Quality of life after ultra low or very low anastomosis?

TomAsh
TomAsh Member Posts: 15 Member
edited September 2022 in Colorectal Cancer #1

If you’ve had very low rectal cancer and received Total Mesorectal Excision and a very low colo-anal anastomosis surgery is your bowel emptying function OK, or do you have severe, persistent fecal incontinence and other LAR syndrome symptoms? Are you constantly on a look-out for a toilet? Can you make it on time or are diapers and soiled clothes the daily reality? Are sports, even walks, work and long distance travel so challenging that you wish you had a colostomy? Were your uro-genital nerves nicked and urine incontinence is also a problem? Is sex problematic?


Why I’m asking: I’m 48 y.o. male American living in the Netherlands. At the beginning of October 2022 I was diagnosed with a cT3N2 rectal tumor 1-2cm from AV (5cm from external AV). After scouring websites of U.S. cancer centers and getting a remote second opinion from a medical oncologist in the U.S., I was treated with Total Neo-Adjuvant protocol (5x 5Gy; 6x CAPOX; Nov 2021 - May 2022). The tumor was reduced to ycT1-2N0. Though the original goal of TNT was Non-Operative Management, already at midpoint of CAPOX I was warned that surgery will be expected. At he end of chemo, in mid May, I was told that I had an incomplete response and that APR with a permanent colostomy would be the best surgical treatment for me. I was floored, so I got 6 weeks to think it over. Again I took to the websites and asking surgeons for an opinion (though none from the U.S. responded). Most of the leading cancer centers in the U.S. ‘advertise’ to “do everything possible, use the most advanced techniques to spare the sphincter and normal bowel function”. I conveyed this to my treatment team. After my end of June checkup, I was told by the chief surgeon on my treatment team that surgery is urgent since my tumor is growing again, but that despite the very small margin of remaining healthy rectum an ultra-low anastomosis after robot assisted TME with a temporary ileostomy is technically possible. He said that results are usually challenging with incontinence and LARS pretty much guaranteed and potentially permanent. I was just so elated that I can remain more or less anatomically correct, I initially picked the raTME-anastomosis for my surgery. But doubts set in. Scientific publications mostly describe long term (after 36 months) or permanent severe to moderate fecal incontinence and LARS following low and especially ultra low anastomosis. I had a second opinion from a very experienced local surgeon who reiterated the concerns for incontinence and LARS in active middle age vs manageability of colostomy. I had very revealing talks with the surgical nurse practitioner and the wound and colostomy nurse. And finally a week after the offer, the chief surgeon called me to say that the multidisciplinary treatment team conferred again and that they are again recommending APR+permanent colostomy over TME+anastomosis+temporary ileostomy because of lower chance for local recurrence and that a permanent colostomy is more manageable than a poorly functioning bowel. But the choice is mine. I need to let them know within days or at most a couple of weeks because they are planning the surgery for me around August 23. Please, let me know how it went for you.

Comments

  • Pharmacy1
    Pharmacy1 Member Posts: 4 Member

    That was quite a lengthy statement with a question, or many questions in there.. if the question is “ what is life like with an ileostomy” I can answer that for you.. I was diagnosed In September of 2021, and feel as though my life has been on hold for this past year. I too had chemo, and radiation with oral chemo, then in May had a LAR… my ileostomy is temporary , the plan is to have it reversed in in September or October are you asking if like will be much different after this procedure. I can offer some information on this.

    if I am off base on your question, forgive me.

  • Pharmacy1
    Pharmacy1 Member Posts: 4 Member


  • TomAsh
    TomAsh Member Posts: 15 Member

    Thanks for reaching out. Yes, do tell how is life with an ileostomy and if you are looking forward to reversal and hoping for normal function.

    The quality of life at outcome of your total treatment is what I'm looking for. I would also love to hear from people who had ULAR or LAR 3-5 years ago.

    I'm being steered toward the APR with permanent colostomy. There is no talk of recovery of function after a very low anastomosis, only bad or worse fecal incontinence and other LARS problems.

  • Pharmacy1
    Pharmacy1 Member Posts: 4 Member

    That was quite a lengthy statement with a question, or many questions in there.. if the question is “ what is life like with an ileostomy” I can answer that for you.. I was diagnosed In September of 2021, and feel as though my life has been on hold for this past year. I too had chemo, and radiation with oral chemo, then in May had a LAR… my ileostomy is temporary , the plan is to have it reversed in in September or October are you asking if like will be much different after this procedure. I can offer some information on this.

    if I am off base on your question, forgive me.

  • Pharmacy1
    Pharmacy1 Member Posts: 4 Member

    I’m glad I did understand your question, life with an ileostomy is a bit of a challenge at first, I have had it now for two months, the first few weeks were not pleasant at all. Mostly because I could not get the darn thing from leaking. After a month of frustration, I saw my surgeon, she instructed me to attach the barrier ring as close to the stoma’s as I could, leaving no room for a leakage, my stoma was facing downward, so an additional half of a ring was placed on the previous ring and kind of forced the stoma upward. This has worked perfectly since. Every visiting nurse that came here, never ever explained this to me. Now that I am comfortable with this, it’s almost time to reverse. How do I feel about this… I am scared, I am very active and have learned to plan meals and bathroom visits around this new addition. I’m nervous once I have to make a mad dash to the bathroom numerous times a day, I hope I won’t regret the reversal..

    let me tell you, this is the farthest thing from what I was saying before surgery… seems I can plan bathroom situations with this, not so sure after reversal. I don’t want to be out on a five mile hike, far from a bathroom and need to make a stop. This was such a different year than any other in my life, once I decide to reverse, it’s too late to go back. I am not a fan of surgery either.

    i am anxious to read other responses to your situation, I learn something every day! Hope to see more answers soon…

    best of luck if I don’t.

