cystectomy

[julesb44]

Hi all,
My cystectomy is scheduled for Dec. 6th. I'm getting nervous and wondering if I am doing the right thing. For those of you that have had this done, any regrets? Are you better or worse off than you were before?
Thanks for the advice.
Take care, Julie confused.gif

[Raitt]

Hi Jules...I had my cystectomy Aug. 23 2001..I am so very happy with it..I have a ileo conduit..Only thing my Uro would do..He claims any internal bladder would still get attacked by IC.....I can tell you this year alone I took 3 vacations..I bike..Hike..Swim..Rollerblade ..I do everything I did before IC..I'm pain free and have been for many many months..I would do it all over again.The recovery is long ..The surgery is painful..But for me was worth it ..Good luck and please feel free to e-mail anytime...My e-mail is braitto@msn.com

[Kara]

Julie,


I would NEVER go back to having IC!!!! The Cystectomy saved my life and most important my sanity! I would do the surgery over 100 times knowing how I feel now that I did it! I am happy and I have NO REGRETS! Go for it Sister and in the end after you heal you'll be flying high in the sky!!!

If you have any questions or concerns about your upcoming surgery please let me know. I am happy to answer any and all questions that come to my way regarding Cystectomies!!!


Looking forward to you new life!


Love,

Your Cystectomy Sister,

Kara <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" /> <img src="graemlins/blink.gif" border="0" alt="[blink]" /> <img src="graemlins/hi.gif" border="0" alt="[hi]" />

[Judith]

To be totally honest I am very glad I had it done. I have faced other health problems due to having the cystectomy, but I would much rather deal with them than have IC.It has been almost 17 years now, and I truly feel that my quality of life has been enhanced by having the surgery. I can't imagine trying to live the life I have had for the past 17 years with IC. Judith <img src="graemlins/bunny.gif" border="0" alt="[bunny]" />

[Oceana]

I have been contemplating about this idea (bladder removal) for almost two years now,even before my hysterectomy, both my URO & GYN don't agree with it. But I have this very very strong feeling that this is the solution to my problems including the IBS, since there is no filter in the bladder what is absorb in it goes to every organ in my body.I really don't mind wearing a bag .If somehow this will add,even just 50% normalcy to my life&lt; I really don't mind it. My father has coloectomy & he wears bag,his life is just as normal as anyone else. I am very ,very inspired to hear you guys have a positive outcome of it. It inspired me a lot. I think I am going to talk to my URO about it again. Taking all these medications I believe do more harm in the long run than get the culprit out. For another 10 years if they are not going to find a cure ,it is worth having it rather than for 10 years running back & forth to all these stupid doctors & each time I go I felt I have to be supplicant & beg for their attention I hated it. IC has ruined the mosst precious years of my life. I do think about it for a long time coc I wanted it done simulatneous with my hysterectomy,but I have no luck with the HYSt , so I want to gamble it now, I have nothing more to lose. IF I survive the surgery , I think it is half of the battle. Or maybe I will asked them to temporarily suspend my bladder function & see what happened.

SOOOOOOOOOOO glad to hear you guys post this topic for me. Just going back & forth to the doctors is a hell for me,even worst than the pain in itself. I hate to beg......I hated it.And just for this reason alone is worth it.

In gratis,
Li

[julesb44]

Thanks so much for your responses. You have helped relieve some of my fears. It is so nice to hear of people who are so active and without new problems. I know the anticipation is worse and I will feel better once it is all over with. Thanks again for your concern. Now I know I am doing the right thing.
Take care everyone! Julie <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

[lee]

Hi,
My URO suggested I get my bladder removed, I was so shocked that he suggested this that I just said not now.I didn't ask what all is involved or exactly what life is like after having your bladder removed (like wearing a bag etc.). How much trouble is it? I've had IC for 6yrs, still work full time but am in constant pain and get very little sleep. Mainly wanting to know if the quality of life would improve.
Thank you,
Lee

[Kara]

My quality of life improved 95% <img src="graemlins/blink.gif" border="0" alt="[blink]" />
I don't even talk about IC anymore unless I am on these boards. I catheterize myself every 4 hours (my urethra) I have what is called a neobladder.

"The neobladder, also known as 'continent orthotopic urinary reconstruction', appeals especially to younger patients who wish to avoid a stoma on the abdomen and/or wearing an ostomy bag. In many cases those with neobladders learn how to completely empty their bladders and do not require intermittent catheterization. However, this is a learned response and not a guarantee. In cases where 100% continence is not realized, regular or intermittent self-catheterization may be necessary."

If you click on this page you can abtain information about all types of bladder removal (cystectomy) procedures such as:

http://blcwebcafe.org/cystectomy.asp

Treatment Options
Urinary diversions
Stomas / ileal conduits
Internal pouches
Neobladders
Neobladders for women
Ostomy resources
Indiana pouch
Florida pouch
Gastro pouch
Hospitalization
Surgical pain

I had refractory, end stage, interstitial cystitis. My bladder was the size of a walnut and it just stopped functioning for me.


