Recovery time for urostomy surgery?

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Highlander15
Jan 30, 2012 7:46 pm

Hi there, I have to go out of state for a urostomy. Can someone give me a rough idea of recovery time after surgery, all going well with no complications? I will ask my surgeon, but like I said, he is out of state and would like a rough idea as I need to board my pets. Thanking you in advance. I will have to fly back but can get a direct flight, about a four-hour flight.



Meg

girlygirl
Jan 30, 2012 9:27 pm

I don't know whether everyone's opinion is the same, but I was in the hospital for 3 weeks.
The average time is 3 months to actually feel okay.
But really and truly, it took me 6 months. I don't know your age and fitness level,
but I'm 60 and I had a major operation 19 months before my urostomy.
So I can't say I was 100% fit anyway. Good luck. x

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CloudyRae
Jan 31, 2012 2:07 am

My husband was in the hospital for 5 days. Hopefully, you'll do well and be out quickly as well. Good luck.

Patches
Jan 31, 2012 2:43 am
Hi Meg,
I had my operation in NYC in 2003. I was there for 6 days. It would have been 5, but I ran a slight fever, so they kept me the extra day. I had no pain and no problems when I got home.
I was so scared to have to go through this, but now that it's over, I think back and it was nothing to be afraid of. I did say lots of prayers.
Wishing the same for you!
ilsn2u
Jan 31, 2012 2:57 am

I had an ileostomy on a Thursday, got out of the hospital on Monday, and traveled back home (a 4.5-hour drive) on Wednesday. Good luck!

 

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Past Member
Jan 31, 2012 6:27 am
Had urostomy at 74. Walking after 3 days with help- 9 days in hospital, drove car on 2nd day
out. Activity is restricted for 9 weeks (approx). Now 76. No problems now. Pouch problems
some leak at skin interface. Use 3M skin colored tape to seal. Best use Cymed pouch. Call
800 582 0707 samples. Skin care.---- Shower soap and water-- remove pouch -- shower
water only. Pat dry-- tissue works best, apply Domeboro 20:1 solution with cotton ball--
blow dry-- cool only-- apply pouch. Domeboro (from drug store) is recommended for red rashes and folliculitis (little pus heads that are not ingrown hairs) shave in shower flip out trimmer
only.
girlygirl
Jan 31, 2012 7:01 am

WOW! You all must have good surgeons in the states!
Over in England, I don't know any of us that got out of hospital or recovered so quickly!
But then again, I guess it's all down to what complications arise. Good luck to all of you. xx

Past Member
Jan 31, 2012 7:35 am

I had a total pelvic exenteration which included both temporary colostomy and urostomy, surgery date 7/30/2011.
I was able to walk upright without a walker or cane and change my own baggies within two weeks of discharge, so that's three weeks post-op. This was a 9-hour procedure; I can hardly believe I did so well.
It might have been shorter had it been only one stoma. I also was literally pain-free; I chalk it up to both superior surgical technique and a non-narcotic pain reliever I'd never had before (Tramadol).

If you don't mind one suggestion:
If you have a choice, ask to decide on the stoma site with your surgeon prior to going under the knife. My guy did a beautiful job with no consult, but I've read that often the patient can be involved. My urologist told me that in his practice, the patient comes in beforehand wearing clothing typical of a usual choice and the site is marked or documented ahead of time.

Hope you don't have to drive too far, else that you have someone to take you, or perhaps fly. The only precaution against driving yourself is the tension that driving puts on the belly that we never, ever notice until we're sliced and diced.
But your surgeon has the last word on all that, and do follow instructions to the letter to avoid hernia, suture pulling, etc.

Past Member
Jan 31, 2012 7:37 am

Forgot to say: I was 53 at the time of the procedure. Not in good physical condition, though I was in good health other than the cancer.

bob.hewson
Jan 31, 2012 10:00 am
Hi Meg,

I had my operation in Australia and was only in the hospital for 5 days, which included a day just waiting for my appliances to come before I could be discharged. I spent one day in ICU just to ensure I was OK and then into my room with a pump that I could press every 10 minutes to give me a shot of painkiller. In two days, I stopped using the machine as the pain was manageable with just Paracetamol. I was supposed to have a total of six weeks after the operation before I flew 4500 km home to the Philippines, but I could not afford the cost of accommodation so I went a week earlier.

I had no problems flying with two months' supply of my appliances as Qantas classified them as medical supplies and did not charge me excess luggage from Australia, as a Qantas agent in the Philippines did for my return to Australia for further cancer treatment 7 months later (but was later refunded).

