A couple things I have noticed. First, even one ibuprofen seems to have the following effect on me: BMs slow down, and BMs are harder and more difficult to pass. So first, try to stay off the ibuprofen. That's not the easiest to do if you don't have other options, I know.

Also, if antibiotics help, you might see if your doctor would allow you to rotate through a few different ones for a few weeks to relieve some of the issues.

Only other idea is to get some topical ointments you can apply to help deal with pain. There are a couple OTC with menthol or lidocaine - which is what will alleviate the pain. My surgeon has a compounded ointment she prescribes with petroleum jelly, lidocaine, and a few other ingredients - it is wonderful.

Steve

I will definitely be asking my GI doctor about that.  Regarding the symptoms, is this something indicative of a stricture?  Thank you again for responding.

Can't say it's not indicative of a stricture, but not necessarily a stricture. See what your GI wants to do - should be able to flex sig and see if there are any strictures.

Sound like pouchitis? Peptol Bismol provides some relief. Also, try Lomotil.

If the antibiotic got you back to normal then I don't think you're likely to have a stricture. Hopefully another, longer round of a different antibiotic will clear this up for a long time, especially if you can avoid the NSAIDs. This would be a very good time to start a probiotic, like VSL #3, since it can help prevent/delay pouchitis recurrence. You can get it over the counter today, though the prescription strength "DS" formulation makes it easier to take a higher dose, and might be covered by your insurance. 

Thank you all for your responses.  Completely forgot about VSL #3.  Will have to ask about that.  I do remember it being very expensive, but I can really give a sh*t right now.  In fact, I can give many of those

VSL kept me off antibiotics for a year or two. Now it just helps them work, which is also good.

Another approach that can help keep pouchitis away is a very low carb diet.

Thank you, Scott!

Is it OK to take VSL on and off? I'll take 3 caps AM and 3 caps PM in addition to Cipro when I have flares but $60 every 2 weeks gets pricey.

J Moons-

The data says that VSL work best at preventing pouchitis rather than treating it, so I'd be wary about spending money on it only when pouchitis occurs. 6 caps daily is a very low dose, in spite of the cost, so you may not get much benefit anyway. I fought successfully to get it covered by insurance ( the DS form is by prescription only), and take four DS packets daily - about $620/month.

Oh wow. I'll have to look into insurance then.  Thank you for the information. I wasn't even aware of the DS prescription. I'm sure insurance will not be too happy about the request considering I'm going through the second appeal process of the denial of my maintenance doses of Stelara. 

Think I would get benefit from the DS with one packet a day?

It's hard to predict what dose will work for you. It's worth a try. It's tricky to tell if it's working, but easier to tell if it isn't. 

Here's the very favorable policy my insurance company finally wrote after I leaned on them relentlessly for a couple of years:

http://notesnet.carefirst.com/...04EE6AE?OpenDocument

Well, I have the same insurance company. If OK with you, maybe I could use this in support of the Rx being covered under insurance. If not OK, maybe I'll just let it go for now and see if the Stelara works once enough time has passed. 

If it's really the same Blue Cross plan (CareFirst) then the insurer would promptly agree (on appeal) to honor their own policy. If it's a different Blue Cross plan then they might be influenced by CareFirst's policy. I definitely encourage you to use this well-researched and well-written document. You may have to be willing to appeal to a higher authority than the insurance company. My state's insurance administration was very helpful, but it still took a long time. 

Thank you. The doctor did prescribe the VSL (non DS version) so I will have to work on that. I do, in fact, have CareFirst BCBS so this'll definitely be helpful if I move forward with it.

For CareFirst the most that's needed is a simple doctor's letter citing their policy and declaring VSL #3 DS medically necessary for maintenance of your ileal pouch. You might even be able to skip the doctor's letter if you cite the policy.

The VSL will be denied at the pharmacy in any case. Once they agreed to cover it they gave me instructions for mailing the receipt in monthly. It eats through my deductible pretty quickly.