What the ****

[Jeff D.]

I am royally pissed right now. I was told by moy doctor that I would be on flagyl for 15 days at first and I was completely fine taking it for that amount of time. Then he bumped it to a month to make sure everything was fine. Now I am supposed to continue to take this crap. What's going on here? The last time I was on flagyl I was on it for about 3 months, well I stopped for about a month or so. I don't want to get damned cancer that could possibly kill me from being on this med for so long. Aaahhhhh!!! Has anyone else has this experience. I don't understand why I have to be on a medicine that just kills my intestinal flora and could give me cancer. The doctor always kind of fades away from telling me why I am supposed to be on flagyl when I ask him. I guess it really doesn't matter all that much because I am moving after my next Remicade treatment in a month. I won't really have to see him again or anything but it really pisses me off that I keep going through the same crap.

Anyways thanks for listening, and answering my question in advances.

God bless anyone, I don't want to sound so pissy but I am so annoyed I can't go fixing some of the things I wrote.

 

[D Bergy]

I don't know much about the whys of most official Crohn's medications, since I have only used LDN, but I certainly would load up on the probiotics. As long as you are killing everything off in your gut, might as well take advantage of it by loading it up with good bacteria.

Turmeric is a Cancer preventative and blocks TNF activity also. Check for interactions before use.

I would be kind of skeptical of a doctor that cannot explain the logic behind his recommendations also. It is not like you do not have the right to know.

Dan

 

[Jeff D.]

Yeah I've been skeptical of this guy for the five years I've had him as a GI. My parents love him because all he focuses on is me gaining weight and because he is supposedly "one of the best in CT" but with only a handful of Pediatric GIs in the area of course he is one of the best.

I've been taking the probiotics like crazy since I have been on antibiotics.

 

[butt-eze]

It could be that you have C. Difficil. Has your doctor been running stool sample tests on you? Have you been having diarrhea? Often times if a doctor can not clear up what appears to be a flare they will run a stool sample test to determine if you have a bug. It is your right to insist on the reason for taking flagyl.

 

[Creepy Lurker]

Metronidazole (flagyl) is a valid treatment for Crohns. Taking it for more than a month can cause problems though.

I took it for a month, then moved to a different antibiotic for a month, then to a third for a month before moving back to Metronidazole.

The main reason your doctor might not be forthcoming with information is that it is currently not known how antibiotics help Crohns. They just do.

 

[Jeff D.]

I have not had any stool samples run at all. A month ago I went to the ER and was in the hospital for a week. I had an abscess and about three inches of active Crohn's in my rectum. Antibiotics haven't really helped much except clearing up the abscess, since that is basically a bacteria laiden area. Remicade has helped me the most. I have no D and mostly have C if anything. I go to the bathroom regularly but because of the narrowing of my rectum and the overall tightness I have down there things just don't flow very well.

 

[butt-eze]

Well...Crap! I don't know what to say. I'm glad you're moving!

 

[Jeff D.]

Yeah me too. The one good thing I have been introduced to by my doctor has been miralax. I just had a batch of it which I think I have perfected the amount of liquid to miralax solution so it dissolves quickly and everything. I have been on that stuff for so long but it makes me go so I'm happy.

The Remicade stuff has been a miracle and my GI didn't even want to put me on it. When I was in the hospital the surgeons and my on call GI said I should so on it. I'm so lucky my GI wasn't on call that week or I probably would have been sent home with a boost of 6mp.lol

 

[soupdragon69]

Hi Jeff,

Am sorry you have had a rough time of late but it is good you are finally managing yourself to balance things out.

I agree remicade is the answer for many of us. I am finding it is helping my severe asthma and severe skin problems too!

Hope you are on the upturn

 

[Jeff D.]

Oh yeah I felt so much better. I can actually live my life for once. I'm glad it is working for you as well.

 

[Kev]

welll, you learn something new everyday (or at least I did today). I didn't know that flagyl was aka metronidizole (sp?). Is that correct? Reason I ask is I was on it.. came off of it after 10 days (9 plus a bit actually) as on it my symptoms became MUCH worse.. In retrospect, it may have had nothing to do with the flagyl (much easier to spell).. BUT, the GI who put me on it AND advised me to come off of it early (best GI surgeon around, he teaches it at the uni as well as heads the dept in the largest hospital in the area)... Welllll, he told me something when I was coming off it that may fuel the fire, the controversy whether to take it or not. now, he might have said that to alleviate my concern over coming off of it, and in that lite he may have 'fudged' the numbers just a little... or he could've been telling me the straight goods.. but he said it literally only works 20% of the time!
Now, if one assumes for the moment that those numbers are close to being accurate, then it raises the question as to why docs prescribe it for crohns at all.. and, given youv'e got to take the chance, better to prolong it and aim for a good result, than play it safe AND possibly miss out being that 1.

Wonder if there are any postings anywhere where those numbers could be checked? Plus the real odds/chances of long term usage, and what actually constitutes 'long term'. Be interesting reading, and something to ask/follow-up with your GI about. how big a real risk are you running into, and what are the real odds it will help.. That is something worth knowing!!