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How long ot return to normal, age 50, cystectomy
Posted by FarRed on May 23, 2010 at 7:33 amI had my cystectomy and neobladder just over two weeks ago. Over the last two months, along with two TURBTs, I lost 20 of my 160 pounds. I’m struggling to get my appetite back, which I guess is a result of my body recovering from major surgery and the pain killers.
What is your experience of how long it takes for the pain to go away and appetite to return to normal? I have a followup with my doctor in two days and am hoping he say I can do some sort of exercise, maybe some light weights.
Age: 50
Bladder cancer diagnosed Mar, 2010.
Robotic assisted laproscopic cystoprostatectomy with Studer neo-bladder, 2010.
UMC TucsonGKLINE replied 14 years, 8 months ago 6 Members · 10 Replies10 Replies-
Just got back home and thought this was a very interesting post to weigh in on. And since you are feeling better after surgery, I will pass on a little info.
Even two years out I still can have days where urination is akin to peeing caramel. Very slow and quite thick. But This can be countered by drinking lots of water during the day. But watch your intake after 6 at night. You don’t want to be going to the bathroom a lot during the night.
As for the weight loss; I lost 30 pounds after surgery. I could have stood a loss of 20 anyway. But that extra 10 was a reason to eat well. I gained 15 back. I now maintain that weight day to day and feel great. BUT! this past weekend I spent the days in a formula 2000 race car and was passed by all of the young whippersnappers who weigh about 125 lbs. Every time I had to climb up that hill my car had to carry my fat backside up too. I was relagated to 6th place!
Seriously; You will return to normal life rather quickly. If what I read in your post is true…. You will beat our recovery times by the same speeds as those young guns beat me in the races! Don’t sweat it, you are on the right track!
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]Thanks for the encouragement and advice. I pretty much eat anything that sounds good just to get in the calories. I can’t look at fruit juice, broth or any other clear liquids without getting queasy.
I woke up this AM feeling better than ever. I had robotic assisted; the only large incision is less than 3 inches where they put my new bladder in–scars are cool. Most of my pain comes from my lower back, a chronic muscle condition I had before the surgery. I surprised myself this morning and sat up using my stomach muscles without thinking–so that site is doing better than I thought. I saw my regular doctor about the back, so am taking something for that instead of the Percocet my surgeon prescribed, but I’m weaning off of that too.
I’ll see my surgeon tomorrow, so I can grill him about how much activity I can have.
As far as recovery, what was it like the first time you urinated “normally”? I have my Foley out in a week and a half, the 4-week mark. As I understand this, he will cap the super pubic tube, then have me drink a lot and see if I can urinate normally at his office. If all goes well, a week later the SP comes out, and I’m on my own–kind of like taking the training wheels off. Woohoo!
Age: 50
Bladder cancer diagnosed Mar, 2010.
Robotic assisted laproscopic cystoprostatectomy with Studer neo-bladder, 2010.
UMC TucsonGuestMay 23, 2010 at 6:25 pmSometimes..well Often…if you continue to take an opiate after returning home and have not been weaned off of it it will result in a rebound effect. You think you still have pain because your brain is programmed to think you still need the drug. You need to wean down if thats the case. But still a good idea to mention to your surgeon.
patGeez, just 10 more lbs? Even with having to eat less (even now 2 yrs later), it seems like someone came in the middle of the night and packed it on me.
Now I’m trying to lose that and more. Probably the lack of exercise doesn’t help. The estimates of a couple of months are pretty much on the money. Just be careful of quantities or your colon will object.
Although I wasn’t moving around too much when I got home, I was essentially pain free (no medication) when I got home. During my stay I was on an automated epidural and when it was removed, I took vicodin the first day and then nothing. Drains were removed before I left the hospital.
I’m not sure if my experience is unique but if it is common, then you may want to explore why you are still having pain.
LeeH
I forgot to mention, if you are only TWO WEEKS out and hoping your doctor is going to let you start exercising, you are doing GREAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAATTTTTTTTT!!!!!!!
:)
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.GuestMay 23, 2010 at 6:02 pmEven if done laparoscopically as mine was done…no lifting over l0 lbs and bend at the knees….stomal hernias can happen also….Anyway…i lost 23 lbs which i didn’t have to lose…but that left the door open for Venti, whole milk, Mocha’s every day, and lots of other yummy high calorie goodies. I also made sure i got my protein every day with eggs in the a.m. ..but my meals were light as intestines were still angry with me. I really didn’t not have much pain as i had stiffness…tylenol was all i really needed until i could actually walk in an upright position. I found certain foods really irritated me and this is pretty individual with everyone..i was fine with fruit juice..just couldn’t eat the fruit except banana’s. Veggies difficult also..salads were ok though……so its kind of a trial and error process.
Hang in there Red!!
Patmmc wrote:
The weight typically comes back over time, even if you didn’t want it to.
LOL……….back plus 10!!!!! But i quit smoking as well.
Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, MichiganAs Jim said, a couple of months to get appetite back and start feeling pretty good. Around 5-6 months to be fully recovered.
Be very careful of weights of any kind. Unless your surgery was done laperoscoply, you have a pretty big incision. It’s not that you will tear the incision, but the chance of a hernia along the incision area is very high.
Walking, walking, and walking are three very good exercises. Just about anything you lift is going to cause some amount of tension on the abdominal area and you just want to be careful.
The weight typically comes back over time, even if you didn’t want it to.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.GuestMay 23, 2010 at 12:51 pmHi Red –
Jim is right, the appetite takes a while to come back. I ‘m almost 3 months post op and it took my digestive system 6 weeks to get fairly normal again. I’ve I can eat pretty much anything, just in smaller quantities. I’d be surprised if you get cleared to lift much, I was 7 weeks before I could. Lots of walking though – over 2 miles a day right now. Things do get better, you’re at slow point right now. 2 weeks ago my wife and I traveled for the first time and right now I’m in Indianapolis watching time trials for the 500. Life will get back to normal!
Best of Luck and keep asking questions.Andy
Red, I lost 23 lbs. It took me a couple months before my appetite
came back.I would be walking all you can, even though you still have a catheter in for two more weeks.
Just be patient, i know it really sucks right now. Time is standing still currently.
I am a year post op now, and can’t believe how fast time went.
Jim
Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, MichiganSign In to reply.
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