Struggling After A Failed Ostomy Reversal

Question

Hi all, I just wanted to share my story and hopefully gain some insight or advice as I am really struggling emotionally and mentally after this journey. So to start, I was diagnosed with Colon Cancer in February of this year. I had a colon resection with the placement of a temporary ostomy for 3 months, which was the plan, and was considered cancer-free. Fast forward to June when the reversal was completed, I went home and the next day woke up in extreme pain. It took two trips to the ER and several doctors and nurses ignoring me before they figured out the anastomosis failed and I required emergency surgery. I was septic, had peritonitis, and a new ostomy. I spent a week and a half in the ICU and another week on the GI floor, had 3 NG tubes, pleural effusion, you name it. The experience was traumatic and painful. So this is where I am now. I am now facing living with a permanent ostomy as I believe I could never go through with another reversal due to PTSD and fear of another failure. My surgeon told me there was an 11% risk of this; in research, it looks closer to 30%. If you made it this far, thanks for reading.

Nini4 · Accepted Answer

Hi Ariestar85,
You have been through quite a bit. First of all, welcome to the community. I found this site when I had my surgery; I didn't want or expect a colostomy. However, a perforated bowel, sepsis, and intestinal bleeding said otherwise.
I'm so sorry to hear of the failed reversal and the pain you have experienced. At the time, I was told there was a possibility of reversal. I have made the decision that I am not having it done. Personal reasons, but like you stated, I don't want to risk a failure, as well as a return of the horrible pain, and another surgery.
The depression, anxiety, and sadness are completely normal. You've had a life-changing situation. Luckily, you have found the most supportive, kind, and caring people here. I did not think I could ever accept what happened to me. But joining this group saved me. I hope you find comfort and gain knowledge here.
Take care!

Morning glory · Answer

Welcome to the group. I am so sorry that you had to go through so much and that your reversal failed. Give yourself some time to heal. We are all here for you.

DexieB · Answer

Hello, and welcome. I understand your struggle! I was diagnosed with colon cancer in February of 2023. The polyp had been removed, margins were clear, everything looked good... but for some reason, 2 months later I was called and sent for a Flexible Sigmoidoscopy with resection - basically a biopsy to make sure they got all of the cancer.
I was terrified of having cancer, and the general surgeon who had removed the polyp and ordered this biopsy said it was necessary... my normal doctor who did my pre-op physical didn't have any reservations about it... so I did the procedure and my colon was perforated during this procedure. I didn't know until 4 or 5 days later when I ended up in extreme pain, peritonitis, sepsis, and had an emergency Hartmann's procedure - woke up with a colostomy. 21 days in the hospital with fevers over 104 for many days.
It was such a horrific experience, and I had PTSD afterward and did not trust any doctor except the surgeon (a colorectal specialist) who saved me. He told me that the procedure that caused my perforation was high risk and he doesn't even know why it was done - total wrong course of action in his opinion, and he was very angry about it. I transferred all my care to him because I trust him so much. I am not sure if your doctor is a colorectal specialist - if not, I would advise finding one.
I didn't know if I could go through with the reversal - but I did 8 months later. Luckily, it went great - but I can understand how you would not want to go through another reversal after that. My surgeon would not perform my reversal for at least 6 months - he told me 6 months was the earliest he would do a reversal. I am so sorry and I hope you can find healing in the coming months - physically and emotionally. You are not alone.

IGGIE · Answer

I would say if you have a stoma and you're handling it okay and it's better than before you had a stoma operation, then why try a reversal with an unknown outcome? A stoma really is a lifesaver. Regards, IGGIE

TerryLT · Answer

You have been through a lot, but you will come out the other side. The idea of a permanent ostomy may seem like too much to take, but give yourself time. You can and will gain acceptance. You are still healing physically and emotionally and probably shouldn't expect too much from yourself. A life with an ostomy can be as good and fulfilling as you want to make it. We are all here for you with support and advice. Take it a day at a time.
Terry

Marjatta · Answer

Welcome to the forum Ariestar85!
I understand your frustration and fears about having a permanent ostomy (a colostomy, I believe). Your circumstances were extremely traumatic, and my heart goes out to you for that.
While it's certainly a life-saving procedure, a permanent ostomy is also a life-changing event on so many levels. Many of us here had no choice in the matter except to choose life over the alternative (death).
At the same time, it is very possible to enjoy a fulfilling, abundantly loving, amazing life, even having this new appendage to your body. Each person is unique, so there's no "one-size-fits-all" in terms of how you'll adjust.
This might be a good time to have another discussion with your surgeon, beyond just the statistics of success or failure if deciding to try again to have the ostomy reversed. You just survived cancer, failed procedures, and complications galore. PTSD added to the anxiety factor, as well. By the way, if you also want to get a second opinion, you are very much entitled to do so.
Pause, take some long, deep breaths and realize that you don't have to make a decision right away (unless there is a medical reason to do so). All of us here will support you no matter what you decide.
M
xo

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