I feel your pain and apprehension Frances. I'm in a big pile of depression here. I tried to make my pouch work 5 years. I have been going to Mayo's since 2012. My local GI referred me.
Last fall my doctors advised me to have it removed as there was no surgical or medication way to make it work. I had the opposite problem, I had to give my self 5 or more enemas a day. That was when I asked if she could just divert me to a permanent ileostomy and leave my pouch inside. So last fall she diverted me. Along with all of this is dense adhesions she has to spend more than twice the normal expected surgery time . I don't like my ileostomy BUT it was a thousand times better than my temp one in-between surgeries.
It didn't work. I went back on antibiotics for a few months before surgery around a week and a half ago. My surgeon, Dr. Mathis, is more than I could expect. She also repaired my stoma as a hernia developed under it. So I am back to life with a new stoma, stitches in my butt, opened incision places from the very long incision. I have to pack them untill it heals. They have to do these surgeries open. The same mid-line location was used for the 4th time plus she had to cut above my bellybutton for the first time.
I am spending 24/7 recuperating from this. Same as always, ileus that has me going from too high of pouch output to hardly at all and being bloated and in more pain. I've told my husband to call 911 if I have the worst symptoms. We've been to the local ER and I have contacted my PCP as well. We will probably be driving back to Mayo's this week. Etc.
What's the alternative to all of this? For me the only one is death. I have excellent doctors at the #1 ranked hospital in the USA and 2 top doctors advising me. I just need to take the time to recover. I still had pouchitis and a narley cuff thick as my body loves to produce fibrous tissue. She also removed something off of my small intestines and was able to repair that at the same time.
My husband is worried. He said the first j-pouch surgery almost killed me and this one surgery is worse, per my surgeon. Medicare has paid alot out for my surgical care and it also covers stoma supplies. I am on it as am receiving disability benefits. The secondary insurance covers the rest. I know what you mean about prescription coverage too.
I haven't posted here or anywhere else much of late. I'm depressed. I have learned so much by being on here the last 5 years that I am better equipped to deal with this revovery. I know what foods to eat etc.
As things calm down I am slowly getting better. Unexpected is there's not much pain where she took my j-pouch & my rectal stump out and sewed me up. There was a pressure in there and in my tailbone area that is gone. So I see the light at the end of a very long road.
You are tough Frances. You have dealt with all of this 3 times longer than I have and I admire how much better you are at making yourself do things, like caring for your mother, than I am.