Continent diversion, anyone had it done?

[~*~Christine~*~]

Continent diversion is when the bladder and urethra are removed and replaced with a neo-bladder. Fluids are passed through a hole (stoma?) in or under the belly button, with a catheter.
Pic http://www.cancerhelp.co.uk/cancer_images/selfcath.gif

If anyone has had this done please post here or PM me, I'd like to ask some questions about it

Thanks :bunny:

[tigger_gal]

Hi Cristine, I never had this done and only know what it is by name.. I hope some one will read your post and know.. sorry I am not much help. sending you hugs.

[traceann]

Yeah, me neither I have no information on it, hope someone else chimes in!

Hugs!

[~*~Christine~*~]

thank you for the replies, guys. I have found some info on it and will definetly ask my uro about it when I see him

thanks again :=)

[Imustpee]

I am having that done on Dec 23rd at UCLA!!

[~*~Christine~*~]

Is it the same one with the neo-bladder or is it the one with the bag?

Good luck with the surgery anywho : )

[Imustpee]

Internal bag..

[DebbieD]

I have a ileo-conduit. I wear a Bag. The Urine drains into it and Just empty as I needto.It is also called a Urnary Diversion. I hada cecum-cystic-Plastic Bladder Made out of My Bowel 3 times. On My 4th revuosion They made out of my Transverse Colon.

You can also a search On Ursotomy! You will come up to a Dozend of Places that talk about Removing Bladders. You Might dind that Helpful.

Good Luck
DebbieD

[Kara29]

Here is my story:

http://www.ic-network.com/patientstories/kara.html

The photo is of my dad and I.


If you have any questions feel free to ask me.

klkreese@twcny.rr.com

Good Luck,

Kara :angel:

[~*~Christine~*~]

awww you and your dad look sweet :)

I read your other thread and you said they attached the neo-bladder to the urethra but it closes up on you, which is why I'm wonder if having the urethra removed will cause less problems in the future

[Kara29]

I'm one out of many many patients that this doctor did this surgery on. I happen to have a scar tissue problem anyway that is unrelated to the neobladder. So this may not happen to you at all. My doc has done many neobladders some dating back 10 or more years ago and all of his patients except for me are doing well, no scar tissue problems. :mad:

Many urologists create an ileal conduit after bladder removal. the disadvantage is that the conduit is incontinent, meaning that urine constantly drains into a permanent bag on the patient’s abdomen. However I was only 26, have not had my babies yet, and was not ready for this. Some disadvantages to this are Urinary reflux to the kidneys, kidney infections and ureter strictures are not uncommon with ileal conduits.

Internal continent reservoirs are pouches and outlets fashioned from various sections of gastrointestinal organs (usually bowel segments). A catheter is used to drain urine from the pouch through an abdominal stoma. This is an easy and painless process. Self-catheterization for pouch irrigation to prevent mucus plug formation is required. Some examples are the Kock, Indiana, Mainz, Miami, Studer, and Mitrofanoff Pouches. (For some reason my doc preferred the neobladder over this type of surgery)

They require more intensive postoperative care and have a higher risk of reoperation when compared with an ileal conduit. complications such as scarring, obstruction of the ureters, chronic urinary tract infections and problems with self-catheterization could possibly complicate recovery for both the continent reservoirs as well as the external conduit procedures.


It is both up to you and your surgeon which surgery is right for you and your body makeup. Not every surgery is right for each person. It depends on so many factors. It's best to keep educating yourself and keep asking questions as you go. All of the surgeries are risky and have the potential for complications of all sorts. It just can't be avoided with everyone. This is why most urologists won't perform any of these surgeries. :bonk:

For me, I found the best surgeon on the east coast and it was life or death in my case. I wanted my urethra out but he wanted to keep it in for his own reasons. Maybe after I get pregnant and have my kids, I will ask him if we have any other options.


