Turnbull-Cutait (T-C) procedure: Share your experiences

I am one of those people who have also had their anus removed. Still experiencing pain and discomfort, which I believe was caused by the procedure. I am currently under the care of Pelvic Floor Doctor attempting to solve the pain and discomfort.

I'm going to have a two-stage Turnbull-Cutait pull-through coloanal anastomosis. The procedure in itself does not scare me, but I'm dead worried about the hospital time between the two stages and the immediate, medium term post-op.
How has your surgery worked out for you?

Had both procedures done. Post treatment may require pelvic floor physical therapy. You may want to discuss this with your doctor.

@verol65
I’m 6 weeks post operation for the turnbull cutait operation. How did you get in. I’m desperate to speak to someone that’s had this operation

Hi, I’m from the UK and only the second person in my county to had the Turnbull cutait operation. I’m keen to hear from others who have had this operation. I’m post 6 weeks from my second op and have LARS. I’m in constant chronic pain and take codine. I have many questions like how long will my pain go on for, has anyone tried biofeedback, will I always be fecal incontinent, Will I always need to wear pull ups, has anyone had a stoma fitted because this operation failed. I look forward to hear from you.

@masonfoxy We could message privately, if you prefer.

I am now two years out of the surgery. In my case, it involved also a vaginal repair, since I had a rectovaginal fistule.

Questions for you: Where do you live? Did your doctor mention LARS (Low Anterior Resection Syndrome) to you? Are you in any in-person or online support group for that?

Before the surgery, I had a couple of months of therapy, I did some guided meditation with an app when I felt anxious, and I took a five-day trip with my husband a couple of weeks before. I also read a lot online about the surgery (LAR) and about LARS. I even made an appointment with my surgeon to ask him the 15 or 20 questions I had, and I spoke with one of the surgeon's patient who had undergone the same surgery. I prepared all I needed for the hospital stay and for the early post-op time at home.

The first step of the surgery took 5 hours. The first delay was due to a lot of gas from the prep which they needed to get rid of. The second thing that made the surgery longer than plan was that they discovered they couldn't use my omentum to put a barrier between my vagina and rectum as planned because I'm too thin. So they had to use a biological mesh. I was in quite some pain just after the surgery, but it got under control, until I had some Ensure in the following days, which provoked gases and bowel paralysis with immense pain. For three days I was under parenteral nutrition, then got the second step of the surgery, which lasted for about an hour. I still stayed for several days at the hospital because it was a long holiday week-end and the surgeon didn't want to release me without being absolutely sure I would not come back to the ER.

The first week was hard and culminate in a night of 25 trips to the bathroom with a burning butt. I called my surgeon in the middle of the night because I really was in too much pain. Since he was leaving on holiday, I saw his trusted colleague the next day; he had participated in the surgery. He changed my meds and removed the drain I still had hanging on my left side.

I consulted with a clinical nutritionist who helped me go through the first weeks of starting back on solid foods, a bit like a baby.

Three months after the surgery, I was able to go on a work trip requiring a one-hour flight for three days, and 4 months after the surgery, I visited my brother (2 1.5-hour flights to his place) for 10 days, with my brother, to rest. 14 months after the surgery, I went on a 10-day silent meditation retreat, with a vegetarian diet. I have taken flights to Europe to visit my parents. I live a rather normal life, with some adjustments and different habits and toilet processes.

Do you have specific questions, concerns, or doubts? I can feel your despair and anxiety. Ask anything, and I'll answer you to the best of my experience and knowledge with regard to living with LAR.

Sending you a big hug.

sorry you have to go through that pain. I have never heard of this operation, but it appears to me that the idea is to prevent leakage, though I would imagine that any operation there would disrupt normal bowel movements while it heals. I hope this is the case for you and you heal up very soon.

@verol65 Hi thank you for taking the time to message me. I line in the UK and haven’t spoken to any other person who is female about the procedure. I’m 8 weeks post op and living a nightmare of pain and LARS. My pain is horrific and no amount of different pain relief is helping. I cluster a lot and my stool and more on the hard side. How is your LARS now do you wear pull ups? Do you have accidents? How often do you pass a stool? Are you in any pain?

@masonfoxy
I'm sorry you are in so much pain and high level of LARS.

Is your pain internal? Is it the skin around the anus?
What is your diet like? What foods are you eating?
Are you taking loperamide o psylium husk o anything to try to regulate your bowel movements? Are you using a bidet and a squatty potty?

I consider my LARS to be in the lower levels. I cluster part of the time, and other times it's 5 or 6 or 7 bowel movements in a day, but not clustered. Occasionally, there is a day I don't go to the bathroom, and some days, I'll only go 2 or 3 times. It varies. I take it one day at a time.

I do have accidents occasionally, usually not that distressing and never embarrassing. When I travel or if I happen to have a bad cluster day, I'll wear washable menstrual pads designed to be used at night. They're really big at the back and have some kind of carbon thing that controls the smells. I have not worn pull ups at all.

I did have pelvic floor therapy with post tibial nerve stimulation (PTSN). It helped with the control, without being perfect. I also keep doing Kegel exercises.

I have learned to balance my diet between fibrous foods and foods that slow the instentinal transit like bananas. It's a balance of soluble and insoluble fiber that helps us. It tends to vary some from person to person.

Would you be interested in joining groups for people with LAR and LARS. on Facebook and online?

@kenc @verol65 @masonfoxy, I pulled your past and current post about the Turnbull-Cutait (T-C) procedure into its own discussion so that you can connect more easily together in one place.

See here:
- Turnbull-Cutait (T-C) procedure: Share your experiences https://connect.mayoclinic.org/discussion/turnbull-cutait-t-c-procedure-share-your-experiences/