Questions for cystectomy patients

[mcdoll]

Some of you may have already read my desperate attempts to have my bladder removed even though I'm in early stages of my treatment. I've since realised I should try other things first, but bladder removal is kind of my safety net. It's the end plan that gives me hope. I have a few questions for patients who have undergone this surgery. How many years did you suffer from i.c. before your cystectomy and what are all the treatments you tried first? Did anyone have to get second opinions before finding a doc who would do it? Also, what were your symptoms like by the time you resorted to cystectomy? Finally, I know sometimes the surgery is not succesful. It seems to sometimes have to do with the method of urinary diversion, so what types did you guys get? I know these are a lot of questions. I just want as much info from people who have actually gone through it as I can. Oh, one more question. I've read that during a cystectomy they also remove your reproductive organs. Is this always the case? Thanks for any answers you can give me, you guys are the best, I'm so glad I found this forum.

[Imustpee]

How many years did you suffer from i.c. before your cystectomy?
40

what are all the treatments you tried first?
Everything except for interstim

Did anyone have to get second opinions before finding a doc who would do it?
I saw 9 uro's over 40 years

what were your symptoms like by the time you resorted to cystectomy?
2 oz capacity bladder full of red raw tissue...see my bladder photos here on the ICN

the method of urinary diversion, so what types did you guys get?
Indiana pouch, Dec 05

Oh, one more question. I've read that during a cystectomy they also remove your reproductive organs?
No, why would the dr do that?

[mcdoll]

wow, you suffered a long time! I hope the cystectomy finally brought you relief! Thanks for your answers. I was pretty worried about having my reproductive organs removed. I know they often do it, maybe it's only when the removal is for cancer? The fact that you had to see 9 uro's actually makes me feel better. It means that they aren't all going to have the same opinions and that if I keep looking I'll find the right one for me (so far I'm not thrilled with the 2 I've seen, I do however have an appointment for the end of May with a highly sought urogynecologist. Maybe she'll be the one!)

[mcdoll]

I'm sorry, I don't know how to find the photo's you're referring to.

[Imustpee]

I have absolutely NO IC symptoms at all...it is totally gone and good riddance....
There is no need to remove any reproductive organs because of IC...Cancer however may be a different story....
I saw some Navy doc's in the 60's - 70's....I was diagnosed at Madigan Navy Hosital in 1976....after that I saw 5 more local uros, and then I saw my hero Dr at UCLA..HE SAVED MY LIFE..:angel:
Where do you live? I am in Washington State....as for the pixs I think you need to go to the home page and find the link that says "Bladder photos"
Lesa

[snowgirl]

Wow Lesa you have had IC for 40 years. I thought 22 years was a lot.

The Indiana pouch if you mind my asking do you wear a bag or cath a stoma?

What would you say your recovery period was before you could work again? I hear one year.

I figured you had your surgery done at a big university or one of the top 10 hospitals in US- you said UCLA.

Glad you are doing well. Thanks for sharing. VIcky

no phantomn pain that they tell me I will have?

[mcdoll]

I'm in Quebec, Canada. Finding a good urologist is tricky, but we have a lot of good hospitals in Montreal connected to University's, so I'm sure I'll find the right one soon. I'm actually looking into possibly trying antibiotic therapy, but I'm not sure where to get broth cultures done in Canada.

[Kara29]

I suffered for 4 years before my cystectomy and then 5 more before my indiana pouch and urethrectomy.

I'd tried EVERY treatment available to me and even some experimental treatments such as Botox.

I did get 2nd and 3rd opinions but my original Urologist did my Cystectomy. He would not do my reconstruction so I went to a wonderfull doc in NYC for that.

Before I had my cystectomy I was at end stage and considering ending my life. I would have to pee every 10 minutes with no relief and just he movement of my Husband moving in bed or walking on the bedroom floor would send shooting pain up my bladder. It makes me shudder just to think about those days..... That is how much pain I was in. Luckily and thanks to my Doctors in Boston and NYC I am still here and doing much better today!!! :smile tee

I'm happy to say that my Urethrectomy and Indiana Pouch were a GodSend! I catheterize a tiny stoma the size of the tip of my pinky fingernail, every 4-6 hours. I still have pain but it relates to Pudendal Nerve Entrapment and Adhesion Disease.

A total cystectomy does NOT mean removal of reproductive organs. Make sure this is exactly what you want them to do if they have to. I still have my reproductive organs and actually trying to conceive now. :angel:

Make sure you get as informed as you possibly can and ask your Doctors and medical team as many questions as you have to.

