I remember going to a family party at about 3 months and being terrified I would have an accident or live in the bathroom. I went out in the front yard and called my ostomy nurse because I was panicking. She said that I just had to put on my patience hat and wait it out. I did just that. It took a year, but after that things improved massively. I too had spasms, frequency, and was miserable. I was not out and about! Pouchitis hit me at about the 4 week mark and I have been on Cipro for over 10 years now. All in all, I love my pouch. It has good days and bad days. Sometimes I get up five or more times at night, but most of the time only once or twice. That is life now.
things that have helped me massively are:
-tincture of opium - I could not take Immodium. It constipated and dehydrated me terribly. This works more gently. I take 10 drops mixed in liquids every 4 hours as needed.
- a bidet - on vacation recently, I couldn't wait to get back to my bidet!
- Questran - this is a yucky tasting powder that you mix with water. It binds the acid in your stool to prevent butt burn. It has saved me when nothing else works. The biggest issue with this med is you need to take it separate from other meds because it absorbs them.