APR - any practical tips welcome

Hello Lorraine

I am sorry to hear that after treatment you are now facing this.  You are absolutely doing the right thing by getting prepared in advance.  I am somewhat surprised that you GP said you wouldn't qualify for extra help.  I would mention it at your appointment anyway, GPs have been know to be wrong on occasion!

I'm afraid I can't offer any advice on the actual procedure itself but there are quite a few on here who have had it done and I am hoping that they will come on board and share lots of lots of tips with you.  They will also be much more aware of what you will need in terms of support afterwards.

But I just wanted to wish you well for what lies ahead, and we are always here to offer support along the way.

Irene xx

Hi Irene

Thanks for the support nonetheless & well wishes. I think even if we haven’t all had the same treatment we all know what it means to be going through it more than anyone else. So thankyou

Think you’re right about GP’s now that I think about it! Wrong quite a lot actually! I will mention it at my appointment & try to not get fibbed off too easily.
Everything I’ve enquired about the surgery & its recovery from my colorectal specialist nurse has tended to be minimised & made as though it’s all straightforward & breezy. Which I understand - she doesn’t want to scaremonger but forewarned is forearmed imo.

Thanks again & best of wishes

xx

Hi Ninka 

I didn’t have the same surgery but did have a different major surgery, including having my rectum removed, so I recommend when you go to your appointment you explain about your home situation. I had my surgery in the next county, and wasn’t aware that I should ask for an assessment prior to discharge, which they are actually required to do when you have surgery “out of area”.

The same thing happened to my father in law after his cancer surgery last year-treated in the same hospital-and no assessment was done for him which led to huge issues on his discharge with no support.

Please don’t let the nurse minimise what is major surgery. I needed a lot of support when I got home and only had my partner, which was actually at times very scary for us. Personally, I could literally do nothing for myself in those early days-I needed help with everything-and although it was a different surgery (details are in my profile) recovery was anything but straightforward and a breeze. I don’t want to alarm you at all, but more just be aware that you should stress to your surgeon you will need an assessment for support. Please don’t rely on your gp saying you wouldn’t qualify. I don’t believe a word my gp says, following numerous issues with him. 

I hope others who’ve actually had the APR will share their experiences, and this also is discussed often in the bowel group so you may find some useful information there.

Sarah xx

Hi Sarah

Thanks for replying & firstly apologies as for some reason I inadvertently managed to flag your reply to a moderator!! So please ignore with apologies! I’m actually mightily grateful you for yr reply - I have chatted to you before re APR & flap reconstructions & vaginal dilators amongst other things and greatly value your input.

So yes I know you had the Total Pelvic Extenteration surgeries which I’m in awe of. And only sorry you weren’t assessed for any support or your father either.

 I may be out of my county too if I have to go to a specialist hospital to be able to get Flap Reconstruction if my hospital don’t do it. So I will be sure to insist on an assessment for my county. 
This whole topic & my lack of any support at home is why I’m so intent on getting Flap Reconstruction in the first place & prior posts about it - as anything that can help me recover is so critical. 

Don’t worry you’re not alarming me I have read as much about it as I can on here and the Bowel/Rectal forums & have an idea of what I’m in for. And especially with how radical the surgeries you had I can well understand how traumatising the aftermath of that must have been for you & your partner.

Not knowing what support is available & what it will look like is making it pretty terrifying tbh as waiting till I actually get to hospital & having the surgery doesn’t really make me feel v secure about it all.

Macnillan helpline advised that you have to really insist on an assessment bcos assumptions are made that you’ll have support & then no enquiries are made. 

I’ve got to run but just wanted to reply - will be back on again later.

Best to you & thankyou

Lorraibe xx

Hi Ninka Lorraine

My memory is terrible-my apologies, of course we’ve chatted before.

Whoever you spoke to at Macmillan is correct-assumptions will be made. The hospital assumed that my father in law would be cared for by his wife, but he didn’t tell them he was her primary carer as she has dementia and can’t do anything for herself, let alone care for him after bladder/prostate removal. She couldn’t even remember he was in hospital for surgery! 

In our experience you will not be told that an assessment must be done if out of area so you need to advocate for yourself and insist. I was desperate to be discharged as covid had just got going and my hospital had a lot of covid patients, and my team actually thought I would be safer at home. I was discharged on the day the first lockdown was announced. 

In hindsight it was probably too soon-the stoma nurses had not even shown me how to change my bags. I was using a zimmer, and we had no advice at all about anything. I had small wound infections-district nurses simply didn’t turn up most times they should have, with no explanation and we muddled through with advice on dressings etc from the local pharmacist and my partner changing them.  I was very sick with a particular antibiotic and we just decided to stop it. We had no-one to help us at all, but the saving grace was that I have a very calm and pragmatic partner who dealt with everything as it came up. Otherwise I don’t think it is too dramatic to say I wouldn’t have survived. I was vomiting every day, I think the record number of bed changes in a day was 5, and I wasn’t able to do any of it. I was so weak I couldn’t even get to the bathroom to brush my teeth and had to have everything brought to me so I could do it in bed. 

