Life after TME surgery?

pbiflyer
pbiflyer Member Posts: 6 Member
edited September 2022 in Colorectal Cancer #1

Hi,

I am 58. I was diagnosed with rectal cancer. A colonoscopy removed a small polyp using electric cauterization, but was not thought to be worrisome until the lab came back. Lab came back as cancerous to the edge.  Originally, due to a follow up sigmoidoscopy, where ink was used to identify the spot, but caused swelling in the area,  it was diagnosed as T3N1.

Subsequent Endopic ultra sounds did not show a tumor. PET scan shows uptake in the area, but could be to inflamation due to all the procedures (5 so far). They have downstaged it to at most a T2, maybe even T1.

However multiple doctors have recommended TME surgery, removing the entire rectum, to ensure no long term issues. Some want pre-operative chemo/radiation.

I travel extensvely for both work and pleasure. It seems that life after TME surgery has many challenges. I would hate to go through the surgery only to find out that they had gotten the whole tumor with the original removal of the polyp.

I am wondering if people could share their experiences, post TME surgery? How often/many times a day are bowle movements? Other issues? How impactful on day to day life? Does your diet have to change? What changes have you had to make?  Can I do long flights? Spend an entire day hiking/outdoor activies where I might be hours without access to a bathroom?

Thanks for any insight.

Comments

  • worriedson714
    worriedson714 Member Posts: 333 Member
    edited January 2021 #2
    My dad's story

    My dad has stage 3 rectal cancer and cause of the tumor being so close to the rectum had to have his rectum removed . The worse thing is the removed his rectum and didn't even get all the cancer and now he is stuck with a ostomy bag . Also he has a uriostomy bag so he has alot of struggles mentally with depression and body image issues from both bags . His ostomy bag has had alot of problems if he eats to much or something greasy he will end up with diaherra and that's the last thing you want with a ostomy bag . I doubt you would be able to do long flights unless you become really good at emptying it and cleaning it up in a small airplane bathroom . Amount of bowl movements is about the same but leaks can happen with the bag he's been lucky and not had leaks alot but some do . Hiking and being outside I wouldn't think you could do cause idk where you would empty it or how cause my dad always has to have a cup and bag around never knows when he needs to empty it . My step mom and I help my dad with all of this and it's still a major lifestyle change for him and my whole family if you got any more questions let me know I been helping my dad deal with this for 2 years . 

  • pbiflyer
    pbiflyer Member Posts: 6 Member
    edited January 2021 #3

    My dad's story

    My dad has stage 3 rectal cancer and cause of the tumor being so close to the rectum had to have his rectum removed . The worse thing is the removed his rectum and didn't even get all the cancer and now he is stuck with a ostomy bag . Also he has a uriostomy bag so he has alot of struggles mentally with depression and body image issues from both bags . His ostomy bag has had alot of problems if he eats to much or something greasy he will end up with diaherra and that's the last thing you want with a ostomy bag . I doubt you would be able to do long flights unless you become really good at emptying it and cleaning it up in a small airplane bathroom . Amount of bowl movements is about the same but leaks can happen with the bag he's been lucky and not had leaks alot but some do . Hiking and being outside I wouldn't think you could do cause idk where you would empty it or how cause my dad always has to have a cup and bag around never knows when he needs to empty it . My step mom and I help my dad with all of this and it's still a major lifestyle change for him and my whole family if you got any more questions let me know I been helping my dad deal with this for 2 years . 

    Thanks, I appreciate it.

    Thanks, I appreciate it.

    In my case the ostomy bag would hopefully be temporary. I was wondering long term, where the they are able to attach the colon to the sphincter.

     

  • SnapDragon2
    SnapDragon2 Member Posts: 683 Member
    edited January 2021 #4
    The way my surgeon put it is

    The way my surgeon put it is you don't want to leave a cancer graveyard.  Cancer is something you don't want to guess at.  

    Someone I talk to alot had TME.  Doing great.  Had ileo kind ostomy (temp).  Reconnected after adjuvant chemo.  Going on with a normal life.

