Hi all. This is the first time ive been to this website. I came here looking for a few fresh ideas on Pouchtis and thought i might be able to share some of my findings with you all. Below is a post that i put on another IBD forum a few years back but it is still just as relevant today.

Well before I start here is a bit of history. I had my pouch surgeries about 7 years ago after a 6 year battle with UC. After the surgery was complete the pouchitis soon set in which was firstly controlled with Flagyl. After a while the Flagyl started to become ineffective even at higher dosages so I was swapped over to Ciproxin which also kept it under control for a few months before becoming ineffective. After seeing a specialist he put me onto half doses of both Flagyl and Cipro (apparently the two drugs kill different strains of bacteria and Pouchitis is caused by more than one strain) which kept the pouchitis under control but I found myself still flaring every 3 or 4 weeks and having to go on ridiculously high doses of both drugs to bring the flare ups under control. It was at this stage that I became determined to get off the antibiotics and here are my findings so far on the ins and outs of pouchitis.

FISH OIL:
Fish Oil definitely plays a major roll on the management of Pouchitis, If you’ve tried fish oil before and had no luck then please read on. There is recent research that proves Fish Oil to be effective as an anti inflammatory up to 9grams a day but there are a lot of thing to consider along with this evidence if you plan on using fish oil to treat Pouchitis. Firstly we can assume that any research done so far, used subjects that actually have a colon. So it was my thinking that a person without a colon would need higher dosages to get the same benefits due to not having the absorption capabilities of a full digestive system. So I now take 12 fish oil capsules a day and the benefits have been unbelievable. Once I had established fish oil to be such a help I still found myself having the occasional bout of pouchitis. I was just in the habit of buying the cheapest fish oil I could find at the super market or chemist but soon came to realize that some brands work well to combat pouchitis and some don’t work at all and I've even found some brands to cause diarrhea. After a little more research I found out that not all fish oil is the same. One of the most important things that influences how effective fish oil is as an anti inflammatory is how much light it has been exposed to in the manufacturing process. Some manufacturers of fish oil have systems in place to ensure that their fish oil doesn’t come in contact with too much light, other manufacturers (including some quite big name vitamin companies) do not. Basically put, you get what you pay for when it comes to fish oil so buy a good quality one and don’t give up after using only one brand. SINCE WRITING THIS I HAVE LEARNED A LITTLE MORE ABOUT FISH OIL. THERE ARE THREE THINGS THAT EFFECT THE POTENCY OF FISH OIL. THESE ARE EXPOSURE TO HEAT, LIGHT, AND OXYGEN. THE PROCESS OF PUTTING FISH OIL IN TO CAPSULES EXPOSES THE OIL E ALL OF THESE THINGS. I NOW TAKE A GOOD QUALITY LIQUID FISH OIL SO THAT I KNOW IT HASN'T BEEN PUT THROUGH AN ENCAPSULATION PROCESS.

PROBIOTICS:
Ok when it comes to probiotics I now consider myself a bit of an expert. First up I tried VSL#3 which is well known as the strongest probiotic on the planet. While there was a noticeable difference in pouch performance while on VSL#3 I noticed no different whether I was taking one sachet a day or 3 sachets a day. I also had a local pharmacy compound VSL#3 into suppositories which I trialed for a month which also didn’t prove any more successful that taking it orally. I then tried growing my own probiotics which was a lot easier than it sounds but still didn’t lead to any major breakthroughs. In the end I have settled on a probiotic called Inner Health Plus. It is reasonably prices and taking three of them a day gives me the same results as three VSL#3 sachets a day. Overall it seems to me that the numbers of bacteria and the number of strains don’t play as big a part as I first thought. Also I found in more important to have a constant flow of probiotics through the pouch over a 24 hour period rather than a huge dose once a day Simply go and get yourself a good quality probiotic and take it regularly.

