APR Surgery - ever done to correct bowel incontinence after Chemo-Rad?

Kim Gaia

It is my understanding from everything my doctors and people here are saying that chemoradiation is the first-line treatment for anal cancer. And should that fail to get all of the cancer, then APR (abdominal-perineal resection) with lifetime colostomy is performed to get the rest. But what if the chemoradiation is successful in eliminating all the cancer, but leaves the patient with permanent total bowel incontinence? Does the patient just wear Depends/Teva briefs for the rest of his/her life and have some activities curtailed because of bowel incontinence? Or is APR+colostomy performed in that case, even if no cancer is left? Just trying to ascertain what may lie ahead. And yes of course I will discuss with my doctors. That goes without saying. Canvasing a group like this is also useful though.

kim

 

eihtak

Kim Gaia

Hi,

There are reasons other than a side effect from radiation for bowel incontinence, and so yes, an ostomy can be successful in the treatment of that condition. Disease, nerve damage, spinal injury, IBS and Crohns are just a few reasons that people suffer with incontinence.

I had ostomy surgery prior to starting my chemo/rad for stage 3b anal cancer in 2011. Due to the size and placement in combination with my overall poor health at the time, my doctor did not think I would make it through treatment without serious complication if not done. There are several ways to perform this surgery and some are more complicated with longer healing time and more risks than others. I have what is called a "loop ostomy" and while mine is now permanent, it is done in a way that leaves the potential for reversal and the rectum and anus are still intact yet as I say, "out of commission"...unfortunately the radiation damage itself, left much scar tissue and a successful reversal never happened.

After a period of adjustment, I live as normal and active a life as any other 60 year old woman, maybe more. I travel whenever possible, swim, chase grandkids around baseball and soccer fields, and just this afternoon challenged one to a pretty intense dance dance revolution competition!

It seems that living with bowel incontinence would limit ones quality of life far more than living with an ostomy if those were the only choices. Usually, though, this treatment does NOT leave one with total incontinence but rather the need to manage a limited diet. I will hope and pray that a full and happy life is all that is what lies in your future!

katheryn

Kim Gaia

eihtak said:

Kim Gaia

Hi,

There are reasons other than a side effect from radiation for bowel incontinence, and so yes, an ostomy can be successful in the treatment of that condition. Disease, nerve damage, spinal injury, IBS and Crohns are just a few reasons that people suffer with incontinence.

I had ostomy surgery prior to starting my chemo/rad for stage 3b anal cancer in 2011. Due to the size and placement in combination with my overall poor health at the time, my doctor did not think I would make it through treatment without serious complication if not done. There are several ways to perform this surgery and some are more complicated with longer healing time and more risks than others. I have what is called a "loop ostomy" and while mine is now permanent, it is done in a way that leaves the potential for reversal and the rectum and anus are still intact yet as I say, "out of commission"...unfortunately the radiation damage itself, left much scar tissue and a successful reversal never happened.

After a period of adjustment, I live as normal and active a life as any other 60 year old woman, maybe more. I travel whenever possible, swim, chase grandkids around baseball and soccer fields, and just this afternoon challenged one to a pretty intense dance dance revolution competition!

It seems that living with bowel incontinence would limit ones quality of life far more than living with an ostomy if those were the only choices. Usually, though, this treatment does NOT leave one with total incontinence but rather the need to manage a limited diet. I will hope and pray that a full and happy life is all that is what lies in your future!

katheryn

Thank you very much Katheryn.

Thank you very much Katheryn. That was a really helpful answer for me.

