Are you taking any medications for the pouchitis?

kathy

Can you take Imodium or something like it and/or a metamucil product? I take metamucil in gel caps and I can't stand mixing and drinking it. The fiber should bulk up your stools, we are to do metamucil with less water so it'll soak up more inside.

Imodium should slow things down to let the metamucil have more time to soak things up.

Have you ever tried digestive enzymes for gas?

You probably know all of this, I posted just in case. I really feel for you.

That sounds exactly like my pouchitis symptoms. You'll have to experiment to find what works best for you. I get immediate relief from Cipro (and I now just stay on it all the time). I use Metamucil twice daily, but found the capsules didn't distribute adequately, so I put up with the powder. I mix VSL#3 DS into greek yogurt (two packets twice daily). I take one Lomotil at bedtime. And I drink plenty of water to avoid dehydration - I don't think you can safely fight diarrhea by withholding water. Good luck!

You are right Scott. I should have worded it as not as much fluid when you are actually swallowing the metamucil. What's difference if you drink fluids then or half an hour later?

How did you figure out to take so many packets of VSL#3DS? I take one, have chronic cuffitis and just a wee bit of pouch inflammation, IPS and am still in daily pain with the cuffitis under control. The last time I was scoped
/biopsies tested was 8 months ago.

No one prescribed the VSL #3DS for me, I asked my Internist to prescribe it and she did. I take 1 packet a day, I briefly took an antibiotic and she told me to take more VSL - to ward off c-diff. I took 2 packets and at 2 Greek yogurts vs 1 a day. I'm back to a packet VSL#3DS and a grek yogurt daily.

If you know the magic dosing formula can you please share it?

Dosing VSL #3 isn't a delicate matter, since it has essentially no toxicity (though it seems to give some people gas). I maxed it out at 4 packets/day, and I credit it with managing my pouchitis for a year or two. I've since had to add Cipro, which makes the VSL more valuable rather than less. I suspect most of the bacteria are killed in the stomach. If I had to pay the retail price I would find the minimum dose that worked. Since my prescription copay is the same per month at any dose, I have no financial incentive to find the lowest effective dose. My GI goes along with whatever is comfortable for me.

Here's the dosing information from the VSL web site:

For Adults:
VSL#3 Capsules (112.5 billion in each): Consume 2-8 capsules daily or as directed
VSL#3 Packets (450 billion in each): Consume 1-8 packets daily or as directed
VSL#3-DS Packets (900 billion in each): Consume 1-4 packets daily or as directed

Thanks Scott F.,
I'll keep to one packet of the DS daily because as far a I know I have not had pouchitis yet and I have a high deductible insurance. I'm glad that it's covered and goes against my deductible.

I pay the full insurance adjusted amount on all of our medical until we pass $4,500 annually. I hit that last year by the end of April. Hopefully I won't be having any flex pouch scopes, CTscans or anything like that by then this year.

Deductibles are strange things. They're designed to encourage much more limited use of health care. If, OTOH, you are fairly confident that you will exceed your deductible during the year then it should have *no* influence on your health care decisions. You do still have to consider copays, but the deductible itself is meaningless unless you can stay below it. And in my case the copays are the same for a four packets/day Rx as one packet/day. That would be true for many folks, since copays are frequently tied to a "month's supply."

We have a Health Savings Account (HSA) with a lower cost insurance because the deductible is so high. I get to the deductible with my medications, blood tests, and office visits without any tests. The purpose of the plan is most people don't get above the deductible and therefore the insurance cost is cheaper. I'm glad I didn't have to apply as I have the wonderful pre-existing conditions. My husband id retired and they totally changed the insurance plan to this - we had no choice.

I still watch the costs and caught a $4,000 overcharge on one of my hospital bills, which the insurance company was glad about. I feel we all need to keep costs down. I had a sleeping pill that was $6 each and I asked my doctor to give me a different one, the goal is to get to sleep and the new one works just as well.

So after we pay out $4,500 there are no copays the insurance company pays 100%. As we put money in our HSA it is deductible on page one of the Federal Income tax return so the $4,500 we pay out is tax deductible.

The monthly prescription is actually for 2 boxes or 40 servings of VSL#3DS. So when I feel the need, like when taking antibiotics I have them. If I had pouchitis I would be taking more servings too. I'm using it as prevention plus there were no good bacteria naturally growing in the j-pouch at take down. I guess there might be some growing by now, 2 years.

I also have already had a difficult case of c-diff since take down so I want the probiotics to ward off the bad c-diff bacteria as well.