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Living with a Neobladder, please share your story.
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Four months after surgery, my experience with the Neobladder has been extremely positive. First month after surgery you are with a bag, so I can compare – Neobladder is so much better – now I look and feel completely normal, as if nothing happened. The main concern with a neobladder is continence; I was in full control during the day in about a week. I am a light sleeper, so whenever I wake up at night (which can be 5-6 times), I just go to the bathroom to play it safe. At least in my case, the neobladder is all positives with no negatives.
While I was warned before the surgery that incontinence can last for many months, the first visit with the WOCN department at MD Anderson (Wound Ostomy Continence Nurses) the story sounded very different: they said first week hold for 2 hours in the day and 3 at night, the following week hold for 3 hours in the day and 4 at night, and within a month they expected me to have full control. I am in no position to know what is “normal”, but I suspect that for the majority of us, incontinence is overcome (with a few accidents here and there) in a matter of a few months. Again, while I am not expert, it seems to me the problem is similar to when just the prostate is removed, and no one suggests an external bag following prostate removal.
While everyone is different, based on my experience I highly recommend having a neobladder, MD Anderson, and Dr. Kamat
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Hi nacras52, thank you for sharing. It’s been six and a half months now and I do the kegles everyday a few times a day. Still the more active I am the more I leak, so I work through it and deal with it. I’m hoping to start playing golf again now that the weather is getting better, and doing a lot of walking. How long before you saw improvement? It’s really good to know your doing well, thank God. It’s great to be alive. Stay well and thanks again.
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I also am living with a neobladder after having a radical cystectomy 8 and a half years ago. They told me at the time that if I did kegal exercises a few times a week that I would be able to at least help control my incontenance. I am finding that by staying very active playing sports and exercising that I have a very small amount of leakage. I too thank my surgeon who has been there for me all these years and I hope for many more. I hope your incontenance
improves. -
Hi I was diagnosed with stage 2 bladder cancer in 2009 and had to have a cystectomy. I was given a Neo-bladder and told to do kegal exercises to help with incontinence. It has been 8 years and I do not have to wear anything for incontinence. Every once in a while I will have a small amount leak but very little. I think the kegal excersises really helped. I too thank God every day and am still very active playing competitive handball racquetball and all kinds of other sports. Keep yourself as active as you can it helps a lot
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Hello All, bear with me, I guess I just need to talk. We blew out the candle last night {1}. It has been a year since my diagnosis. And last weeks visit to the doctor was all good, no sings of any new cancer. So lookout world. Monday will be 6 months with my neobladder and my pal INCONTINENCE. I know, you told me, be patient. I am and I try to keep smiling. It’s just that I don’t see any improvement. I’m exercising every day and feeling stronger. There were a lot of complications right from the get go and I thank God every day I open my eyes. I look forward to a long happy life with family and friends, spending my pension and social security. HAPPY EASTER / HAPPY PASSOVER GOD BLESS AND GOD BLESS OUR DOCTORS… Gary, if your out there, how are you doing?
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That’s true friend, but please don’t get hung up on not having to lose body parts to live! Yes a lot has changed for me and I’ve lost more than just my bladder and prostate, and I look like I laid on a hand grenade! But too see my wife’s face and the smiles of my children and grand children for a little while longer is all worth it. If I had to lose an arm or leg then I would do that too, we must continue to fight because it’s not just for us it’s for them too.
Diagnosed Sept 2015 noninvasive
1st turbt Oct 3 2015, 2nd turbt Nov 13 bladder,
Completed 6 BCG initial treatments 01/11/16 02/09/16 No Cancer!
08/09/16 Cyto shows red spots on bladder, TURBT prostate scheduled
09/12/16 Cancer is back Ta prostate ,T1 high grade bladder papillary uthelial.
Cancer has invaded muscle getting RC. -
What a horrible illness. Thank goodness there are paths to recovery. What I always tell people is that while bladder cancer is very treatable, often times that treatment requires the removal of body parts and that is so sad.
08/16/16 – TURBT – 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 doses total – last March, 2018). As of latest cysto, As of May 4, 2023 – cancer free! -
Hello my friend!
