Hi. I am looking to find others who nhave had a pelvic exenteration. I had a total pelvic exenteration 3 months ago, now have colostomy and urostomy. This was due to recurring vaginal cancer after chemo/rad failed.
After a bumpy start to my recovery, I am doing great, at least I think so. At one point my weight dropped to 68 lbs, I am up to 110 lbs now. YAY!!! I did have a nasty UTI after discharge from surgery, hospital stay was only 10 days. Then 6 more after being readmitted for UTI. The only other issue was an infection to my reconstructed vagina and I'm waiting for outpatient surgery for a graft to correct damage from the infection. I think these bumps are pretty minor compared to other possible complications that could've happened.
This is such a rare surgery, I would like to hear from others who have had this or know somebody who had this surgery. Interested in how other are doing.
Like I said, my proceedure was only 12 weeks ago. My weight is up greatly, I am independent with all my care including stoma care, I can walk 1 mile, and I just started driving again.
If anyone is considering this proceedure, I hope my experience cand provide hope that there is a chance and that you can go on to live a good life. My ostomies do not bother me and I am comfortable with the new me.