I'd be curious to hear how this works for you.  I guess nobody else uses it, or at least, they didn't see the post.

I can't really tell yet. Since I'm also on antibiotics right now.  I'm hoping when I'm finished with the antibiotics that I was see a difference with RinVoq.

RondaC,

  I also have chronic pouchitis. Been struggling for quite some time. My GI just prescribed Rinvoq. I am optimistically happy as it works !!! Was on Entyvio with little to no success. I take Rinvoq with my daily Cipro with a 3 day Flagyl rotation every three weeks. I have not felt this well in a long time. However, not without its moments. But, I deem it as a success !!

BEST OF LUCK TO YOU !!!!

I hope you find the relief you seek !

-T

Entities did not work for me either.  Hopefully,  Rinvoq will. So far no side effects. So that's a plus

You should feel relief very quickly with Rinvoq. I have pouch inflammation big time due to UC/ Chrohn’s. Also, ask your GI about a maintenance of Cipro. I have an elongated pouch that allows bacteria to fester. The Cipro keeps it at bay. The Flagyl every three weeks clears any remaining bacteria out.
added bonus is that the Flagyl increases the effectiveness of the Rinvoq.

you might want to try the route I am taking.
GOOD LUCK !! Hang in there !! Try to remain optimistic even through the pain. The answer is out there !!!

-T

Thanks for the info

Hi Rhonda,

   Just checking. How has the Rinvoq been working ? Well I hope  ! I hope you received the relief that you need. Hang in there !

-T

It was working great until I got Covid.  I having burning  diarrhea now with cramping. I'm hoping things will get better soon.  Thanks

@RondaC posted:

It was working great until I got Covid.  I having burning  diarrhea now with cramping. I'm hoping things will get better soon.  Thanks

I'm assuming you're over the COVID now.  Did you take the anti-viral for covid?  That gave my husband some gut trouble.  How is the rinvoq working now?  I have seen that it's prescribed for Psoriatic arthritis, which I believe I might have right now, which commonly pairs with UC (or UC-related symptoms if you don't have a colon anymore). 

Yes I'm over Covid. No I did not take the antiviral medicine since the symptoms were just like a cold.  Nothing severe.  I am really pleased with Rinvoq. I was having chronic pouchitis.  I had a pouch scope 2 weeks ago and no inflammation was found.  So I'm really happy with the results plus no side effects.

Thanks for the update!  I'm considering this medication....

The company has a program of you quality to where you only pay $5 per bottle.

@RondaC posted:

The company has a program of you quality to where you only pay $5 per bottle.

What causes someone to qualify?

Having insurance.

Hi Ronda

its 2023so I’m pretty late regarding your post! I tried Rinvoq back in September 2022 for about 2,weeks however needed surgery so had to discontinue! I’ve started it again as of 3/28/2023 so too soon to kno! However would like to know if it’s still working for you! How long did it take to kick in! I too suffer from chronic pouchitis and nothing was helping

Yes I'm still happy with it.  I still have a flare every now and then but I don't have any pain just liquid output. I definitely feel better.

Chiming in late to this party. After a year of waiting for it to be approved in the US for Crohn's (my current diagnosis is post-colectomy Crohn's, not pouchitis) I started Rinvoq about 3 months ago (June 2023) and I started it only a few weeks after my last Entyvio infusion. I felt all right at the beginning -- nothing revolutionary, just not gross. Then, I think, the Entyvio started to wear off and I was having some pretty nasty symptoms -- wicked gas and bloating, and my butt was on fire most of the time. I started a cycle of Cipro and Augmentin, and it was a miracle. My BMs were down to 3-4/day (can't even remember a time when I went fewer than 8 times), I had no gastro symptoms and I felt really good. Now, 5 days past the antibiotics, the gas is back and I'm quickly starting to feel pretty rotten.

How ironic would it be if the Rinvoq (that bottle, when it arrives, is by far the most valuable thing in our home) is doing nothing, while garden variety antibiotics are what keeps me off the brink. I'm ready to accept that -- it would be a whole lot less money and hassle. I was taking Cipro and Augmentin 2x/day.