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Life with bowel cancer

penjay1902

APR recovery advice and sitting down

Hi Everyone. Had APR with permanent colostomy on 11th December. Was home after 6 days and think I am recovering well. Bag, which I was really concerned about, is proving much easier to manage than I imagined. Just wondering, as I know many of you have had a similar op, how long was it before you could sit down comfortably and do normal things, like visit the cinema etc. I am still quite sore underneath and have slight bleeding but stoma nurse seems to think this is nothing much to worry about in that it is to be expected. I am fine at home on recliner and soft sofa but went for a meal at the weekend and was very uncomfortable. Just want reassurance that there is light at the end of the tunnel😀. Did anyone buy any special cushions? Thanks in advance. So grateful that I have got this forum to turn to for advice and support. Thank you all. :x::x:

penjay1902

Thanks @palace1960 and @AlanD50. Guessing it is just a time thing - too impatient to get back to a sort of ‘normal’. Glad you are both doing well. Also keen to get to the hairdressers @AlanD50 😀. Very best wishes to you both.:x::x:

Yvonne

Hi @penjay1902 wowzers you’re doing a good job...well done you. The hospital OT department insisted I had Ro Ho Cushion. I wouldn’t recommend this to anyone as it caused no end of damage every time I used it...so I stopped using it. I told the hospital and the Surgeon it was of no use to me and only the District Nurses came to the rescue with a Repose cushion; they even gave me a special Repose mattress. This has helped but I think it’s going to be a while before I can sit in comfort. We thought that would be the case though... given that I’ve also had my coccyx removed as well. Moving forward and having looked up the description of the Valley I think this is more appropriate for APR / LeAPE!! I hope you’re recovery continues at pace but don’t expect too much. Xx.

penjay1902

Thanks @Yvonne. I really appreciate you taking the trouble to reply. It’s strange isn’t it how different health authorities say different things. My stoma nurse told me not to bother with any special cushions. A few others on this forum have recommended the Valley cushion. I know you can hire them but I am wondering if it would be worth it. I am sitting fine at home on a leather sofa - reclining a bit . It s just when getting out and about, I went on a bus and the tube yesterday and it made me realise I can’t really do that at the moment, at least not for any length of time, as it is too uncomfortable. As others have said, it is probably a time thing. I certainly hope so. I hope you are doing well with your recovery also, Thanks again. Very best wishes. :x::x:

pippajane

Hi@penjay1902
I had my APR on 10th September
You are doing so well, so very soon after surgery
I used a valley cushion for the first six weeks.
I also wasn’t told not to sit and in fact was encouraged in hospital to sit in the chair a lot.
It was at least eight weeks before I could sit comfortably for a reasonable time but now it really isn’t a problem
However I still sometimes struggle with the feeling of a wedge up the “bum” but I suppose it will one day be something that is not noticeable
I found the first five weeks the most difficult but then everything started to improve
It’s very very early days for you so relax and rest as much as possible :x::x:

Yvonne

@penjay1902 that’s absolutely amazing that you been out and about to the extent of travelling on the tube. I’ve looked at the hire prices for a Valley and I think the price is extortunate and a total rip off for us...that’s so unfair. I would like to try one though, so I’ll contact my Cancer Nurses tomorrow and see what they think. The Roho costs the NHS in region of £500 and the Valley is considerably less. I don’t think though that it’s going to speed things up, which if that’s what you’re after, sometimes is good to do without especially you like to run before you can walk. Funny really, I’m glad the Roho wasn’t a success for me as I’d have been doing things that my body wasn’t ready for. Very best wishes to you too. :x::x:

penjay1902

Thanks for your replies @pippajane and @Yvonne . When I originally asked my stoma nurse about any cushions they may supply, she said they didn’t do that. As I said, I am quite comfortable at home, it is just when out and having to sit down. It has been just under four weeks now so hopefully like you said @pippajane, things will improve more. Even though my histology results after my operation came back clear, I think that because on my original diagnosis there was a more distant lymph node involved (no sign of that now due to radiochemotheraphy) I may have to have chemo and I am thinking I want to be feeling reasonably strong before that starts otherwise it may all be a bit too much! Anyway all will be revealed next week when I see my oncologist. Thanks so much for getting back to me. I find it so helpful when others respond who are going through or have been through the same experience. Can’t imagine what it would have been like without that . :x::x::x:

pippajane

Yes it really does help to navigate this difficult path
Let’s see what next week brings, take one step at a time :x::x:

