Roadmap to recovery?

17 years 3 months ago #2944 by BlcSon
Replied by BlcSon on topic Roadmap to recovery?
I'm still working my way through some of the reading and will probably have more detailed questions to come. For now my biggest concern is planning adequate time away from work (and leave without pay if necessary). I live 6 hours away from him. It sounds like spending an extra week after he returns home might be enough for him to somewhat "get on his feet?" I'm concerned that this will be a bit more life altering and dramatic than he realizes. I will encourage him to read some of the accounts on this web site.

Thanks everyone.

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17 years 3 months ago #2939 by banditswife
Replied by banditswife on topic Roadmap to recovery?
Hi

My 61 year old husband had a radical cystectomy and ileal conduit on July 6th this year. Like your father, he wasn't given any option except to have the "bags" and other treatments were not offered. He is almost back to "normal" physically and is coping well with the bag, in spite of having only one arm. He uses a two piece bag which he changes twice a week and and at night hooks up to a "night bag" so that he can sleep all night without having to empty it. He had a couple of "accidents" early on because he hadn't closed the tap on the night bag properly and one time he moved too quickly which caused the sticky part to come unstuck, but apart from that the bags have been very reliable. He is able to do everything he could do before except that bending to the right (the side of his stoma) is a bit awkward. Staying with friends makes him uncomfortable because he has to wash out the nightbag each morning, but he has done this a couple of times, washing it out in the shower or disposing of it and using a new one each night.

He has no pain but is often itchy where the base plate sticks to the skin. His impotence has been helped using Viagara, but this is still a sensitive issue for him. He wasn't told about this before his surgery - I'm not sure if that was an oversight by his doctors or done deliberately. Your father might be better informed than we were.

He is still coming to terms with the whole thing and says he would rather have lost his other arm than go through what he has, but at the same time he is living an active and happy life. This site has been extremely helpful and reassuring for us, we wish we had found it before his surgery as we would have been better prepared.

He was in hospital for 15 days and after that I stayed home from work with him for another week, after which he was ok by himself. He didn't drive until about 6 weeks after the surgery but he was told he could drive as soon as he could brake comfortably. He could walk up and down stairs after about four weeks, but tired easily for a the first two months.

I hope this is some help and I hope everything goes well for your dad, he is lucky to have you to support him.

Banditswife

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17 years 3 months ago #2934 by wendy
Replied by wendy on topic Roadmap to recovery?
Hi,

There are some articles - Survival Guides- with info compiled by those who have been there,
blcwebcafe.org/hospitalizationforcystectomy.asp
blcwebcafe.org/posthospitalsurvivalguide.asp
blcwebcafe.org/hospitalsurvivalguide.asp

Not all of the info may be relevant, but much of it will be helpful as to giving tips on what to expect and how to deal the best way possible.

Hopefully some of those who have had ostomy surgery will respond, but I can tell you that it will definitely still be possible for your father to cycle, swim, practice any sport he did before as well as travel on planes. There are ways to deal with all of it.

It will take around 6 wks to get over the worst of recovery, and they say to figure approximately a month for every hour spent on the OR table to get really get back to normal. There can be complications with bowels that take time to get working again properly and that is one of the most common difficulties post-op.

There are also some first hand accounts here:
blcwebcafe.org/stories.asp

And there are many helpful folks on this board who have had their bladders removed and can attest they are living full lives post-op. Your father's been through a lot already...I'm sure it's been tough.

Wishing you both all the best,
Wendy

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17 years 3 months ago #2932 by Jmema
Replied by Jmema on topic Roadmap to recovery?
Hello,
I am 72 but very active and was taking care of my 17 month old granddaughter up until my surgery.
I had a radical cystectomy with hysterectomy and was in surgery almost 7 hours. They do a lot more to women than to men but I did have an ileal conduit. I was in the hospital 7 days and went to a rehab center in our town for 7 days. If you have a nursing home/rehab center in your town, insurance will most likely pay for it if the Dr. orders it and it's a good idea.
By the time I came home (14 days post-op) I walked upstairs. If you look under cystectomy you will see a thread started by my daughter Gina and that will give you some idea and then there is one called Recovery Time by Nanaca which gives a lot of information. Your Dad will need someone for a week or two when he comes home because it is hard to get up and down off a couch and you get pretty tired. Also, find a good stoma nurse through the local visiting nurse. They are a tremendous help.
I am sure that some men will come on and give you some information. There is a man named Keeta from Canada and he had the operation not too long ago.
Good luck and take good care of your Dad.
Jean

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17 years 3 months ago #2930 by timb
Replied by timb on topic Roadmap to recovery?
A gentlemen (aged 76) was in the opposite bed to me in hospital and seemed pretty good by 9 days. Appetite back up, bit delicate moving around but surprisingly functional. He had some bowel issues which isn't too surprising after any long surgery but he led me to believe that these were largely resolved by the time he left. I understand there are a range of bag sizes to help with things like travelling but a stoma nurse or similar should be able to guide you through all the options. I was up for a bag before my neobladder and I was told that even things like swimming were fine. I think appliances have come a long way in recent years.

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17 years 3 months ago #2928 by BlcSon
Roadmap to recovery? was created by BlcSon
My father (age 64) was diagnosed last December with grade 3 stage 3 bladder cancer. The doctors' opinions have all been radical cystectomy from the beginning. We got several opinions (all the same). We went to Boston, met with Dr. Kauffman et al who eventually decided he didn't qualify for their bladder sparing protocol. My father was initially unwilling to accept surgery and so had the local Oncologist give him one of the new 3 (Gemzar, something and something). It didn't work all that well so he went in for Cisplatin with radiation. The tumor was resistive to this as well. Finally he is accepting that radical cystectomy is his only remaining option and is scheduled for it at the end of January.

The surgeons we have met with so far all prefer to give him the traditional bag on the outside rather than any of the newer treatments (ie - neobladder), and that is what he is scheduled to receive next month.

Unfortunately I don't live in the same city as my father so am trying to plan how much time I will need to take off work to stay with him. My father has some coronary artery disease but is otherwise healthy. I was hoping someone could help give me a "road map" to recovery. I understand that week 1 will be spent in the hospital. Could someone describe the following weeks and how he might feel, and what activities are possible? Approximately how long until he is able to go up and down stairs, lift the garage door, drive, etc.? I know everyone is different so I'm just looking for a general guide.

This final question is unrelated and not so urgent, but I was wondering how this type of diversion will affect his ability (if at all) to go cycling, or travel internationally, etc.?

Thanks for any and all information! I hope my questions aren't too generic.

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