I know I should prob ask a Dr this, but you are all much better sounding boards, & living proof of experience that no Dr or Oncologist could ever hope (or wish) to replicate!
I am coming up on 5 weeks post surgery, & due to my much publicised constipation issues (& significant nausea too) my Onc advised cutting my morphine based painkiller (Oxycontin) down, from 40mg twice a day, gradually to zero, & to 'up' my ibuprofen & paracetamol to the max. Which I have been doing, & am down to just 10mg now.
My issue is I'm being continually woken at night with pain, & therefore end up taking the 10mg albeit this helps for a few hours, & then I feel I'm back to square one. Don't know if I should up it again to 20mg just at night? How long did you all continue to take painkillers? I was very lucky pre my surgery, as once the chemo cleared up my remaining Pleural Effusion I had hardly any pain at all, so was taking nothing in the way of painkillers.
What is/was your level of tummy pain post-surgery, and what advice can you offer. I have a square heated blanket that helps. I'm also wondering how effective the paracetamol/ ibuprofen combination is after a month's continued use. Having watched the excellent documentary on BBC "The Dr who gave up drugs" you do wonder...
Thanks in advance, don't know what I did before this forum, or your warm reassuring answers, so big hugs to you all!
Sarah xxx
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Are you eating much? I don't think you're supposed to take ibuprofen on an empty stomach so that could be contributing to stomach pain? Can't really offer any other suggestions as after my surgery in 2015 my pain relief was ok. Hope you feel better soon x
Hi Sarah, so sorry you're still in pain, I wasn't given morphine to have at home but they did give me cocodamol which I could alternate with iboprofen and I found this really did the trick. Unfortunately one of their potential side effects is constipation but I found I was fine if I took the movicol they also gave me and had loads of fibre. I really hope your pain subsides soon and you are more comfortable. Take it easy and take lots of care, big hugs and lots of love ❤️Xx Jane
I do have some cocodamol, but have been avoiding simply because of the constipation issues, having said that the Docusate Sodium seems to be helping in that department. Maybe I'll try if pain continues x
Well if it's any consolation, I too suffered pain in my abdomen for many weeks, in fact 14 weeks on from surgery I still experience aches and pains. I am still taking co- codamol. I also have a ileostomy so bowel very unpredictable! I still have rectum in place so believe it or not , have kind of bowel ( constipated) movement from there also !! 😳..
I do recommend co- codamol , but maybe with laxatives??
The aches and pains are always there aren't they Sarah, it's such a bloody worry, as I guess Like me , you think it's on the prowl again ! I wonder if it ever leaves our minds ??
Hi Sarah I do remember dosing up overnight to ensure a good nights sleep and trying to avoid taking too much during the day and using gentle exercise, chamomile tea etc to ease pain in the day. Having said that I don't advocate putting up with pain long term...so if you need pain killers, you need painkillers ❤
Ah. Having just 'logged on' with a view to asking a question, as usual I find you ladies have more or less answered it already. 😀 I've had the full debulking and am thankfully fairly pain free. The exceptions are abdominal aching after walking (using the muscles again?) but mainly my problem is bladder pain.
I'm four weeks post surgery as of yesterday and get aching pain in my bladder when I wee. Not stinging like an infection. Fine other times. (Never thought I'd be discussing my toilet habits with the whole world - giggle!) im assuming from reading the above posts that essentially I need to be patient and aches and niggles are not unusual for weeks post surgery. Oh and I've given in and gone back on the 'loosening tablets' docusate or whatever. I couldn't stand the texture of the movicol.
Thinking about it I suppose our insides are bruised and resettling themselves so pain and discomfort is to be expected. As my neighbour who is an ex nurse said 'Don't forget you've had MAJOR surgery!' I think we forget...
As for pain relief, can't you phone your oncology nurse for advice? Mine gave me her number incase of any query. Not much help on a Sunday I admit but worth a phone call tomorrow?
I'm def with you on the abdominal 'aching' when walking around, albeit, that's just inside the house. I'm wearing my daughter's Fitbit to try & monitor just how much I'm moving (prob not quite as much as I should!) def not up for walking outside yet, as don't think I'd get very far!!
Can't comment on bladder pains, that can't be pleasant but guessing that could be down to just organs being manhandled during the surgery. Maybe keep an eye on it, just in case it's anything more?
I too hate movicol 😝 Have taken my docusate this morning, & was very happy to pass a normal looking 💩 earlier! 👏🏼👏🏼👏🏼Long may it continue!