TUMERIC
Before I tell you my findings on Tumeric (can be spelled Turmeric depending on where you come from) just let me say that I've never been a huge fan of natural medicine but my findings in this area have been too great for me to ignore. Turmeric has by far given me the best results for keeping my pouchitis under control. After reading an article about new trials being done for treating pouchitis with Tumeric I figured “I can do that myself.” I went to the supermarket and brought myself some Tumeric which I then put into empty gel capsules I purchased from the chemist. I started by taking 4 of the capsules a day and within two days the effects were very noticable. The output from my pouch was much thicker and I was going to the toilet less time throughout the day. As any fellow pouchies out there will know, its pretty obvious when there is a change in pouch performance because our toilet routines don't normally vary that much from day to day. Once I'd noticed this difference I upped the dose to 6 capsules a day and this is where things became very interesting. I was able to stop taking any thickeners (immodium etc) and my toilet trips were still a lot less for each day.
Well since starting the Tumeric tablets I now have my antibiotic doses down to half what they were (dosages I used to rely on to keep things under control) and am still reducing them. I started with the tumeric about 6 months ago and wanted to make sure I was certain about the Tumeric before posting the information here. About half way through this six month period I stopped the Tumeric just to see what would happen. You guessed....my pouchitis flared up again within a few days and I had to put my antibiotic dosages up again to get it under control. I now take 8 Tumeric capsules (roughly 500mg in each) a day and since starting it I have not had a flare up while on Tumeric.

So in conclusion, if you haven't tried any of the above methods for controlling your pouchitis I strongly suggest you give them a go. They are all relatively inexpensive and from my experience relatively harmless. For making home made capsules I found the cheapest source of capsules to be an ebay store which was also able to supply me a cheap capsule makes called a cap-m-quik capsule maker. I have found the most benificial brand of fish oil to be Melrose brand (it has lemon juice in it which counteracts the fishy taste perfectly) which I buy at my local health food store. If anyone has any further questions its probably best to email me at waldog2000@hotmail.com as I don't get on here much. Hope this all helps some of you as much as its has helped me. Good luck fellow pouchites.....Wally

Thanks for taking the time to share all of the information you've gathered. I decided to start with taking my probiotic more spread out over the course of day like you suggested. It's only been three days, but it seems to have made a big difference. I was putting 1 to 2 packets in yogurt either once or twice a day. Now, I am putting one packet (vsl#3) in something about four times per day spread out over about 12 hours. It really seems to be making a difference. I was at the beginning of a pouchitis episode, and I think it might be clearing up for the first time without antibiotics. If this doesn't do the trick I will try some of the other things you suggested.

And for anyone out there that wants to try and get vsl#3ds covered by insurance, check out the conversations on this site. I did and just got it covered a few days ago after taking the advice of people on this board.

Another thing I am doing that is really helping is taking psyillium fiber spread out throughout the day in the same manner. It helps keep my pouch cleared out.

Thanks again for the great info!

Thank you for all the information. I would like to try the fish oil, but it is only for sale in Austraila. Anyone know of a good brand in the US? I don't want to waste my time/mone.

Thanks so much!

You can buy Fish Oil capsules anywhere. I bought a bottle of 100 "Nature Made" softgel Fish Oil capsules (1200 mg, 360 mg Omega-3) for $6.49 yesterday at Walmart. These capsules are purified to remove mercury.

They have Walmarts in Florida, don't they?

I just buy the Kirkland brand through Amazon. I take 1000mg, three times a day. Just a caution though, fish oil and many other supplements have anticoagulant properties, so if you are on Coumadin or heparin, or other anticoagulants, make sure your doctor is aware of any supplements you take. I don't take the fish oil for my pouch so much, but more for heart health (lowers triglycerides). I absolutely recommend against taking more than 3-4 grams of fish oil a day unless it is under a doctor's supervision. It may be safe to take 12 grams, but I certainly would not assume it is safe for everyone.

http://www.nlm.nih.gov/medline...nfo/natural/993.html

Jan

This message has been edited. Last edited by: Jan Dollar,

Thanks! Was in Walmart yesterday, and dad works at Costco, so I am covered

From my experience if you're only paying $6 or $7 for your fish oil tablets you're results will be minimal. In fact finding a fish oil "capsule" that gives the same benefits as taking it in liquid form straight from the bottle is soooo difficult and takes a lot of trial and error. This is the reason I don't bother with capsules at all any more. 1000mg three times a day is a good place to start but keep in mind that you're only taking one third of an optimal dosage. 9000mg (9 grams) daily is the dose proven to get maximum anti-inflammatory effects. Good luck!

