Very sorry to hear about the menengioma.  I alternated between Flagyl and cipro for several years until it just wasn’t as effective anymore.  Shen put me on tindamax and that helped for awhile.  But the latest and most successful drug for pouchitis patients with PSC seems to be Vancomycin.  Dr Shen put me on Vancomycin in August and I have been doing very well.  Pouchitis seems to not be an issue and my liver enzymes were totally normal for the first time in years when I had them checked last month.  
I was told that Shen is advising all GI docs to prescribe it indefinitely for all patients with Pouchitis and PSC.  It is an expensive drug though so hopefully your insurance will cover it.

I just had surgery to remove my meningioma. I was diagnosed with chronic pouchitis within a few years of my takedown surgery (1995). Medicine given—Flagyl.

So you had a meningioma too? That seems very coincidental being you were on the exact same meds as I. They tell me there is no correlation. I think they're  wrong.

I have been on Vancomycin in the past. Didn't take care of it. I've tried so many differently things it's hard to remember them all. Maybe I should try it again? Thanks for your feedback!

If your pouchitis does not cleared up in the years to come, are you open to getting a permanent ileostomy???

I was thinking about it. My GI had reached out to the surgical team. Before I could even meet with them the Pandemic hit. Nobody seeing any patients,at that point. Since the Pandemic I have had other ongoing health issues. One being Streo B which attacked my tonsils. Right after Ibturned 60 I had them removed. It's been a tough recovery followed by brain swelling from the Cyberknife and landed me in the ICU for 4 days in Sept. Just got out of the hospital a week ago for a kidney stone too big to pass. Stent out in and now I have 2 more procedures...1 to break up the stone and 1 to remove the stent. It's ALWAYS something. Can't even think about another surgery right now.

@LaurieK714 posted:

I was thinking about it. My GI had reached out to the surgical team. Before I could even meet with them the Pandemic hit. Nobody seeing any patients,at that point. Since the Pandemic I have had other ongoing health issues. One being Streo B which attacked my tonsils. Right after Ibturned 60 I had them removed. It's been a tough recovery followed by brain swelling from the Cyberknife and landed me in the ICU for 4 days in Sept. Just got out of the hospital a week ago for a kidney stone too big to pass. Stent out in and now I have 2 more procedures...1 to break up the stone and 1 to remove the stent. It's ALWAYS something. Can't even think about another surgery right now.

I am sorry you are suffering soo much! Sometimes we have big trials and tribulations in life. I know its not fair but I believe you can overcome anything sent your way, do not let anything beat you because you are strong obviously, I know you can get through this. If you need an ilesotomy in the future, I know you will rock it and be cool with it!

For kidney stone prevention, I would ask your doctor about putting you on "Pottasium Citrate, 1080mg 4X a day (1 pill Every 4-6hours)* My dad is on that to prevent big kidney stones and he has been fine with that dosage for years! He had really big kidney stones too and that took them away and prevented them, its definitely worth it, and drink plenty of water too

I speak with my GI tomorrow. I'll  be sure to mention that. Thanks for the tip!

@LaurieK714 posted:

I speak with my GI tomorrow. I'll  be sure to mention that. Thanks for the tip!

How did it go???

She wasn't the one to ask. I meet with the urologist on Friday. Makes perfect sense that this would be the person to ask. I wrote it down so I don't forget the name and dosage. Thanks so much!

@LaurieK714 posted:

She wasn't the one to ask. I meet with the urologist on Friday. Makes perfect sense that this would be the person to ask. I wrote it down so I don't forget the name and dosage. Thanks so much!

Yeah, a urologist prescribed my dad's pottasium, makes sense; I was just hoping the gastro would have done it so you could get protected early lol. Okay, get back to me on Friday and let me know how it goes

Will do. The GI seemed very alarmed that there was talk of me possibly rupturing if the stone had tried to pass. The more alarmed she seemed the more it bothered me. 😬

@LaurieK714 posted:

Will do. The GI seemed very alarmed that there was talk of me possibly rupturing if the stone had tried to pass. The more alarmed she seemed the more it bothered me. 😬

OMG!!! That sounds scary! THANK GOD you are okay

I'm  just glad I followed my instincts to go to the ER. My husband was questioning if it was really necessary? But with all my health issues...it's  always been the right move. Too many things could be wrong! 😬

@LaurieK714 posted:

I'm  just glad I followed my instincts to go to the ER. My husband was questioning if it was really necessary? But with all my health issues...it's  always been the right move. Too many things could be wrong! 😬

I agree too! We should all trust our instincts, especially us women! Is this your first time having kidney stones??/

No...I've had a couple kidney stones in the past. Not since 2018 though. I had one procedure for a retrieval of one and the stone wasn't even there by the time they went in. What a waste. I was in so much pain afterwards for nothing.

@LaurieK714 posted:

No...I've had a couple kidney stones in the past. Not since 2018 though. I had one procedure for a retrieval of one and the stone wasn't even there by the time they went in. What a waste. I was in so much pain afterwards for nothing.

Okay perfect! You can use that statement of having them in the past as a good explanation on why you need the "Pottasium Citrate 1080- 4X a day" Definitely make sure you bring that up on Friday about having them in the past, that will for sure help your case!

@LaurieK714 posted:

No...I've had a couple kidney stones in the past. Not since 2018 though. I had one procedure for a retrieval of one and the stone wasn't even there by the time they went in. What a waste. I was in so much pain afterwards for nothing.

Hey!!! How did your appointment go today???