My daughter was almost 12 when she was diagnosed with UC. Her first flare up was treated with prednisone, asacol and Remicade
*docs said worst case they'd ever seen
maintained remission for 3 years with Asocol and Lialda taking inconsistantly
2nd flare up excataly 3 years after 1st. Treated with Remicade and steriods had allergic reaction to Remicade. After 2 weeks and no results daughter decided to have colon removed rather than starting to take Humaria. While on operating table her colon broke open.
*Doc said it was the worst he'd ever seen and would have nightmares about it.
He was only able to do the colectomy and temp ilieostomy, he couldn't form the pouch because of the leakage. 3 months later she went in for the pouch formation and takedown. 3 days after surgery she got a fever and Experienced 2 leaks in the back where the rectum and pouch connected. She has been on TPN and IV antibiotics for 4 weeks. She came home 2 weeks ago. She has been free from everything for 4 days and I am just wanting to keep her healthy. I am trying to figure out what our next step should be and I am wondering if I should start her on VSL3 to prevent pouchitis. I am under the impression that it is better to prevent pouchitis than to try and keep it at bay after you have already experienced it. Her entire illness has not been by the book, even now after all of her problems and only 4 weeks after her takedown she is sleeping through the night and only having 5 BMs a day. She hasn't had any problems eating yet. I wonder if this is the calm before the storm? Or can we finally consider ourselves to have a bit of luck?

VSL3 is SOOO expensive on top of all of our hospital bills. Are there other options? I would love your thoughts!

I am so sorry that your daughter had to go thru all of that. In regards to VSL#3, you can get a prescription from your doctor for VSL#DS (double strenght). I have taken some kind of probiotic since my ileo through j-pouch for 10 years now.

Awful to hear about your daughter's experience. Glad that she is stable now.

Some people are saying that VSL#3 DS is not covered anymore, however, I just refilled mine today and didn't pay a penny. Make sure your doctor writes the script for VSL#3 DS and when you drop it off, your pharmacist can tell you on the spot if it's covered or not. If they say no, I would call your insurance company to verify. I have Blue Cross Blue Shield PPO and they cover it 100%.

Thank you SO much ladies for your quick response. I have already called the dr. to have him call in the VSL3 DS. I am crossing my fingers hoping it is covered. I wonder if there is a way to call the insurance and "get" it covered. Like get notes from the doctor and stuff? Because according to him it is a mandatory maintenance drug and we need it. AllyKat and clz81 have you ever had pouchitis? Have you taken the pro-biotic consistently since your take down?

Rather than call insurance, bring the script to the pharmacy and have them run it through their computer to see if it covered. If it is - great! If not, I would make sure they are typing in the right medicine and then call insurance.

I have moved around and when I go to a new pharmacy there is always confusion with this medicine.

1) VSL#3 DS. When you spell that over the phone, insurance likely makes typos. It is a funny name to spell

2)They make just look at VSL#3 and say it is not covered.

3) If it really isnt covered, then have your docotr write a letter stating why it is necessary and hopefully insurance will pay.

Thanks so much for your help! My insurance does cover VSL#3 DS! Yeehaw! I would have never thought that they would cover one and not the other. We still have to pay $65 for a 3 month supply but compared to $100 for a 1 month supply I am happy. Here's to hoping it works!