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Hi,
I am 2 1/2 weeks post of for RC and neobladder with full hysterectomy. I am 51. Surgery went well and my foley catheter came out 4 days ago. I have been completely incontinent since the catheter came out. I have zero control or feeling. I can go and sit on the toilet and nothing and 5 minutes later it will all leak out. I don’t know what’s going on. I went to the clinic last week and they said that I have mucus build up and I now have to self-catheterize 3x a day. I was not expecting this at all. I am doing kegels all day long and still no change.
Has anyone had this experience? Any words of advice or encouragement? Am I expecting too much too soon?
Very worried and frustrated.
Karen
Hi Kjc18,
I still have a bladder so I cannot share from my own experience. But, first of all, it is good that pee is coming out. A very well know Canadian urologist who does about 30-40 neobladder surgery told me that about 3% of neobladder patients become hyper-continent. In this case, the patient has to catheterize 6-7 times a day to eliminate urine from the neobladder. This is not the case for you. The mucus is natural. It is natural metabolism of intestine which the urologist used it to create the neobladder. A few neobladder patients told me that even after a few years after the surgery, the mucus will come out first, which is followed by urine whenever they pee. One of new neobladder patient has trained himself initially not by feeling some kind of pressure buy rather by clocking. In his case, he goes to the bathroom every 3 hours while he is awake and wakes up every 2.5 hrs during his sleep. He wants to be 100 continent 24 hrs/day. Some uses a condom catheter during sleep because they have to work and they want to sleep through the night. I am sure those who have neobladder will be able to give you their experience. I think kegels is good, but if you do that all day long, how do you train to sense of some pressure from the neobladder when it is becoming full? I have listed the link below and some is talking about neobladder and incontinence.
https://www.inspire.com/search/?query=neobladder%20incontinence&g=&sec=All&p=1&r=20000
Hi kjc
I have a neobladder, but I understand women and men can have different experiences with a neobladder. Hopefully the situation you have is temporary. One thing that my urologist did was a post-op cystoscopy ( I can’t remember how long after the surgery but it wasn’t right away). He put the camera at the sphincter in the pelvic floor and asked me to open and close. I could see it operate. Perhaps you could get your doctor to do the same if things don’t improve soon so you know if it is working as expected.
Another thought is that if you are doing kegels all day long the muscles in your pelvic floor might just be exhausted and can’t keep the sphincter closed. Give them a rest and see if things improve. Just do the kegels a couple of times a day. Ten reps and hold for 10 seconds.
Good luck
SjayOne more thought.
I don’t know who you talked to at the clinic, but I would recommend you ask to talk to an ostomy nurse. They have loads of practical experience. In my case it was an ostomy nurse who removed my foley and gave me all my instructions on what to do next. I also consulted one when deciding between RC and ID.Sjay
Hi Karen,
In two days it will be one year since my RC and neobladder. As Sjay mentioned, being male my experience may be different. They left my Foley catheter in for five weeks. Following removal, I had to self catheterize 2-3 times daily for a couple of weeks, then reduced to once a day for the next two. After that it was every other or third day for a month. Then weekly, and after three months perhaps monthly. It has been at least two months since I last self catheterized. I still have considerable amount of mucus at times, and some almost every time.
Day time continence came reasonably quickly, but I still need to set my timer for every three hours at night. Sometimes that’s too long. I wear Depends all of the time as do have minor leakage occasionally. Like yourself I do not feel a sensation of having to pee. However I do start to feel lower back pain when my bladder gets full.
Sjay made a good point about seeing an ostomy nurse. They have a wealth of experience and knowledge.
All the best Karen. Things will improve….Don
Hello Kjc18,
I just posted Pat’s story under Inspirational Survivor Stories that you may want to read. Pat is a woman who has a neobladder and she describes her journey with ‘Gladys’ – she named her neobladder.
As Donald 123 indicated, things will get better and Pat is proof of that. Here is the link https://forums.bladdercancercanada.org/forums/topic/pats-story/ you might find is helpful and reassuring.
My best,
Hi Karen:
I don’t have a neobladder but I know of people that do and they mentioned that it is important to make sure that you drink enough water to help dilute the mucus build up. It seems that it really varies with people about when they obtain continence. I also heard that with having to have a decent fluid intake some plan when they will consume more based around when they know that they can be near a toilet. After a while you should get into a regime that is right for you. Pat’s story is a good one for women with a neo.
I second what the others have mentioned about consulting an ostomy nurse if you have not already done so. Best wishes for improvement in the future. ((((HUGS))))
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