I had no problems with the inspections at the airport when they patted me down and found my urostomy bag. I did need to go to the toilet several times during the flight and I was lucky to be near the toilet on the plane, but I used a night bag for my next flight which was much easier as I did not need to leave my seat all flight.

I had metal staples holding my cut closed and most were painless to remove about 4 weeks after the operation. Some were stuck to the skin and were a bit painful to have removed, but the worst for me was the removal of thousands of hairs along with the bandage over the wound. You should not have this problem.

Full recovery took about 3 months, but learning to do the right thing still has not happened. I will go to the toilet and empty my bag, shake the nozzle, then just put it back, only to find that I forgot to turn it off first and have warm urine running down my leg. I would play with my son and he would dislodge the bag (two-piece) a bit and urine would again flow. I opened my bag in the doctor's surgery only to see that my pants were keeping a lot of urine trapped in the top and urine flowed everywhere again.

As the Ileal conduit is a small part of your small bowel, it will regularly indicate a UTI every time you get a test and you can be taking antibiotics for no reason. Ensure you have other symptoms (smelly urine, kidney pain, etc.) before starting a course of antibiotics.

Make friends with your stoma nurse and ask many questions about anything and everything you want to know, including sex. They have a lot of experience and will help you with all these details.

Remember that you are having the operation because it is your only chance, and after you have had the op, keep remembering that as you will ask yourself "WHY" and "why me" many times when things happen. Just remember that you are much better off with your urostomy than dead.

I trust that everything will go well for you, but you do need to remember that even the simplest operation can have complications and the most complicated can go without a hitch. We are all different and will heal and experience pain differently.

Bob.
Leggy
Jan 31, 2012 10:36 am

I had my op 6 years ago. I was in the hospital for 6 days. There was no horrendous pain, just discomfort and getting used to applying the pouch, etc. Once home, I would advise you to simply take it steady for a while. Do what you feel you can do - and no more, but no lifting anything heavier than a kettle of water!! I had bouts of sore skin for a while but realized (not told) that my stoma shrank slightly over a period of months, so I needed a smaller hole cut in my pouch. After that, no problems, life is as normal. I swim, walk, ride, etc. Apart from close family and one or two friends, no one has any idea I am a urostomist. This is a great site for finding answers though.

mooza
Jan 31, 2012 11:17 am

LOL, we are all very different. I say it depends on health. You will get out sooner than 3-4 weeks. Can't remember all mine, but the first was 10 days (was very ill anyway). Next time 6 days, next time 4 days, etc. As everyone said, no complications, you can be out of there in no time. Yes, BOB, I got my Morphy pump too. Ever watched 2 people playing kick to kick with a soccer ball? LOLOL, I watched with interest for 2 days. HAHAHAHAh, not people at all, BLOODY POLES SIDE BY SIDE HAHAHAH. Think I pressed the shite out of that pump, only worked every 5 minutes (not that I knew). Lol, good luck with the uro surgery darlz. Suppose if you can get a bit healthy IF YOU CAN before the op, it could be of some help. They sure want to kick us out asap down in Australia. xxxxxxxxxxxx mooza xx

vulcanBMk2
Jan 31, 2012 11:58 am

I suppose in the USA you have to pay, so they kick you out of the hospital pretty pronto. My Urostomy was over 4 years ago, so if I remember... Had Op... 3 days in High Dependency... 2 weeks on ward. I felt like driving about 4 weeks later. Took 4 months off work recuperation at home. (Had a couple of visits from District/Stoma nurse to make sure I was healing OK, doing things right.

I worked for 6 months with no problems, then the company I worked for closed down due to contractual problems. I was made redundant.

I just couldn't be bothered to look for another job, so at the age of 62 I dropped out, retired gracefully...

18 months ago I was opened up again to mend a post-op incisional hernia. Having 29 staples down my belly again wasn't much fun... but I made an amazing rapid recovery, no problems since.

All this for free on the British NHS....

dewey
Jan 31, 2012 1:03 pm

At age 55, I was in the hospital for 7 days, then home recovery. I was back to full work in 6 months.

Highlander15
Jan 31, 2012 1:30 pm

Oh boy... you people are all rock stars. I have had a lot of surgery throughout the years and bounce back pretty quickly. Some was done in the UK and did notice they keep you in longer than here in the US. I am in training right now like Rocky. Eating right, exercise, meditation. At least this surgery I can schedule which is great.

Thanks so much for replies and tips. This is great.

M

Highlander15
Jan 31, 2012 1:33 pm

Thanks so much for your tips and your time. Can you tell me how you disguised your bag on the plane trip - the overnight bag? Is it possible to do that? I have had a lot of surgery, a few much worse than this, and I do realize this is the only way to protect my kidneys - I would not do well on dialysis, so I am a willing patient. In fact, I am grateful for the chance.