My mom (oddly perhaps) was diagnosed with the same cancer, anal cancer, that I now have. She was diagnosed at age 87. She went through radiation but not the chemo, on doctor's advice. I think they thought at her age it would be too rough on her. And they also shortened her radiation to just 20 sessions. It was not successful. The cancer initally appear to shrink, but then regrew quite rapidly. So she had APR with colostomy and lived the final 7 years of her life that way. She healed relatively quickly from the surgery and without incident. And life with an ostomy bag did not seem to alter her usual routine (although of course she was much older than most of us here). My brother and I were so thankful to have her with us those additional 7 years that the surgery gave her. From that experience, I formed the opinion that life with an ostomy bag is not the end of the world and can give you a life of a lot more normalcy and freedom than permanent bowel incontinece would.

kim

Wisteria83

APR

When I saw my rad onc for the last time before I moved (last week was the move)  He told me that if I were to continue to have fecal incontinence, the doctors would perform an APR if I wanted it.  I really, really DON'T want it.  My anal sphincter seems pretty decent, it's just that I leak occasionally, and always have urgency.  APR would be a last resort for me.

Ouch_Ouch_Ouch

Other options.

1. Try all the products you can. If you contact manufacturers, they will most likely send you samples to try. To find out what exists in the wild, visit some medical supply companies in person or online.

2. Dietary changes - Avoid foods that you KNOW trouble you. Consider a low residue diet (low fiber) for a while. I went on a FODMAP diet to help with my outta control Irritable Bowel Syndrome - IBS - (the chemotherapy drove it crazy). FODMAPs are the various long-chain sugars that IBS people have trouble absorbing. After achieving a 4-6 week period of abstinence, you will reintroduce foods slowly to ascertain what is really bothering you. It's not a difficult diet, but it really tests your willpower! 

For these diets, PLEASE work with a Registered Dietician who will guide you and make sure your specialized diet is well-rounded. So far, in the USA, it's hard to find a Dietician trained in FODMAPism. You may have to look for one in a metropolitan hospital. Some Dieticians will do telephone consults.

3. Medications like Peptobysmol and Immodium (USA) can help control diarrhea. Prescriptions meds are also available, if needed, like Lomotil. Take what the Gastroenterologist recommends.

4. Bowel Control Therapist - Helps you gain more muscle control through targeted excercises, to increase coordination, and to establish a toilet schedule.

5. Surgical interventions that include sphincter repair (though it may not be an option if your tissues are too damaged by radiation) and inplantation of a neural root stimulator. The device keeps the sphincter closed until you need to go, then once comfortably seated, you use the remote control to release the sphincter. (The control is similar to the remote you get with air conditioners. However, if you loose it, you may blow up! Just a guess - I don't really know.) The Colorectal doctor showed me a Medtronic device. But I felt too sore at the time to even consider another surgery.

http://www.medtronic.com/us-en/patients/treatments-therapies/bowel-control/about/your-journey.html

* [In my case, I was helped a lot by the FODMAP diet taken with the digestive enzymes, lactase and galactosidase ("Beano" in the USA). I only have trouble now if I stray too far from what's allowed or if I forget to take the enzymes. I tried the timed-released peppermint capsules ("IBGard" in the USA), but they didn't seem to help me, though others find them helpful.] 

* Some of these recommendations also hold true for urinary incontinence: a variety of products, medications, and neural root stimulators.

https://www.webmd.com/urinary-incontinence-oab/overactive-bladder-electrical-stimulation#1

linda7408

Kim Gaia

Hi Kim. I now have a permanent colostomy. Not a big deal at all. I named mine Stanley. I saw your post was from March. If you still have any questions, let me know. I had noone to ask at the time and that was frustrating. I guess I should have looked harder and found a lite like this.

Kim Gaia

linda7408 said:

Kim Gaia

Hi Kim. I now have a permanent colostomy. Not a big deal at all. I named mine Stanley. I saw your post was from March. If you still have any questions, let me know. I had noone to ask at the time and that was frustrating. I guess I should have looked harder and found a lite like this.

Thanks Linda. I will be

Thanks Linda. I will be starting chemo-radiation in a couple of weeks (July 16th). I was asking my colostomy question on a 'what if' basis... trying to foresee the possible options down the road. Very glad to know your colostomy not a big deal. That's reassuring.

kim