Best Wishes to you! I know I made the right choice for my own circumstances. I am more than happy with my new bladder!

Kara


<img src="graemlins/blink.gif" border="0" alt="[blink]" />

[KarenK]

Sorry to post a negative, but before I had my bladder removed, all I heard was sunshine and roses. No one really told me how many thorns there could be. First of all, if you are having an ileal conduit you will have to wear an appliance. Although there is one nonadhesive appliance (and it leaks like crazy if you are a thin person or need convexity), the rest of them are adhesive. I found out after surgery that I am allergic to adhesives. Allergic to the tape on most appliances and allergic to the stoma pastes that "caulk" around the stoma area. No one ever thought to do allergy tests so I can not say this strongly enough GET ALLERGY TESTED FOR EVERYTHING YOU WILL HAVE TO WEAR!!!. I have to change all of the time and the peristomal skin is always blistered, weeping and painful.

My left ureter scarred over and I now have a nephrostomy tube in my left kidney. They finally passed it through the stricture but now mucous from the loop refluxes up the tube and clogs it up. On the 29th I will have a ureterscope passed through my kidney and another instrument to try and cut the stenosis. Then we have to hope that it won't just scar back over.

My stoma has also stenosed (scarred down so urine can not pass freely). I have horrible cramps that pull the stoma flush to my skin which dumps urine under my convex barrier. My new doctor (insurance finally is letting me go to Johns Hopkins so I can get some help) said that if there is not a simple way to free up the stoma, I will have to have a revision. If that is the case, he will convert me from the ileal loop to an Indiana Pouch. He wanted to know why on earth I was given an ileal loop diversion anyway since it wrecks havoc on the kidneys (from the reflux). He was not the first doctor to ask that question. Even the IC uro that I had seen in the past but that my insurance would not let do the surgery said that there is no difference as far as the return of IC symptoms in an ileal loop and an internal pouch and given my age (40), and size (5'1", 105 lbs), an Indiana pouch would be the appropriate surgery.

I had my surgery 8 months ago. I have been hospitalized for infections 6 times; each of them being 5 days or more. I am on more pain medication now than when I had the IC. I rarely leave the house but for doctors and to go to the hospital. I can not work and can not get help from disability. I can no longer drive. I have insurance through my husband's company but we still have had to lay out over $7,000 in things that they won't cover.

It seems that the majority of ICers that have their bladders removed do fine and are glad that they had the surgery. I feel that removing my bladder was the right thing to do but that I received the wrong diversion because I let my local uro (who only does ileal loops) do the surgery and did not have the benefit of a more experienced surgeon who could have given me more options. Thank God the company has switched insurance carriers but it may be too late for me.

If you decide to have the surgery, hope for the best but be prepared if things go wrong. Everything can not be easily fixed. That was the biggest misunderstanding that I had going in. That IC could not be "fixed/cured" but that any complications from a cystectomy could be. I have permanent kidney damage already and am facing having more intestine removed to either revise the loop or....and more likely....to have a whole bunch of intestine removed to create an internal pouch.

Again, sorry to be a negative voice but I wish that someone had sent me a message like this. It may have made me put on the brakes, fight the insurance company, find another doctor, and for sure GET ALLERGY TESTED!!!!!

Many prayers,
Karen K

[Kara]

Karen,

I'm so glad you posted your experience on here. It's good to know about Ileal Conduits/Loops. I have a dear friend whom is thinking about getting it done. I will definetely have her read your post! I think I may not want her to go through with it now.....

Thanks Again for showing us the other side!

Kara <img src="graemlins/blink.gif" border="0" alt="[blink]" />

[Judith]

Karen, I am also glad for your post. I think it is important to hear the negative as well as the positive. I also started out with an ileal conduit and I too had many problems with it, as well as having loss of kdney function. Since I switched to my internal pouch 10 years ago I have had no further kidney damage. I will tell you that getting the pouch is a big comittment on your part. You must follow to the letter the strict cathing schedule they will set up for you- it is the only way to get a good outcome. I know it seems like real pain in the beginning, but in the long run it is well worth the effort it takes. Please feel free to email if you have any questions. Judith <img src="graemlins/bunny.gif" border="0" alt="[bunny]" />

[Teri]

{{{{{Karen K********** nothing to say, just want you to know that you've been added to my prayer list. My heart just breaks for all that you've been thru......

tons and tons of gentle hugs~

[DebbieD]

Well I saw alot of responses of postive and Negative! I Started in the First Grade Passing huge Blood Clots, It Burned, Pressure, Chills. I did not know what was going on! I did this all the way through my senior year. I went to go get a physcial for college! My Dr. ask me if I burned when I peed I said no! Well Like a Dummy I was scared of Drs. Finally 2 weeks Later I told my my I need to go back to the DR. I was huring soooooooooooooo Bad. I even Failed PE several times. I mean I peed Huge blood Clots Like Strings Like Strings coming out. So we went back to the DR. He in returned sent me to a Urologist for a Cysto! Oh he said Take this antibotic snd you will be fine.haha! Well a week Later I was back at my Primary care DR. He then sent me to another Urologist. He siad Honey you have a bad case of IC. He treated me for 3 months then Sebt me to Duke University Hospital for a Second Opinion.

