Rectal cancer-coloanal anastomosis vs perm colostomy

[Lisa]

Hi
I am 46 years old. Dx with rectal ca in march. I have been through chemo and radiation and now will be having surgery in about a month. The surgeon thinks he may be able to save my sphincter and do a coloanal anastomosis but he won't know until surgery. All my agonizing over this decision maybe for nothing. Has anyone had to make this decision? My surgeon does not seem optimistic about this option as the results are unpredictable. My stress level is back to first diagnosis days. I feel that if I have a chance to avoid an ostomy I should take it, however I am fearful that there may be worse things than a colostomy such as all the issues that come with frequency and urgency. I have 3 children that I want to be active with, I hope to get back to work and travel and enjoy life with my husband. I would be appreciative of any thoughts of people who have been there. Thank you.

[Sandywr]

I do not know much about coloanal anastomosis but when I looked it up it says the colon is attached directly to the anus. Will you still have the muscle control in your anus or will you become incontinent? If I had the choice and was incontinent, I would choose the bag. I love having my colostomy since it made my life so much better. I do everything I did before the surgery, which is only 6 months old. I live in Hawaii and go swimming, paddle boarding and whatever else I want to do. There is no stopping me. This is your decision and if you get the other surgery and not the colostomy, if you still have control then that would probably be a good option for you. Just go over the pros and cons of each and then decide. Just remember that having a colostomy is not the end of the world. It is actually fine.

[Lisa]

Thank you for your input. As far as I know the sphincter muscle remains intact but there are issues with frequency and urgency. The possibility of accidents exist but over time things can improve. Only there is no way of predicting how it will be or how much improvement you can expect. It helps me to hear from people like you, living a good life with a colostomy. This is all so overwhelming. I wish I didn't have to make a choice like this.

[To Good Health]

Hi Lisa
Sorry to hear that you have rectal cancer. Do you know how close to the anus the tumor is? Mine was so close that I think the surgery and radiation wrecked my anal spincter muscles so that after my ileostomy reversal, I was basically incontinent and eventually got a permanent colostomy. Looking back, it would have been better to have had a colostomy from the beginning. (one surgery versus three and therefore less adhesions)
However if your tumour is further away from the anus, you may have good results. So hard to know. Keep in touch. All the best,
TGH

[teri16]

i'm not sure if this will help but i had rectal cancer 4 years ago. i had surgery, refused the chemo and radiation and had the colostomy for 4 months before i was reattached minus my rectum. my doctor had also told me about the urgency but he never said anything about the pain. it was suppose to regulate itself after a year or so but now after 4 years i'm waiting to see my surgeon to get the colostomy back. i have tried everything i could with the help of my family doctor but nothing works i'm always in pain.
i don't mean to scare anyone but i have yet to meet someone in my condition who has a good life.

[Jachut]

I'm about the same age. My surgeon was pretty confident about being able to save it all and after my oleo stony reversal I never had any continence issues. However two years later I went in for a permanent colostomy due to the pouch scarring, stiffening up and prolapsing as radiation damage set in (it can take years). It was tough needing an enema to have a bowel movement and I am much much happier now but people differ in what they will tolerate to avoid a bag. It really is s non issue for me and I can easily say I wish I'd gone for a colostomy from the get go but that's with the benefit of hindsight. I'd have to encourage you to at least try it before making such a permanent decision! If you're not happy then you can always elect a colostomy later on.

[NEgirl]

Dear Lisa,

My situation was almost identical to To Good Health's. My tumor was very close to the anal sphincter. My surgeon recommended against it but I was so completely distraught (crying on her exam table at every appt and deciding I would rather be dead) over the thought of a colostomy she said she would try. As TGH experienced, I was completely incontinent. I lasted 6 months and by then I was very grateful for a colostomy. Looking back I know I would have spared myself a lot of misery had I just had the colostomy. Have a very honest talk with your surgeon about where the tumor is and what he/she honestly thinks your chances are. Even if successful consider the frequent bathroom trips some people have and ask yourself if you can live with that.

I have found a very good question to ask doctors to get an honest answer. Instead of "What do you think I should do?" ask "If I were your sister, mother, wife... what would you advise me to do?"

5 years later I'm doing just fine with the colostomy. It can be an inconvenience but it doesn't have to rule your life. You do get used to it even though at the beginning you feel like you won't.

All the best. Keep in touch.

Karen

[NEgirl]

I just looked at the date on your original post. Looks like I'm a little late to this party.

Have you made your decision?

[Lisa]

Hi NEgirl
I was in a terrible mental state right up to my surgery, which I had on jan 2. There turned out to be no option after all. Once the surgeon was in and measured all the margins , the tumor was just too low. I think he new that all along but like you ,I was distraught over the idea of a colostomy. He actually called my husband from the or to explain the situation. Fast forward 3 months and I am doing pretty well. I certainly see that a colostomy is not the worst thing that could happen to me. I'm still adjusting. Just started irrigating a couple of days ago, I'm hopeful that it will help me have more control and normalcy. At this point I am cancer free and praying to stay that way! That is the most important thing.
I'm sorry you had to go through such a rough time. I'm so grateful for all you on this forum. I don't think I would be coping so well without all of you, so thank you.
Lisa

[To Good Health]

Lisa, thanks for checking in. You sound pretty positive. Good for you for starting to irrigate! I haven't made that step yet but having a transverse colostomy now may not be satisfactory (for irrigating). I think you are fortunate that your surgeon did the measurements. Disappointing to have a permanent colostomy but better than temp. ileostomy, reversal and THEN permanent colostomy (my story and NEgirl's). All the best,
TGH

[thartin]

I am 9 years out from colon cancer. Stage III at initial diagnosis then metastases to lung 4 years later. Scans have been good. Problem is my bowels. I believe I have an anastomosis because the tumor was low in the rectum (could reach with finger tip). I saw a gastroenterologist and she has ordered a rectal test to check the muscles and see if there is a rectocele which could be causing my diarrhea and constipation, frequency, urgency, and incontinence. Very frustrating! Wondering if I should opt to have a permanent ileostomy/colostomy? Anyone have suggestions?