Bowel cancer treatment and side effects

You can find lots of useful information about bowel cancer treatment on our website. You can also get information and support from our Ask the nurse service.

Lizsa

Looking for reassurance about my surgery

Hi all. So there was a cancellation and my surgery is now on Friday (17th). This is great news because I just want to get that evil tumour out.
However, I am so so nervous and I suppose I just wanted to share my fears with you lovely people who have been through similar in this club that nobody wants to join!
So my tumour is where the rectum meets the colon (12cm from anal verge). Surgeon seems quite positive he can remove it via keyhole with good margins and no stoma (although won't know until I wake up if there's a stoma).
I'm feeling very worried about the possible complications and the fact this is life changing major surgery. The nurse was telling me about illeus which sounds horrible. The surgeon was saying about there is a possibility that the join could leak and then I'd have to have further surgery. How would I know of its leaked? I've read that can be life threatening. Then I've been reading about LARS and I'm very worried about that. The surgeon said I'd be looser for a while and then it should settle down but I'm very worried about possible incontinence and the other LARS symptoms. Its hard to think about all this life changing stuff when I feel fine right now. I'm active and fit and run around with my 2 little girls, I don't want things to change. I think it all still seems a bit unreal, it's all happened so quickly and I haven't really got my head around it all yet.
I've also never had surgery so scared of everything! The general anaesthetic, the epidural, the pain, waking up with all the attachments, everything!
Anyway I think I'm rambling. Thanks for reading :x::x:

Mark McC

Hi @Lizsa

All the worries, anxieties and what’s ifs are perfectly normal, especially if you’ve never had major surgery before. But it’s great that it’s happening.

My first major surgery was my LAR in March 2021, keyhole, and the team were incredibly understanding in dealing with all my worries. I only felt a bit of pressure for the epidural then my legs went heavy. The anaesthetic sleep is the deepest you’ll ever have, one minute I was lying there waiting and the next moment I was waking up in recovery. The good news is you’ll wake up sans tumour. I had christened mine Tommy and afterwards had visions of him in a jar on a shelf somewhere thoroughly pissed off.

The only ache I had was where the incisions were made and that was all manageable. I was up and walking around the next day. I had the Canula in for a few days, just in case, but no morphine pump or anything like that.

They’ll have told you about all possible after effects, including LARS, but it doesn’t mean you get them. I’d advise avoiding planet Google though.

This is a major surgery and there’ll be a lot of swelling and bruising internally that needs to heal and settle down so your motions will be unpredictable. Your bowel is going to be different now, and transit time will be different and the muscles and nerves need to heal and learn how to work again, so it will take a good few weeks to start settling down. The bowel is a very sensitive area and even now I still get phantom aches and twitches and need to use loperamide, buscopan and paracetamol

Make sure you get advise on diet, core and pelvic floor exercise, any drugs you might need, support groups etc before you get discharged.

It is daunting and it is scary, and recovery will take time, but it’s worth it if you think of the alternative.

Good luck and let us know how you’re getting on.

Rachel56

Hi there, I am just over three weeks post surgery for extended right hemi. I was anxious about surgery and think that is entirely normal. Surgery went well and discharged after 2 nights in hospital. Pain relief very good and now just needing the odd paracetamol. Walking pretty well although at different speed to normal. So for me the surgery went very well although I do need chemo which I am dreading. So I wouldn’t worry about pain etc and just build up exercise when you can without pushing yourself too hard. Good luck :x::x::x::x:

Lizsa

Thank @Mark McC, I love that you called your tumour Tommy and imagined him looking pissed off in the jar! That made me chuckle! Think I may have to think the same, I saw my tumour on the screen during colonoscopy so I can visualise what he'd look like in a jar! Thanks for all the advice. Major surgery is such a scary concept, but you're right it's much better than the alternative! Speaking to people it seems that recovery is OK (well as OK as it can be) I need to try not to worry about the complications unless they happen.
I'm going to take a notebook with me and write a list of things to take to hospital and things to ask and positive phrases people have said :) thanks for sharing :x::x:

Lizsa

@Yorky77 thank you so much for your reassurance. Sounds like your recovery from surgery went well. I wish you well for the rest of your chemo and sorry to hear its tough. But at least you're zapping all those nasty cancer cells away :x::x::x:

Lizsa

@Rachel56 wow sounds like you breezed through it, 2 nights in hospital is great. That's so reassuring to hear, and that the pain wasn't too bad. Good luck with your chemo, I hope you breeze through that too! :x::x:

Rachel56

Hi pain really wasn’t an issue for me. I will be thinking of you. :x::x::x:

stoy

My 84 year old mum had her first surgery, a right hemicolectomy in March. No stoma required and was amazed at the anaesthetic as she was worried also about this. Just felt like a good sleep. Stayed in hospital for 4 nights, home, walking about eating and pooing as normal . Amazing.

