Just wanted to say hello from Australia. I’m so happy to have found you. I have Lynches syndrome and have just had my third re section in 15 years on Nov 5 - went into that surgery not knowing exactly what procedure I’d be having done.
There were three options and I was lucky enough to have a surgeon who worked really hard to use the tiny blood supply I have left and the last 10-15 cms of my colon she was able to salvage to reconnect me me back up. But I thought I’d have a JPouch hence my search for support.
I feel sure a JPouch or permanent stoma is in my future given the genetic cancer I have, and Im grateful I’ll have a wealth of knowledge from you all to call on when it finally DOES happen.
My own experience : initial resection with stoma for 3 months, second resection 5 years ago and last one just on Nov 5 this year. I’m so stunned at the lack of info available from Drs etc, it’s true that we become more knowledgeable than them 😉 out of necessity about the “little” things...which happen to be big things to those facing them. I’ve been following a low FODMAP diet for about 2 years which has been life changing.
I find you all truly inspiring and I can’t begin to tell you how good it is to read familiar stories and see issues I myself am dealing with.
Thank you all for sharing and being so brave and honest. You’ve helped me immensely already.