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Hello everyone, I apologize for being off the grid for a few weeks. I had my cystectomy/neo bladder surgery on March 31st and was finally discharged April 17th. I have to say, that was an unpleasant experience. That being said, I’m happy to be alive and cancer free!!! Yesterday, Tuesday, I had to go back for a cystoscope to remove the JP tube and the neo stent that were being stubborn and wouldn’t come out pre-discharge. The doctor also removed the catheter, so now all I have is a nephrostomy tube in my right kidney (I only have the rt kidney). Tomorrow I will see my urologist, he will be clamping the nephrostomy tube, so then it’s all up to the neo bladder. I’m both nervous and excited. What I’m not looking forward to is the incontinence. I’m 46 yrs old, not quite ready for that milestone. This whole process has made me feel like a new born, my body having to re-learn how to process and eliminate all waste. I welcome any tips on how to avoid/or prepare for unexpected voiding.
Before I go, I would like to thank everyone in my Bladder Cancer family who has been part of my journey, for your kind words and encouragement.Hi Rhonda-Lee
Have no experiences to share as I still have my bladder. Just wanted to wish you all the best going forward.
Hugs,
JackCongrats Rhonda-Lee for reaching this point, and for being cancer free. I know it has been a long journey to get to this point. But now the focus can be on recovery, getting used to your new normal and on with life. I had an RC/Neo in June 2013, and remember being so glad to be post surgery and cancer free. Happy to say that all is well so far. If it gives you any hope, I have not had too much trouble with continence, either day or night, except in those first few weeks. Actually my problem is rather the opposite – retention. But one thing I did do was to visit a physio that specializes in pelvic health (there is one on Hespeler Rd here in Cambridge). Really helpful, especially as a man with little knowledge of that area! The recovery WILL take time. I went back to work 3 months post surgery, and needed all that time to gain my strength and endurance back. I also needed that time to train my neo bladder to go for 3 hours or more. So keep walking, be patient, journal your progress, and stay positive, as I see you already are. I don’t wear any protection when I go out, or at night. I usually carry a little just in case bag with me if I am going to be farther than a half hour from home, with a Depends, a change of underwear and pants, and a catheter and gel. Have hardly ever had to use it, but it is with me, and gives me confidence to be away from home. Hang in there. A wise friend on this site told me to measure my progress week to week and not day to day, as there will be the odd off day ahead. Hang in there
Gord
Rhonda !!!! It’s done ! Yeah for you … For me that was a relief. I am a 52 year old female and had no issues with leakage at all and I had surgery in September . In the event you have issues beyond preliminary Recovery I just read a great thread by a gentleman from Cambridge who had awesome tips.
The surgery itself and the recovery for me was really challenging particularly the routine for maintenance and bladder expansion etc I am a sleeper. I was concerned I wouldn’t be able to handle the sleeplessness versus the other 🙂 All jokes aside the surgery , in my opinion is nothing short of a miracle . For medicine to be so advanced and provide us with an opportunity for a Neo is incredible . I am cheering for you and this phase of your recovery. It was worth every single measurement 🙂 for me even if it was at 3:00 a.m !
Xo
PS. Document your output and you can use this as your progress sheet in terms of your patterns etc…. It is a good barometer ….
Congrats on your start to a good recovery Rhonda-Lee! I’ve avoided the bladder removal part so I can’t offer any tips but will say there are lots of experienced folk here that will help. Keep us posted on your progress. All the best. ((((HUGS))))
Again, thank you all for your advice! It turned out that my urologist wasn’t quite ready to clamp the nephrostomy last week. Today we did it. In preparation, I have set an hourly alarm to remind me to go to the bathroom. So far, I’m dribbling/leaking every time I either sit stand up or even if I’m leaning against the counter and stood up. Nothing happens when I sit on the toilet! I know it’s only the first day, and I shouldn’t be so hard on myself, I just wasn’t prepared for this part.
On a positive note, I walked around my block today, by myself. It felt good. Of course I’m pretty sure my neo emptied the entire way. Never thought I would ever be thankful for a diaper, which by the way, I have instructed my family to refer to them as ” the pants”. On that note, I’m no longer clipping grocery coupons, only incontinent product coupons lol. In hind sight, I wish that I had invested in said products years ago; or stocked up on them : )P.S. This may sound daft, but, how does one measure output?