Meg

Past Member
Jan 31, 2012 2:00 pm
Meg, I am in the Orlando area. I flew to MD Anderson in Houston for my surgeries.
Urostomy flying home was not a big problem...I made sure I had an aisle seat, so that I could get up to empty. I did not use the night drainage bag for travel..What I use these days, and I travel a lot, is a "Leg Bag"...
As for recovery? It took about 6 weeks to get a decent semblance of normalcy. If there is such a thing as an "Ostomate"??
Walking as often as possible (not worrying about distance) will speed up any recovery time..

I got a new dog, (my other one died 4 weeks before surgery), 6 weeks after I got home and boy did that save my sanity, health, and life!!!!

Richard
Lecia
Jan 31, 2012 3:47 pm

Where are you from? I can't believe anyone would have to fly somewhere for surgery. I was treated at Roswell Cancer Institute. Of course, I had a double ostomy due to cancer. It took me a while to recover. Yes, it was the same place that they recently found a cure for some cancers. I am proud to say they are wonderful people. The best care I got from anywhere.

theiko
Jan 31, 2012 4:08 pm

I would say a 5-day hospital stay and about 3 to 5 weeks of easy-going recovery. Take notes on your best results of aftercare. You will learn a few tips for yourself, however, a must, as far as I can say, is to care for stoma maintenance is 1/2 water and 1/2 vinegar with 4x4 cotton swabs.
Have a nice recovery.

Past Member
Jan 31, 2012 4:21 pm

Lecia;
I am from the Orlando area and Meg is from the Sarasota area..
I went to MD Anderson Cancer Center in Houston, TX. They are about the best. I too had a 'double'! Urostomy and Colostomy..I chose them because my situation with Cancer and loads of Scar tissue needed to be done by Specialists in the field. Here in Central Florida? It is a group put together by another Dr. and they might do our type of surgery 6 times a YEAR. # MD Anderson, they do this surgery 6 times a WEEK!

Highlander15
Jan 31, 2012 4:47 pm

I have real bad radiation damage from cancer, in fact that is the reason for this surgery. This is my third redo of bladder alone. I have traveled all over for surgeries - Cleveland Clinic, Duke, Anderson Cancer Center, Mayo Clinic. It is difficult to find someone who wants to operate as I am a 'difficult fix" as they say. Luckily for me, I am not scared of surgery and bounce right back. I truly wish I did not have to travel to New York from Florida but I am lucky in that the surgeon seems like a nice guy and world class so they tell me, and he is willing to try to help.



Meg

Highlander15
Jan 31, 2012 4:57 pm

Awesome, I have been treated at MD Anderson as well back in 1999. It is like a village, isn't it? It is a huge complex. I had radical radiation, finding it hard to get someone to operate at all. I went to Cleveland Clinic in Weston, etc. Thanks for the news about the night bag. I was thinking it probably would not do for me as I am just over a hundred pounds. It would be like carrying a sack of potatoes, ha ha. Yes, I will get an aisle seat anyway. I am just concerned about my pet really, or I would not worry about time. I want to fly back asap but want to give it a good chance to heal without infection, etc. Enjoy your dog, I love animals.



Meg
Past Member
Jan 31, 2012 5:26 pm

Meg, I too had lots of radiation damage from my prostate cancer procedures in 1998 and earlier surgery in the pelvic area. MD Anderson was the only place that had the experience and doctors with knowledge of how to perform the surgery on me. I was under for about 14 hours.
They took out the bladder and of course made me a urostomy stoma. Then they had to 'seal' up the rectum after removing a large tumor and again made me a colostomy stoma.
Urostomy was the least of my problems, other than trying to figure out the correct system to stop leaks.
Colostomy surgery left a big hole to the right of the stoma area and I left the hospital after 17 days with a "drainage" tube attached. Now, that was a real "pain in the ass," so to speak. I had to sit on a pillow and at an angle on the plane. If I could have stood the whole way home? I would have.

The leg bag over the past 6 years has been fantastic for my travels!! Even on occasion when I was at someone's house or a motel for 1 night? I used the leg bag as my night drainage system...Obviously, if I vacationed somewhere very hot, I wore shorts and just emptied whenever I got near a bathroom or a 'big tree'!!!

