Hi everyone. I had a child in May 2013 and was hospitalized the next few years due to UC. Never heard of it prior to the hospital diagnoses. I had a three part j-pouch surgery from 2013-2015. It was an emergency situation and I had no choice in the matter. I have since been dealing with chronic pouchitis. I have tried a number of medications with no relief. I am allergic to remicade and most other medications. Cipro gave me terrible joint pain that I continue to have to this day even though the doctors told me the pain would subside once I was off of the medications. I have found no help using antibiotics or steroids. I do notice what foods irritate and avoid them. I have since been diagnosed with crohn's. The doctors want to put me on stelara, entyvio or other biologics. I am extremely hesitant due to the effects I have had taking other medications and knowing they truly don't know much about these medications and the long term side effects and once you start you need to continue them for life. Not only that the cost is ridiculous. I would hate to lose my insurance and have to try to cover that cost on my own. Does anyone have any advice on alternative ways to manage this diagnoses or have any words of wisdom in dealing with this? Thanks!
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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.