Lizsa

Hi @stoy thanks for sharing. wow your mum sounds incredible. 84 and never had surgery before. Also what an amazing recovery! I hope I'll be like her! :x::x:

Robbie-C

Hi

I was worried just like you….. I had my first operation on 10th June, still at Addenbrooks at the moment, waiting for poo bag to wake up.
The surgeons and all the staff on the NHS have been absolutely amazing!!!
Relax……. Get the nasties out! :x:

Lizsa

Ah @Robbie-C you are just a week ahead of me. So pleased to hear the staff have been amazing. Hope that poo bag wakes up soon! How did you feel when you first woke up from the surgery? I think thats what I'm most scared of! Yes the nasty tumour does need to come out!! :x::x:

Robbie-C

Hi

I felt like I was born again. Strange feeling.
Not in a god way…..
was soooo happy it was over , for now, until my liver surgery in 6-8 weeks time.

Lizsa

Oh gosh, good luck with that :x::x:

Siona

I get you @Lizsa except for a c-section 2 years prior I never had to go to a hospital and before the cancer, I never had general anesthesia. So very anxious before of this new experience, although I'm good at masking it and rationalizing everything.
My tumour was 17cm from the anal verge, also sigmoid, good bit of rectum removed and over 2 years later, I'm happy to be healthy and living a normal life with very minimum inconvenience (it's just sometimes my bowels are triggered by some types food, and in general I am going more often to the bathroom, but nothing I cannot control, it just feels better than pre-diagnosis to be fair).
The staff at the hospital will do everything to put you at ease, the anesthetist was chatty and then when it is time, you take a couple of big breaths in and you are out :)
They won't discharge you until you had a bowel movement and at the same time they monitor you, so if there's a leak, it will be seen and treated right away. Like in any operation there is a risk, but given your age, general fitness, ... the risk decreases.
As for pain, I had an epidural, there's a bit of prep for that before, but it really helps, I felt comfortable and never in pain, only briefly when they took it off and switched to pills. But even if you don't have an epidural, the pain is really well managed, it is also important that you mention any discomfort, there's no need to suffer in silence, and less/no pain means you're able to get up and walk sooner, so getting your body and bowels back to normal quicker :)
And the best of all? The tumour is out ! :) :x::x:

Lizsa

Thanks @Siona That is reassuring to hear your experience. I'm waiting for my pre-op appointment at the moment. The nerves are ridiculous! But yes best of all the tumour will he out and I cant wait for that! :x:

hev

@Lizsa
All your concerns/fears are normal but you feel very isolated as it’s your body having operation
We all understand your worries
I was so anxious- had my operation 5 weeks ago
Everyone dealing with you on Friday are very experienced clinicians and deal with anxious patients day to day -
My pulse shoots up during stressful situations but I was very well cared for
Walking into anaesthetic room is scary- I work In hospital where had op and knew many staff but their professional manner was great
You are explained everything being done and once mask put on face after couple breaths that’s it- next time which seems like no time at all you are coming around in recovery!! Then all your focus and strength will go into your recovery
You will soon be looking back being on road to recovery ~ wishing you all best for Friday 17th

Josianna

@Lizsa Hi Lizsa, As everyone has said the nerves and all the "what ifs" are perfectly normal and understandable. As @hev above has said the clinicians are very experienced and talk you through every bit of the procedure and are keen to put you at your ease. I found my operation was organized like a well run military operation. I was very impressed.
I had my op 11 weeks ago. It was mentioned to me beforehand about the possibility of the join leaking but it didn't happen with me. They have to cover every possibility, no matter how rare, because some people these days are so quick to sue.
I was in for 5 days. I was hooked up to morphine for a day or two so that took care of any pain. It's not enough to get you high but it does take any pain away. I also had a catheter in for a day which was great..no need to get out of bed for the loo. To be honest I just felt really bruised afterwards but it was manageable. They gave me paracetamol but with each day it got better. If you're already pretty fit then that will really help with your recovery.
It has taken a few weeks for my bowels to settle but I haven't had any accidents. You get used to a new normal and then you learn to manage it.
You're going to be absolutely fine and before you know it you'll be running around with your two girls again.
Will be thinking of you, as others have said, please let us know how you get on.
Jo :x::x::x:

Lizsa

@Josianna and @hev thank you so much for your messages. It's so reassuring to hear what to expect from people who have actually been through it.
And thanks again to everybody on here. I really appreciate all the support and have read back through everybody's comments.
Thank you. Now for the day of bowel prep tomorrow!! Can't believe I have to do it again already 😫 :x::x:

Josianna

Oooh bowel prep...I remember it well! (lol)

momentbymonent

@Lizsa very best for the surgery tomorrow (and bowel prep). I had open surgery two years ago and remember very clearly the list of things that could go wrong. Nothing did and I was back to running (albeit veerrry slowly) six weeks after surgery. Not going to lie, it was challenging but I felt so very much better knowing the tumour was out of my body and I could focus on getting well and recovery. :x::x::x:

Lizsa

Thanks @momentbymonent. I'm so nervous for tomorrow, but also can't wait for that tumour to be out!! You did great running again 6 weeks afterwards.
I think the scariest thing is fear of the unexpected. Hopefully it won't be as bad as what my brain is imagining!
I'm all read to start my bowel prep at 12noon! Got a different one this time called kleanprep and you have to drink 4 :x: 1litre in 6 hours!!! And apparently meant to keep hydrated with liquid between! Not quite sure how I'm going to drink that much.
Thanks again to everyone for all the support on here. I'm feeling very emotional today, I think the realisation has just hit me of the enormity of what is happening. :x::x::x: