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Life after TME surgery?

pbiflyer's picture
pbiflyer
Posts: 6
Joined: Jan 2021

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.

worriedson714's picture
worriedson714
Posts: 257
Joined: Dec 2019

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's picture
pbiflyer
Posts: 6
Joined: Jan 2021

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's picture
SnapDragon2
Posts: 517
Joined: Nov 2019

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's picture
Annabelle41415
Posts: 6697
Joined: Feb 2009

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
Posts: 1282
Joined: Apr 2012

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
Posts: 110
Joined: Jan 2018

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's picture
darcher
Posts: 298
Joined: Jun 2017

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.

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