UOAA Discussion Board

Uroman the internal one is so much easier! I think you will be happy that you made the switch- at least most people are.

Thank you Squid. I have had such an easy time with the incontinent. My mind keeps going and going over different situations I have been in and or could be in. Then I think which way would be easier. So I'm starting to think that i might be crazy. Not crazy to make the switch but just plain crazy. So if it does get easier that will be GREAT! Well I'm off to go eat my beef broth lunch.

Any one want some??

Hello everyone,

I have been home now for a few days. Still sore but getting better every day. The first week after surgery was a living nightmare. But now that has passed and things are getting easier. It is nice being able to eat what i want. After all that liquid diet and not eathing my stomach gets full quick. Lossing a few pounds would not be bad for me. Once again thanks to everyone who answered all my questions before surgery.

Uroman

Welcome back! Glad you are on the mend and once you get your appetite back you'll have to watch it so you don't gain back what you lost. Just take things slow as recovery can take awhile.

Hello again everyone.

I'm about 1 1/2 months post op. Now I have a few more questions.

1) sleeping with out a night bag and having trouble with leaking while I'm sleeping. I try to get up between 2 and 2.5 hrs to drain. When I do I usually get 200 - 300 cc of output. Sometimes I'll get close to 400 if I go a little longer. one night I got 500 cc but I do not remember the time between cathing. My doc gave me a script for a drug to help stop bladder contractions. This seems to be helping. By the way I sleep on my side which I was told does not help. has anyone gone through this. Any ideas besides not sleeping. .

2) My bladder produces a lot of mucus. Even after I flush it out, with in 3-4 hours it seams to have produced a significant amount. When cathing I can watch "chuncks or globs" of this flow throught the tube. Then after emptying most of the bladder it clogs up my cath. I have to pull it out let the mucus flow through and re-cath. My doc says at this time post op he is not supprised with this happening. Ideas or experiences dealing with this??

thanks to all.
uroman

Hi Uroman - Glad you're brave and trying to go the night w/o a bag. I'm not that brave and still want to sleep, so... not much help there.

On the mucus, "they" say that there will always be some mucus produced because of the parts used to make the pouch. I have been "bad" about irrigating and currently have a mucus plug I'm battling. (Doc says to irrigate A LOT) I have found that drinking more water does thin out the mucus and the cath doesn't plug as often.

Good Luck!

Lynda Kay

Hello Uroman:

I hope you are well. Congrats on the surgery. Sounds like you are doing pretty good.

I have had my continent urostomy for just over two years. I originally had a neo bladder - My bladder and a few other parts were removed. the neo bladder was a disaster for me anyway, I believe it is better for men - live and learn.
So hence the need for the diversion.

I love my continent diversion. Rest assured as time goes on and your pouch is trained to hold more you will enjoy the freedom and comfort. I know at first it was brutal, emptying every 2 hours, no sleep etc. But now that is just another bad memory. I empty aprox. every 4 hours, at night I usually get up at least once, depending on how late I sleep. it is actually good being able to time when you have to pee, as long as I stop forgetting every once in awhile and have a bit of a leaking situation. I have never had a night time bag or even been offered one. I can see where that could be handy.

I always seem to have mucous when I empty, some say lots of water and irragating help with that. I am good at the water but not so good at the irrigating. I have had 2 problems so far. I recently had an abcess around my stoma it was very painful and swollen for a couple of weeks. After 3 different rounds of antibiotics it drained on its own and is back to normal. I am thinking that proper wahing and cleaning catheters can avoid this.

The other thing is I have stones in my pouch. They are going to remove those Dec. 23rd, not too worried about that they will break them up and everything is done through the stoma. After some proper meds I am sure I will be quite comfortable.

I use to have chronic urinary tract infections, I don't think I have one since this surgery. So I do not have to take daily antibiotics anymore which is nice.

I am glad you are healing and just remember all good things take time, once you feel 100% health wise you won't regret this decision.

Wishing you the best
Debi

Uroman,
Glad to hear things are going pretty well. I am approaching 2 years since my surgery. This year has been more difficult that the first as I have been in the hospital 4 times with severe kidney/blood infections. I just this week finished a 2 1/2 month course of 2 different antibiotics. We shall see what happens. I have usually been getting symptoms of a new infection within a week of stopping the antibiotics.

I am still having a large amount of mucus, even to the point of clogging up the cath, almost all of the time. The docs do not seem concerned. I have been told that this should drop off over the years, but nothing to be worried about. I had a bad time of leakage for about the first 6 months, and then things tightened up. I can still get a squirter every now and then, and it is totally my fault for not monitoring my fluid intake vs frequency of cathing. Hope that helps a little.

