Hey all,I've had pouchitis very bad in the past, I now keep it under control.Here is what i take to stay in remission.

VSL#3
Fish oil (A MUST!)
Xifaxan
I inject 40ml of Rowasa enema (in morning)
Inject 40ml of Hyrocortisone Enema(afternoon)
Inject 40ml Rowasa enema (night)
Inject 40 ml Hydrocortisone enema (before bed)
(each time I inject I lay down and raise my legs up to let the meds drip downward)

This keeps me in remission ,if I flare up with pouchitis i take Alinia (antibiotic) or flagyl with my meds.

Thank you for ths post Drew . I hope others continue to post on how they stay in remission from pouchitis.

Is your GI doc/surgeon concerned about the long term use of the hydrocortisone enemas? Is this less worrisome than the foam that lies directly on the rectal cuff? I keep hearing about thinning of the skin in the anal area from the steriods and my surgeon is reluctant to prescribe anything long term for anal usage that contains steriods for this reason. Also, how many packets of VSL a day do you take (1/2)?

Why is fish oil a must? How is it helping you?

This is what I've been doing....

Cut sugar and carbs. More whole grains and whole raw fruit and veggies, grass fed meats. Raise your vit D levels to 50-60. Start thinking outside the box.

1. VSL#3D 2-4 packets a day
2. Lacto FlamX ( 18 billion lactobacillus plantarum ) one a day
3. Zinc A. G. ( GI friendly ) 20 mg
4. Magnesium Malate Chelate 500 mg
5. COQ10 200 mg
6. Resveratrol 250 mg
7. Vit D 10K 3 x a week
8. EPA- DHA 6:1 ( Fish oil ) 2 a day
9. New Chapter 40 plus Woman whole food multi vitamins ( I picked this cause it has tumeric and other inflamatory things in it -doctor said it was a great choice )
10. New Chapter Berry Greens
11. manuka honey one teaspoon

canassa (3 suppositories at night )
occasionally protofoam

Ive stayed in remission the longest since i started taking fishoil,..also ..ive been using hydrocortisone enema for 2 years with no side effects..my dr says it will not hurt the pouch..he actually says (hell no it wont) when i ask him..im only using 40ml twice a day. I also take 2 of the vsl#3 daily (it seems to work well)

Drew,
How much fish oil do you take and what type?

I take 2 pills daily of fish oil(100mgs each) the brand is members mark.

You say "inject" the enema, what type of apparatus are you using?

Well I have been in remission fro a long time- but had cuffitis. Had a heat wave had watermelon- stress and pouchitis- Need to stay away from any sugars and relax more- What also may have brought this on is swimming in a pool that it's filter was not working got out as soon as I realized this!

@ chiromancer,.i use an injector that my dr gave me, i had to modify it with a small tube on the end..it looks like one of those injectors used for basting turkeys lol

I haven't had a problem with Pouchitis, yet, and I know fish oil is good for you, but I've noticed everytime I take it and similiar supplements, I spend twice as much time in the bathroom than usual. I think I had this problem when I had my colon also. Does anyone else have this problem?

Twighlight,

I do not take fish oil at the moment, but have noticed the extra supplements I do take do cause extra trips to the bathroom for me also. I recently purchased prenatal vitamins in capsule form and vitamin C in capsule form too and could not take them for this reason. Since they were capsule form I was wondering if that may have been my issue.

I was told several years ago by my surgeon to not take anything in capsule form, because the shape of the capsule can "catch" in the crook of my J-pouch and cause food to get stuck. This advice was given after I was hospitalized with Pouchitis. So, any time throughout the years that I have shopped for vitamins or gotten a prescription, I'm sure to ask my dr. for a tablet form and avoid capsules altogether.

why fish oil everyone is asking -
because it's high in Omega 3 which has been known for helping to reduce inflammation in a lot of cases

The capsule issue makes no sense to me, since capsules are gelatin and dissolve shortly after the stomach and don't reach the pouch intact. At least that is what they do normally. Perhaps if you have something specific that is unique to you that makes you different, that is something else. I have been taking fish oil gel tabs for years without incident. My Imodium is in capsule form too and I have been taking it for 16 years.

Jan