LAR surgery experiences

You say your quality of life will be altered.I know I am older than you but I had a larger op,a panproctocolectomy with a permanent iliostomy and if you read my bio you will see that my quality of life is no worse and in fact perfectly normal.so please dont assume the worst.

Kath

Please don’t assume the worst and that quality of life will be badly affected. I’ve had a bigger surgery-a total pelvic exenteration-so I have a permanent colostomy and a urostomy. My life is much better without constant pain and perfectly normal. As my surgery was different and I can’t ever have a reversal, I can help with your specific questions, but I just wanted to say that imagining the worst will not be helpful when the reality might be very different.

Sarah xx

Hi

I had a LAR and a temporary ileostomy in 2019-20. I had keyhole assisted surgery and was out of hospital in 5 days. My stoma nurses were very supportive, so I knew what to do and expect once I got home. I was driving albeit very slowly and only locally within three weeks to enable me to walk my dogs! My stoma reversal was pretty straightforward and happened after only four months. I was quite cautious about reintroducing foods that I’d always eaten before surgery, but just be sensible and you should be okay. I found that drinking with a meal was a problem, as there’s not much storage space as I call it! Other than that the only other real change has been in my bowel habit. It’s not a big thing, just now it’s an evening rather than a morning habit. Wishing you lots of luck and positivity for a great outcome.

Hi Leighsp

That sounds like a difficult choice to make.  I had LAR surgery in June 2021 (I wasn't given a choice) which resulted in an ileostomy.  The surgery itself sounded incredibly frightening but, to be honest, wasn't as bad as I had expected.  I was admitted on the Monday morning, spent the first 2 nights in ITU but, despite that, was up and walking on the Tuesday morning, dealing with my stoma and tackling stairs by the Wednesday morning and discharged by the Friday morning.  I had really bad back pain for the first 24 hours for which I was given an injection but nothing to speak of after that. 

Once home I gradually built up exercise by walking just a little bit further every day.  Yes, it was very slow to start with, and frustrating, but you just need to keep at it without overdoing things.  The stoma was tricky initially, I won't lie (and it sometimes had me in tears). I kept getting leaks which was really demoralising as I just couldn't think what I was doing wrong. However, this was partially due to not having seen a specialist stoma nurse either before or after surgery - there wasn't one available because of illness and a vacancy. Once the new nurse was in post and I received proper help (including a change of pouch from a flat one to a convex one) things improved 100%.  The stoma doesn't impact on my lifestyle now and I continue to live my life the same as before.  I can eat what I like, walk for miles, travel, wear the same clothes - just normal things really. I was offered a reversal a couple of months ago but, taking into consideration all the different pros and cons, decided against it. It was a purely personal choice that I felt was right for me.

Diet wise, you need to be careful for the first few weeks. Mostly bland "white" food (chicken, fish, white bread etc) but other stuff can then get introduced gradually. I eat a very varied diet including fruit, veg and nuts and the only thing I've found that's a bit hit or miss is eggs which sometimes (not always) upset my system.

For hospital I'd suggest that you take a phone with a long charging cable, stuff to read or crosswords, word puzzles etc, at least 3 sets of PJ's or nightie, some comfy jogging bottoms, something non-fizzy to drink, ear plugs for at night.  I was also told to take chewing gum - and had to chew it for 20 minutes, 3 times a day  to stimulate the bowel after surgery (as it doesn't like to be handled after surgery).  Due to the covid situation at the time I wasn't allowed visitors at all so it was a long day!

Good luck with the op. You'll be relieved once it's over and the cancer has been removed. Just take it one day at a time and accept any offers of help. x

Hi 

I had a LAR August 4th 2021 with an Ileostomy.
I was so delighted to get that cancer out and I found living with the stoma easier than living with the cancer. I ate, drank travelled flew my life was full and I enjoyed every minute. 
I had lots of advice here and tips on travelling with the stoma I called her Whoopi. I wanted a strong female name that would do the job and she really did. 
Friday I had a reversal and I’m early days so all a little bit unknown at the mo. Again there’s plenty of advice here 

Good Luck with your operation 

Hi, Leighsp, I had a LAR with the TME, and didn't get any stoma, they managed a join, which has worked. Before they thought I was T3N1M0 They did find vascular invasion but 0/40 nodes were tested, so ended up T3N0 V1M0  with adjuvant chemo. I was up and walking late the next day. Operated late Monday out Friday. So a stoma is not a given, unless you have been told to expect it. You are marked up regardless, but I think they always do their best. I can eat most things, though I do still 'cluster' sometimes. Hope this helps! All the best

Thank you, I am worried about after the reversal and constantly going to the toilet and such as I’m having part of my rectum removed. I can anticipate for the first few months it will be difficult but hope it isn’t forever 

Thank you, I know it’s no good to overthink and presume the worst. I just keep feeling a little sorry for myself how I’m facing this and possibly issues after with the reversal! Just hoping the surgery goes all ok and I’m not waiting too long to reverse it x

Leighsp

I like you thought about the reversal a lot.
Once I had the stoma and I had a great system of sorting it I had a great time. It’s no bother. As time went by I wasn’t sure if it would be possible so I fully accepted it and planned holidays etc. then I was I done and the stoma is now gone. 
Take one step at a time and don’t worry about the what ifs. 
I made my choice to have the reversal purely because I thought I may regret it if I didn’t. 
Things at the moment aren’t great but they’ll improve I’m very early days and I took the decision to try a reversal 

Im sure you will do the same when the times right 

I cant help re reversal as my iliostomy is permanent.I had no choice.but certainly take one day at a time and dont worry about having a stoma.honestly they are no bother once you get used to them,which doesnt take long

Kath