If you start an antibiotic how quickly should you see improvement? If you don't see an improvement should you stop and move on to something else? My son has been on continuous Cipro for 3 months now with no real improvement. We added Flagyl with no improvement. Stopped Flagyl. Added Xifaxan with no improvement. Stopped Xifaxan. Just added Tinidazole (5 days ago) so far nor improvement. He is also on Humira and cort enema. He can't do Remicade as he has very high antibodies. Nothing is helping. Dr. doesn't want to take him off Cipro, I think he is afraid things will get worse. We also just started SCD diet. The odd thing is his bloodwork looks normal and greatly improved since December but his symptoms are not getting any better. He still sees blood and can't feel relieved and has to strain and spends 30 min at time in the bathroom. We are going for scope tomorrow to check for stricture but he was just checked in December and didn't have a stricture. I sure hope he gets some relief soon. I'm actually praying it is just a stricture, but since he sees blood I'm sure there is still inflammation.
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Man, I'm so sorry he is having that much trouble with things. Most of the time, if you are going to see changes from antibiotics, they occur pretty quickly. I notice changes in my j-pouch within a day, usually (decline in frequency, usually, and less stool). And your doctor may be right and the improved bloodwork could be the result of the antibiotics. But man, if it were my daughter (who has a j-pouch), I would probably do the scope and if it didn't show anything I would probably see about getting in with Dr. Shen at Cleveland Clinic to try and get answers.
Well he did have a stricture that the surgeon dilated today. I sure hope that gives him some relief. Although there is still inflammation in the bottom of the pouch. If we don’t see improvement soon we will definitely go see dr shen. We are seeing great drs at mt sinai but he’s suffering for too long. And I’m just not sure why they are keeping him on cipro for so long if it isn’t helping.
My husband has a jpouch too and is doing great for 13 yrs.
Yes, those were my thoughts too - seems like a long time to try antibiotics as a remedy without any positive results. I have had my j-pouch now for 12 years, so I'm right behind your husband. And my daughter (14 yo) has had hers for 7 years now. So far, she has been doing really well with it although the teenage years have made her a bit more self-conscious. A couple Jr. High girls got her upset last week laughing in the bathroom at her loud BMs. I told her Jr. Highers are dumb, and besides - who cares? She has gone to Camp Oasis the last two years which has definitely helped her with the self-conscious aspect of things.
Has he tried Entyvio It put me into remission almost immediately I failed everything and was about to lose my pouch
This is complicated, but I am puzzled at the prolonged periods of treatment also. Generally, you should see some sort of improvement with antibiotics within a few days, but no longer than a week or so, before changing the drug or dose, or combination. Having a stricture compounds things, so no matter what you do, you are at a stand still until the stricture dealt with.
There are other biologics other than Remicade and Humira. Plus, adding azathioprine or methotrexate can help. The right biologic can get him off antibiotics. That is what happened with me, and antibiotics were actually effective.
Jan 
The dilation did not relieve his symptoms. We are moving on to Entyvio. Still taking entocort and tinidazole. Praying for Entyvio to get him some relief
I hope he has a good result like me. I actually had to have a ostomy put back to give my pouch a break and even then I got diversion colitis. So so sick, was in the hospital for almost 3 weeks. Anyway, for me at least Entyvio worked almost immediately thank the lord otherwise it was coming out! And I was able to reverse.
That is awesome to hear and very encouraging.
Allykat, How long were you on Remicade and Humira? Did you have a reaction or did they just not work for you?
I was never on Humira
I had 2 doses of remicade, I was so so sick from it, I lost feeling in my legs as well. That was scary, took 3 months to get out of my system, but it did keep me in remission for over 2 years just those 2 doses. I was so frighten to have to go on E but it was that or lose my pouch. So frustrating to have to go thru surgeries and still be sick.