Bowel cancer treatment and side effects

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bettyb1987

3 days to go...

Hello everyone,
I hope you are keeping well. I must admit, reading the posts on this forum have kept me sane the last few weeks!
My low anterior resection surgery with temporary illeostomy is coming up on Monday and the nerves are really rising. I have an anxiety disorder which isn't helping but the main things I struggle with are fear of the unknown and situations I can't control...which is basically this 🙈😂
I think the main things that scare me are going under anaesthetic, feeling sick afterwards and then being in so much pain afterwards. I've never had surgery before and so I just have no frame of reference.
I just wondered if anyone has any experiences they can share of going under anaesthetic and what this feels like? How long do you feel like you're under for or does it not feel like that? Do you feel groggy or sick or tired when you wake up? And is the pain manageable from your experience? I've read a couple of posts where people said they found the pain manageable but others said they felt in pain for a while. How did you cope in hospital? I'm in for most likely a week and not allowed any visitors which is what has really sent me in a bit of a spiral I think. Sorry for all the questions - I'm hoping I'll be a trooper on Monday and not a panicky mess!!
All my love to you all,
Betty :x::x::x:

Susie Ruth

Hi Betty - I had all my major surgery about a year ago (see my profile) - I felt all the same fears - completely normal! Like you, I suffer anxiety and I can honestly say the very worst part was beforehand.

The nurses are WONDERFUL. I had no post-op pain at all - my main worry was that the cancer was removed, and learning to live with a permanent colostomy. Also, pretty major op (total removal of rectum) so issues with mobility. But in terms of pain relief and feeling sick - no probs (but everyone is different).

I think several people here have spoken about the Penny Brohn relaxation help. Maybe take your phone and listen to some relaxation with earbuds - hospitals are noisy! But nurses are very kind - and you will do much better than you think. Sending you the warmest wishes and a big hug - you can do this :x::x::x:

bettyb1987

Oh my goodness thank you so much for your advice and for sharing your stories, I immediately feel calmer. It helps so much when people can relate doesn't it, and you feel less alone.
One question I totally forgot to ask was about a nasogastric tube. I've had conflicting advice from my surgeon and stoma nurse - the surgeon told me they try and take it out before you wake up, and my stoma nurse told me I'd have it in for 3 days. Did you all wake up with one of these? I think that's what's making me anxious too, I hate the thought of it :(
Thank you so much again I honestly appreciate it so much.
Betty :x::x::x:

Sea60

Hi @bettyb1987, surgeons tell you if things are possible but don’t always (usually) come to pass. Mine threatened me with 1 a hysterectomy (I have a number of fibroids and he might have needed to make room), 2 a bladder catheter, 3 a temporary stoma, 4 time in the high dependency unit, 5 an ileus, when your bowel goes to sleep and you sometimes need a nasogastric tube. None of these things happened and I was at home three days later. And as for what the nurse said, I don’t believe it’s set is stone. I also had very little pain after surgery and hardly used the morphine drip that I was attached to. Surgery is obviously not fun but the after effects, for me at least, were nowhere as bad as I was told was possible. All the best for your operation. Sue :x::x:

