Treatment options

Do you mind if I ask exactly where your inflammation is located. Do you have any above the pouch? 

Also have you tried Vsl3 ds. 

Lorib, the next step for treatment is generally to stay on antibiotics continuously. This is called antibiotic-dependent pouchitis. Ideally you would rotate to a different antibiotic every 2-3 weeks, cycling through perhaps three different ones. It's critical that your gastroenterologist understand this condition for you to get proper treatment. I've never had the luxury of multiple effective antibiotics, so I just stay on a single treatment, and have done very well for years that way.

Jeane's suggestion of VSL is important. If your insurance covers it (or you can afford it), it might let you stay well without continuous antibiotics, or with lower antibiotic doses. I take a maximum dose of VSL #3 DS: 4 packets per day in two doses. This costs about $620/month, so I'm fortunate to have persuaded my insurance company to cover it.

Good luck!

I am in the same situation. I feel great on cipro, but as soon as I am off the pouchitis symptoms return. Dr has me trying to taper off the cipro, and I am waiting for my vsl3 order to arrive. 

I have just had a sigmoidoscopy that found ulcers and inflammation in my J Pouch. I have been feeling very tired and been experiencing more food intolerances in the last few years. They have taken six biopsies, now waiting for results. All the consultant said was it looked like pouchtitis and my doctor will contact me regarding a prescription.

I am now waiting for the results and concerned about what Medication I will be given. I read so much about medication that works and what doesn't. The problem is my doctor does not seem to have much understanding about pouches, so wondering what I will be prescribed. Are there any suggestions I should be making? 

I hope you don't mind but put a picture that was taken of just one of my ulcers.  

I have same issues. Doc has prescribed corticosteroid enemas w CIpro. My main symptoms are cramping and pretty constant pain.  You will prob be prescribed something in addition to antibiotics to try and heal the ulcers.  I'm also very tired.  Good luck. Sorry you are going through this. 

Spice, my best suggestion is to find a doctor more knowledgeable about J-pouches. You're just 2 hours from London, I think. Your current doctor might happily suggest someone else. Perhaps "Is there someone I should see who treats this all the time?"

Cipro alone seems to often do the trick, if only pouchitis is going on.

Thank you for your replies. I have found that GPS I see have limited knowledge. I found that with my last GP where I lived before.

The hospital where my operations where  previously performed where excellent. The consultants and surgeon were fantastic. My consultant also had a j pouch! 

I have moved to a different part of the country so this was my second visit to this hospital. I am sure the consultant who carried out the camera is very knowledgeable and experienced in this area, but he was not the person I Saw on my consultation visit which I did not feel so confident.

This consultant on my first consultation visit said they did not have my notes from the previous hospital and I needed to find my hospital number. I hunted for my old hospital card and found my hospital number was exactly the same as that on my appointment letter anyway.

Going back to my sigmoidoscopy , I was just told that my GP will be informed of the results from the biopsies and will prescribe me with medication. I'm sure at my previous hospital they would have sent me an appointment to attend their clinic for the results and medication. 

I am probably worrying about nothing, just change, with people that have not been with me from the beginning, and followed my journey I suppose. 

I will now wait and see what happens, at least I have an idea of the medication, I will keep Cipro in mind. 

I hope you are feeling better now Jeane! 

Thank you Scot

The research on tumeric and inflammation is looking quite exciting, has anyone tried 'golden paste' tumeric treatment for pouchitis with any luck??