chronic pouchitis and lack of energy

I can’t tell from your post how well the Flagyl is working on your pouchitis symptoms. I’m guessing not so well if you’re constantly dehydrated. Uncontrolled pouchitis can also disrupt sleep, an obvious cause of fatigue. Flagyl doesn’t have fatigue listed as a prominent side effect. The dehydration is the most likely cause of the fatigue, and really does need to be managed as soon as you can find a satisfactory way to do so (have you tried rehydration solutions?). Being chronically ill can also cause fatigue, as can depression. Have you tried Cipro? Would you prefer that to biologics?

I have only been on flagyl for a few days tho I have seen some improvements on how many BM I have and I do feel somewhat better, Im still super tired constantly. I have not tried Cipro but as far as my research goes I dont relly want to do biologics. I moved from Puerto Rico to the US and didnt seek treatment for a few years. And I feel like my previous doctors didnt infrom me as much as I would’ve liked. New doctor started from scratch so everything is sort of in the air right now.She said now is matter of trying so save the pouch. I had a balloon dilation about a week ago for the stricture. And scheduled le to inject the stricture site with a medication to keep the tissue soft next week and talk about the pros and cons of biologics. I have not tried rehydration solutions. Im a little at a loss when it comes to being fully informed which is not good.

I think you are headed towards biologics although it's not clear how many other antibiotics you tried. I used every antibiotic known to human civilization for 20 years and Remicade for 5 years and Remicade has been a more effective treatment than antibiotics were. At the end of my 20 year run on antibiotics I ended up with a stricture at the J Pouch inlet, and there were attritional changes in the inflammation over the course of time observed on scopes. It's clear I was losing ground in my fight on the inflammation even though antibiotics were a band aid for the symptoms. Remicade was a game changer however. You need something to change the game soon because the battle isn't going well for you. Good luck guy.

How is Remicade a game changer?

By eliminating inflammation in the Pouch appearing on annual scopes.  That is kind of the objective in taking any medication to treat pouchitis, isn't it?  The antibiotics work on the symptoms more than the inflammation; biologics work on the inflammation and the symptoms.

Both antibiotics and biologics reduce the inflammation of pouchitis, when they work. They use entirely different mechanisms. Neither is directly treating symptoms. People may have greater or lesser success with either approach.

I think you definitely should possibly try Remicade. I noticed that Greek Yogurt often clears up a lot of problems along with Oatmeal. I have been doing the Greek Yogurt thing and Oatmeal for a long time and I never had pouchitis.

Hydration methods: Drinking water: before, during, and after every meal helped me tremendously with hydration. Fruit juices, V8 juice, orange juice, Gatorade, pedialyte is great too.

Hope you get better dear

Hi, I have been on biologics for a few years, but as I'm in Australia the names are slightly different. They are funded under the public health system with requests every 6 months from my specialist. But they won't fund it for pouchitis only arthritis. The fortunate side effect has been a big improvement of the pouchitis symptoms. I wonder if the medication is funded in the USA or is it an out of pocket expense? I hope you find the biologics help you too.

@Glenys D posted:

Hi, I have been on biologics for a few years, but as I'm in Australia the names are slightly different. They are funded under the public health system with requests every 6 months from my specialist. But they won't fund it for pouchitis only arthritis. The fortunate side effect has been a big improvement of the pouchitis symptoms. I wonder if the medication is funded in the USA or is it an out of pocket expense? I hope you find the biologics help you too.

SOrry to hear about the funding process in Aussie. Are you paying out of pocket for your biologics in Aussie???

@Glenys D posted:

Hi, I have been on biologics for a few years, but as I'm in Australia the names are slightly different. They are funded under the public health system with requests every 6 months from my specialist. But they won't fund it for pouchitis only arthritis. The fortunate side effect has been a big improvement of the pouchitis symptoms. I wonder if the medication is funded in the USA or is it an out of pocket expense? I hope you find the biologics help you too.

The funding in the USA is a mixed bag. The medications are generally covered for folks with health insurance, *but* 1) the insurance companies often deny expensive medications, and the appeals process is challenging, and 2) there are usually significant out-of-pocket expenses for deductibles and co-pays. OTOH the drug companies often have discount programs to offset those out-of-pocket expenses.

Pouchitis is obscure enough that the insurance companies sometimes don’t seem to quite know what it is.

GlenysD,

Remicade is covered in the USA by most private health insurers for treatment of any bowel inflammation (including UC as well as Pouchitis), and the Remistart credit card you get from the manufacturer reduces copays and out of pocket costs very substantially. The retail cost of Remicade per infusion is around $10,000 where I live, which is Connecticut. My average combined out of pocket/deductible in past years, for Remicade only, was around $425 for the year. However what's important to know is that on a high deductible plan like I am on - which is $5,000- the payments made by Remistart count as out of pocket payments, because they are legally made on my behalf. Therefore by planning a Remicade infusion as soon after my policy starts on November 1 as possible, the Remistart payments shoot my deductible out after one infusion and I only have to pay $60 copays for each infusion thereafter. Therefore the medication is really not costing me all that much. And once my deductible is shot I am just paying copays for all other treatment. It comes out to $425 a year on average which is not bad, especially since my firm is paying for my monthly insurance premium which is over $1,000 per month.

So Remicade results in a winfall to me if I choose the highest deductible plans.

@CTBarrister Hopefully the Remistart program will continue for you as it has. The name alone suggests that they are hoping to extract more money once enough people are started on Remicade and reluctant to stop. They may not actually do that, of course.

Scott,

I am not sure exactly what you are implying but I have been on the Remistart program for 5 years. At the very beginning of the 5 years they sent me a Remistart card that looks very much like a Master Card. I then turned it over to my doctor. I never actually used that credit card for anything and as far as I know, all that it "purchases" is Remicade infusion debt. I believe I may have gotten a renewal card around 2 years ago. I again turned it over to the billing manager of my GI office as per her request.  I have never actually used that card for anything, and I do not even physically possess the card, my GI's office has it. I am not aware of it purchasing anything other than Remicade infusion debt and I am not aware of interest or service fees on that card. It's not like I can go out and buy a car with it and rack up interest, it doesn't work that way as I understand it.

On a separate but somewhat related issue, all of my debt to my GI office is paid with an HSA card which is actually a debit card. In 2020 I took the maximum permitted deduction of $3550 allowed by law and put those monies in my HSA account, where my current balance is now about $3000. I should warn everyone that you should keep good records on your HSA account distributions  because the IRS audited my HSA distributions for 2018. But I was able to prove to the IRS through my records that every penny of every distribution from my HSA account in 2018 was for medical and dental expenses. I only had around $2000 in distributions that year so in my opinion it was a ridiculous waste of time by the IRS chasing after small money with someone who is obeying the law and not distributing money to himself. In fact when I go to the pharmacy I am not even sure I could get cash back on that HSA card even if I wanted to.

@CTBarrister I understand that the Remistart program has been durable and extremely beneficial for you, and I hope it stays that way. I happily use the manufacturer’s “coupons” for several prescription medications in the same way, though not (yet) to the tune of tens of thousands of dollars. My point is simply that the drug company will maintain the program only as long as (and in a way that) they consider it net beneficial to them, and a variety of factors could change the current situation in an ugly way. The purpose of the coupons/discounts is to make us less price conscious about grossly overpriced products, and defeat the co-pays that are designed in part to make us more careful consumers with skin in the game (by refunding the skin). Neither the drug companies nor the insurance companies occupy the moral high ground here.