Thanks D....Apparently, I saw the "best" when I (and others languished) in that hospital for 6 weeks. There was nothing else they could do except setons when I was abscessing so badly. They didn't even have me on abx during that time. My requests to start Stelara , MAP, anything were denied. Basically, I was there for pain control and then after 6 weeks I made them remove the setons....guess what ? no more pain. I'd hardly trusted them when they say you stop abscessing with setons....not true in my case. Even the amount of putrid drainage was gross and much different from anyone else. I'd soak through 6-7 pads a day.....I certainly wasn't comfortable and felt like a disgusting woman. The smell.....I had to wear plastic underwear at night to stop the leaks....Not very sexy let me tell you. They are extremely conservative here. Only treatment is setons.
Anyway as far as my diagnosis, the MRI in Feb showed improvement,, the RVF had scarred over, the horseshoe fistula had closed. All that remains is the intersperic, which had gas in it. So there's communication. I'm pissed. At that point, while my bowel was in remission my GI should have spoken with the latest CRS and advocated that this is the time for a LIFT/FLAP or WHATEVER to get this closed. I call negligence here. If there's gas, there's bacteria....which has lead me here, unnecessarily. So Stelara has worked, but I need more help.
I started taking Oil of Oregano last night. 1 pill 180mg, 80% carvacrol. I hope it helps and doesn't cause D. I can feel my tummy rumbling.
I'll try and sort through all the Dr. recommendations you guys have suggested. I can only go to the States if they can see me on a compassionate grounds. unfortunately I have family members depending on my here, which is also an issue.
Perhaps I should have been a stronger advocate during the last 2 years (for repair) but you know the mental health break was good. And I was busy living life, small excursions, loving food, etc etc. Not worrying about
bathrooms was glorious. Unfortunately, this has brought back such feelings of disgust, PTSD and fear for going through all this again.....I'm very tired and don't really feel I have much in the tank to advocate for myself. I feel very weak today. Thus far I've managed to not let this get in the way of anything....hope that continues.
Thanks for listening. Appreciated.
Post Edited (U B Tough) : 5/11/2019 7:44:16 AM (GMT-6)