AllyKat
I talked to my surgeon at CC in 2000 about pouch removal after I became disabled following 10 years constant severe problems with pouch. Said removal would only cause more problems than I already had. They did multiple more surgeries, first in 2001(roughly, it's all a blur) was the "temporary ileostomy"to give the pouch a break (It was never hooked back up again). Over the next six years they did an advancement of the pouch. Then they cut out part of the pouch. Then I had several surgeries for adhesion(each time requiring moving the ileostomy to another site) because of the frequent obstructions. I was on antibiotics constantly..my rectum throbbed nonstop. I needed help going from the bed to the couch. I was in the local hospital very often for bowel obstructions and chronic pouchitis, often with sepsis. I had a constant peri-anal abscess. Those years were simply horrid.
Finally in 2008, I remember the night well.. My husband had got me in his SUV on a pillow to take me for a ride..after riding around and listening to music, I felt this strength and resolution rise up in me. I asked him to pull over. He pulled into a McDonalds, and I said "I want to see a priest and a surgeon". He immediately pulled out his phone, called our local Priest to make an appointment for the Rite of reconciliation and an Annointing of the sick. The next day he called Cleveland and got an appointment with my surgeon.
I told my surgeon (I was in a wheelchair) exactly the quality of my life. He said they could now take the pouch out, strip the rectum, sew me up and give me a permanent ileostomy. Also called in a plastic surgeon to have my abdominal wall rebuilt. I was filled with joy..first time I had hope in years. The surgeon told me it as going to "rough one". I didn't care..couldn't be worse than my life at that point.
Had the surgery..yes it was rough..it took me about 2 years to recover, lots of complications..but remember I went in VERY debilitated.
Then I began to get better..life slowly but surely came back.
I still get obstructions occasionally (every surgery leaves adhesions to different extents)and I get abdominal abscesses at times..but they are able to be handled locally..my local Doctor keeps in contact with my surgeon at CC.
Since I've had so many surgeries for adhesions and a failed attempt at abdominal wall rebuild in the past, there are no plans for future surgery..unless there is an emergency.
Wow..can't believe how much I wrote..just sort of poured out of me.
I now see on this site that pouch removal is an option so much earlier. I was one of the early surgeries..in fact my first surgery was done by the Doctor who went on to develop the laparoscopic procedure.
The J-pouch has worked well for many people, but there are some that it simply doesn't work, and all the attempts to "save the pouch" just prolongs our suffering.
I was 28 when I had the j-pouch surgery, disabled at 37, pouch removed at age 46 I am now 51.
What I would give for those years back.
But I have to believe that there is a purpose for everything and I have learned much from those years of suffering, and my joy at the little things is HUGE because of what I've been through. My quality of life has went from a two to an eight.
That's been my experience with the j-pouch surgery.