Now, I have a question for anyone, I have had for about a year, some strange looking mucus that appears almost rice like. small, dark colored, and large amounts. it is not creamy or stringy at all. I hope someone else has seen such a thing. Any thoughts?

Well I think things are regressing right now. I have to cath about every hour or else. I am back to the night bag so I can get a full night of dry sleep. There seems to be a lot of mucus but I hear the same as everyone else, "its normal at this time post op." I will need to go have a few test done to check the new bladder.
Hopefully it will be done sooner rather than later. He, my doc, has not said back to the OR yet. He did mention Imodium and a laxetive to counter affect the constipation. So that is where I am right now. hope everyone here in the US had a nice thanksgiving holiday.

Uroman

I am sorry you are having problems. Maybe you have an infection of some sort. I forget how long ago your surgery was, can seem to get back there now.

Do you have to cath every 2 hours because you are leaking or you feel like you have to?

I know when I had my neo bladder and chronic infections, they told me it made my "bladder" hyper active. Seeing as my "pouch is also made of the old neo and some other bowel or something maybe that is what is happening.

I would get to the Dr. as soon as you can, do not suffer needlessly. I used to take an antibiotic every day. Now I have them and if I feel like something is going on I can take them for a couple of days.

I hope things resolve themselves I well remember that exhausted frustated feeling..

Take care

Debi

Uroman, I was thinking of you today as I was cathing - at work - 6.5 years after my bladder cancer surgery immediately gave the "continent" stoma.

Just thought I would pass along my story, if I haven't already. But first, I agree with Spunky Lady - tell your doctor.

At just about the stage that you are at, I was getting ready to come home from the Nursing Home I had been in since 16 days after my surgery. I was still on an every two hour during the day cathing schedule, but would suddenly have a massive leak, before the two hours had passed. During that first year, I felt that anxiety would shorten the time I went without "leaking" [swollen insides which were tightened by the tension I was feeling] - can't remember how long I went at night--- I am not diagnosing your problem, just trying to let you know that you are not alone with problems (and your surgery was not very long ago). (1) Let your doctor and/or ET nurse know your problems (2) know that you are not alone in the frustrations which occur during the first year or two.

Now my problem is remembering to watch the clock and cath regularly - today I had gone 6.5 hours forgetting to cath after 4 hours, so I "sprung a leak."

Hoping that tings get better for you.

Susan

No I don't think I'm alone here with this. You all have been great with the support that each of you have given.

My surgery was Sept 21st. I was out of the hospital 9 day later. Then made the gradual process from leg bag to cathing and sleeping with a drainage bag. then onto sleeping with out a drainage bag. Things seamed to be going ok. Had leakage every now and then but I expected that to happen. Then recently I could go barely 1 hour in the day with out leaking. If I went 2 hours then I would go empty now matter what. Sleeping at night was a big issue. I reverted back to the drainage bag and even that would leak every couple of nights. Tomorrow I will be having a vcug (xray of the bladder.) On Tuesday I will have to have a parital urodynamics test done. I understand that test will be able to tell at what pressure I start to leak. Hopefully we find some useful information with these test. Thursday I am off to Disney so I do not want to be worrying about these problems while I'm there.

Until next time,
Uroman

Hello anyone and everyone,

finally after my 3rd surgery things are finally working GREAT!! NO leakage since surgery a few weeks ago. I am now very happy that I made the switch. The pain, frustration, leaking, and best of all bag wearing are now behind me.

My advice to anyone thinking about having this procedure done is to DO IT!

thanks everyone,
Uroman

I am thrilled that things finally worked out for you. Even though I still leak sometimes I love my pouch and would only go back to wearing an external pouch of I had no other options or choices.

I've had a continent Urostomy for 12 years now. I have an Indiana Pouch and this is the first I have heard of this website. I wish I would have found these forums sooner.

I love my Pouch and have had no problems until recently. Trust me the problems I am having are not typical. I found out about 5 years after my surgery that I have
Marfans and Celiac disease. Both of those have actually caused the problems that are occuring.

You will have a little bit of leaking in the beginning, but as long as you set your watch and drain it on time you should be fine. I would also ask your doctor about
irrigation. I was not told to irrigate every day until I went to Mayo. Now that I am doing that It has helped tremendously with mucous build up and infection prevention.
I would recommend you resist the temptation to let the bladder go to long before draining. You can actually stretch the bladder and cause it to become "floppy". Other than
that I have loved my pouch and would do the surgery all over again if asked. Good luck.