If you have any questions please feel free to ask. That is why I am here! :)


Love and Hugs,

Kara :grouphug: :angel:

[Judith56]

I have had my internal pouch for 13 years. I have a small stoma (opening) on my stomach on the right side just above my pubic hair. I first had an ileal conduit where you wear an external pouch for 6 years, but because it had some problems I had mine converted to my internal pouch which I love! Feel free to ask me anything. Judith

[~*~Christine~*~]

thank you for the replies :)

ok, here are a few questions if either of you, or someone else, can answer them I'd be very grateful : )

1) Does the stoma stick out a lot, the ones for the neo-bladder not the bag (in the abdomen)?
2) Does it hurt to cath through a stoma for a long time?
3) Does the stoma ever "leak" fluids/urine?
4) During recovery, after surgery, how are you able to pass urine and fecal matter?
5) Does passing fecal matter cause a lot of pain, after the surgery?
6) Have your IC symptoms disappeared after having your bladder removed, have they returned?
7) When the urethra is removed, is the hole, on the genital area, stitched up/reconstructed?
8) How long is the recovery after surgery?
9) Do you have phantom pain?
10) Can you wear regular clothing with a stoma?
11) Do you have feeling in your neo-bladder?
12) How long are you, generally, kept in the hospital?
13) How long do you have to be cared for 24/7 when discharged from the hospital?

Kara, I did some research and, apparently, you can still have children (naturally) even with a stoma.
Oh, and do you always have to cath yourself, Kara, or can you void naturally most of the time?

Sorry for all the questions ;)
If you feel uncomfortable answering any of them, publicly here, you can PM them to me and I’ll keep it confidential
Thanks again!

[Kara29]

4) During recovery, after surgery, how are you able to pass urine and fecal matter?

I am not sure about fecal matter but as far as urine goes I had a suprapubic catheter for 8 weeks and a regular foley for 6 weeks.

5) Does passing fecal matter cause a lot of pain, after the surgery?

I could not pass gas or fecal matter for 2 weeks. The first few times were rough as far a being painful.

6) Have your IC symptoms disappeared after having your bladder removed, have they returned?

I get symptoms of IC but I don't have IC anymore. I get infections that feel like IC (but I still have my urethra and bladder neck) I also have IC like symptoms from some of the fertility drugs I am taking.

8) How long is the recovery after surgery?
It took me many months to recover.

9) Do you have phantom pain?
I don't have any phantom pain like I had with IC. Sometimes my infections are a bit painful but not like the pain of IC.

11) Do you have feeling in your neo-bladder?
Yes I still have feeling in my neobladder. I feel the urethra and the bladder neck but hopefully you won't have to deal with this at all. The neobladder itself has not much feeling. When it needs to be emptied (and there is no infection and I feel good) the neobladder feels full, kind of like a full stomach. There is pressure on my anus when it is really full. I empty every 4 hours b/c my doc told me for my case that longer than 4 hours would brew infection. I used to watch the clock at first.

12) How long are you, generally, kept in the hospital?
I was in the Intensive Care Unit for 5 days and the regular floor unit for 3 days. My doc wanted me to go home quick b/c he did not want me to get sick from the sick people that were on my floor which was floor 3. So I did the rest of my recovery at home with a visitng nurse for one month.

13) How long do you have to be cared for 24/7 when discharged from the hospital?
I had a visting nurse for a month. She came in once a day to change my dressings and check everything. If there was a problems she would call my doctor. My grandmother was with me for about a month as well. She is a retired nurse and took 24/7 care of me. There was also my Husband too whom helped my Grandma as much as he could.

Oh, and do you always have to cath yourself, Kara, or can you void naturally most of the time?
I have to cath myself every 4 hours. I can't naturally void on my own. The muscles used for that were too destroyed to work properly.

I hope some of this helps you.

I am going to PM you with my phone number so you can call me.


Love and Hugs, :grouphug: :kissing:

Kara

[Imustpee]

:) Hi Christine.I will be having my bladder and urethra removed in 29 days! When I get back from UCLA I will try and answer some of these questions for you...

