First off, I'm sorry you didn't get good results. Second, I know everyone tries to avoid surgery, so I will tell you a bit about
Back in 2005 I did not have UC. I thought I had IBS though since I would get a lot of pain in one spot. I went to our local clinic and blood tests would show and infection. The nurse practitioner acted like an infection in the colon was common, here are some pills. End of story.
I was 20 something and simply took the pills and went on. A little piece of me thought I should see a different doctor as the infections got more painful.
Well... 6 months after I had my baby, I had a flare up of the pain while on vacation. It was the last day and I said I would go to the doctor on Monday. The flight home was awful. I wanted to be sick from the pain, but on the drive home from the airport it just stopped. I was relieved, but the next day I went to the ER with incredible pain and fever.
Long story short...er I had diverticulitis, in my 20s! Crazy. Sad thing is it ruptured and had developed into a massive infection. The pain stopping was the abscess rupturing.
So, I had a colon resection and had to have an iliostomy while my colon healed. The first surgery was awful, but mind you, I had a terrible infection I was also battling on top of having a good foot of my colon removed. I believe most of the awfulness of that was the peritonitis I had going on. If it had been a simple colon resection, I read people say there wasn't near the pain they expected.
The bag was a bit of a pain, but I was also coming from a place where having an ostomy bag was a complete shock to me. Never had my nurse practitioner ever said anything like ruptured colon could happen, see a specialist... She just made it sound like an everyday thing, take some pills, you're fine.
Intersting thing happened around the 2nd week though, I got this ring thingy that would fill in all the odd edges of my stoma and it made a much better seal that didn't leak. No more leaking or irritation. I would go to the bathroom, then empty my bag if there was anything in there, clean myself up, wipe out the end of the bag with another piece of toilet paper, and it felt normal. Nothing hard around it at all.
By the time I had to have a scope to make sure everything healed normally, I never thought about
my iliostomy. I didn't have to prep, since my colon wasn't connected. They just put a catheter in my stoma and flushed it... but the scope showed a completely normal and healed colon. If only I had known what was coming!
The second surgery, I didn't even need pain killers. No pain at all. It was a walk in the park.
I've been reminding myself of this because I too have been symptom free with my UC, but a scope last month showed cells indeterminate for dysplasia and I have to go back in a year to see if there is any further changes, or if it resolved. The question is always there, what if it's a cancer starting??
I tell myself, if it's still there, I will simply have my colon out. No more risk of a flare and hey, no being on the beach and needing to poop. LOL
I hope this helps you to feel better. If you do need surgery, perhaps it won't be that bad, and hey, you'll never have to poop while at the beach.