Highlander15
Feb 01, 2012 12:34 am

Hello there, you are a real champion. How did you get hooked up with Anderson, was it your doctor? I heard they had a unit in Orlando, was it through that? I had an evaluation in NY for colostomy in addition to urostomy, but the GI did not think it was quite bad enough. I have lost my rectum and sigmoid colon, not to cancer but to radiation damage. I have a colo-anal anastomosis which is a bit of work to keep continent, but the doc said colostomy needs maintenance too, so it is fifty-fifty. I did have a colostomy for about six years in the past due to perforation, again due to radiation. It was okay. But I will be glad just to have one ostomy for now. The doctor in NY had written papers on a fistula muscle flap repair and I was hoping he could mend my bladder without urostomy, but no, he does not think he will be successful. He is offering only the urostomy. I lived in San Antonio for a year or so and that is how I ended up at Anderson. There was a specialist there at the time, Rutlidge, I think he will be retired by now. Isn't it just great to speak freely on these problems? I can't to my friends or even family as it makes them fearful. Of course I can tell my cat, she is very sympathetic, ha ha.



Meg
Past Member
Feb 01, 2012 2:36 pm
Good morning, Meg;

Got hooked up with MD Anderson from another urologist, not my regular guy at the time. He just wanted to try and put together his own team of surgeons and plastic surgeon guys and give it a "try"....I wish I had gone to MD Anderson for my prostate cancer. They probably would have saved some important veins, lessened the radiation, and would have done a better overall job..
Yes, there is an MD Anderson Cancer Hospital here in Orlando. I went to them for my chemo back in 2005 prior to going to Houston for the surgeries and after coming back from Houston, my care was given over to the oncologist at MD Anderson here.
I once again had chemo from Aug. - Dec. here and then had this new very powerful, direct radiation treatment called "SBRT"...also @ MD Anderson here...This past treatment is for Cancer #4...Seems the bladder cancer even after removal, etc., traveled into my lungs!!!!!
Good thing about Houston: It is a teaching hospital also, so lots of doctors always around to help with anything and without having to wait 24-48 hours to see them. Bad thing about Houston: It is a teaching hospital and you get 6 or more visits from students who are learning..So they all come in a group to see and inspect what has and or is being done..In my case, the plastic surgeon sealed up my rectum with a "Flower Leaf" design piece of skin from another part of me.
Every student HAD TO INSPECT my rectum!!!! Man, I wish I could have charged....
Highlander15
Feb 02, 2012 1:34 am

You are a real trooper, Flower Leaf Design...huh..now that is a picture. Yes, Anderson is world famous for good reason, what a place. I may end up there myself. I am still shopping. Also, the CT scan has picked up an 8cm mass but I do believe that is an old war wound. Aye aye, aye, life is really something, isn't it? Meg

Past Member
Feb 02, 2012 3:56 am

Meg, I go for my first CT since the SBRT radiation, on the 13th of this month. Not expecting too much as I have been told things may not look better until after the 2nd or 3rd CT????

Meanwhile, I am enjoying being off chemo and the radiation...

Highlander15
Feb 02, 2012 2:15 pm
Curious! How far apart are your CTs going to be? Yes, being off treatment is sheer heaven, you really experience joy and freedom. We really experience the full spectrum of life's emotions, don't we? From the pits to sheer joy, Joie de vivre as the French say. It is quite the experience! Do you go to the parks ever in Orlando? Universal, Disney, etc.? I have lived here twenty years and have never been!

I am Scottish. Here is part of a poem from Robert Burns - my own philosophy.

So catch the moments as they fly
And use them as you ought
For believe me, happiness is shy
And comes not ay when sought.
Past Member
Feb 02, 2012 5:17 pm

My CT's are scheduled for every 2 months for the next 6 months, then hopefully quarterly or semi-annually????

I am a "Tour Host/Guide", or "Concierge", for HS performing groups that come to Central Florida.
This is seasonal from Dec - June.. AND I pick and choose which and when I will take the group.
So, I rarely do the theme parks if I don't have to..Even with the performing groups that perform in the parks? I get them in, ready for performance, hand over to Disney or Universal personnel, wait for them to finish and get them back to the hotel or into the park..And I go home...

mooza
Feb 04, 2012 2:14 am

Hey, I'm not in the USA and they still get rid of you, but not if you're still unwell... If I had to pay, they would keep you in longer, but it's expensive for private health cover. I would have had my operation within 2 weeks, but pre-existing conditions mean I would have to wait 1 year if I did get insurance. So either way, I will have to wait my turn. Grrrrrrrrrrr. Category 2 means a 90-day waiting period, which these days means who the hell knows? Too much strain on our public hospitals now. Nurses have been on strike and the government is playing with our lives. NOT HAPPY... I'm getting ready to hassle my surgeon by Feb 10th. My 90 days are nearly here and it looks like I'm not getting further. Arggggggggggggg.