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Urinary frequency: – post-operative cystectomy
First of all, thanks for the help and support following my first message last month, just after my husband returned home after his cystectomy. Although I haven’t made any regular postings , we have found reading all the various postings on the site most informative and useful–thanks to everyone! We realize now how impatient and unrealistic we have been, expecting that he would recover to ‘normal’ health and energy levels within a couple of months. His consultant is very pleased with his progress, and when he explained in more detail the amount of small intestine {ileum?} which was removed to make the new bladder, we understood better why my husband has had so much bowel trouble since the operation. Apparently this will settle down with time, and we have been told that the ileum can even grow bigger again! He has found that his fitness level and health day by day is most affected by what his bowels are doing [or not doing!], and his consultant says that this is very common in the early days of recovery. He’s having probiotics regularly, and otherwise a good mixed diet.
Energy levels are still generally low, and he feels best in the mornings, needing a rest/sleep in the afternoons, and isn’t really up to doing much in the evenings. Its all very frustrating when we’ve both been used to living very full and busy lives, right up to the operation. He’s lucky in that there is little urinary incontinence, but he does seem to feel the urge to go to the toilet very frequently. Often he passes very little urine, but it can take a long time, and sometimes there is practically nothing. This seems to be worse at nights, when he will be getting up, somwtimes as frequently as every half-hour, which means he isn’t getting a good nights sleep, and excacerbates the tiredness during the day. If anyone has any suggestions to help with this, we’d be most grateful. We asked the consultant about self-catheterisation, but his opinion is that it is better to go ‘normally’ if you can, and he just suggested trying to resist the urge to go to the toilet very frequently during the night, saying that it is necessary to retrain the brain, as well as the new bladder! -
4 Replies
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I get about 6 or 7 now and am becoming a bit of an expert at going back to sleep after I waken to empty my bladder. funnily enough, about a month ago I seemed to have the nighttime continence under control more but now its gone back again to nighttime wetness. I think the changes that I’ve made in my daily life, even the small ones, have a profound effect on this. Now Ive started working I go to the loo more (probably to minimise the chances of an accident) and this has trained my brain back into bad habits at night. I think I need to get back to a 3 hour emptying schedule again. I also think I need to cut down on the coffee as this stimulates the kidneys too much. I think a cup a day should be my new limit.
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I’m not new to this. I had sergury just about 2 years ago and I’m still learning to deal with it. I was getting about 3 to 4 hours of sleep each night. I good during the day period but at night it’s a different story all together. I’ve come up with a pretty good solution at the present time though. I use a leg bag and a freedom cathiter, plus something to keep me asleep. Now I get about 7 to 8 hours of sleep.
I was also told to hold the fluid to strech the new bladder, which I did. It turned out that my bladder grew to large and I now have to self catherize every 4 to 5 hours. I also take an antibiotic once a day to keep the bacteria down. You might check this out with your doctor, it has improved my energy level also. I hope this might be of some help, I just thought I’d pass it along. -
Hi again Kathy
I had a version of what you are describing but perhaps not to quite the same degree. I think wendy is right about maybe getting a sleeping medication. The things that stopped me from sleeping was the unpleasantness of waking up all wet. I just kept waking up every time I dribbled. I still have quite sleepless nights (last night I awoke three times for example) but I think I may be getting used to it. I know me and your husband share the same hospital, Im assuming they gave him advice on waking up? It is important to get that thing stretched a bit; that will help with the continence. Also the pelvic floor exercises are crucial in the first months; I put a link to some in the Mens Section. Another thing I do now, and this sounds a bit gross (but not in the grand scheme!), is have a “potty” by the bed so at least I rarely fully wake up. I know when I was going to the bathroom it was harder to get back to sleep. And also, having the potty gives me a bit of extra confidence. Just something for your husband to bear in mind is not to be too distraught when it doesn’t seem like progress is being made (I know this is hard when you are so tired). The reason I say this is that my continence happened by degrees for quite a while and then “bang” all of a sudden I seemed fully continent (more or less). I hope and expect that this is what will happen for him. You are aware it’s early days and it really is. Though I know it can seem like the clock hands are painted on the clock face! You will get back to the life you had before.All the best
Tim
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Hi,
Sorry to hear about this complication, I don’t think I’ve heard it before, so can’t really offer any good advice. What about a tranquilizer or sleeping pill, then setting an alarm to void every 4-5 hrs? I can imagine it’s exhausting for your husband not being able to sleep. I think the surgeon may have a good point about re-learning what the feelings are, nerves have been messed with, many times nerves regenerate after surgery, but one thing is certain, nothing is the same.
Hopefully time will help heal this problem as it does with most…
Wendy
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