Neobladder, 3 years on...

Hi all

There has been a lot of discussion about neobladders lately, and I just wanted to let you know how my husband, Richard, is doing.

He first had 3 months of chemotherapy, cisplatin and gemcitabine, then had his surgery in March 06, almost 3 years ago.

Night time incontinence was an issue in the beginning, but he has used Desmopressin (Desmotabs) on and off for some time. It is a medication which is used especially in children who are persistant bedwetters. Apparently it slows down your kidneys at night. Also, he doesn't drink up to 3 hours before bed time. SO the problem has gradually lessened more and more as time has gone on. He wears Moliman pads at night which is a small pocket pad to collect any night-time dribbles!!

Having said all of this, he regularly does his kegel exercises, it's become something he does without even thinking about it now!

He used to catheterise daily, then weekly, now he does it once every two months, just for peace of mind (and also so that the yearly examination isn't so scarey)

In the beginning he went to the toilet every 1 and a half hours(!) at night but now he's up to 6 hours maximum. (This seems to be the maximum recommended time, so that the neobladder doesn't stretch too much, as it cannot retract like a real bladder)

Mucus-wise, he had a little less mucus over the first year, and now it has levelled off to a fairly steady amount.

The other problems associated with this surgery, such as impotence, also improved greatly since the first year. We were so disappointed that things had not improved a lot by the first anniversary, but the second year turned things around a lot, and nearing the end of the third year, things are looking really good.

His bowels took the biggest knock, and after his first 6 months were dogged by constipation, the diarrhea took over! The following 2 years brought irregular bouts of diarrhea, but Richard is not very good at watching what he eats anyway. Perhaps if he was a little more careful, or kept a food diary to take note of any trends, things might have improved a lot earlier. However, I am pleased to say that his bowels have seemed a lot improved over the last few months (YAY!)
If anyone has any questions, we have lost all squeamishness over the lasy 3 years, so FIRE AWAY!

All the best to you all,
Fran

By roadrunner
Posted January 24, 2009 at 1:50 pm
Report post

Fran,
Thanks for sharing,,it is nice to hear things are going well,,,it brings to mind all the talk after surgery, between me and my husband,, bowel movements ,how many,,and are they the right consistency to avoid a problem,,,next issue months later,,,intimacy,, will it return or not,,with the help of a specialist in urology who sees people after an r/c and are not responding we to are back to business....for such a young couple like yourselves I am glad to hear things are back to normal...we are 68 and 62,,some at our age just throw in the towel and forget about the intimacy issue,,,but of course I went for the custo,,I knew it would make him a new man after his r/c....and it did....8 months later,,,I am so happy for you and your family,,,its nice to hear the GOOD THINGS,,,and you have many,take care Ginger

By jj803
Posted January 25, 2009 at 5:28 pm
Report post

Fran,

Thanks for sharing your experience. I am 9 months post RC with neobladder and its good to hear that things continue to improve even as much as year after surgery. Thank you for your inspiration and best wishes for your future.

JJ

By fran1
Posted January 26, 2009 at 1:39 pm
Report post

Hi to both of you,

Richard's surgeon told us that it can take up to 3 years for nerve-endings and muscles to repair, so that kept our hopes up!!!

All the best
Fran

By Jemuna
Posted April 26, 2009 at 4:21 pm
Report post

So, bowel issues are not uncommon is what I am learning. Is it trial and error with everything? Or are some things better than others to consume? My husband is eating little amounts often but still gets bloated and has stomach pain especially in the evening. We have been home just three weeks now after his r.c. on March 17th. We seem to have the dehydration issue under control but it has been a struggle to get him to drink as well as eat. We're thinking maybe milk products are bothering him a bit which could be a problem since we are trying to fatten him up. Has anyone else experienced a problem with dairy products? ( We see the surgeon and the oncologist on May 4th.) Jane

By Jemuna
Posted April 26, 2009 at 4:22 pm
Report post

By Betsygirl
Posted April 27, 2009 at 9:38 am
Report post

Hi Fran, happy to hear your husband's neo-bladder is doing a good job for him. I am 4 years into mine and am just now having bowel problems with diarreha. Can you tell me what he has removed completely from his diet. That would help me. I was going to visit a gastrointestinal doc, but things are getting a bit better this week. I also in the last month have begin to have lots of pain from hemmroids which I have never had in my life. They are a "pain in the butt"....as anyone who has had them knows. The neo bladder seems to be doing well do far, but do seem to sense more pressure to go after only a short time. I can get through the night with no problems, getting up at least once and watching what I drink around bedtime. 3 hours is about my timing as well. Any suggestions will be most helpful. I hope you both continue to relax with this challenge in your lives and have fun!