     

  • Annabelle41415
    Annabelle41415 Member Posts: 6,728 Member
    edited January 2021 #5
    J-Pouch

    You might want to read my "About Me" page as my whole rectum was removed and a J-Pouch was made from the large intestine.  Although I'm not without bathroom issues, I'm able to enjoy life, but not as much as a normal person with a real rectum.  TruBrit has the same issue, but think she is able to control her bathroom issues with diet, but mine I'm not able to.  Once I've eaten it goes right through me, but it can go through me any time of the day, so I'm not wanting to be away from a bathroom at certain times of the day.  You might have a perfectly normal experience if you have an ostomy though.  It might be a little difficult to change/empty an ostomy on a long trip though.  Wait to see what they actually want to do with your upcoming plan moving forward.  Welcome to the board, and we are here to answer any questions you have.  Wishing you the best in upcoming scans/appointments/doctors and decisions.  You have joined an amazing group of people.

    Kim

  • danker
    danker Member Posts: 1,276 Member
    After effect

    I had 2/3 of my rectom removed. After 6 weeks with a bag, colon reattached,  developed a fistula, so 6 more weeks with bag,  Fistula healed itself from inside out,  NED ever since.

    That is 10years NED!  Ocasional diaarrhea only ongoing sid effect.  Pretty much live a normal life!!!

    All of this from age 77 to 88, so it can be beat!!

  • Pamcakes
    Pamcakes Member Posts: 110
    My husband had an APR in

    My husband had an APR in March 2019. His entire rectum was removed and a Barbie, well Ken butt. he is stage 4 & 41. He said he wished he would have had the ostomy when his cancer was first found(2017). He says the ostomy gave him quality of life back. He does everything we did before cancer. He swims, dives, travels to the islands(pre Covid), goes out for hours in the boat, everything! We've been very blessed,zero issues With the ostomy. he got a small amount of skin breakdown the first week, but that was due to having a wrong type of bag for his stoma. He can chnge the bag without issues, but I usually change it for him so I can ensure all is well. However, it's not necessary to have someone due it for you. I just do it because he's mine & I want to help him as much as possiae!❤️

  • darcher
    darcher Member Posts: 304 Member
    Not quite the same
    In my case the tumour was far up enough that only part of the rectum was removed and didn't get a bag at all. But, it still created "issues". Nearly 3 years out and I can tell you it never gets back to the normal it was before. There are days I go 10 times and others not at all. You'll still need to have an aisle seat on a plane or upgrade to business class if possible for quicker and better access because you never know. You'll still need to "be careful" in all situations keeping a bathroom's location as a point of knowledge. It's not the best situation but it's doable and at least you're still alive. Then again, we're all different and I've heard stories of people who got back to the normal that is normal.
  • PurplePeople
    PurplePeople Member Posts: 3 Member

    My husband has a fistula in his colon, and he is absolutely terrified of having a colostomy. Can you give me some words of reassurance in terms of managing it?

  • vivgrl
    vivgrl Member Posts: 34 Member

    I have Stage IV cancer and had a colostomy two years ago. For me, it was either a colostomy or a burst colon so I had no hesitation getting the colostomy. Mine is permanent.

    I am able to live life normally with the colostomy. I tried different kinds of pouches, starting with an open-ended bag where you empty the contents. I put up with that for many months and then switched to a closed bag which I detach and throw away. I put the colostomy bag in an Armand Hammer bag because the AH bags block the odor (they're sold as litter bags but they work great for this purpose). I never have to think about getting to a bathroom quickly or after eating - my body goes when it goes and I just change the appliance.

    It's important to keep the skin around the colostomy clean and dry but that isn't difficult to do. There have been some medications which have caused extreme diarrhea and the bag is, honestly, a life saver because I don't have to try to get to the bathroom - which I don't even think would've been possible. The bag does interfere with some clothing choices but it does not interfere with activities.

