Kanga-

I don't like uncontrolled pouchitis, but I don't think of it as particularly painful. I wonder if that pain you're have is from something else, as you suggested.

Many folks seem to get help with pouchitis from a strong probiotic like VSL #3 DS. I use it at a maximal dose (4 packets daily), and I think it makes a real difference. I don't think fish oil is likely to do you any good at all.

Some folks report improvement in pouchitis from reducing carbohydrates (starches and sugars) substantially. I haven't done it, though. 

Good luck!

Thanks, Scott.  Do you need a script for that probiotic?  I take align and culturelle right now--both over the counter.  If I don't feel better within a week, I guess it's time for a trip to the surgeon.  

Kanga

I just ordered VSL #3 capsules on Amazon. Fingers crossed it will help; if not, I will be on the business end of an endoscope soon.    My new hip isn't even healed yet, now this? Always something...

Kanga-

As you've discovered, VSL is available without a prescription, in capsules or single-strength packets. The double-strength formulation requires a prescription (and thus is sometimes covered by insurance). The dose seems to really matter, so I'd be surprised if you saw any effect from (for example) 4 capsules daily. The dose I take (larger than most people's) is equivalent to 32 capsules daily.

If I were having the trouble you're describing I'd be eager for a pouchoscopy. You'll get much better results when you treat a problem you actually have.

In addition to VSL (and a pouchoscopy!), I might suggest looking into curcumin (with black pepper/bioprene).  I've been using it religiously for a year now and no pouchitis (knock on wood).  It also has been helping me with arthritis in my hands.  I use Viva Labs from Amazon, but there are lots of options out there.

I don't know about Omega-3 fish oils specifically as a treatment for pouchitis, but there have been some studies which suggest fish oil has a positive impact on Crohn's (in combination with other things, of course). In general, Omega-3s may have anti-inflammatory properties, so theoretically there may be some benefit to taking them when you have pouchitis.

Of note, for past 3.5 years I've been talking turmeric and Align.  I was already taking Omega-3, vit-D, calcium, and magnesium along with multi-vits and iron before that so I just added them to my daily regime (lots of pills, I know). I have not required antibiotics since 2012/2013, and my last scope in July of this year showed a "perfect" and very healthy pouch. Obviously there is no way to know for sure if the turmeric and/or Align is what has kept pouchits in check for me during this time, but I do feel my pouch function has overall been better since I've been taking them regularly. That said, my pouchitis had already been treated and was in remission (subclinical) when I started this regime. In general, there is little clinical information to suggest that probiotics or other remedies are in any way effective for active pouchitis cases, so if you already have full blown pouchitis, anything other than antibiotics may be ineffective in putting it into remission.  

Some people apparently do have luck managing pouchitis with Pepto-Bismol, I think 2-4 tablets taken daily, but I don't think there haven't any studies on its long term effectiveness  as a treatment, and from what I have read on these boards in the past, there have been isolated reports of cognitive side effects as well as GI bleeding after prolonged use. Jan perhaps has more information about Pepto and can provide more insight on its use for pouchitis and any side effects.

Thank you all for your thoughtful responses.  I know I need a pouchoscopy +/- gastrografin enema to rule out an adhesion, which is what they had to do several years ago.    I have just been dreading it.  After just having a total hip replacement in August, I'm like--another thing?  I'm not even recovered from this year...And we all hate being scoped in the office.  We've all been through so much with being sick and having surgeries...it's all very traumatic and scary.  Here's hoping it's not an adhesion.  Oh well...such is life.  It will work out in the end.  

Kangaroo Woman,

What a trying time! I wish you all the best in your recovery.  One thing I forgot to mention is that turmeric is thought to have anti-inflammatory properties as well and is quite often used for joint pain as well as general inflammation. I think it has helped me a lot. You may want to consider it. 

Thank you so very much for your kind words.  I ordered the turmeric chews from GNC.    I still have inflammation from the hip surgery, so I am open to anything that will help that as well.  

Thanks again.

Alison

Alison,

I am 31 years with my J-Pouch and I also need a hip replacement.   I have not incorporated Omega's or Tumeric but I am beginning to experiment with them.   Best of luck with the hip and your pouch.  Probiotics help me but VSL#3 was not helpful.    If you would like to email me further you can reach me:  michaelshore12@gmail.com.  Best of Luck!

Sincerely,

Michael