APR - any practical tips welcome

Sarah apologies for the delay -I’m so sorry for what you had to go through & the woeful lack of care afforded you. It really does put into perspective the limits of our health service & the institutionalised disregard (& even dismissal) for the concept of aftercare, rehabilitation & mental health. The arrogance you encountered along the way in trying to access support is just shocking ( & sadly I feel not uncommon). Im only sorry if my post has raked up that pain. The group you started must be such a lifeline & support to other women who’ve gone through similar & I bet one not readily available within our own health service. And like you say our system would rather we become chronically ill or disabled, when there would be far better outcomes all round, if it could be proactive & support was built in holistically as part of health care. It was only from the American Anal Cancer Foundation that I read a poster’s experience of having APR who like me also lives alone with limited support available to her from family & friends. She very much by the by said that among the x & y things that got her through, that she arranged for a “package of care” for the first week to help her postoperatively & it just seemed a really normal thing to do. I would never have considered it otherwise but growing more uncomfortable with the sugarcoating going on by my CNS  helped me realise that I will need external help & that it is a brutal recovery. Which of course being private is readily available (if you can afford it - which I will really struggle to…) but just struck me how programs designed to cope & rehabilitate are just part of their health landscape there. And something ours could really learn from. 

Thankyiu again for your honesty & support   
xx

Hi Kirsty

Thankyou so much for taking the time to reply & yes we have chatted before re all things APR & flaps etc! This is really useful thankyou & for asking your hubby too. With treatment all the practical tips & suggestions from posters on here really helped whereas with this it’s a bit harder to visualise somehow. 

So I’m 52 but have CFS, fibromyalgia (& investigation for RA) which restricts me a fair bit. So I’m used unfortunately to limitation & already have certain aids about the place which will help me post operatively. Physically though I’m pretty deconditioned so that will be a factor but aiming to mobilise as much as possible. 

Forgive if TMI but from what I can gather the bottom wound seems to leak pretty much permanently throughout healing? If this was the case for you do you wear (larger?) underwear with a pad or are you too uncomfortable to wear pants? Do you have to try to wedge the dressing in place if it’s constantly leaking? It sounds like it’s no wonder they get infected so easily. I had this a lot post radiotherapy (in the acute stages) but imagine it’s a lot worse post surgery. Some PP’s have mentioned period pants being helpful? Presumably puppy pad type things can help leakage onto mattress or sofas etc? 

Are you encouraged to shower daily? Can you get to the loo from bed in time to empty your bladder initially? Do you need someone to help you up & down from the loo? Do you have bladder issues?

Same for stoma are you able to get up to empty & change or do you have to do this from bed initially?  

My CNS said you should be using stairs from discharge but can’t imagine initially these will be possible to do often daily?

Can you lie on your side on a sofa or is a bed the most comfortable? Where did you spend most of your time -wonder if I set up a daybed in my living room - so not confined upstairs all the time? Do you need to prevent pressure sores? Pregnancy pillow is a great suggestion. 

I’m sure it’s all down to what works for the person so apologies for the amount of questions! Anything that can help me prepare & normalise what’s ahead makes it easier for me to cope with (especially when I have the tendency to worry anyway!) 

Disappointed to hear the district nurses weren’t great either - so great advice to get in front of a GP frequently & try to pre-empt infection. 

I did wonder about meds - that sounds really sensible to schedule them into a reminder app & can ask a friend to prompt me to take them as well. 
Can you walk initially indoors or did you need a walker or stick / arm of another? When you were discharged could you walk & get in the car? Do you sit on your side to get home & follow up appointments? 

Sorry so many questions!! Please don’t rush to reply as appreciate you’re back working & busy with your family & realise what I’m asking is pretty detailed!! What you’ve suggested as it is, is hugely helpful so thankyou again

Sending you continued well wishes 

Lorraine 

xx

Hi Ninka Lorraine

I’ve realised how negative my posts must sound, when you were asking for practical tips on recovery, so I’ll say something more positive this time about things which helped me! The body length pregnancy pillow, which I’ve seen mentioned, was invaluable for me and I still use it now. It’s so supportive when lying on your side and makes it much more comfortable. I have a waterproof sheet over my mattress and I also use puppy pads at times-I started off using those bed pads which you use when training kids to be out of nappies, but the puppy pads are way cheaper and just as effective for any leaks. 

Initially for my stoma I had a drainable bag, and, this sounds gross so I apologise, when I was too weak to get up I emptied it into a bucket beside the bed. My poor partner was very good at emptying and disinfecting this! But it didn’t happen too often. I also have a urostomy due to my bladder being removed so luckily didn’t have to think about getting up for a wee. 

There were many days I couldn’t shower as I was too weak, so on those days I had a bed bath-my partner would get bowls of hot water and soap and wash me all over and it felt almost as good as a shower. I had my hair cut very short just prior to my op so didn’t need to worry about washing it every day. My skin became very dry, so I moisturised every day, especially my legs-well, I didn’t, but my partner did it for me! I particularly liked to have a nice aromatherapy body spray after washing as you can  feel quite yucky With wounds and a stoma. 

Make sure everything is within easy reach for when you are in bed. Seems basic, but it was important. I actually bought one of those over the bed tray tables like you have when you’re in a hospital bed but that was probably overkill! However, it meant I could have everything where I needed it. I used water bottles always for my drinks to avoid spilling, and still do when I go to bed at night. 