I Fell in Love with the Dr. at Duke. In the Mean time This was my Senior Year of High School! I was to be having Fun, Not going to DR's or in the Hospital. I had sooooooooooooo Many cystos that my Bladder was about ready to pop. You could see my stomach lining. That is the Truth.So Three days after Gradution I was in Duke and went through TRANSURETHRAL FULGURATIONS of HUNNER's Unclers on the Dome of my Bladder. That was wgere the Bleeding was coming from. Also I had Yrethral dilition of the Uthera, Urethral Calibration. A very small Bladder Capacity. That was the reason I was using the Batheroom 35to 40 Times a Day and abd about the Same at night.

The Next thing we tried was Baldder Augmentation, and Fulgurationof the Trigone. Which did not help!

Next we Tried the Part Bowel and Part Bladder thing. Yes I did have a Bladder Made out of my bowel up to my lungs almost. That did not work ! That was called Cecum-cysto Plastic Bladder. That was made twice. Did Not work.

Next we had the S3 Nerve Block done where they went in and cut the Two main Nerves that Lead to the Bladder to reduce the Pain. That did not work then I had to start to self-cath. Now that Hurt! I was doing that about every 25 minuites, cause of the Presure. We did that for a Year. Some one ask about the Nerve Block. It is not what you think it is. They actually go in there and cut the main nerves that lead to the Bladder to stop the pain. A Neruo had to do that.

So Finally in Decenber of 1984 two months before I got married I had my Bladder Removed. I had a Ileo-comduit made. They left the Ureathea intact hoping someday to reverse it !

Well I was having trouble with that. I had to strain and the Greenish stuff wanted to come out! It had a bad odor! I ended up at the uro twicw a week haing it drained! They had to use a Baby infabt feeding tube to put insude me ti drain this thick smellily stuff. But in order to frain it they had to give me a 100 of demeral and 25 of pheeragan to do it. They did this for about 6 months. Then my Local Uro called the Dr at Duke and said something has to ne Done. Come to find out at the end of the rerthra was forming snother Bladder! It was about the Size of a Golf ball. So I had to go back and have that removed!! Then two years Later I had Blockage in the Uureter, so that had to make me anlother loop and stoma. That one last last 5 years. Then I had another Blockage at the begining of the Loop. The Urine Was Totally Bloody!! The Urine Would Back up for 4-5 hours. Not a Drop of urine. It hurt #@!!!!!

My Last revision was in 2000. They had to use my Transverse Colon. I now have Short Bowl Sydrome. So I get Dirrehea real easy! I now get Kidney infections real easy now! I now go in the Hospitsl every 3 to 4 months. for Kidney infections, I ammmow real anemia.

But Overall I do not mind the the Ostomy!! There are good Day and BNad Days. But that is Part of it.

But it Beats Using the Bathroom every 15 minuites. I have have good and Bad Days.

But over all I Rather have the Urostomy than what I use to have to go Through.

A little Joke! My Husband and I wenr to a movie I had to potty. I went in a stall and a Mother and her little Boy was in the Stall next to me and the Little Boy looked uner snd Said Mommy this Lady stands and Poty Like I do! I finished and waled out. I got the wierdest look! Oh well'


DebbieD

Have a Day

need to e-mail Please do
ldurham@comcast.net

[mayray518]

So interesting to read all your posts about bladder removal and other alternatives When I was begging different urologists in 1994 after being misdiagnosed and suffering non-stop for 2 years for a conduit they said "Why should I bother to do that. You will be miserable. You don't need your bladder removed you need psychiatric help." They all refused to help me. I didn't have the internet to turn to then and get other opinions. I was down to 90 lbs and could barely walk. One doctor said "If you get your bladder removed and have to wear a bag, you won't meet any men like you do now." Can you imagine worrying about meeting men when you are suffering from IC. They were such jerks. Anyway, I am glad that all of you who have had it done can lend your support to others that are suffering. Thank God for this website.

[Jim Beech]

Hello Jules, I had my bladder removed twelve months ago after many years of severe pain and all the other problems that go with IC. I have a plastic external bladder backed by an adhesive flange and I change them once a week. Apart from this very small chore my life is absolutely normal. I can go for up to four hours before I need to empty the pouch which means I only get up once in the night.
The actual operation and aftermath were entirely painless although I was on an epidural for several days. I notice than some people have suffered after a cystectomy but only one who is using an external appliance, and that was due to an allergy.
I assume you've had your operation now and I wish you the best of luck and a pain free future,
regards, Jim