It angers me still that once the surgeons have done their job there is no thought to the aftermath of all of this. Be the squeaky wheel, speak up for yourself and don’t let yourself be discharged with no plan in place. You will need help.

Sarah xx

Sarah

My heart goes out to you reading what you had to endure - with Covid running riot as well & the sheer lack of support & care frankly exhibited by the hospital & care team. And your father being discharged on the assumption your poor mum could care for him is just shocking.

This is what I fear too - being discharged into the community where specialist nursing care for this kind of wound & tissue management doesn’t exist. But not even turning up? That’s just not acceptable. So it sounds like that unlike with treatment - there’s no “team” available out of hours to consult with & that you’re completely under the care of community services. Which is just again very unnerving & outrageous that you had to rely on pharmacists & just stop an antibiotic without any guidance or medical advice available given the gravity of what you were grappling with. 
Your partner sounds like an absolute rock & I appreciate your honesty in sharing  this.

I’ve noticed the sugar coating going on from my colorectal nurse specialist & my stoma nurse - my concern is getting access to pain relief in the community if your point of contact are district nurses feeding back to GP’s. How did you find getting sufficient pain relief? Do they appreciate the severity of it? I found my CNS saying patients are discharged on just paracetamol & find the bottom wound healing not a problem really concerning.I would much rather they say yes initially it will be quite severe but you are discharged with clear guidance to your GP of what pain relief you will need & will have a are plan from us with everything covered type thing?! Is that just wishful thinking?!

1. Please don’t worry you must reply to countless posters on here! I meant more to acknowledge your help in previous chats. And thankyou for being so transparent it confirms what I’ve been concerned about & will absolutely speak up about my situation & ask for support. Although part of me is still thinking I may be better off in arranging private care if I don’t feel I can rely on what is offered given my situation where I know I’m going to need realistically round the night support at times which I don’t know will be available even if I was given any post op nhs care?
   
   Thanks again & well wishes 

xx

I was discharged with a full bag of drugs..which included oramorph. I had regular paracetamol in hospital and oramorph basically on demand in there. I had it most days if I recall-when I had to get up to go to the shower it was a major event for me and I had oramorph on my return to my room. I needed 3 nurses to take me there if I had to walk, because it was so difficult, and I would be able to go in a wheelchair to come back. But then I would be so exhausted and sore I took a shot of oramorph. I also had it before I tried to sleep at night, or after sitting out of bed in a chair-they had no understanding of how difficult it was to sit because as gynae nurses they had no experience of someone having their vagina and rectum removed. 

I didn’t use all of the oramorph I was given to take home-but I took very regular paracetamol. My gp surgery is hopeless so I’m glad I didn’t have to rely on them to provide any pain relief. If I had experienced any issues I would have contacted my main surgeon I think. She understood I needed pain relief prior to my surgery because my pain was so bad then. I approached her after trying to get help from my gp. In the weeks before my main surgery I had open abdominal surgery to try a hysterectomy, which was abandoned, and I was in a lot of pain as my cancer was spreading fast and I had 25 staples in my abdominal wound. 

A gp from my surgery visited at home at my insistence because I could not leave the house and said I would be referred to the pain management team-I never heard from him or them again. He was more interested in whether I was having suicidal thoughts-I wasn’t, but I wanted something to help with my pain! I got nothing at all. 

I had surgery last year to remove my gallbladder (laparoscopic surgery) and was given 2 different strengths of oxycodone on discharge, along with the usual paracetamol(!) which was much more than I got for my more invasive and painful surgery-it’s just astonishing really. 

My stoma nurse in the community (employed by my stoma supply company and not the nhs) was way more knowledgeable than anyone in the hospital and she visited regularly. I learned everything I needed from her and she taught my partner everything too. Thank goodness I had her! Where I live you cannot contact district nurses directly-you call a “hub” and they tell you someone will come, but it’s very hit and miss. 

I didn’t really question or complain about things at the time-I just accepted it, but nowadays when I think back, I am horrified about what I went through with no support. I am certain you will need support on discharge and it should be provided for you, but if for any reason it is not, I think I would pay for it. Nurses can sugarcoat all they want, but this type of surgery and recovery is brutal and that needs to be acknowledged. I actually cashed in a private pension with a view to paying for care, but with covid it was impossible to get this so we soldiered on alone. I wouldn’t wish that on anyone, truly. 

