Crohn's Disease Forum » Treatment » Long-term use of flagyl?


 
05-22-2017, 07:05 AM   #31
Kela80
 
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Join Date: Nov 2011
Location: Melbourne
hi all!

female my age with crohns since her 20s, i was diag w ulcerative colitis (pan) in 2002. no firm poo since then, always diarrhea. upper gi, barium enema, 1 colonoscopy 2009 showed pan colitis. docs prescribed asacol & prednisone, tried asacol one x, made uc worse. never took prednisone. typical day: up 4-5 x @ night to poo, no deep REM sleep/no dreams, exhaustion all day/lay on couch fatigue, poo during day 15-20 x. bad abdominal/schtummy pains/bloated. on bad nights fever. hospitalized 5 days for peritonitis/hole in colon via MRI (1 doc wanted to remove colon/1 doc voted keep for 5 days rest & flagyl & complete bowel rest) felt great! almost no symptoms, except headaches & metallic taste from flagyl. just got another rx for flagyl, thank goodness!


Are you still on flagyl. I'm going through this at the moment as seems to help my Crohn's



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33yo Melbourne Australia
Primary Scelrosis Cholangitis 1998
Crohns 2000
Divertculitis 1999
Stoma 2011
Reversal 2013
12-20-2017, 12:17 PM   #32
michaelcbrook
 
Join Date: Dec 2017
Location: Des Moines, Iowa
I had a similar experience to sillygirl, except I ended up having surgery, had an ileostomy, and then now have a J-pouch for UC. But what I want to emphasize is that Cipro and Flagyl worked for me, and had I been left on it, I don't believe I would have needed surgery. You see, I never had any GI problems before. Seriously, never. In about 3 weeks of diarrhea starting, I ended up in the hospital. They started me on Cipro and Flagyl. It worked and I was set to go home. Then they did a colonoscopy, said I had severe UC. My first stool culture to check if I had an infection was lost. My second one was done after I was already on antibiotics. It came back negative. They took me off the antibiotics after 6 days (after pain had already stopped) and instead put me on Prednisone. I went downhill almost immediately, the pain came back, and when I asked if I could be put back on the antibiotics, they said I was technically no longer their patient because they had already put in transfer orders to send me to another hospital because of my declining condition. I waited about 3 or 4 days for another bed and they stopped treating me altogether except to continue the steroids. It was all downhill from there and every other doctor assumed the antibiotics had already been tried and didn't work (even though I told them differently), and they all went with higher and higher doses of steroids. I got worse and worse, lost 50 pounds due to an undiagnosed SIBO in just 4 weeks, they found out I had a C. Diff AND CMV infection the whole time. But when I kept losing weight and couldn't gain it back, no matter how much I ate, they wanted to do surgery or Remicade. With my horrid response to the steroids, I opted not to do the Remicade and do surgery instead. Now it's a year later and I have the J-pouch. And after all this, they finally put me back on Cipro and Flagyl to treat the SIBO and I've been fine since. In fact, if I get off of it, I get pouchitis. And now my doctor is considering something other than Flagyl because of his concerns about it being administered long term (can cause peripheral neuropathy) even though I have always tolerated it extremely well and have had no problems.

Moral to the story: If antibiotics work, stay on them and NEVER and I mean NEVER let them put you on steroids. And if you do and it makes your condition worse, get off it immediately. This could have all been prevented if the doctors I had in the hospital listened.
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