I know what you mean about the walking. So far I have a rota of friends and family who 'walk me' every day. Basically a bit like a 20/30 min dog walk rota! I thought I was doing fine so a friend took me to the supermarket (oh the excitement!) and after almost an hour of shopping apparently I was white as a sheet and was forceably told to go and sit down whilst she packed the stuff. I was then utterly exhausted for the best part of two days. Basically what I'm saying is don't worry what the Fitbit says as you could be an impatient idiot and overdo it like me!!
Jeez! That's loads more than I've managed, I'm impressed as I'm a week in front of you, albeit wasn't discharged from hospital till 23 Jan. I've literally not left the house since the day before my surgery on 9 Jan, other than two chemo visits! Mind you supermarket visit does sound a little like madness, take it easy!
Hoping to do an 'actual' real live walk outside by end of this week, & my other goal is lunch or dinner 'out' somewhere with my family, maybe just Wagamamas, but even so. #Goals huh xxx
Bear in mind I'm not dealing with chemo too whereas you are. 😀
Hi Sarah, you take pain medication if and when needed, if the pain is waking you up then you are not taking enough, We feel quite tender post surgery and one way for me was to buy some cami tops which helped as the skin wasnt bare next to jumpers and tea shirts. Also do remember you are not meant to be doing anything strenuous for another few weeks
The way I understand it is that for pain control to be effective you need to take a sufficient dose at appropriate intervals to give you adequate coverage. When this optimal level is reached it means that you avoid having times when your pain peaks or break through pain, which is what you seem to be experiencing. Good pain management is a regime where never gets a chance to cause you problems.
After my surgery I decided that I should not need regular pain killers after a few weeks. I also was cursed with constipation which I knew pain drugs could make worse. All this meant was that I was much more miserable than I needed to be. Eventually I realized that you do not get brownie points for being pigheaded and asked for help from my GP. She recommended slow release morphine patches and fibrogel for my poo problem. They were a life saver!
We all heal differently and you have had a particularly difficult time. It will get better but you cannot rush it and you definitely should not be woken by pain.
I'm sorry Sarah that's horrible, you need your pain medication, especially what you went through and you have cancer really bad. I hope you ask him, for more pain medicine until you feel a lot better. You only have CANCER, this makes me upset😢🙏🏻💕
And you could ask for a pain patch, I've one, we all experience pain differently, until someone has walk in your shoes, they will not understand and doctors need to listen to his patients, and make sure, through this time, they make them as comfortable as you can be 😽💕
Hi there.. I am in Australia, but recommend this drug for sickness. My husband tried everything after his surgery to stop him being/feeling sick from chemo .. it is called DEXAMETHASONE ( 4mg x once daily) our oncologist says they don't know why it works , But it certainly does . Tony now only had 1/2 a tablet, 1st thing in the morning.
Also, your surgery pain can be controlled by TARGIN ( slow release) 10mg morning and 10mg night.
I am assuming these drugs are also available for you
Thanks! I am prescribed Dexamethasone for post-chemo sickness. Plus I do have painkillers but had been trying to reduce/not take them because of constipation issues. It's a case of finding the right balance huh. Am getting there slowly but surely xxx
All the very best for you 🌹🌹the constipation is controlled by Movicol or Slippery Elm. Better to take pain relief till pain subsides so as not to stress the body . Horrible viscous cycle .,
Last night I 'upped' my Oxycontin dose, & seemed to have a better night thank God. All I have to do now is try & balance out the constipation tablets & I'll be laughing! Ha ha!
Def need to do much more laughing this week, even if I have to seek out cat videos on You Tube!! 😹😹😹
Thanks for all your replies. I'm really grateful 😘🙏🏼❤️
Are you on chemo as well? We were told by a nurse that it's the Ondansetron (not sure if you ladies also take that for three days post-chemo) that also causes the constipation. I know prunes are renowned for helping with the constipation but dates and dried figs are really good as well. I got a nutri bullet-style blender from Lidl recently - it was about £26 I think and been making smoothies galore for my Mum
Yes, weekly Taxol with 3 weekly carbo & Avastin thrown in. Had constipation a bit before surgery, but it was horrendous after. Just about finding a bit of a balance now albeit it still hit & miss x
Apparently during the surgery, the surgeons lift out the bowels to visually inspect it for cancer, apparently intestines really do not like to be touched at all so they misbehave for a while after the surgery; I've seen how my Mum has struggled with it post-surgery so you're not alone! I hope it gets better soon
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