Would you mind telling me who your surgeon is? Boy you have been through a lot too! So do you have a j-pouch or ileostomy? Are you able to work outside of your home? I just want to move on from all of this, although it seems to have taken my life over! I absolutely hate it!!! I am still on TPN after 5 long years. I'm stuck though. I went to UH for a second opinion and the surgeon said that j-pouch can ntot be saved, but would just leave it and make a k-pouch I was like WTF to myself when this was explained to me. So now have to go through 20 cycles of biofeedback and PT. If this doesn't work back to stoma or Koch Pouch. I'm not happy with both! My doctor said i could revise the j-pouch but the doctor at UH said no. I have done Remicade and that didn't work, tried Entyvio that as well did not work!
Has anyone ever seen the actual image of your j-pouch? I did and it goes straight down with no image of a j. Every doctor said its supposed to be this way. Well, if it is why don't all of the images of a pouch you can clearly see that j shape. I know doctors protect one another to avoid any malpractice law suite. I just wish someone could just come out and say it made wrong. My gastro doctor did say she got so far and she didn't know what to do and stopped. This is why I am still on TPN after 5 years and I am down right disgusted!!!! what to do?what to do?