stevejl

hi @bettyb1987 I like a lot of others on here also experienced my first surgery when I had my tumour removed.Despite being married to a nurse working in a surgical team at the same hospital who knew my surgical team I was still bricking it on my arrival at 7am its just a natural thing.
My sense of humour returned when they swapped my undergarments for what I can only describe as a rough fishnet for use in surgery although I awoke to find that gone.
Following arrival for surgery your cubicle gets very busy with lots of visits from your surgical team & the ward nurses to get you properly dressed so little time to worry about things.
I walked to the anaesthetic room with a very pleasant member of my team who was very reassuring & professional.
After I left the hospital I sent his boss a written note praising this member of staff.
Then it was into the room to be given the anathesteics.
The last thing I remember was lying on the table looking at the ceiling thinking how long does this stuff take to work until I woke up in my bed mid afternoon with the windows bouncing around as the anathastetic wore off.
To this day I cannot remember anything over that period of time.My wife said I had said things to her & the team when I was in recovery & told her all about the dreams I had had but I remember nothing.
You do feel very tired in the first 24 hours but after that the nursing staff are coming to check on you regulary plus the ward as others have said can be a noisy place.I agree that Ear plugs & headphones can be useful.
TV at my bed was free from 8am -12pm & I could have purchased a card to view at other times.
The cubicle next to your bed is small so you may not want to pack to much in the way of clothing as most of what I took remained in my case plus you have various mobile machines attached to you which also take up space in your cubicle.
Because I move about in bed when sleeping I did have tubes & cathatars come out occasionally but the staff soon sorted that out during their regular checks.
There were 8 of us in my ward & people were discharged & replaced by new patients plus there is regular cleaning of the ward so always busy in the daytime.
I had plenty of painkillers to take if I needed them but only had morphine on day 1 & was sick after the op but only because they gave me a couple of coffees then decided to poke me in the stomach area so obviously it decided to return the way it came upwards.
I was on fluids only until the Thursday.
I was out on the 5th day.I to was a Monday admission.
Hope all goes well on Monday.
Take care
:x::x::x::x::x:

Mark McC

@bettyb1987

The nose tube never came up in conversation but there wasn’t one there when I woke up. Hope that helps.

Good luck on Monday.

Quote from @bettyb1987:
Oh my goodness thank you so much for your advice and for sharing your stories, I immediately feel calmer. It helps so much when people can relate doesn't it, and you feel less alone.
One question I totally forgot to ask was about a nasogastric tube. I've had conflicting advice from my surgeon and stoma nurse - the surgeon told me they try and take it out before you wake up, and my stoma nurse told me I'd have it in for 3 days. Did you all wake up with one of these? I think that's what's making me anxious too, I hate the thought of it
Thank you so much again I honestly appreciate it so much.
Betty

Liz Blakelands

@bettyb1987 I didn't wake up with a nasogastric tube. I think surgeons tell you about everything that has the slight possibility of happening.

You are a strong lady and that tumour is getting evicted on Monday. Sending a big hug.
Liz :x::x:

Amanda Sandham

I had the same operation as you 17 months ago. The waiting for the operation was awful but on the actual morning, I was just keen to get it over. I cried in the anesthetic room because I was scared so the staff held my hands and sang to me! I was under for 12 hours but felt surprisingly well when I came round. I was uncomfortable rather than in pain. I was given morphine for the first couple of days until I worked out that it didn't make me feel any better and gave me a nasty rash. I had a catheter and a drain for a few days but they were painless (the drain was a bit smelly). I was in for 10 days over Christmas with no visitors which I hated but made me determined to deal with my stoma and get walking. At home I expected to make a miraculous recovery. However, I couldn't do much for the first month. I had no energy and no apatite. By week 6 I was hobbling around the garden with a walking stick. Once I could walk I started to get better. My mental health took a dip during recovery mainly because I had an unrealistic view of the length of time it would take to feel normal again. It's a big operation and you have to allow yourself to take as much time as you need. Overall I would say that you're more likely to have discomfort than pain, you will feel like someone took your batteries out and you'll spend the next 12 months talking about bums and poo to anyone and everyone. It's not the best thing to go through but it means that the tumour will be gone and your body can begin healing itself. Keep in touch with everyone on here as they all know exactly how it is and will guide you through every day :x: I hope all goes well for you on Monday :x: see you on the other side!!

bettyb1987

Thank you so much for your replies and for your support. Really interesting about the NG tube, the stoma nurse was adamant I would have one for 3 days. I guess I'll find out soon!

