Have you been on cipro all this time? I am not sure about pain meds (tramadol I use at times), but you can try rotating antibiotics to see if that may also help. Was your crohn's diagnosed after your surgery? Did the humira ever help with the pouchitis for you?


Some of us take pentasa or a sulfa compound drug or rectal suppositories/enemas to also help with pouchitis.

I use Vicodin, but it also has Tylenol, even more than Norco. They make codeine without the Tylenol, but you'd have to take a hefty dose to equal Norco. There also is oxycodone, dilaudid, and morphine.

Are you taking the opiate for pain or bowel slowing? If not for pain, how about Paragoric?

Jan

I am on Humira for Crohn's Disease, it was discovered 22 years after I was diagnosed with UC and 12 years after my proctocolectomy. (I am almost positive it was Crohn's all along.) I used to be on flagyl and then switched to Cipro. I have tried going back to flagyl in the past few years but it does nothing. I am allergic to sulfa drugs. Rectal suppositories/enemas hurt more than help. Tramadol I take if I am working (I work 12 hr shifts as a nurse.) I take Norco at night to help with pain and to slow the motility down.
I found out about Paragoric about a yr ago. But, there were hardly any compounding pharmacies that would do it, and insurance doesn't cover it, and it's quite expensive.
I am going to talk to my GI next week and see what he recommends. Maybe adding a new antibiotic to the mix will help. Oxycodone is a possibility...especially if it has less or any tylenol in it. I am thinking I should be going to a pain doc for this.

Yeah, I think a pain management clinic is the way to go. But, it is a hassle because of the contract, frequent visits, etc. But, at least it becomes a routine thing. Oxycodone does not have any Tylenol in it. Have you looked into codeine, or is it too weak for you?

By the way, I am very impressed that you have continued to work with all those surgeries and complex diagnoses. Quite a resume!

Jan

Jan- It hasn't been easy, but without my income, we would be living at one of our parents' houses. And I refuse to go on disability, at least not right now. We want to adopt a baby in the next year or two. And I do love what I do.
Unfortunately, my "resume" isn't the type you wanna bring up to potential employers lol.
I will see what my GI thinks about my pain and diarrhea due to pouchitis. He knows I do not want a permanent ileostomy anytime soon. I am only 30, so body image is important to me. I am not sure if I have had just codeine, by itself. Oxycodone sounds promising. I don't want anything too harsh because if I get a bowel obstruction or have surgery in the future, I don't to be immune to dilaudid.
Not sure if you remember me...I haven't been on here in years. My name is Amber. I had to create a new account.

Are you sure it's not your Crohns in your pouch? I am confused? The tests always come back no to Crohns but the Docs say they see it in my pouch and it is Crohns! How do they know!? S

Every biopsy I have has shown no crohn's in my pouch...ulcers, but no crohn's. Of course, I have't been scoped or had a biopsy since June 2012..8 months ago