If you don't want to read my whole shpeel, my general question is why and how does Cipro/Flagy control my flare ups, and why does my stool become solid while taking both, however is pure liquid when taking neither. It cant be either or, it has to be both taken together 3 times and twice daily in order to work for me, IV Cipro/Flagyl stops my flare in its tracks every-time, and I am released on oral maintenance.
Hello fellow pouches, I am facing a dilemma and it has been a problem for many years now. I had a total colectomy and my rectum removed and pouch put in about 5 years ago. Ever since my takedown surgery it has been nothing but pure liquid stools and lots and lots of gas. After countless visits, hospital stays, and experimenting I have found what works to control my pouchitis. It is Cipro/Flagyl combo. Not one, but both must be ingested by me in order to have solid stools. If I am flaring badly, I go to the hospital and within 1 day of IV Cipro/Flagyl I have formed stool again. When I am home, if I go without my Cipro/Flagyl for more than a few days, it goes back to pure liquid and lots of gas. Once I begin taking the Cipro/Flagy again, within 2-3 days I am haivng solid, completely formed stool.
What is happening? How are the antibiotics controlling my pouchitis and why do antibiots give me solid stool? When I ahve solid stool, it tells me that I am not flaring.
Example: I was recently incarcerated for about 2 months. The intake doctor listened to me, and gave me Cipro/Flagyl and mesalamine enemas. After 7 days the script expired and I was without any medication for several weeks other then mesalamine. The mesalamine only gave me a small amount of releif, still watery stools that were just a little easier to get out and looked a little more solid, but definitely no where near the consistency of my stool when it is controlled with Antibiotics . After putting in numerous complaints and grievances I finally saw a doctor, who agreed to put me on Flagyl alone. This BARELY made a difference adn again expired after 7 days leaving me to suffer with no medication other than mesalamine enemas. Once I was released I began taking Cipro Flagyl and had my flare under control in less than a week, however I admitted myself to the ER and it took IV Cipro/Flagyl to get my flare under control. They also gave me IV steroids and sent home with a taper however steroids do nothing for me other than make me nervous and shaky/jittery. I was on Remicaide and it did not seem to be doing much, my Dr.'s are hesitant to put me back on Remicaide since the Antibiotics help me so much. I must mention that before I was hospitalized I ran out of Flagyl and was taking Cipro alone, and that is why I began to flare again so I ruled out that Cipro alone does not work for me, neither does flagyl alone, it has to be the combination.
I cant be on Cipro/Flagyl forever.. Can I? I also tried Xifaxin for SIBO treatment along with a low fodmap diet for months and that did not work.
The only relief I get is from taking Cipro 500mg Twice daily, and Flagyl 500mg 3 Times Daily.
I have taken VSL #3 before, along with the combo and the only difference I noticed was additional gas and a somewhat "good" feeling in my stomach minutes after taking them, as if it satisfied a craving.
I am curious if the strongest dose of VSL 3 daily could have the same effects on my Pouchitis as taking Cipro/Flagyl. I would love to switch out VSL 3 over my antibiotics however it is so expensive. Has anyone heard of a way to get Medicare to pay for VSL #3?
Any input would be great, I cannot be convinced that Cirpo/Flagyl is not working to control my Pouchitis as I live this everyday, and have for years. I have had one doctor tell me that I will be on the Cipro/Flagyl combo for life, and other doctors saying that they didn't agree with the treatment and that eventually they would no longer work for me. It's been roughly 3 years that I have been on Cipro/Flagyl regularly. I was told maybe a lower dose of both would be the best long term option.
I use mesalamine Enemas and Suppositories (I have both, depends how I am feeling for the day or if I have time for an enema, if not I'll pop in a suppository and go on with my day, and have a large bowel movement about an hour after like clockwork every-time.
Recently I have to push on my stomach to empty my pouch, being incarcerated with a J-pouch was pure torture and I don't think my pouch would have lasted much longer in there. Passing gas was nearly impossible without alerting several people and the stage fright alone made it hard to go #2 not to mention having a pouchitis flare on top of that. My recent pouchoscopy only shows inflammation at my anal area and IO have a fistula with a seton placement.
Why does Cipro/Flagyl control my flares?