[Judith56]

Christine here are my answers:
1. My stoma is very tiny- about eh size of a pencil eraser and it does not stick out, infact it is sunken in, so it looks like a little indentation.
2. It does not hurt to cath, I have had this stoma for 13 years. The only time it can be sore is if I have an infection.
3.My stoma does leak some mucus and if I have an infection it will leak small amounts of urine. I keep it covered with gauze and tape or I also use a special covering designed just for stomas for internal pouches. For some people in the beginning, like the first year there be leakage issues, but with time it usually goes away.
4. Immeadiatly after surgery while you are still in hospital you will have a foley in the stoma along with other tubes. One of those will be an NG tube in yioiur nose and it stays there until you bowels start to function again. So untill that happens you will not have to defecate. They will not let you go home until you have a bowel movement. Afdter any abdomenal surgery it an be scary to push when you go because you stomach muscles are sensitive, but it is not terrible.
6. As soon as my bladder and urethra were out my IC symptoms were gone and have not returned. That was 19 years ago.
7. When they took out my urethra they just let the area close naturally on its own. So I do not have any openeing there, I dont need one!
8. Everyone is different as far as recovery time. It depends on your age, general health how the surgery went, etc. Generally they 6-8 weeks to feel like yourself again. It is MAJOR surgery, not only are they operating on your urinary tract, but they operate on your GI tract as well.
9. I did not have phantom pain, but I did initially have the feeling that I still needed to urinate, That goes away with time. When I would feel like I needed to pee I would sit on the toilet till the feeling passed.
10.Yes, you can wear what ever you want with a stoma. In fact I heard of women who are models with them!
11.With my internal pouch I get this pressure sensation when I need to go cath it. If I have an infection, then I will have pain in that area.
12.Nowadays I think it is about a week to 10 days barring any complications. When I had mine done I was in for a month, but remember that was over 13 years ago.
13.When I came home from the hospital I did my own care, but I did have a visiting nurse that came to check on me a few times a week for two weeks, I think. It was so long ago I can't remember exactly.
Judith

[DebbieD]

Just some More info! I went into the Hospital 2 Days Before Surgery. I had to do a Big Bowel Prep and Clear Liquids. Also I had to Take Huge Round of Pills To Prepare me for Surgery.

There is a ET Nurst that comes around and will Have you sit in a Chair and will Mark an X on the Stomach the For the Dr. to put The stoma. She will also answer and Help you will Any Questions about your Surgery or the Applanice that you will Have. She is Very Helful.

My First Surgery took 10 Hours cause they had aready used some Bowel for Previous Surgeries.
I was in 10 days.

I had a NG tube to the Stomach. Two Jaskson Pratts Tubes for Drainage. IV, Carther in my stoma.

They will aslo get you out of Bed as soon asthey Can :mad: I was a walking tubes Machine.

They will Listen to Bowel sounds and guve you a Stool softener.

Yes I still have the IC Germ. It has Cause me 3 Blockages in my Loop and I had to have my Right Kidney Removed Caused it just ate its way through everything.

I wear a 2 Piece System. A wafer and Bag that Snaps on like a Tupper seal. I change it Every day.

I swim and Hike and go Camping. I wear Shorts. Your Life does not Change just because you Loose yoir Bladder :bonk:

Compared to what I was going through I will wear the Bag Any Day.

I hook up to a Jug at Night that is at the Foot of my Bed for Night time Drainage. Then I disconnect in the Morning.

I shower with out the Appilance on. It does not hurt the Stoma.

I hope that some of this Helps. Just let me know if you have any Questions Okay. :)

Hugs :grouphug:
DebbieD

I Have had the Urostomy for 21 years now. Plus 4 revisions total.

[~*~Christine~*~]

Thank you all for answering my questions, and then some! You have been a HUGE help :kissing: