Hi guys well I actually feel like there is hope. I had my gastro appointment today and after hearing all my symptoms he believes I have pouchitis. Pretty sure we all agreed I had that months ago but my surgeon didn't. What gets me so upset is all the pain and suffering I have dealt with these last few months and hearing my surgeon say she thinks " its normal" all my symptoms . The gastro said "surgeons are only good at cutting you
open" and I couldn't agree more.
By the end of my appointment I burst out crying saying " I felt like someone was finally in my corner and it was nice to have his positive outlook not just negative ones " like I received from my surgeon .I told him I would read all your comments on this site about
how all the other J pouches are happy with their pouch and I would sit at home crying reading it thinking my decision to have the pouch was the worst thing that has ever happened. I just want to feel normal again. I want to sleep more then 2 hours at a time I truly want my back door area to heal, It would be nice to be pain free and not suffer with gas cramps all day long.
And I never want to hear a doctor say BS like my surgeon said to me 2 weeks ago " well you can get a reversal " who says that to a someone that just under went 3 surgeries in 9 months. So its goodbye to my surgeon. I am going to fight for this pouch not give up.
The gastro is starting me on 500 mg Metronidazole and 500 mg Ciprofloxacin for 14 days and he wants to do a pouch exam asap I have an appointment booked for next Wednesday. He said there are a few different meds we can try if that doesn't work. I walked out of his room with HOPE for the first time in a long time.
Thank you guys for listening to me rant all the time. Its nice to know you get it.
3timechamp when is your surgery?
47 year old female mother of 4
UC since 1993 remission off and on
The last flare-up was 2008 till 2009 then remission till June 2017
Hospitalized November for 5 weeks removed my colon Dec 12
Anemia 4 blood transfusions in those 5 weeks.
prednisone, asacol, pentasa,encort enemas, steriod enemas, hurmia all failed
Proctitis Jan 2018
March 19 2nd surgery J pouch
Next surgery late Aug 8 takedown