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I was sedated and told them I've had terrible pain in the past and didn't want to feel it. Well, I fell asleep which was fine with me!

I told the GI the enema insertion was painful this AM and the solution burned. I've never had this much difficulty before. I mentioned it to her and she said that's why we're taking a look.

She took biopsies, told me the pouch is inflammed, but wouldn't tell me what this might mean. She said we need to wait 7-10 days for the biopsy results.

Can someone give me the run down of which conditions relate to a pouch inflamation? I thought I could rule out cuffitis bc immodium and Gas X have cut my 10-20 BM's/day to 4-6/day. I've NEVER had that kind of success. Maybe I have no clue what I'm talking about though, so if someone could summarize which conditions consistute a pouch inflamation, I would be happy to search for prior post details.

She also called in VSL#3 to CVS, who told me my ins doesn't cover it and it will cost $500!! Is the best way to buy it at the link at the top of the forum? And it doesn't look like I need an Rx for it, right? Looks like it's under $90 for 30 days worth. I see there are a few choices, so I guess I need to talk to the GI to be sure I get the right one.

Thanks, in advance, for any feedback. You guys have been so amazingly helpful through all of this!
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Pouchitis is the same thing as Pouch inflammation. There are multiple causes of pouchitis, and that is where it gets tricky. If she only ordered probiotics (VSL#3), then the inflammation is not very serious. VSL#3 has been shown to help sustain remission or treat mild pouchitis, but not severe or very active pouchitis. Cuffitis usually involves some rectal bleeding, but not always.

If your doctor prescribed VSL#3DS, that is the double strength, and is available by prescription only. If you use the cheaper stuff, you will have to double the dose, or more, depending on which type you buy. You may have to contact your insurance directly to see if the DS type is covered.

That said, doctors don't fret about cost, insurance, etc. So, you will need to tell her about the cost and ask what the alternatives are. Generally, probiotics are for the long term, not just a short course, so you need something realistic that you can stick with and can afford. A treatment is no good if you cannot be compliant with it. There are ALWAYS alternatives, so don't accept it if she says that is all she can suggest.

The fact that your symptoms improved quickly with Imodium and Gas-X really does not rule out or in any particular diagnosis. It just means it was not severe. When I have full blown pouchitis, no amount of Imodium makes any difference.

Hope you find out soon what is going on, but I am sure you are happy things are improving with your self treatment!

Jan Smiler
Last edited by Jan Dollar
I had the same issue with insurance and VSL3. I got my doctor to write me a note for VSL3DS (prescription required) and why I needed it to treat active pouch inflammation and my husband fought this with his insurance (I am covered through his employer). They are now covering the prescription so you may be able to take this approach.

As far as pouch inflammation goes, my surgeon has always told me almost all patients have some active inflammation in their pouch (some may be asymptomatic though). Many do not even know it. I have pouchitis in my distal pouch and it really is not causing me any active symptoms at the moment and I have been off antibiotics for over 2 weeks (first time in 2 years).

The biopsies should indicate the level of inflammation and treatment will depend on that and the symptoms you are having. If you are
not in the bathroom as often with over the counter meds, that is probably helping your symptoms, but the inflammation may still be active in the pouch, and that they will try and treat most likely with a short course of antibiotics.
Ask the pharmacist if she ordered VSL#3DS. The DS is the only kind of probiotic my insurance company covers. If she did call in the DS then try jeane's way of getting it.

What ever you use it's best to refrigerate it ASAP, even if you buy it in an unrefrigerated bottle. You can also buy good ones that are refrigerated from the beginning like the VSL#3DS. Also VSL#3 pills are not near as potent as the DS with "900 Billion" in each serving.

There are many threads on here you can search for and other name brands are discussed. Greek yogurt is a yummy to get a bit of probiotics too.

Good Luck!
Thanks, Marie.

I called CVS and learned she called in VSL#3 and that my insurance *may* cover the DS with a letter submission of medical necessity from my GI. The other fun wrinkle is my husband's employer is switching to a new insurance company effective March 1. Therefore, by the time we jump through the hoops with our current insurance, we'll probably already be moved to the new carrier. We don't have the new carrier info or insurance cards yet, so who knows if they will cover it. Sheesh.

So I have a message in to my GI. I'll give her the scenerio and see if she recommends an alternative or maybe wait for the new plan. Given Jan's comments, I am encouraged that only VSL#3 was called in. Maybe there as an alternative, if needed, or we can just hold tight until we know what the story is with the new insurance.

As always, I thank all of you so much. If I didn't have this resource, I would probably be having a complete different convo with my to pay for a $500 med!
The DS requires a prescription, and thus most insurance plans cover it (or can be wrestled into submission). In my experience it's always been at the highest deductible tier. I've given up on getting it by mail order with my current insurance. I can get them to agree, but the time investment just isn't worth it. So I just get it at the pharmacy now.

Some docs will write for the maximum dose (4 DS packets/day) even if you might take less. If your deductible is on a per month basis this can lower the cost considerably. At this point, though, you just need them to say "yes." I take the full four packets.
It would be nice if you could start taking it now. I called my insurance company directly and asked if it was covered. I'd suggest you call your soon to be former insurance company and see if the DS is covered.

Then a call to your doctor's nurse, asking for it to be called in with the DS might be all you need to do.

If CVS is anything like Walgreens, the pharmacy you go to may have never had it prescribed for someone there before. I have to give mine a few days to get it in, they don't have it on hand.

Scott F. has some good ideas and I'm wondering if you need to take more than one packet a day. The dose information says from 1/2 to 4 packets a day.

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