In hindsight, I believe the “support” I got was woeful and inadequate. Looking back, I should have had mental health counselling, and some form of physical rehabilitation therapy because I was so weak and had lost so much strength in my legs while in hospital. Maybe that would have changed where I am now-registered disabled and in a wheelchair or mobility scooter if I can ever get to leave the house. My physical strength never returned and just got worse but it would have been cheaper to give me physical therapy rather than me now get paid the maximum possible disability payment because I’m housebound and still need help with a lot of stuff. 

Sorry, this seems like a big moan, but don’t let anyone tell you this surgery will be easy. I know it’s different to mine, but in the support group I run online I have several women who’ve had the APR surgery and so it’s something we discuss there. 

I hope your experience will be much better than mine, and all I want to do is encourage you to challenge things you are told and be insistent about what you expect. Make sure there is a plan, and one which includes pain relief.

Sarah xx

Sarah

I am still so shocked at what you went through; you are so right in what you say about having therapy at the time making all the difference.  Only the very young recover from being bedridden for a period of time.  Older people take much longer to recover, and that recovery isn't at the speed at which strength was lost.  It could have made such a difference to your outcome.

And you are still a powerhouse, none-the-less.  Thank you for all your help in more ways than one!

Irene xx

Thanks Irene-you are right about recovery! Much easier for younger people..I’m nearly 62 now and feel absolutely ancient, like a stooped old woman shuffling about the house nowadays. I can’t even put my own socks on,though luckily have an aid which helps with that-it’s amazing what you can find on Amazon! On reflection, I just wish I’d had help and some sort of recovery plan but there was none-discharged in a wheelchair and left to get on with things. 

Eventually, almost a year out from surgery I was in tears on the phone to my surgeon asking for some help with my mental health. She was absolutely astonished that I felt I needed that, because as far as she was concerned I should be fine. She referred me to my CNS who arranged counselling for me. She sounded almost annoyed I was asking for help-there is just no-one looking at the bigger picture of mental and physical health in recovery and there should be.

My American friends who’ve been through these surgeries have amazing packages of support in place spending several weeks in a rehabilitation centre working with physical therapists, they see mental health professionals and have nursing at home support. Guess that’s what insurance gets you! I do find it hard not to be bitter, but it’s not going to help me being like that so I just plod on, but while I’m so glad to be here, I grieve for the quality of life I have lost. 

Sarah xx

Hi Ninka,

I think we have chatted before, I am back at work now so I am on this site a bit less often than before. Apologies if I have got this wrong!

I had APR surgery on 27th July. I have chatted to my husband and these were the tips we came up with between the two of us. I hope they are helpful.

• I heavily relied on my husband post discharge so I would suggest you will need help at least for a week or two after. May I ask your age? I was only 32 when I had surgery so I do really believe this helped my recovery to be quite fast and I was able to be mobile reasonably quickly. I think this may not be the case for someone older. I am now trying to strengthen my core again with Pilates and have had real struggles with mobilising my hips so clearly there was more damage from the lying on my side for weeks and weeks (and lack of movement) than I thought.
• Easy meals and batch cooking. You mentioned you can get help with this but if you have prepped food and just need to defrost and heat up it will really help! Protein is VITAL for wound healing so try to have as much protein in your meals as you can. I was prescribed protein shake things to help with this but you can also buy them online. I cannot emphasise this enough. I really think it rapidly helped me to heal. 
• Write yourself a schedule of all the painkillers and blood thinning injections etc. I had a lot of different drugs that I was discharged with and it was easier to have someone else help me remember them or remind me to take them. Can a friend send you reminder messages or set you calendar reminders etc? This might be helpful. 
• I found a pregnancy sausage shaped pillow was very helpful to get me into a more comfortable position on my side and wish I had this when I was in hospital (I only thought of it once I was at home). I also found it useful to help me push myself on and off the bed which is very painful initially but does get easier! 
• This isn’t really to do with help after surgery but try to stay off the bum wound if you possibly can by being on your side. Mine became very infected as I was in CCU for 5 days on my back and there was constant pressure on it. I think I would have had a much easier time of it if I had been able to stay off my bum - my tummy healed really fast (like about 4 weeks) but my bum took nearly 5 months as it dehisced)
• District nurses were not that helpful in my case. They didn’t spot the very nasty infection that I had and this put me back in hospital. You also may not even be referred to them unless you need wound dressings done. In the event you are not referred I would suggest you should ask to see your GP every few days to get the wound checked. I don’t think it would be very easy to check this yourself even in the mirror as the wound is low down and bending might be difficult.
• Invest in a shower or bath chair. I know I said not to sit in your bum but this is preferable to feeling faint in the shower! My blood pressure is low so I had a problem with this.

i will come back if I think of more!

kirsty x