← Return to Hernia after colorectal cancer surgery: Anyone else?

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@silversaw

I had robotic type surgery for colorectal cancer ending up with the anus stitched closed after removal of a 3x3 cm tumor and the "levator ani" muscle (don't know how much of this was removed) Aug 2, 2021 after chemo/radiation Tx for a 2a stage cancer. I also found out that the small intestines had been "tied up" during the surgery. A stoma was also installed. On Aug 6, the day I moved to a medical care facility, the "drain" was removed and I felt something was wrong as it collected 2 to 3 cups of fluid a day and had not really stopped that amount. I was told that "everything will be OK". 10 days later, at the medical care facility, water came down the back of my legs, all over the floor so I was taken back to the hospital where the "team" nurse practitioner knew exactly what was happening from his experiences and he found a 7 cm "cavity" and prescribed nursing care twice a day to clean and pack the hole. On September 15 I saw him again and he was very pleased that the cavity had shrunk to only 4 cm and he prescribed continued care, this time at a Wound Tx Clinic where I came 3 times a week. The nurse practitioner had prescribed on.y 2 months more to get the cavity closed but that certainly did not happen. It got down to 1 cm around Thanksgiving of 2021. Then swelling started with the anus sewed up tissue. This was first Dx as an infection, and with a switch of personnel, a perineal hernia. A CAT scan was prescribed and verified the posterior perineal hernia. It took 5 1/2 months for this "drain problem" to go away, Thank God!. However, the hernia is persisting and getting bigger. I saw the surgeon for his opinion etc. and all he would say was "I apologize, I can't do anything" unless I asked a question. Of course, I feel devastated. I got no further help from him except a recommendation to wear "bike pants", and a statement that "I'm too old" for him to do anything. Later, a nurse from the same hospital, a much better helper, told me that the surgical notes indicated that the surgeon had tied up the small intestines during the surgery; obviously that did not work. Back at my home place in Michigan, my primary care doctor advised "tying up" the hernia so I'm working on that. She and other doctors recommended a second opinion which is being very hard to find as I cannot seem to find a specialist surgeon for hernias like this and it takes a long time to get appointments with most doctors and then I've gotten only referrals from them. I also have troubles trying to find an "Osteo Nurse"; the closest one is over an hour's drive away. Ones further away first mentioned ZOOM work, but now the answer is I have to drive very long distances to get help.
So, I'm still shopping for a second opinion and that's very hard to find as surgeons are very busy or do not do this kind of surgery. I'm looking for a surgeon with a specialty in posterior perineal hernias. I also need advisement on how to "tie up" this kind of hernia. Would pelvic floor exercises help? If surgery is not possible, then how can I find advisement on tying it up and appropriate exercises etc.

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Replies to "I had robotic type surgery for colorectal cancer ending up with the anus stitched closed after..."

Welcome, @silversaw. What an ordeal. I'm hoping that @lisag03 has some experiences to share and possible recommendations for a second opinion. Since you're from Michigan, I'd also like to ask @hopeful33250 to offer her thoughts about second opinion for GI issues closer to home for you.

Silversaw, might Mayo Clinic, MN be an option for you?

I have had almost the exact same experience with my surgery. One attempt at repair that resulted in 6 months of packing an infection in the wound, and then the hernia reappeared. The surgeon says he has done all that can be done without opening my lower body cavity and I am not up for that. I have no active disease right now, according to my last scan, but it has returned once before 2 years and I am now 2 years past the last Lutathera treatment. I was told the same thing about the bicycle pants. Those work so well with the ostomy bag, let alone an old man trying to pee. If you find any answers, let me know. And Good Luck.