  • vivgrl
    vivgrl Member Posts: 34 Member

    I can comment only on a permanent colostomy which I have had for two years now. It is completely manageable. I use a two piece "appliance" which consists of a removable bag and a wafer (I think that's what they call the removable piece that attaches to your skin) and a ring that goes on the wafer to protect your skin. Very simple and easy to use but there's a lot of variety in terms of the type of appliance available (one piece, two piece, size bags, etc.). You just have to make sure you keep the skin around your stoma clean - I haven't had any problems with that.

    The placement of the stoma is important in terms of clothing - i.e. where the waist of your pants sit on your body. You'll get pre-marked so you'll know where they're going to put it. I'd also ask your doctor how far out it will protrude. My protrudes a lot (ugly) but I've read that some don't protrude much at all which can cause problems.

    Some medicines have given me diarrhea but with the bag I don't have to worry - it all goes there and then I change it. Otherwise, I would have been running to the bathroom and probably wouldn't have made it.

    When I had the surgery, I asked if it was reversible. I was told that there could be complications with a reversal and I said "forget it."

    I do miss being able to wear certain kinds of clothes but I've got much bigger problems than that with the cancer.

    Hope that helps!

  • TomAsh
    TomAsh Member Posts: 15 Member

    Thank you for your comments. I get that life with a permanent colostomy is manageable, but if I have a choice not to get one and have ULAR sphincter sparing surgery instead, would more or less normal function be restored? There are conflicting study reports on this. And I don't see much comments on this forum long term past such surgery.

  • vivgrl
    vivgrl Member Posts: 34 Member

    I don't know anything about ULAR sphincter sparing surgery - I just wanted to let you know my experience with a colostomy. Other people have different experiences with colostomies - I have read that some leak or need to be repaired but I, thank goodness, have not experienced those problems. You are right to do as much research as possible. My surgery was an emergency so I had no opportunity to research which is why I mentioned the protruding factor - I would have asked about that had I known. I hope that whichever choice you make ends up being a good one for your quality of life.

  • nhernadi
    nhernadi Member Posts: 3 Member

    I had rectal cancer with a very low sphincter sparing surgery almost 30 years ago. After recovery from surgery, I experienced frequent urgency and incontinence with my bowels. What I decided to do was to try and cleanse my bowels with an enema using a rubber water bottle and hose. I found this to work quite well. I have to do it every 2 to 3 days, and it takes about an hour or 2 to complete the process. This has allowed me to continue with completely normal life other than the inconvenience of a couple of hours every few days. I have been doing this for over 25 years now. I am currently 77 years old.

    Has anyone else tried this method of coping with this issue?

  • nhernadi
    nhernadi Member Posts: 3 Member

    Having read your post, I posted a comment, but thought I should also reply to yours directly. At age 48, 29 years ago, I was diagnosed with rectal cancer. I had surgery with a very low sphincter sparing procedure. I was marked for a colostomy, but the surgeon was able to do a very low colo-anal anastomosis. After recovery I experienced frequent urgency and incontinence with my bowels, resulting in a rather poor quality of life, and I almost wished for a colostomy. However, after hearing about people doing periodic bowel cleansings for a variety of reasons, I thought I might try this for my condition. What I decided to do was to cleanse my bowels with an enema using a rubber water bottle and hose. I found this to work quite well. I have to do this every 2 to 3 days, and it takes about an hour or 2 to complete the process. This has allowed me to continue with a completely normal life other than the inconvenience of a couple of hours every few days. I have been doing this for over 25 years now. I am currently 77 years old, and I am quite happy that the surgeon decided not to give me a colostomy.

  • TomAsh
    TomAsh Member Posts: 15 Member

    Thank you for your describing your temporary ileostomy experience and showing you are human. I think all of us facing treatment for cancer and these surgeries are feeling scared. To be brave is to feel scared but keep going.

    So, You are Brave. I wish you a quick reversal procedure and really good coaches in re-learning bowel function, maybe a dietician and the unending support of your family, friends and work mates.

    I also thought what would I do, if I get an anastomosis, when I'm physically able to take long bike rides or hikes. I imagine, I will for quite a while have to carry wet wipes, some small towels, a change of pants or two, some diapers, and maybe an XXL camelback to wash myself up in the bushes.

    It helps if you've had kids and dealt with all the diapers, stoping to let them squat on the side of the road and dealing with accidents in bed or elsewhere. I love how toddlers and little kids are unashamed about their functions. I think I need to practice sitting in a mud puddle, splashing around with a giddy grin on my face and say "Poop".

  • TomAsh
    TomAsh Member Posts: 15 Member

    Dear Nhernadi, Thank you for your honest description. It is encouraging that you found a way around a difficult situation. I've only heard from a stoma nurse about the possibilities of enema "teaching" the stoma to produce regularly every 24 to 48 hours. It's good to hear this works for someone with a very low anastomosis. It's also great to hear that you are doing well 30 years on and I wish you many, many happy years more!

  • TomAsh
    TomAsh Member Posts: 15 Member

    Dear Nhernadi, Thank you for your honest description. It is encouraging that you found a way around a difficult situation. I've only heard from a stoma nurse about the possibilities of enema "teaching" the stoma to produce regularly every 24 to 48 hours. It's good to hear this works for someone with a very low anastomosis. It's also great to hear that you are doing well 30 years on and I wish you many, many happy years more!