Yvonne

Hi penjay1902...I just thought I’d let you know that my community nurse is going to do a sitting review this week with the prospect of ordering a Valley cushion. Is that something you have investigated yourself? Xx:)

penjay1902

Hi @Yvonne. I did ask the stoma nurse about a Valley cushion when I was in hospital but she said it wasn’t something they did. To be honest I am ok at home - sitting on reclining part of sofa. Let me know how you get though. It is interesting how they suggest different things to different people eg not sitting down. They also had me out of bed the day after operation to sit in the chair @pippajane . :x::x:

george1960

I think you have achieved brilliant things so far, you have had major surgery and it will take time to heal so don't be hard on yourself. I use soft pillows for comfort in the car or visiting family and friends but it still find the bed the most comfortable place not sleeping but my old bum feels more comfortable laying there.
Why not try a air pillow i was given one by the hospital i found it eased a little but to be truthfully it's the time thing thats and the healing process needs to complete.
I stitches might disappear on the surface but underneath the skin it's healing slowly.
Keep s diary and your see your coming on leaps and bounds.

Unfortunately if we had a recliner in our house would have been much better.

Good luck

George :x:

Yvonne

You know, if you only expect to improve 1% per day you know you’re doing well. Keep going. :x::x:

penjay1902

Thanks again @george1960 and @Yvonne . You are both right. I am keeping a diary of symptoms, progress etc and can see I am definitely improving albeit slowly but that is fine. Hope you are both doing well. :x::x:

lorraine grant

Well only a few hours to go and I'm off the surgery. Just done one enema and drank my pre load. Lots of gurgling going on......🤔. Next step is enema No2 at 6 flowered by the third pre load. Of the the ward for 7:30. A quick dice n slice......hoping the surgeon is in his bed getting a good night's rest. It feels surreal really. I feel as well as I ever have yet this monster is in my bum. Off with his head I say........chop chop chop,

Spanner

Ha @lorraine grant you have reminded me of when my wife had her op a couple of months ago the consultant surgeon came to her bedside the eve before the op to talk her through things and my wife told him to go home and have an early night to be fresh for her op. he laughed and the nurses looked shocked as people don't usually talk to him in that way. Don't know why, these people are only human and he is a lovely guy.

lorraine grant

Haha I told him if anything went wrong is get his address and come look for him. The morning after the op he came to see me and said evening went to plan. I said "that's fine I'll take your name off my list ". That made him laugh. Lol

lorraine grant

Just to add to the thread, I've had the op, was in the ward for 13 days as I had an infection and was on IV antibiotics. Anyway, how now but my wound is leaking clear fluid daily. I need to wear a pad which is really annoying. Apparently that's quite normal and it's better that the fluid drains out rather then stays in. Well, last night after sitting in my salt bath when I stood up if was full of blood coloured water. I wiped up some clots too. I couldn't see where exactly the blood was coming from. I've phoned the stoma nurse help line but still waiting for a call back. Any one had this?

penjay1902

Hi Lorraine. As you know I had my op 8 weeks ago now. Always had a tiny bit of discharge from wound. In the last couple of weeks it has opened up a bit - a couple of little holes and they took a swab and said there was an infection. - mop up chemo has been delayed by 2 weeks. To be honest though stoma nurse and my surgeon both looked at it and said this was not at all uncommon and they were only monitoring it closely due to having to have chemo. I have had a weeks antibiotics and am waiting to see surgeon again this week to see what situation is. Hopefully it is not too much to worry about but your stoma nurse will be able to reassure you. I can understand your worry and hopefully you will get a call back soon. :x::x:

lorraine grant

Oooo that's not so good re the wind then. Can I ask why you are getting mop up chemo? My surgeon said yesterday that I will be discussed at the MDT on Friday and the oncologist will decide what if anything needs done now. I know I've a live scan later in the month but can't think what else other than more chemo. Is mop up chemo the same as the original xelox or a watered down version or different drug? I've not heard back from the stoma nurse yet but I phoned the ward and the ward sister said it's ok unless it pours. She said not to worry. There is no extra pain or smell so that's good I'm guessing. Keep me posted re your progress. :x::x:

penjay1902

Hi There, just getting mop up chemo as a precaution I think. I originally had a more distant lymph node which was cancerous but the radiochemo seems to have blitzed this. All scans since have been clear and histology after op was all clear - 17 lymph nodes taken and all clear. Oncologist said it gives me a 4% less chance of a reoccurrence. Just the capecitabine tablets - same as when I was receiving radiotheraphy. Not sure if it a higher dosage or not. Feel free to message me with any questions. I have had a lot of support from others who have been through same experience and found it really helpful. Glad your nurse said not to worry. :x:

lorraine grant

Ah ok. I had the doses of oxy and tablets reduced to 75% by my third session. Can't recall which caused which side effects. I suspect I might get more but I'll know either on Friday or next Monday. Has to be done I guess. I know it's only 1:18 but can't understand why the stoma nurse has not caked back re bleeding bum!