Not a daft question at all! When I was in the hospital they had a container that fit on the toilet seat, that had measurements on the side, up to 1 litre. My wife and I called it my “cowboy hat” due to its shape (upside down). I think you can buy them, or something similar at a health supplies store, like Shoppers Home Healthcare. A couple of phone calls and you can probably find one, or ask your home care nurse if you can get one through them. I just put it on the toilet every time I went and noted the results in a little journal I kept. Measuring and timing my output, and noting it was good for me to do, as I was able to measure my progress, see if I was retaining, or drinking enough and so on. Hope this helps,
GordI agree with Gord. I too, think that there are products you can buy for this. Failing that maybe just use an old measuring cup and hold it under you when you go. There is a product they use on little kids to collect urine samples – I don’t know what it’s called but it’s like a little sac with a sticky rim that you clamp over the genital area. I don’t know if they have adult ones but if they do you could maybe use them for the beginning especially if you are really dribbling a lot and it may be more difficult to get an accurate reading. Maybe that and the measuring cup when you go will help give you an idea of your output. Best wishes on a speedy recovery.
Hi Rhonda-Lee!
Welcome home!
My husband had his neo bladder surgery 4 years ago and currently is well and doing fine.
On average, it can take more than a year to gradually stretch the neo bladder to its top capacity of approximately 500cc of urine. (This is the average capacity of the original bladder). Hence the dribbles and leaks in the beginning, as it is very small. My husband started with 10 minute intervals (keeping a journal in the bathroom), tracking amounts and timing. He was able to see progress happening, even when he did not feel that it was. By 3 months, he was continent 90%+ during the day.Techniques to try to empty the neo….it is not a smooth ball as is the original bladder. The neo has the nooks and crannies of the small intestine. Changing positions, leaning forward while on the toilet, waiting a moment, then repeat, using the muscles that are used to eliminate bowels; applying gentle pressure to the lower abdomen…you’ll soon develop a routine that works best for you. Patience for him was the toughest!
This is major bowel surgery as well…the small intestine is healing too! To keep stools soft and decrease the need for any straining, I made meals that were easy to digest…decreasing the work that bowels need to do. (Soups, stews, pureed)
The neo bladder is a piece of the small intestine and will continue to produce mucus…Drinking lots of fluids helps to keep the mucus thin and easier to pass out. Plus, kidneys are happier too, by being flushed.
If you have a Walmart close by, ours delivers, so we order Depends and Guards for home delivery. From Shoppers Home Health, we purchased washable bed protectors (3 ft x 3ft). Comfortable to sleep on, and no need to change sheets, when their is a night time leak. I found one a similar colour to our couch, so if he drifts into a deep sleep…no worries! The pads travel with us…great to be able to vacation, cruise, accept cottage invites!
Enjoy being home and on the road to recovery!
Kind regards,
IevaHi Leva, thank you for all of the info. This is definitely a learning process. I purchased a watch that has 12 alarms that can be set which will be a helpful reminder. I’m wondering however, if my incontinence is more extreme because my “plumbing” is different? I’m fine when I’m sitting, when I stand up, the flood gate is open and I cannot stop it no matter what I do. I have yet to graduate to pads, for now I must stick to the adult pull ups. Not the worst thing in the world.
I have yet to make a trip to Shoppers Home Health, which I intend to do soon.I hope your husband is doing well, best wishes,
Hi Rhonda-Lee,
Some of the possible reasons for the floods:
Our core muscles are working for us when we change positions, like standing up. This puts pressure on the “baby” neo bladder. If you use your arms to help push up into standing, this can decrease the amount of core muscle work, and help in decreasing the flood. As the neo bladder trains, it does get better!If you have given birth, pelvic floor muscles are not always the strongest. Pelvic floor muscles help decrease floods. Keel exercises are specific exercises for the pelvic floor muscles. Some physiotherapists have specialized in pelvic floor rehabilitation.
Bladder surgery: there are 2 sphincter muscles (they squeeze the ureter shut), one inside the bladder, one outside just below the pelvic floor muscles. My understanding is that in most cases, the internal sphincter is removed, and it is the one that worked automatically, keeping the bladder continent. The external sphincter needs us to think about it….part of the neo bladder training. So, during neo bladder training there is potential for lots of flooding.
Our original bladder “told” us when it was full, and we made decisions whether to empty, or wait a bit longer. The neo bladder is an intestine, so, it cannot tell us when it is full. And, as it is tiny in the beginning (post op), minus a sphincter, no way to tell us anything = floods. Plus, you are post op after major surgery!!! Time to re-coup.
ieva
Call Shopper’s and see if they will put together what you need and ship it to you.
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