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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 @Lizalou. I am pleased with how my recovery is going . Just wanted to believe that it will all get sorted out. I am looking forward to getting back to a so called ‘normal ‘ although still may be having chemo. Will know in next week or so. I am keeping a diary of symptoms and food eaten etc and I can see I am progressing. Thanks for getting back to me. Very best wishes. :x::x:

KatieR

Hello @penjay1902 ..Congratulations on your speedy recovery! ..Stomas really are easy John thinks its easier than the rear exit Like nature made a bit of a mistake putting the bum hole where you cant seeit and can barely reach it. ! !
Regarding the sitting down pain John had his APR and Elap on the 30th of October and he was given strict orders not to sit on his bottom at all as it can affect the circulation to the wound
We had an hilarious demonstration from the Plastic Surgeon on how to get off the bed and stand up without sitting on the wound ....This was in the HDU about an hour after his operation The nurses were gobsmacked !
John still finds sitting in the car quite uncomfortable so weve reclined the seat and he lies on his side ...weve had some strange looks from other drivers but that might be because the dog lies on top of him and looks out of the window !
Good luck with the next stage of your journey
Cath :x::x:

penjay1902

Hi There @KatieR . Thanks for your response. Doctors never told me not to sit down strangely enough. Managing ok at home just more nervous about going out or on public transport in case it is really uncomfortable. From what I have read on here it seems to be a time thing. Guess I just have to be patient. Hope John is recovering well also. Very best wishes to you both. :x::x:

palace1960

Hi @penjay1902 I was given a valley cushion to use when I left hospital it was helpful but I was fortunate in that I healed quite quickly so I only used it for a couple of weeks. I’m over 2 years post APR op and I’m fine sitting down so it really is a matter of time - wishing you a speedy recovery best wishes Ron xx

AlanD50

I had APR on 7th November. Sitting is still quite uncomfortable, especially without a cushion or pillow. Christmas dinner was the first time I managed a full meal sitting. But it is getting better. Don't think I can face hard chairs yet, so 9 weeks without a visit to the barber's is beginning to show! I was told not to sit at all for the first four weeks. The plastic surgeons seemed more interested in what a wonderfully neat job they did than reassuring about how long recovery takes. As someone else said, it's an individual and time thing, but patience is sometimes in short supply! All the very best with your recovery!

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