    I have not had to change my eating habits/preferences. I'm also able to monitor what my colon is doing - you get a real sense of what's normal for you.

    This is my experience - I've read that others really don't want a colostomy or they got a colostomy and had issues with leakage or other problems. I've just been diagnosed with a hernia at the site of the colostomy but it is not causing any problems right now - just an unsightly bulge (which has been there almost from Day 1).

    (Also, when you get a colostomy, you can't leave the hospital until you "go". I couldn't "go" for 2 weeks. It was brutal.)

  • Wila
    Wila Member Posts: 2 Member

    Hi here. I am just now joining this group and happen to see your info. I have a sister same age as you that also has CRC diagnosed in 2019. Have you had your surgery and where are you now as far as treatment? Thanks for sharing if you are able.

  • BoulderSteve
    BoulderSteve Member Posts: 13 Member

    I'm not the poster you were replying to, but I'm in almost the same situation. I was diagnosed at stage 3 just after I turned 51. Mine was diagnosed just about two years ago.

    Unlike most of the others that I've read about on this forum, I went through chemo first (8 rounds), then radiation (5 weeks), then the surgeries. It seems like most folks here do the surgery first and then proceed to chemo/radiation. First surgery was to remove the tumor and do a temporary illiostomy. Then about two months later, I had the illiostomy reversed and I'm "back to normal". I am a year and a half out of chemo and I have some peripheral nerve damage remaining in my feet. My digestive system is challenging, but it's getting better as time goes on. Careful diet, like FODMAP, helped me during the recovery.

    Physically, I'm pretty much able to do everything I was able to do pre-cancer, but the big item that has changes is that I can't predict how long I'll feel "normal" at any given time. For example, I haven't been able to head out into the mountains for a half-day hike because I don't trust my gut enough to be away from a bathroom for that long. For shorter periods of time I am regaining trust in my body and I'm getting better at predicting how I will be feeling for the next few hours in the future. I bought a new bike shortly after I finished my surgeries and I have just recently logged over a thousand cumulative miles on it!

    I was pretty down emotionally during the process, but I feel like things are turning around for me personally. If your sister was active and healthy when she was first diagnosed, I'd like to believe that she'll be able to recover in time.

    Good luck to your sister!

  • Wila
    Wila Member Posts: 2 Member

    Hi Steve. Thanks so much for your reply. I am glad you are doing well, I'm impressed your able to bike. My sister has lymph involvement so she has severe lymphadenopathy on her left leg and she is very limited with mobility. She went through chemo, radiation and surgery then reversal like you did but her CEA started rising again and she was advised to continue chemo for life. This is where I am struggling as she has refused to do any more chemo. There are no major organ involvement from her PET scan except for it is in some lymph nodes. Did you have open surgery or robotic? Hope you will get to hike more mountains and bike farther along the way.

    Thanks again.

  • BoulderSteve
    BoulderSteve Member Posts: 13 Member

    In my case, I had a 10 cm tumor in the colon and there were three lymph nodes outside the intestine that were also affected. The cancer was outside the intestine, but it hadn't shown up in any other organs yet. I had an excellent surgeon and he removed the tumor and just over 30 surrounding lymph nodes. I was extremely fortunate that when they sent all the tissues to pathology, the margins were clean and with the exception of the very center of the original tumor, there was no viable cancer anywhere else. My body had reacted very well to the chemo and radiation treatment.

    Based on my general health combined with how well my cancer reacted to chemo and radiation, my oncologist was on the fence about me even needing surgery. I opted to go ahead with the surgery just to have closure on getting the cancer out of my body. In hindsight, I feel that I could probably go either way. With no surgery, I probably wouldn't have the gut issues that I've been experiencing and I probably could have maintained my activity level but the down side would be that the cancer was technically still there and it could reappear at any moment. With the surgery, I know that everything has been removed but I get to deal with the gut recovery issues.

    The surgeon did most of the work lithroscopically through about four small incisions. Unfortunately, the tumor was so large that there needed to be a pretty good sized (couple of inches) opening to remove it.