I was able to use the stairs several times every day from discharge, but slowly, hanging onto both bannisters and initially I used a zimmer downstairs, and graduated to a walking stick. This gave me more confidence-both were provided by the hospital. It is really important to try and mobilise as much as you can to prevent blood clots-I was very conscious of this as I’d had a pulmonary embolism from my chemo. I was very slow, but that’s ok-at least I was getting up and moving around. 

You can also do exercises in your bed-I was given some info on this-just simple things to help build up some strength. Things will be different for you since you will have your bottom wound to contend with, but I hope some of this information might be helpful. 

Sarah xx

Sarah 

Apologies for the delay in replying - thank you so much for these suggestions - they’re so so helpful. And for taking more time out to do so. They just normalise a very daunting prospect & help me know realistically the level of support I’m going to need & what to ask for. Maybe because I’ve been told from the start that I will need this surgery I’ve had too much time to over think it but also it’s probably because I’m on my own I can’t necessarily react to things as they just come up without some pre planning. So I really appreciate the detail! I can’t tell you how much it helps - I’m feeling a lot more in practical mode about it now whereas before it was just emotional & too daunting. I guess it’s that thing of the unknown isn’t it & by telling me warts & all you’ve really de-mystified it .

Best & well wishes

Lorrine xx

Hi Sarah

This is an old thread but didn’t  want to start a new one just on this topic as pretty niche!

You kindly recommended a full body pillow that really helped you post op - can you recall which one you used or can you recommend one? There’s so many to choose from & in different shapes. And some eye wateringly expensive! Don’t mind paying for a decent one but not if there’s one that does the job.

If you can recall I’d be all ears but no worries if not! As I imagine your op was some time ago now. 

Many thanks

Lorraine 

Hi Lorraine

Nice to hear from you! I remember my pillow since I’m still using it every day. The brand is called “Pharmedoc”- I hope I’ve spelled that right! 

If I recall it cost about £60 on that well known website that supplies everything you can imagine that I’m not allowed to put a link on for! Some were very expensive but I felt this was quite enough to spend and it has been really a very good buy. 

Easy to change the covers to wash, and great support I found. I love mine!

Sarah xx

Hi Sarah

Thanks for coming back so quick - that’s fantastic thankyou! And what better recommendation if you’re still using it today. I have seen that one advertised on there I think so won’t struggle to find it! And def enough to be paying as you say but such a help to know it’s worth the money. Thank-you -  that’s one less thing to worry about

Best to you

Lorraine x 

No problem Lorraine-how are you getting on anyway? I was so excited to extol the virtues of my lovely pillow I forgot to ask how you are and do you know a date yet??!

I passed my 4 year anniversary from surgery a couple of weeks ago and that seemed quite an important milestone.

I know I spoke to you before about how poor my after care was and what a lot of issues I had with doctors, getting help etc. I unfortunately suffered a stroke  less than 2 weeks ago, and suddenly I have experienced a tremendous amount of help and multi agency intervention which has been a complete revelation to me! 

I am doing fine (thankfully) but suddenly I am getting all the type of help I should have received after my TPE surgery. I was very emotional in hospital and I think very angry about my treatment in general and I just let it all out! I got the most amazing help from so many people. This should have happened before but at least it’s happening now! So make sure you always speak up would be my advice.

Sarah xx

Sarah

I am so sorry to hear about your stroke but hugely relieved that (for whatever reason) the various agencies have sprung into action and are looking after you.  Maybe you letting it all out whilst you were in hospital did the trick - the moral of this seems to be if you feel something is not right shout long and loud.  I so wish I had been able to with my own father when he was suffering from terminal cancer and in terrible pain over Christmas, my mother rang the department treating him and they had closed for the holidays (the mind boggles) - I didn't find this out until later.  The relief doctor who visited just said I can't prescribe anything stronger, just take the pills you already have...

I do hope you are making a full recovery and that the help will continue for as long as you need it. 

Keep that voice being heard, Sarah! 

Sending you a big hug and lots of healing good wishes.

Irene xx 

Thank you so much Irene. I’ve spent the years since my surgery not making waves with my gp surgery, in case I got removed from the list since I cannot manage without my stoma supplies so I’ve not complained about anything, including a misdiagnosis over the phone that nearly killed me. I’ve tried never to be a nuisance to my surgeons so only get one follow up call once a year for 2 minutes-I haven’t ever admitted I am disabled and rely on a wheelchair! I just say I’m fine. 

Suddenly I’ve got very angry and emotional and I’m not going to continue not to be heard. Things could have been so much better for me with the right help, but I didn’t get any of it. I’ve learned a very important lesson with this stroke and a new Sarah is going to emerge! 

I am so sad to read about your dad-that hurts my heart for you having to go through that. It’s just so wrong. I had a few meltdowns in hospital with anger and frustration and tears and the fact that our lives have been made that much harder again after everything else. But I intend to do something positive and get the help I need. I’m not going to say I’m fine anymore and I’m going to be firm.

Never again will I have a consultant shout at me in A&E and refuse to see me, and me actually apologise for being there after waiting for 5 hours having been sent there by the gp. 

I think this clot on my brain has stirred me to action! Thank you for your kindness Irene-I really appreciate it.

Sarah xx