Life after TME surgery?

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 . 

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.

 

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!!

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.

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.)

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!

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.