Regular Member


Date Joined Mar 2007
Total Posts : 257
   Posted 2/6/2008 12:10 PM (GMT -7)   
My doc has had me take it for short term fixes for a flare but strongly advises against taking it long term because of the neuropathy side effect and I guess if you get neuropathy it is not reversible. Then again I am currently on Humira and it can cause cancer so I guess you just have to pick your poison. MB

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 2/6/2008 7:28 PM (GMT -7)   
i tried all kinds of antibiotic therapy. xifaxin and cipro included. they never worked for me, except producing resistant bacteria...
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


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 2/6/2008 11:25 PM (GMT -7)   
No, my gi will not use Flagyl as a maintenance drug. He puts us on Imuran and I have had no problems with it. But, I do take Entocorte 3 in theam amd I am on Lialda. This is keeping me going for the moment. Susie


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 2/7/2008 2:20 PM (GMT -7)   
I've taken Flagyl before for what I thought was an overabundance of bacteria in the small intestine...isn't Flagyl an antibiotic?
Diagnosed in October, 2003 at age 31.
36/F/SC
Currently taking Colazal, Nexium, One-A-Day multivitamin
Secondary conditions: mouth ulcers, joint pain, extreme fatigue


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 2/7/2008 5:02 PM (GMT -7)   
gumby44---I would get tested for c diff if I were you. It is just a stool test, but you need to do 2 of them at different times because of the chance of false negatives. If you are having cycles of d and flagyl is taking care of it, then you might have c diff....flagyl is what you take to get rid of it.

I have been on flagyl for around 11 months at the most....and then off and on after that.

WantRelief
Regular Member


Date Joined Feb 2006
Total Posts : 261
   Posted 2/7/2008 8:52 PM (GMT -7)   
Cmom2: do you have any bad side effects from taking the flagyl for extended periods of time?  Any neuropathy, furry tongue?

31year old female
CD of Terminal Illeum and Rectum Diagnosed 12/04
Illeocolonic Resection 1/08  (18 inches of terminal illeum, illeocecal valve, right colon)
Current Meds: Pentasa, Fosomax, Iron, Vitamin b12 injections, Vicodin


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 2/8/2008 6:52 AM (GMT -7)   
No I had absolutely no problems. I was aware of the neuropathy, so at the first tingle I would have stopped, and actually, the only reason I stopped around 11 months was because my gi wasn't comfortable having me on it any longer....I took a break for a couple of months, and then went back on for a few months....and so on. I have major rectal issues. I am a firm believer that it keeps the imflammaiton down down there....for me at least.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4100
   Posted 2/8/2008 12:06 PM (GMT -7)   
I am awaiting results of repeat stool studies. The last studies came out positive for Salmonella. I took 10 days of Cipro, and the D went away, but 48 hours after completing the antibiotics, it all came back. The doc really doesn't think it's still Salmonella, but we'll see. Meanwhile I seem to cycle rapidly between D and C...I'm so tired of all of this!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares

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