Recovery from RC - help for dad

Hi Nic2025,Welcome to the group.I’m sorry your dad is feeling awful.Sometimes things don’t go to plan after this op.The bowels don’t always work that well or stop working and that makes you feel ill.If it’s a nasal gastric tube your dad has got up the nose then he will be nil by mouth.I had one which helped to relieve the bloating and sickness.Hopefully he will start feeling better once the bowels are working.It’s common to lose your appetite and not want to eat post op.When your dad comes home it will be best if he eats little but often.The staff should be giving him pain relief if needed.If your dad is well enough to shuffle/walk around the bed/ward that will help to activate the bowels.It does get better,let us know how your dad gets on we are all here to advise and support.Best wishes Jane 

Hi Nic2025,

I didn't manage to eat much at first - I also had a nasal tube. Hopefully they are on top of the pain relief now although  I don't recall needing much pain relief after the op. I was quite groggy at first and spent 2 days in the ITU - that's common in my hospital.

I never had a suppository either - the bowels need time to settle down after being handled. It took me at least 5 days before I really felt like food although I used to order stuff and eat what I could.  And longer to empty my bowels: if you don't eat there's nothing for the bowels to work on. The bloating is normal and will probably continue until he can move his  bowels. When mine consented to work I produced so much that I blocked the ward toilet - very embarrassing, but reason to celebrate as after that you can begin to plan going home.

Walking helped me a lot as well as drinking all the water I could get hold of. Cystectomy is a big operation and it takes a while to recover from it. I don't know your father's age - I was 70 when I had mine but managed to get myself up and moving fairly soon after I reached the ward. In the ITU you are hooked up to so many machines that it's hard to do more than lie there.

In my hospital the ward round was very early and the surgeons came every day for the first few days so I expect they have already been looking at him. Actually it was the nurses that did most of the sorting out and they usually are very experienced in post operative care. And the physios also started me on the post-op walking and exercises by the third or fourth day. The stoma nurses also turned up quite early and got me to managed changing my bag etc. They are usually very kind.

I hope by now that he is able to exert himself and start the movement and physio exercises. It really is the best way to begin to feel better. 

As for advocating for him. I  managed to do that myself although my daughter probably kept an eye on what was going on. I found the most helpful nurse and used to ask her or him questions. Of course they seem to change the staff around every day so it wasn't always easy to work out who to approach - I used to take my walks past the staff area and see who would talk to me.

I can confirm that day by day things will get better but overall I would tell him that the more he can do for himself the better his recovery will be (and the lighter the burden on your mother once he is home).

All the best,

Latestart

Thank you for your reply, very kind of you. Yes I think it is the nasal gastric tube and he is nil by mouth now. He has managed a short walk with my mum today, but has been very very sleepy. I just feel so sorry for him, he said he feels like he has been hit by a bus.

Thank you so much for this advice. He has been up and out of bed for a little while today, and managed a v.short walk, but still has the drains in so it's a bit tricky like you say. He is 76 so it is a big operation for someone if his age, and maybe the recovery booklet we got was too optimistic for him at his age.

I felt like that right afterwards but hopefully your dad will start to pick up a bit soon.
It’s easier to recover once you get home.It is a big operation but people your dad’s age can make a good recovery.Best wishes.Jane 

Hi nic2025

It's good to hear your dad managed a short walk. Iam sure he is feeling extremely weak and tired. It is important to build the walks up a little bit each day. You should be assigned a physio to assist with this. The physio will not sign him off until they are happy. I found that sitting by the side of the bed rather than laying in bed helped me. As has been said the bowels are important and getting them moving. Again he should not be signed off until they are happy that that bowels are moving. Iam six months post op and I still have some problems with the bowels. It's the nature of the operation iam afraid. 

This operation requires a long period of recovery as iam sure you are aware. Don't rush things , strength and movement will come eventually as well as adopting to new routines. Its good that he has the support of his family around him. Just try to be patient and it will all come together. 

Best wishes 

Mark

It's really interesting the different protocols. I had physio round on Day 1 to get me out of bed and shuffling a few steps. After that i was got out of bed every day, but didn't do any more walking until Day 7. To be able to go home, I managed the required length of the ward and a flight of stairs. 

Nobody seemed bothered about bowels - managed a small bullet on Day 7. Perhaps because I was able to eat OK. The Fortijuice that they wanted me to have made me feel nauseous. Worth asking for different flavours and just have small sips at intervals rather than all at once.

Certainly I felt unbelievably weak and tired at first. Pain relief was also a bit erratic. Things will improve slowly, especilly once he is home. He will need plenty of rest, inclduing a daytime nap, but try to build up walking (shuffling) a little bit more each day. Anything he fancies to eat is fine, but aim for protein & carbs. Little & often, even if just a mouthful or two every hour or so, and plenty to drink. recovery can seem very slow, it is a matter of months, not weeks. Best wishes to you all.

I was really suprised not to see the physios.I was very much left to look after myself as contact with the nurses was minimal.The night nurses made me do my own injections.The staff were nice but I hardly saw them.The dr who came round daily was the person who decided when I could go home.I asked to stay in an extra night as I was still vomiting and had a journey home of over 40 miles.Jane 

Hi Teasswill 

I came out of surgery at 6pm and spent the night on the dependency ward beside the op theatres. At 7am the next morning even before I was took back to my ward two physios hauled me out of bed and made me walk around the ward, one at each side of me for two laps then back into bed and up to the ward. I had a physio the next day who made me walk up and down the corridor which i was able to do and was then signed off lol.

Best wishes 

Mark

I had to walk a lot and climb up and down the stairs several times before they released me: there were 2 physios at first. The stairs were easy because I had had a hip replacement 5 years before so I knew the drill with stairs and walking aids. We live in a town house with 4 floors so if I couldn't do stairs I'd have been in serious trouble.

Funnily, although this was a Urological surgery floor with numerous small wards full of post-op people, I never saw another patient doing any physio or walking - we'd all been given a list of 5 post-op exercises before the operation from 'high marching' to 'sink squats'. I met one of the nurses only a few months ago who still remembered me from my daily excursions so I must have been the exception rather than the rule. She said I recovered very well from the beginning.

I still swear by walking as much as possible. though before cancer I did well over 10k steps daily and now I'm pleased if it's 7-8K.