Ellie, it's too early to give up! I had a similar antibiotic response, although Cipro alone didn't become ineffective quite so quickly. Since then, though, I've had an excellent response to the combination of Cipro and Flagyl, even though Flagyl alone was useless for me. The combination has now worked perfectly for me for several years. Some things to note:

1) I carefully experimented to find the lowest effective dose of each drug, to minimize the risk of side effects. In my case that's Cipro 500 mg and Flagyl 250 mg, both taken once daily at bedtime.

2) I have included Metamucil twice daily since my surgery. I do find that it helps.

3) I also take a *maximal* dose of VSL #3 DS (4 packets daily, with 2 at breakfast and 2 at dinner). I also find that this helps.

4) I take one Lomotil at bedtime, which helps eliminate one of the worst problems with pouchitis.

In my case, at least, interventions that are inadequate alone sometimes make an important contribution to a regimen that works. Maybe you could try working with a knowledgeable gastroenterologist instead of a surgeon. Good luck!

Ellie, I am sorry to learn of the problems that you are having with your j pouch. While I cannot personally relate to chronic pouchitis, I can definitely relate to your feelings about having an ileostomy.  For significant medical reasons, I needed to have my 30 year j pouch removed and strongly did not want to have the bag.  I totally concur with the comments that Scott has posted.  You definitely want to be sure that you have tried your best before deciding to have more surgery.

Although an ileostomy is an option, there are two surgical procedures that avoid the need for an external bag: the k pouch and closely related BCIR.  I have had a BCIR for 4 years with very good results and an excellent quality of life.  You may want to research these options online to see if they would be possibilities if your j pouch had to be removed.  Since pouchitis is also a complication for some people with these two procedures, I would ask whether pouchitis is a significant concern given your history with it.  The BCIR is now being performed in London by Dr. Ed Westcott, who received his training from my surgeon, Dr. Ernest Rehnke in Florida. Please feel free to send me a PM with any questions you have.

Bill

Just throwing it out there, but I was on a rotation of Flagyl, Cipro and Xifaxin for chronic pouchitis. I was doing pretty well, but my GI did not like me being on constant antibiotics. He recommended Remicade with oral azthioprine. It's been over a year and I've been in remission with no antibiotics.

Just wanted to let you know that you have plenty of options.

Jan

Hi,

ive had my pouch for 17 years and have struggled with pouchitis for most of them. Cipro and Flagyl have worked for short periods(months), Flagyl giving me terrible headaches though, and most recently Xifaxin. I did 4 weeks ( I think) of Xifaxin 3x daily, then 1 month of Canasa suppositories 2x daily. I also added VSL #3 2x daily and have had great success. It's now been about 7 months with no pouchitis :-)

I also did not cope well with a stoma and bag. My skin being super sensitive to the adhesive. I completely understand your feelings. 

Hang in there, don't give up!

Mrs. P

Ellie,

I relate to your frustrations.  I have pouchitis and rotate 5 antibiotics each week and am still in the bathroom 15 times a day. You will make it, it may take some time but don't give up. As you can see there are so many wonderful people in this group who can help. 

Don't panic-you have many options!

this is a great article with a decision chart for treatments, and it was written before biologics-there are at least 3 (maybe more) biologics like remicade, humira, Entivyo that can be tried once the suggestions in the article/chart have been exhausted.

I had good response from cortsteroid suppositories and budesonide, but could never seen off them. Rotating antibiotics (flagyl and Cipro didn't work, but I do 2 weeks on Levoquin and tthen 2 on xifaxin) alone didn't work, but I added Immuran to the rotating antibiotics, weened off the budesonide, and have been doing great for 2.5 years. If/when these stop I will pick a biologic and take it from there...

dont give up!

Don’t give up please there are other ways. I was pouchitist and I used antibiotics and used Imuran. I used Imuran for 6 years and I was perfect. For 1 year I am not using it and I got pouchitist 3 times in one year. Now I have to use it again. Your situation can be like this. Antibiotics are not always enough. 

Don’t loose your hope

Here is a link to the article: https://www.researchgate.net/p...ngement_of_Pouchitis