By fran1
Posted April 27, 2009 at 2:01 pm
Report post

Hi Betsygirl

Richard has just been for a sigmoidoscopy, a type of lower bowel endoscopy, to see if there is anything to be concerned about with the diarrhea and hemmeroids - they looked for polyps.
No sign of anyhting to worry about. He will have a further appointment soon to dicuss other options for investigation. The diarrhea is on average 4 to 5 days a week. He has not changed his diet at all. Something to discuss with the GI consultant!

I do know a lady who had part of her bowel removed 20 years ago and has had regular diarrhea ever since. I think it may just be something to put up with. I guess at some point the vitamin B12 levels have to be supplemented.

Thanks for posting, it's comforting to know that it seems Richard's symptoms are fairly common.

Fran

By fran1
Posted October 22, 2009 at 7:19 am
Report post

Just a quick update...
Richard had another investigation - barium enema- which produced not sign of bowel obstruction, which they thought could be the cause.
He is now waiting to have another procudure which involves a camera down through his mouth as far as they can go, under general anaesthetic.
Their latest thoughts are that he has developed IBS or coeliac disease since his RC. They still have not suggest any dietary change, so I guess we'll just wait for the procedure.

I just wonder how well acquainted the bowel specialists are with the RC after-effects..... do I stick my nose in and email the doctors some of my internet findings, or will that just rile them?

Anyone one else having regular bouts of diarrhea a few years on?

All the best,
Fran

By balihigh
Posted October 22, 2009 at 8:01 am
Report post

Fran,
I have not had any bowel problems since my RC but I do know several people who have celiac disease and diarrhea is their problem. I have read that it is a very underdiagnosed disease. Having had bladder cancer we all hope that it the end of our medical problems but it seems we all have some issues besides the bladder cancer that keep popping up. I would pursue the other tests to find out what the problem is. I did have diarrhea BEFORE my surgery for over 3 months and was diagnosed with IBS. However, now I think it was actually either side effects from the BCG or stress or combo since I no longer have that problem.

Praying that you will find the answer soon.
Hugs,
Nancy

By Stevooo
Posted October 22, 2009 at 3:41 pm
Report post

thanks for sharing,i had surgery in 2005 to remove bladder and prostate replaced with neo-bladder,,tumor came back in my pelvic lymph nodes 6 mts.later had surgery again to remove then had 3mts of chemo,i have been cleaned since,still have c-scan every 6 mts.i still have problems controlling bowel movements and at night i am up every 2 hrs.cant controll myself...during the day i have to be near bathroom when i go out..tell me more about the childrens medicine you took to contol bowel movements do i need permission from my doctor i have so many questions about it,,,what is it called can you tell me more,,,thanks

By birdman
Posted October 22, 2009 at 6:39 pm
Report post

Dairy products seem to create more Mucus,he's also lucky he only has a little stomach pain,I have major blockages If I eat the wrong thing.Glad to hear no blockages for him.

By fran1
Posted October 23, 2009 at 3:54 am
Report post

Thanks for all of the replies.
Stevooo, the children's medicine was for urinary incontinence at night, not for bowels. It is called Desmopressin(DDAVP, Stimate, Minirin).

I am guessing that when so much intestine/bowel is removed, the delicate balance in the digestive system is disturbed, and some people end up developing IBS. Waiting to hear if that's the doctor's theory too!

Fran

Welcome to Inspire!

Explore topics in this discussion:

13 replies

Add to the discussion

Related links from BCAN

Group leaders

You