bacteria overgrowth in J Pouch

FrancesMember

Just got back from Cleveland Clinic. Was very sick 102 fever for over 4 days. But I really thought it was the flu. So I waited 4 days and not any better. There was not any part of my body that did not ache horrible, still fever 102. Could not lift my head up or turn my head with out feeling like it was going to explode and terrible burning in my chest. My php sent me right to the ER and told me that he thought I might have viral meningitis, and wanted a spinal tap I think its called and a MRI on my head and a chest x ray. After masks for everyone they examined me and said I did not have viral meningitis and did not need a MRI. Took a chest x ray and it was good. Gave me an iv to rehydrate me and something to help with stomach and something for pain in my head. Well 1000.00 out of my pocket no one new what it was. Went back to php and he had no clue and gave me a steroid shot in arm. Went back in another 2 days and still not knowing what to do he gave me Ceftin 500mg 2 x a day for seven days. I started feeling better in two days all that any the antibiotic worked. Took it for 7 days and something amazing happened. I stopped leaking most of my day, my and no accidents and the pain was a lot less. so he gave a prescription for Rifaximin 550 mg a day. He said its the only antibiotic that you can be on long term with no side effects. He said he thinks its expensive about 7 dollars a pill times 2 a day so about so 420.00 a month. So I take it to my pharmacy and want them to tell me what it would be with my ins and its 660.00 a month and without 2400.00. I cant afford 660.00 and even if I could they would charge my ins 2400.00 and I would be in the donut hole within 2 months and will pay nothing and in 2 months I would have to pay 2400.00 OMG REALLY. I take a medicine that is 2000.00 a month and I found a compounding pharmacy that charges me 120.00 a month. So have to wait till tues when they open to call them to see if they can do it or how much will cost. I am truly devastated I am on SSD and I would have to sell my house.

So from the little I have read its something you have before you get pouchitis so maybe I will wait till I am really sick and they can give me the usually for pouchitus. I am at the end of my rope and it always always come down to money. I cant take it if the compounding pharmacy can make it for 100.00 or less.

He even said for me to go to Canada and get it maybe a third of what it is here. I said I don't have a passport and then he said maybe you can buy it on the internet. CRAZY.

well cant talk anymore so upset. Have medicine that I know it will help but I cant afford to get it, breaks my heart.

Thanks so much for letting me vent. Frances

9/1/177:56 PM

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marzMember

You can get rifaximin from canadian king pharmacy 1 (877) 745-9217.

your dr has to fax them the prescription, but you have to call them first and get an order number. The order number has to be on the prescription. It is so much cheaper than in US and it is exactly the same as xifaxan. I've been taking it for 3 yrs. They also sell it differently than when you get a script from cvs--i usually get 200-300 pills at a time. ALso, i have 3 refills. It takes about 3 weeks to receive it and it comes US mail.

They (canadian king) are very easy to work with and are very used to dealing with customers in the US.

9/1/179:09 PM

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Scott FMember

It's true that rifaximin tends to have fewer side effects than other antibiotics. OTOH bankrupting you might reasonably be considered a side effect. There are perfectly good, inexpensive medications for this. If one gives you bad side effects you can always try another one. My bacterial overgrowth was treated with doxycycline for a couple of months, It gave me a bit of a bellyache at first, but that passed, Perhaps you can ask the doctor what the second choice would be?

Good luck!

9/2/1712:49 AM

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FrancesMember

I don't see my posts and the last post someone wrote. Am I doing something wrong?

9/2/179:28 PM

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FrancesMember

marz posted:
You can get rifaximin from canadian king pharmacy 1 (877) 745-9217.
your dr has to fax them the prescription, but you have to call them first and get an order number. The order number has to be on the prescription. It is so much cheaper than in US and it is exactly the same as xifaxan. I've been taking it for 3 yrs. They also sell it differently than when you get a script from cvs--i usually get 200-300 pills at a time. ALso, i have 3 refills. It takes about 3 weeks to receive it and it comes US mail.
They (canadian king) are very easy to work with and are very used to dealing with customers in the US.

Sorry I feel like a fool its Rifaximin. I just got a call from compounding pharmacy and they don't have all the things to make it, so struck out. I do get medicine from them that the reg pharmacy wanted 2000.00 a month insane and I get it from them for 120.00 a month. Does my doctor have to change my prescription? Its written for Rifaximin 550mg for 60 pills for one month and 11 refills, to get like 2 or 3 hundred. Can they tell me over the phone how much it costs? How do you pay for it? Sorry to ask so many questions but never had to do this before. The doc said they might be expensive but 4400.00 a month or 660.00 a month till the donut hole and 4400.00 which nether I can afford. Im just over whelmed , scared and desperate.

Thank you so much for any info you can give me.

Frances

9/6/1711:36 AM

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FrancesMember

I did not say before that I changed my whole diet due to having Hashimoto about 9 weeks now. So I don't eat gluten, dairy free. caffeine free, and limit my soy it all effects my thyroid. I take so many vitamins, supplements and my j pouch expert at Cleveland clinic saw what I was taking and did not say anything. Anyone take supplements and if so what do you take for your j pouch?

Thanks so much Frances

9/6/1711:47 AM

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FrancesMember

Yes its me again I just looked up the Canadian king pharmacy for 50 pill not even a month worth and it 89 dollars, 100 pills is 120. It all goes by milligrams and of course mine is 550mg and its most expensive. I think I might have to message my doctor and see if there is other antibiotics that are cheaper. doxycycline was also suggested so I am going to look it up. Any suggestions will be greatly appreciated. I have 5 more days of ceftin 500mg that my php extended when I told him what was going on to give me time to see what I can do.

9/6/1712:11 PM

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WinterberryMember

France's, ask your doctor for a generic brand. Also, have you tried Costco pharmacy? You'll need a membership, but if the meds are cheaper if will be worth it.

9/6/172:08 PM

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FrancesMember

Unfortunately there is no generic for this medicine. Most of stores are about the same. No other way to say it I can't take on SS Disability so it's more than I make plain and simple. I have to e mail my specialist and ask for other that I can afford. He gave me 11 refills but he never told me how long I should take it. Really at end of my rope. My husband said we could take a loan put its 660 with my ins and 2400 a month without and go Inot donut hole in 3 months and who can afford 2400 a month. My last hope is him e mailing me something I can afford. But really doctors don't know howuch medicines cost. He said nothing when he gave this one to me. So if csnt take any he might suggest. I will try to do something else.

9/6/173:24 PM

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