Wish things were different for you but we will make the best of it!
I went with the Indiana pouche, an internal bag made of colon and small intestine. I chose this because its pretty much safe as far as continence and release. Since you have to use a catheter to void. Originally i was going for the neobladder but the learning curve and possible catheterising my privates scared me off. At most i cath twice a nite depending on liquid intake 3 times during the day again depends on fluid intake. Im totally fine with my urostomy and would do it again if needed.
Diagnosed Sept 2015 noninvasive
1st turbt Oct 3 2015, 2nd turbt Nov 13 bladder,
Completed 6 BCG initial treatments 01/11/16 02/09/16 No Cancer!
08/09/16 Cyto shows red spots on bladder, TURBT prostate scheduled
09/12/16 Cancer is back Ta prostate ,T1 high grade bladder papillary uthelial.
Cancer has invaded muscle getting RC. -
I started this thread about 9 months ago, during this time allot has happened. I completed 12 treatments of chemo and underwent radical cystectomy in July 2017. I had a fabulous doctor and team in Germany, he insisted that I stay in the hospital for a minimum of 21 days after the surgery. He did not want to send me home with a catheter, his goal was to send me home totally tube free. The surgery was a success, the long hospital stay was rough. In the end, I was very thankful that the Dr insisted on the long stay and I was able to go home without any tubes. Recovery went very well as I was closely monitored throughout my stay. I had very little pain, the only discomfort was the 9 tubes sticking out of me and gas pains. All but 3 tubes were removed after 14 days, the other three were removed a few days later. The last few days in the hospital were called bladder training. Upon returning home I was incontinent for a couple of weeks and then I started having more control, within a month I was at 100 control during the day. Nighttime is a different story, it depends on how much liquid that I drink after 8 PM. If I watch what I drink and drain my bladder before going to bed, I have little to no issues. I also lost about 40 lbs in one month after I left the hospital. I am not fit or active, I was overweight, and my experience was mostly positive. The biggest problem I encountered was my digestive tract for a few months I was either constipated or had diarrhea. There was no in between, work and travelling were challenging. My diet had to be adjusted, the food I always enjoyed with no issues was now causing problems. After about 3 months, I figured out what I could eat and all returned to normal.
When I first started this thread I was scared and very concerned about the upcoming chemo treatments and surgery. Nine months later I am in great health and I am thankful I completed the surgery. The latest scan shows that there is no cancer anywhere in my body and I believe I am better for the experience. I can urinate standing up, I am 100% continent during the day, and life has returned to normal. I can do any activity I want, I am not restricted in any way. My faith has also grown through the ordeal.
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Thanks Gary, I think I made the right choice and everything post op went well. It has been a long and trying year. All the best to you and thank you for your reply.
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Pete,
I am over 9 months out from my surgery. I was in the same boat as you are now when I was 5 months months out. I only recently started having good control during the day. I am able to walk, run, sit, stand and exercise. I have very little leakage. At night I wake up every four hours and drain my neobladder. There are nights when my waking up and my neobladder are not in sinc but it goes with the territory.My best advise is to keep doing the kegels they really do help. I know the aggravation of it but I can assure you it will come it just takes time. I still feel that getting the neobladder was the smart way to go. Best of Luck, Pete.
