Looking for advice

I followed a similar path as you and have now been on Remicade for 3 years.  It improved my condition considerably. If you have tried the other frontline treatments and they have not worked, you will be on biological drugs sooner or later. Usually it does happen that voodoo treatments get tried first while biologics are resisted, the voodoo treatments don’t work, the patient’s condition deteriorates, and the patient is then forced to go on biologics. If antibiotics, probiotics, and steroids haven’t worked, it’s probably inevitable. Pretty much everything else that is out there is voodoo science. Like hydrogen peroxide enemas, cleanses, oregano oil, turmeric, etc. It’s your body and your decision but I think it’s inevitable you will be on biologics.

One other non-voodoo treatment that could help is Pepto Bismol, which has potent bactericidal properties. Good luck.

I’m trying to get my Insurance Company to pay for it. Hopefully they will but Xifaxin is an antibiotic that goes straight to the GI tract ... in your case your j-pouch. It is not designed for that but it works. I know people that have been on it for years without a problem. Good Luck!

I basically agree with CT. You don’t say which antibiotics you’ve tried, so it may well be worth running through the best candidates, particularly Xifaxan (rifaximin), if you haven’t already tried them. While it sounds like you’ve had some miserable adverse reactions to medications, this is a poor way to predict how well other unrelated medications will go for you. 

The other thing you didn't mention is if you have tried probiotics? I was having problems with reoccurring pouchitis, the probiotics seem to be keeping me off antibiotics and so far pouchitis hasn't come back. I currently take 1 packet of vsl3 daily.

Good luck, sorry to hear that you ended up with chrons.

Your situation sounds so similar to mine with UC after childbirth, a crohn's diagnosis and chronic pouchitis. I am currently on entyvio after trying Remicade  and Humira.  When I went on Remicade and now with Entyvio, they signed me up for a program that reduces the cost of these medications when insurance, deductibles, etc. make it unaffordable to us normal people. I think it got it down to $5.00 but don't quote me.  With the new year coming and starting over with  my deductible, I'm so glad they have that in place otherwise over 6 grand a shot would put us under.

I'd suggest at least trying a different biologic to try and get relief. Just because you're allergic to one, doesn't yet mean that another can't help. Living with the effects of chronic pouchitis is no fun at all.

Still Standing is correct. For Remicade, that program is called Remistart. Not only does it reduce the cost, but the payments made by Remistart all go towards your deductible. Last year, although I had a $3000 deductible, all that I had to pay for Remicade (for the year) was a $414 infusion time on my first infusion and the $5 copays. After the first infusion, my deductible was exhausted, because Remicade is retailing at $10,000.00 per infusion in my area (Connecticut).

For this reason, this year I increased to a $5000 deductible. We determined one infusion will shoot the deductible out and I will only end up out of pocket around $420. Also, Anthem has approved me for a full year of Remicade through October 31, 2019, which is when the current health plan year expires with Anthem.