After a year of hell I have had to have 2 stoma revisions since doctors would not admit the initial cystectomy was faulty. Constant leakage, many emergency room trips to take in stitches. Finally after 8 months a new surgeon had to remove 2 inches of inflamed stoma ,and now I have a recessed stoma and have to wear 2 rings with my bag.
Recently,I have been complaining about pain and puffiness of abdomen and the surgeon and oncologists kept saying "normal" with recovery. Thank god for my visiting nurse who said I had a possible hernia. Returned to surgeon who agreed and did not sound hopeful.
Now I am so frustrated and worried. My surgeon prescribed a band which is very painful and tight. and told me to call if I have problems. My nurse told me this could be serious and that I should go to the emergency room if the stoma changed color suddenly....something my doctors neglected to mention.
Research tells me that the surgury for hernia repair is extremely dangerous. My stoma would have to be removed to the other side of my abdomen. I asked the doctor if the stoma is too short now...how is this possible? He said that this would be a problem, ...really??
How do I find a surgeon with the specific type of experience in hernia stoma repair? I am extremely disappointed in the care and lack of concern by the present team of doctors, but because of my many complications I cannot get another doctor to help me. When I went to another cancer center that I really had confidence in, and they really helped me and were hopeful...but when they found that my problems were the original surgery, they sent me back to my first team. I guess I am stuck!
So far, the CAT scans are negative for cancer, but how can I continue with a normal life with this hernia problem.?
I am convinced that I would not have surgery or further chemo from this present tesm.....How can I get someone new to help me?
