Hernia after colorectal cancer surgery: Anyone else?

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.

@silversaw, Mayo Clinic welcomes both new and existing patients for virtual and in-person care, including elective surgeries, in adherence with federal and state executive orders and guidance.

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Wes. You e had a really ouch challenge. I’m so sorry. Surgical implications are sometimes more devastating than the initial
Diagnosis. I promise you, here is definitely an end in sight. It may not seem like it but eventually, you’ll get back to a stage where you don’t feel like everything is a set back. I can’t offer much information as that is a very different hernia and requires a specialist in that area as it can be challenging. I know that when I started researching for my ventral hernia, I started at Mayo. Since it had only been close to a year since last surgery, and my history of complications, they were careful and said that it needed to be thought about because of what was involved. There input helped me feel comfortable waiting a bit longer. I finally had mine repaired about 9 months after my Mayo consult, and used a general surgeon that I trusted who did my gallbladder. Maybe he was an abdominal wall reconstruction, so very in depth and challenging. She was competent and I felt confident in her skill. I did have a few small complications, but nothing compared to what I went through before.
After consulting with Mayo, I did stumble across a hernia practice tin Texas that handled complex hernias of all types. They have a physical therapy center attached and have a pre and post surgery plan to ensure success. Some complex hernia repairs require an physical therapy and sometimes aftercare. So they have plans for that. But travel to Texas wasn’t an option because I wasn’t willing to be away from kids and am not confident our insurance would have covered it. It requires a hospital stay and is expensive.
Cleveland Clinic is a great clinic and they deal with complexity. I hope you find someone! Be persistent.

Thanks for your reply and suggestions. Mayo Clinic is about a 12 hour drive from here, unless I can get some services by phone or ZOOM type things. This is a nice summer trip, if I can drive both to and from there. In other words would I be able to drive back home to Central Michigan after Tx?

Does anyone know about Colo-rectal perineal Hernia services at the Cleveland Clinic. That's only 6 hours from here. Do they also work by phone/email/Zoom? Most hernias in volve the abdomen, so one has to be sure to state this is a hernia involving the lower back usually in the area of the Anus and levator ani muscles post-surgery removal of cancer etc.

Thanks much for replies as Information about this type hernia is very scarce.

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 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.

I’ve read about c diff and it is a nightmare! We’ve all had our struggles and it’s just part of the process. My doctors, nurses and surgeons have been amazing!! I’m just thankful the sepsis didn’t happen during current times. I would be devastated without my kids and husband and sister. I never spent a single night alone!!

Hi Lisa. And I was crying the blues when I came home with c-diff! Although, getting something that impedes your healing is unacceptable in my world. Especially, if if’s not a condition you are already diagnosed with or have a history. I had open surgery, colon re-section, cancer related. Very healthy, no underlined medical conditions and came with a friend🤬. There are several medical professionals in the member list. I’m sure you will get great advice. It seems like if you did not have a weakness before, you may be smart to know all you can around infection, there origin and strain/agitation. I feel after having c-diff (and cancer) I need to understand and educate myself around what happened to me. I’m still not able to wrap my head around all you went through. I don't hear any blame or “giving up”. You’re a trooper. Love my activity too; and won’t give it up, just have to be smart . Take care virgo1952