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Scan results and whats next ?

12 years 6 months ago #10242 by Patricia
Hi Lisa......well at least you should be out of the hospital by Dec 1st...i know things go a bit differently in the UK...but in the states with the Indiana Pouch the stay in the hospital is usually determined by how fast your bowels wake up..that can be 5 to l0 days usually. You will have several tubes still in you when you go home which will stay for about 3 weeks while your new pouch is healing which means about the third week in December you will go back in and have them removed and be taught how to cath properly. At first it will be a bit overwhelming with the catheters, the surgilube, the irrigation you need to do to break up the mucus, gauze, bandages...stuff!! It takes a while to train the pouch and at first you will have to empty every 2l/2 hrs for about a week..then up to 3hrs...then 4...a week at a time...It will take a while to get used to your will seem to have a mind of its own at first. Depending on how far away your in-laws are.. if its a short trip maybe...but realistically its hard to do any travel for 6 weeks. You're young so you may just bounce right back in short order but its still a lot to contend with.
It would be nice if your in-laws would just come in and help take care of you and the kids and the house. You've got a lot on your plate. I wish you the best. Pat

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12 years 6 months ago #10227 by lisaloo
I have just had a call from the hospital to say I am booked in for the 20th of November.AAAA so soon

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12 years 6 months ago #10225 by timb
Hey Lisa

I just PMd you in response to yours and then I read this. I have a neobladder which is slightly different and Im a bloke but I was in hospital for about 9 days. I was pretty weak when I got home and my partner was fantastic giving me lots of soup and hugs which is what was needed. I watched a lot of Richard and Judy. about ten days or so after surgery I was able to be driven to the countryside and walk a couple of hundred yards. I was starting to cook and wash up again occasionally by this point but was still being cared for. I tried to do a bit more each day. I still had a urethral catheter in at this point which was OK but managed a cup of hot cider at cheddar gorge (it was a cold day!).

You may well be OK to go away from home 3 weeks after surgery but it's probably smart to plan for several possible scenarios.

My sugery took place on 19th October and I went for a break to St Ives in Cornwall on the 10th December. During this trip I ate fish and chips, took gentle walks, made sandcastles on the beach and drank beer in moderation.I was starting to feel pretty normal by this time. Normal enough to handle an English beach in december!

I've spoken to a number of people here who've had both the neo and the op and some have recovered even more quickly than me and some have taken a little longer. I think and hope that you will be surprised at how well you cope. You will probably feel like you've been hit by a train for a week or two and gradually scramble your way back to normality. I also got very emotional when I got out of hospital and found myself bursting into tears over the cheese counter at Tescos!

The worst time for me personally was before the OP and the first few days after in the hospital. I look back, weirdly enough, quite fondly to my gradual recovery. I think I haven't been more in touch with myself before or since. it was also a good time for reflection. there wasn't much pain involved - more like inconvenience and discomfort which could usully be got around with a bit of TLC, antibiotics and over the counter meds.

It's all pretty easy for me to say now and I remember before the op the sense of dread you are feeling now. once you are dealing with it you just have to get on with it and the choices narrow which can make things more straightforward. some parts of the recovery you won't have anticipated and, in my case, many aspects were not nearly as bad as I was expecting.

I was back at work at the start of March and, if I'm honest, probably could have gone back sooner.

From what you say about your pathology, cystectomy is absoloutely the right way for you to go in my opinion. and the sooner the better so you can get on with the serious business of acclimatising to your new equipment (it'll seem totally normal to you in a years time), putting this in the past and getting on with enjoying your life again.

all the best


PS can your hosp put you in contact with someone who has had this op? I found it really valuable.

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12 years 6 months ago #10224 by lisaloo
Hello again
I get the feeling I am going to be here asking for advice a lot.
I have now got the results from my scans and its apparent my bladder has to go.It seems that whilst the tumour is muscle invasive all lymph nodes are clear.My surgeon is recommending an internal pouch as the best option.
I am a bit of a wreck this has all been a huge shock and I have to admit to not really coping at all.We got the results on Friday and I havent functioned at all since.They are hoping to schedule the surgery for the first week in December.
How long is it likely that I will be in hospital and how am I likely to be feeling by Christmas my mother in law has suggested we all go and stay there.She is trying to be helpful as we normally have both parents at ours for Christmas and I probably wont be upto coping with that.However will I feel upto staying away from home three weeks after surgery.
Lisa x

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