Yes, I take all 3! and I have been antibiotic free for 2 years since starting! I take Fish Oil EPA DHA 6-1, 2 times a day ( 2.5 grams ) 1000mg of curcumin, and VSL#3D and another probiotic that I take at different times during the day. It works! and my last 2 scopes showed a beatuiful pouch! ( PS I do use canassa nightly which is still my security blanket although my GI told me if I want I can stop )
Also, this plan was worked out for me by my Functional Medicine doctor.

I take high quality Norwegian fish oil in liquid form from health food store here. I was doing good on antibiotics but on m 4th brand, this one stopped working after 5 days. Reoccurring pouchitis is driving me nuts!

Hi--I'm new on this site but am quickly learning that it holds more answers than any of my physicians! (: (I am a physician myself, so that's a big statement for me to make.)
I have had the worst time that I could imagine with my pouch. Just got sick a year ago. No remission on prednisone (though I felt amazing), and then tried remicade per my GI. I developed hemolytic anemia--and got no remission, despite getting every illness that came by. (I work with kids--germs everywhere.) Got the pouch done in December--was told surgery would be a 'cure' for my UC--and like other posters, I kind of feel as though I have UC all over again. Diarrhea, pain, weight loss, difficulty functioning. It's not better. My anemia persists, though I can't see ongoing bleeding. I couldn't work with my ostomy--leaked when I did procedures requiring physical effort--and I was relieved when it was taken down, but that's when I got really sick. Got a pelvic abscess, too, and am still hoping that will go away on its own, as no one wants to drain it.
So now I'm having more pain and am convinced that it is pouchitis--different than when the abscess was causing issues, but still making it tough for me to see patients. I am fascinated by what has worked for others re. fish oil and probiotics. I am going to try pounding probiotics multiple times per day and see if that helps. Having bad pain and diarrhea. My surgeon wants another CT--this makes six since December. I am unhappy with the whole business. My family thinks I should see other docs in other cities, but they don't understand medicine, and I have the feeling I will get the same answers everywhere based on my research in med literature.
I think the answers lie here--with people who have lived this and are finding ways to control it. My life is stressful at baseline with my profession, but maybe meditation will help.
Next steps from your tips: multiple doses of probiotic in a day; cut out sugar and processed food; add fiber. I was a very healthy eater (and person) prior to UC, and have had to switch to only processed stuff, as it was all I could handle. I think it's worth a try now to add in more fruit/cooked veg and go from there. (Am scared of obstruction. I never want to have more surgery. Ever.) Exercise, from another forum. I am curious that the things that help others are all the things I was told to avoid!
Any other great thoughts? I am hopeful for the first time in months after reading your posts. People here actually LIVE this. I feel very alone as I am the only one in my family going through anything of the kind, and I am nagged and hassled about it rather than supported. If I can get this under control, maybe I don't have to give up my work--which has defined me for the last fifteen years. (Newsflash: doctors learn stuff, too... we're just stubborn about the sources sometimes.)

Thanks in advance. Just had to tell my tale; future posts will be shorter, I hope!

Welcome aboard! Yes, I know that coming from a science based background, it is difficult to accept that sometimes the random, trial and error method of treatment is actually the right approach. Being a nurse, I was also a hard nut to crack. I am still a believer in evidence based medicine, but I am also a believer in trying novel approaches with at least some basis in science. What was frustrating was working with only what was accepted as effective based on trials. This can set you up for failure by limiting yourself to proven treatments.

Another thing I found difficulty accepting, but have since adopted, is the notion that while diet does not cause or absolutely control function, it does have an affect, and not necessarily how I expected. I am fine with fruits and vegetables, both cooked and raw, but reducing breads, cereals, and sugar in particular, improved my function, even though my output is always loose/liquid. It is too easy to underestimate intolerances. The most difficult thing is figuring out what works and what doesn't, since there are so many variables to deal with.

Of course, you have additional challenges with abscesses and pouchitis. I am unclear about the hesitancy to drain abscesses, particularly if they are causing symptoms. My days with my presacral abscess were the worst, and I could not imagine not dealing with it through invasive intervention.

Anyway, you should get lots of ideas for trying to turn things around. Bottom line, we all just want to function and live life!

Jan