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so i’m 5 months out of surgery. i feel good and all went well, or according to plan. BUT the incontinence is making me crazy. i do the kegels every day. if i just set around and drain every hour, i’m ok. if i wait any longer it just leaks out. if i walk or move around, standing, i have no control. does anyone have any advice? thanks. and when i fall asleep forget about it…
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I am now 5 months out of surgery. You can read the specifics of my situation below in my longer post. I am very happy with the decision I made regarding getting the Neobladder versus an alternative. I am a very active 56 year old who works out regularly and spends most of his time outdoors skiing, scuba diving, backpacking etc. First thing you should know that the Neobladder is “work”. I have had no complications which many others have mentioned on this forum which I attribute to finding the best facility to do the surgery (USC Keck) and being in good shape before and after surgery. I also think keeping very very hydrated helps especially with mucus plugging issues. I drink almost nothing but water and almost a gallon a day. Getting the feel for when it is full and dealing with continence issues is very difficult. I am 100% continent during the day. After my tubes were removed I was about 95% continent at night. Things have changed and I am now NOT continent at night. I have no problem during the day telling when I need to empty just like a normal bladder. The feeling of fullness is just in a different location. Emptying it completely just takes practice getting used to which muscles to push with. I can urinate standing up but find I empty better sitting down. Very depressing wetting the bed and waking up in a pool of urine lying on the semi absorbent sheet at night. I have tried the condom catheters and wearing both disposable and washable “diapers”. None are comfortable after years of sleeping with nothing on. Many people have told me that during the first year things are constantly changing and you have your good days and bad days. That is definitely true. Another major issue is the removal of part of your intestine to make the Neobladder. It takes months for the digestive tract to begin operating normally again. Be prepared for constipation issues. For me, the stomach issues were actually worse than dealing with any Neobladder specific problems. So, bottom line is that I would definitely make the same Neobladder decision again especially if I was your age. At 5 months after the surgery my only remaining problem is my nighttime incontinence which I hope to get under control. Besides that, the Neobladder to me functions almost like my old bladder and I am cancer free!
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I’m 29 years old and I have been diagnosed with bladder cancer I have gone through chemo and now waiting on the surgery but I haven’t decided if I want to go with the neobladder or the bag. Can someone help me with some facts bout them both please and thank you
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You want a surgeon that has done this operation many times. This is a real specialty. I was fortunate in that my insurance, Ventura County Health Care, has some kind of association with UCLA. The Clark Urology center at UCLA is ranked #3 in the country for urology related operations. On the day before Thanksgiving in 2016 I had a piece of tumor removed from my bladder because I was peeing blood. It turned out to be an aggressive stage 3 tumor that had penetrated the muscle wall of the bladder. The Urologist who did the operation recommended that I have a radical cystectomy performed laparoscopically. Ventura County Medical Center does not do this operation, and they referred me to UCLA.
I had six weeks of pre-operative chemo, which I weathered quite well. My operation was on March 31st. They removed my bladder, prostate and surrounding lymph nodes. and made a neo-bladder with a piece of intestine. The following pathology report indicated they got all of the cancer. I was in the hospital at UCLA for a week and I was very impressed with the level of care. I only experienced minor pain, which is amazing, considering what they had done. I was home for about a week, when I felt very week. Home health care came to my house immediately, measured my blood pressure at 60/30, and sent me to the local hospital. I had acute renal failure – my kidneys stopped working. They put a drain in my abdomen and drained about 2 quarts of fluid – I am not kidding.
I went back home after about a week. I was very feeble for a couple of weeks, and that was a life changing experience. Old people who do not stay fit become feeble like this. They usually fall and suffer greatly from it. I swore I would stay fit from now on.
During my recovery, I lost 45 pounds. I had zero appetite and food hurt going down my trachea. I think it was because I was intubated for over eight hours during the neobladder surgery.
It is now four months since my surgery. I am 6’2″, and went from 230 pounds to 180 pounds. My blood sugar dropped to where I am no longer diabetic. My blood pressure, with only Atenolol, a mild blood pressure medication, stays close to 120/80. I no longer have Sleep Apnea. My appetite is back 100%, but I eat to stay in the 180 pound range. As far as my commitment to stay fit, I have a workout on DVD that I use every day. I take a Pilates class twice a week. An I take my doggies to an off-leash park every day and walk four laps around the perimeter. I am in much better shape than before the operation. I am in physical therapy for incontinence. During the day, as long as I void every two hours or so, I stay fairly dry. Night is a different story. I tried getting up every two hours but this made me a zombie during the day. So now I get up every four hours. I often wake up with Depends soaked with five pound of urine, but I put absorbent pads with waterproof backings on my bed. I simply throw them out. The incontinence is a pain in the butt but it is not serious. I am grateful they removed all the Cancer.
My advice to anyone who is going to undergo this surgery is get in as good a shape as possible before the operation. No matter how far you have to travel, go to a surgeon that has done this surgery laparoscopically many times. And be patient with yourself during recovery. It takes quite a while, but you do get back to where you can do normal everyday activities again.
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