Slow recovery after APR surgery...is this normal?

Thank you for your kind words. I am going to look at the group.

Thank you

Hi Rachel and a warm welcome from me too.

I know there are a few that have had APR surgery recently like and Ewok to just name a couple. You could type APR into the search box at the top of the screen and that will take you to all the posts that mention Apr which you might like to read? You can also click on people names which will take you to their profile page which may show you a bit about their background.

If you need any advice or help with your colostomy please join the Ileostomy, Colostomy and Stoma Support Board where our resident expert Ian aka will be happy to help.

From what I’ve read it is quite a long recovery from an APR operation so please take things slowly and don’t be too disheartened if things seem to only be improving slowly.

Hopefully some of the members who have been through this will be along shortly 

Take care

Karen x

Hi Rachel, sorry to hear you’re in this place but we’re all very supportive. You’ll get a good idea where I’m coming from if you read my profile. 

This is very very tough but you will get through this. You will be reminded quite frequently that you have had a major operation by all who visit you and that it no understatement. 

I have had quite a few bumps along the way and the road is beginning to straighten out. I found that I had to keep reminding myself of the scale of my surgery and that usually did the trick. It made me accept things as they were/are. Obviously we’re all human and tears have been shed but that is all part of the emotional recovery too. 

It’s  very frustrating but as I found you improve by the month...the week.., and then suddenly it dawns on you that you have in fact started to improve by the day.. sometimes by leaps. Then you slow down a bit... but don’t despair it comes back again!!

Hang in there Rachel.. contact your nurses, GP’s, surgeon, keep posting on this forum, contact me if you wish. 

We’re all in this together and that’s one thing that gives us our strength. Big hugs today and happy new year. Xx

Hi Rachel, 

sorry to hear you’re having a rough recovery. How long ago did you have your APR op? I had mine back in spring. The op was successful and went smoothly. I was told to expect to stay in hospital for a week, but I stayed for a fortnight. My wound was fine, but I had a build up of fluid at the op site which became infected. Long story cut short I was on antibiotics and had an extra drain inserted. 

I was incredibly miserable in hospital, I’ll be honest. I was angry, tired, tearful. I could barely move, I was uncomfortable. I wasn’t in pain though, and was paracetamol only within 48 hours. 

My colorectal nurse told me that I had to remember that it is a major operation. If I’d had it done 15 years ago, it would have been an open wound from bottom of ribs to knicker line, rather than key hole. Part of a major organ has been tampered with, removed, etc, no wonder it bloody hurts! The keyhole in my belly recovered very quickly, I had no issues there. The wound where they’d sewn my bum cheeks up gave me grief. I had to lay on my side all the time which I hated. Not being able to sit-up properly really affected me mentally. It’s not just the physical healing, it’s the mental healing too. 

Anyway, once I was home after a fortnight, I made a better recovery. I was in a better place mentally too. It took a while to sit. I am nine months post op now and I can sit! I would say, from personal experience, to allow yourself three months to be more comfortable. Please don’t rush the healing, and please don’t beat yourself up because it’s taking time. It’s normal. I was given a special cushion to sit on, it’s shaped like a valley, way more comfy! I had it on loan for two months. By the end of those two months I no longer needed it. By month three I was sitting more straighter, rather than leaning to one side. You’ll get there, I promise xxx 

Allow yourself time to be angry, moan at people, be waited on, sleep, watch tv all day. Do what you need to do to recover. All I’d say is to aim to move around sometimes. When I was in hospital I gradually increased the distance I walked each day. It was a goal I could do without anyone else controlling. I made sure I did it three times a day. I felt better for it! 

I hope you feel better soon, but please come on here anytime you need to if you need a rant or some encouragement. You’ve got this xxxxxx

My apologies for being late to the party and whilst I am sorry to hear that you are having a tough time you have been given a lot of really good supportive advice from others. What we all have to remember after this type of major surgery is that we are all different and our bodies take time to heal and can't be rushed, do what you can when you can and you will see improvements daily.

As mentioned my expertise lies in the Ileostomy, colostomy, urostomy and any other stoma support group and I am here to assist you with any problems you may have with stoma management including product selection.

If I can be of assistance at anytime please just type @Bodach into any message and click on the blue box that will appear and this will turn green in your post and I will be alerted and get back to you.

The members of all groups in the Mac family are all very friendly and only to willing to answer any questions that you may have and give all the help support and advice that you need.

No question will ever be classed as silly if you need to ask about something just ask the members in the groups you join will all have been in your shoes in the past and will pass on their experiences.

Ian

I am sorry about not answering earlier - the notification went to my spam folder. I was retired through ill health at the end of last year - I am still having pains from time to time (18 months since my APR) but am finding it I pace myself I can do most things as long as they don't involve heavy lifting. I am still careful about sitting down and find a chair that helps me sit up straight helps - are they called bucket chairs? Normal dining chairs tend to let me slouch which isn't good. 

Went to see my surgeon who said part of the pain may be a gallstone pressing on the nerves - it seems logical and my back maybe because of a small fracture. My doctor said we knew about both things so it's nothing to worry about. I'm sure she must have been using the "royal we" as I had no idea. Anyway neither are stopping me doing stuff I am just learning I sometimes have to rest when doing it!

Someone asked on here if I had anal cancer - I did but couldn't tell you what it was.

i had APR surgery with permanent stoma in September and recovery is slow and to be honest a bit depressing at the moment. I know the hospital said it would take a long while to recover but there seem to be so many things to cope with.

stoma unpredictability, and all sorts of odd aches and pains

most of the time I’m fine but in the evening and often during the night I have a lot of deep groin aches in both right and left sides is this normal

nearly six months after the op and the bum cheeks are so uncomfortable. Using the loo is still difficult and even going upstairs is difficult as the tissue doesn’t stretch. Does it ever get better or is the bum area numb or uncomfortable for ever

Hi @Pippajane, you really have done amazingly well. Driving and walking was a major achievement and going to your son’s wedding amongst all kinds of other things that probably didn’t  register at the time.  This is a huge operation with a huge impact in all kinds of ways. I think we are so focused on getting through this we forget about the adaptions we need to make moving forward with our bag for life. It can take over our lives and I hope there are some ways we can avoid this. Are there any support groups in your area?  Big hugs ..XX

Hello again @Pippajane, I stopped taking Senna, Movilax etc and that stopped the very odd pains I was getting with the stoma. As for predictability, I have the same question too. This is a huge learning curve and don’t want to have this dictate what and when I eat, but I accept there will have to be compromises. Getting up in the middle of the night to empty the ‘hot water bottle’ is no joke but if it means more freedom during the day, that’s ok. Can you see your GP re groin aches? I had a mesh insert (permacol) maybe its that doing a bit of adapting as I think new muscle grows within it? As I’m a few weeks behind you it’s difficult to comment on other areas but I have found bio oil (x 2 day) quite useful to make thing more stretchy.

I hope someone will be along soon who’s a bit further ahead than both of us to give you more tips. Xx

Hi Ewok and Pippajane.

I had my APR in May 2017. I don't often have to get up at night to change my bag but I leave it about six hours after eating to go to bed - it used to be four hours but my dog is getting old and needs to be let out around half past eleven.

I must admit I am quite careful with what I eat if I'm going to tai chi or sword class but going out with friends I'm not careful at all. In the 2 years I've had the stoma (I had to have a temporary one before the APR) ivrIonly had to change four times when I've been out.

Sitting down is uncomfortable to start with and I'm still quite careful when I first sit down but it does get a lot better. 

I hope you both feel better soon.

Ixypixy