I will let you know how I get on, all my love and best wishes to you, thank you for calming me down :x::x::x:

bettyb1987

Just to let you know that my op went well, I am in the hospital and comfortable, now on recovery day 2 after yesterday. Weirdly @Liz Blakelands i had exactly the same as you in terms of sleep last night. I woke up every 2-4 mins throughout the whole evening and felt like I was being jolted awake. I don't know if this was an effect of the drugs wearing off or whether it was adrenaline or anxiety, but it was horrible because I'd wake up with a jolt and it would always be something horrible like a mini nightmare that would wake me up! I've had some more sleep today so hoping for a better night tonight. I'm comfortable and no longer connected to my morphine pump, I'm on IV paracetamol but have stronger drugs orally if I need them. My stoma is already farting away rather embarrassingly in front of the ward so I'm hoping it stays that way - desperately trying to chew gum to prevent an ileus! Best wishes to you all and thank you for all your encouragement, Betty :x::x::x:

Liz Blakelands

@bettyb1987 So very glad to hear that the op went well, I 'm sure you will have a better night tonight. I think the strange first night is the effect of all the drug from the anathestics. And after a good nights sleep you feel even better. That is the worst bit over, now relax and recovery, well done :x::x:

Jane39

Great to hear all went well @bettyb1987
Hopefully a better night tonight :x::x::x:

Rachel56

You are giving me hope. I have my op. tomorrow and been feeling very anxious today. Just want it over now. :x::x::x:

Molly2me

The best place for this is the bin @Rachel56 you’ll soon be recovering knowing it’s gone, sending positive healing vibes :x::x::x:

Quote from @Rachel56:
You are giving me hope. I have my op. tomorrow and been feeling very anxious today. Just want it over now.

bettyb1987

How did your op go @Rachel56 ? Sending you lots of positive healing vibes! I have been told I can have my catheter out tomorrow and all being well I should be able to go home tomorrow or Friday (most likely Friday). Pain is completely tolerable and I went for a walk up and down the ward today with my zimmer. Just started eating food again today - had hospital soup which was absolutely gopping (it was that milky stuff that's powdery instant soup) and it would have made me feel sick at the best of times! But got that down me followed by choccy ice cream - best ice cream hands down I've ever tasted. My illeostomy is producing really dark green/black liquid which I'm told is all the liquid that would have been in me already, and the soup/ ice cream hasn't passed through yet. Fingers crossed it will do soon, I'm still drinking all the peppermint tea / chewing gum that I can. All the best to you Rachel, let us know how you've got on? Betty :x::x::x:

Rachel56

Surgeon said went very well. No perforation which was something they were worried about (and me!). Was having an extended right hemi but they also said had to take out less than anticipated. One day at a time! ❤️❤️❤️

hev

@bettyb1987 how great you’re on move abd doing well
I’ve recently come home after 11 days stay
I ended up being very sick
And decision made to have tube up nose which wasn’t pleasant and had in for 7 days but the lovely dark green stuff you described just kept being drawn off in the gallons!!! Where does it all come from but better out than in!!!!
Once this cleared-omg instantly improved so good luck to everyone out there on the wards around uk recovering :x::x:

bettyb1987

Poor you @hev sorry to read you were so sick. Did you develop ileus, and how long after your op did you get so poorly? Sorry to hear this. I'm on post op day 3 today and started on liquid foods like soup and ice cream yesterday and my output looks a bit thicker than last night which is good. I'm just hoping it stays that way! Changed my bag for the first time today myself and walked to the toilet to do it. Small goals! All my love to you :x::x::x:

hev

@bettyb1987
Couple days after op I was doing ok
Getting up walking/ had catheter out/ eating small amounts/ opened bowels but i then felt doing ok but developed temperature pulse raised more than is normal for me / postasium low and kidneys not working fully- was put on In antibiotics at that point
The tube up nose and down to gut was hard but it was making me so sick and the amount of green bike coming out was endless but although I was opening bowels it obviously just wasn’t fully working- as soon as did my mental state changed - tube removed and I was home 24 hours later
I know got long recovery but my mind set is so different now

hev

@bettyb1987

Sorry vile not bike

hev

@bettyb1987
My blooming phone !!!
BILE not bike