That sounds horrible.  If it’s Pouchitis - Cipro and Flagyl in combination are the go to drugs

I prefer to start with one antibiotic. It’s usually enough, and you’re not left in a decision-making mess if you have troublesome side effects. I had better luck with Cipro than Flagyl, and you’ve had successful results from Cipro in the past. So something like Cipro 500 mg twice a day for 10-14 days should work. If all goes well you should start to feel better very quickly, perhaps in a day or two. Good luck!

Smart advice Scott

You have not seen a gastro in 7-8 years???!!!?!?! That is dangerous!!! You have to get seen ASAP! You especially need a pouchsoscopy! You are WAYYY overdue, please get seen right away!

Thank you all!

lauren of Emerald City, I had no idea I needed to be seen if no issues (until now) and thatit is dangerous. Yikes! How often should we have pouchoscopies?

@SallyStew posted:

Thank you all!

lauren of Emerald City, I had no idea I needed to be seen if no issues (until now) and thatit is dangerous. Yikes! How often should we have pouchoscopies?

Sally, many J-pouchers (quite possibly most) do just fine without regular visits or pouchoscopies. While it can be inconvenient (and sometimes extremely so) to have no GI doctor to call on if you run into trouble, that's hardly dangerous. Folks whose J-pouches were created because of dysplasia, FAP, or cancer probably ought to have regular pouchoscopies to screen for cancer in the rectal cuff - such cancers are rare but not unheard of. Other folks work out a pouchoscopy frequency that suits them (perhaps in consultation with their doctors). Sometimes that frequency is "only if symptoms indicate that it's necessary." That's the frequency I've settled on, and my GI is fine with it.

Thank you for your input. I appreciate it.
I am with an HMO and they are very difficult to get referrals for gi, etc. I requested one last week and the primary said he didn't think it would go through given my symptoms!  It was incredulous. Still awaiting my tesponse from tidah requesting cipro. We'll see.

Thank you and the others for your help.

Sally, it sounds like your HMO (or your primary) may be screwing up a fundamental responsibility. If your primary is not familiar with your condition (as your original post says) then referral (or perhaps educating himself/herself promptly) is the only reasonable path. The approach of getting your prescription advice on a support forum from anonymous people, and then feeding it to an ignorant primary, who hopefully agrees to write it, is indefensible. Good luck!

@SallyStew posted:

Thank you all!

lauren of Emerald City, I had no idea I needed to be seen if no issues (until now) and thatit is dangerous. Yikes! How often should we have pouchoscopies?

SallyStew: There are some people on here that disagree with everything I say and a lot of people on here are stuck in their ways no matter what you say to them, those people I like to leave alone as you can see. I like to talk to people that are willing to learn and that are open.

People that have problems need to get a pouchoscopy every year, no matter what. Every J-poucher that is not having problems, needs to get a pouchoscopy every 1-3 years, that is a fact. I have confirmed that with many doctors. You cannot always feel a problem and you cannot always feel cancer. A lot of people often get help when its too late. That every 1-3 year marker for people that are not having problems is a safe method to catch potential problems. I have not had problems since 2014. I get a pouchoscopy every 3 years, that is the max time for normal folks. Doctors have stated that and its cited on the internet by doctors/researchers too.

You have not been seen in 7-8 years possibly more if you have not had a pouchoscopy. I would strongly recommend that you get a pouchoscopy done ASAP, especially since you possibly have pouchitis right now. If everything is fine in the future, get a pouchoscopy at least every 1-3 years, I personally wait 3 years; 3 years is the Max time. Please listen to me, you cannot always feel a problem, get checked out.

Hi, SallyStew.

Try not to worry or be scared while you are waiting for your prescription and for your referral to a gastroenterologist. If you haven't had significant health issues (other than the bout of pouchitis) in so many years then you are likely one of those J pouchers who get by and have been lucky. There are many members who haven't had a pouchoscopy in longer than you. It is different for everyone. Hopefully they will chime in so you will hear both sides.

However, now that you are experiencing issues nightly, it's time for a checkup. Learn from others and educate yourself, and become the boss of your own health. Make a list of things you will need to do to move this appointment forward, including telling your primary that you will need, and expect, his help in this. It is his duty of care. Set yourself a schedule of when to call your primary to move him or his office along and what you want to say. Let him see that you are concerned about this new nightly problem and that you have clear expectations of him. It is his duty (his oath) to learn and to figure out how best to address your general health and j pouch, especially helping you get to an experienced gastroenterologist to look after your pouch when you have issues. Together you and a doctor will determine how often you need a pouchoscopy going forward. Try not to worry. Fear, anxiety, stress, and regret can do a lot of harm to your health. Set your goals and move forward. Let us know how you come along.