Excellent Questions by the way!

Sending warm thoughs and well wishes up to Candada!!!! I may be headed up there to visit a close friend over the summer.

Kara

[mcdoll]

Thanks for taking the time to answer some of my questions. I'm curious what caused you to suffer for another 5 years after your cystectomy?

[Kara29]

The catheterizations to my urethra wore it out and it would close up with scar tissue. I would keep having surgeries to open it back up but the scar tissue could grow back as soon as a few hours. It was a REAL BIG MESS. Let's just put it that my urethra and urgency symptoms were too much to work with. They just stopped functioning for me.

Kara

[snowgirl]

I suffered for 4 years before my cystectomy and then 5 more before my indiana pouch and urethrectomy.

I'd tried EVERY treatment available to me and even some experimental treatments such as Botox.

I did get 2nd and 3rd opinions but my original Urologist did my Cystectomy. He would not do my reconstruction so I went to a wonderfull doc in NYC for that.

Before I had my cystectomy I was at end stage and considering ending my life. I would have to pee every 10 minutes with no relief and just he movement of my Husband moving in bed or walking on the bedroom floor would send shooting pain up my bladder. It makes me shudder just to think about those days..... That is how much pain I was in. Luckily and thanks to my Doctors in Boston and NYC I am still here and doing much better today!!! :smile tee

I'm happy to say that my Urethrectomy and Indiana Pouch were a GodSend! I catheterize a tiny stoma the size of the tip of my pinky fingernail, every 4-6 hours. I still have pain but it relates to Pudendal Nerve Entrapment and Adhesion Disease.

A total cystectomy does NOT mean removal of reproductive organs. Make sure this is exactly what you want them to do if they have to. I still have my reproductive organs and actually trying to conceive now. :angel:

Make sure you get as informed as you possibly can and ask your Doctors and medical team as many questions as you have to.

Excellent Questions by the way!

Sending warm thoughs and well wishes up to Candada!!!! I may be headed up there to visit a close friend over the summer.

Kara

I remember your very first bladder surgery of all and the pictures. VIcky

[Imustpee]

Vicky, I have a stoma and I cath with 16 fr coude caths every 4 - 5 hours and once at night...
My recovery was long...I had a blocked ureter for 5 months and that kidney was in failure because no local dr caught it until I went back 5 MONTHS AFTER THE SURGERY TO UCLA...I was in the local ER 5 times...the last time they kept me for 9 days, and they NEVER SAW THE PROBLEM!!..I lost 40 pounds...I was very sick..Then I got MERSA and got sicker...then I had 5 other small surgeries( First one at Virginia Mason in Seattle) to put in stents and PNT tubes ( Last 4 were at UCLA,,,hubby and I flew from Seatac to LA 6 times with tubes hanging outta my body) Uro took out the last 2 tubes the end of Sept 06 and I started college on Oct 4th, 06...the other girls at school would carry my books up and down the stairs for me, I couldn't do it.... my core muscles were so weak that I was in PT for 9 months...and even with ALL THAT I would still do it again in a second to be as healthy as I am now...AND to NOT have any IC symptoms..and NO PHANTOM PAIN...zip, zero, nada...:woohoo:

[snowgirl]

sounds so much better doing the cath every 4-6 hours. You get to sleep all night long.

Sorry you had so much trouble post op with complications. Then MRSA on top of it. Is the MRSA really all gone now or do you carry some all the time.

Glad they worked through all that and you are better. I have a RN friend who had a liver transplant. It took her a year to recover. She almost died more then once. You should see her now. SHe looks and feels great. I am the one on disability . She is off working full time on teaching staff at GVSU teaching nursing lectures to bsn students.

Vicky

[DebbieD]

I had IC sypmtoms from the 2nd Grade through the 12 Before I said anything to my Mom. I was Scared, I failed Gym. The First Dr. I went to was my Family DR. and it was for mono. Well All those years I was peeing Blood and Huge Blood Clots.. The Dr. asked me if I hurt when I peed and I said No!

Well I was getting a Physcial for College and the same thing happrn again. (He said Debbie do you Hurt, Burn Pressure or anything when you Pee. I finally said Yes. Cause you could see in the Cup how Blod red it was.

He sent me to one uro and he did a cysto under General. He goes you are fine. Here are some antibotics and you wil be Better):loco:

I went Back to My Family Dr. who was a very nice and Kind DR. He told me we are sending you to another uro okay. Well this uro said Honey you have the Worse Case of IC I have ever Seen . I am sending you to Duke University.

Now remember From all those years I peed Alot of Blood and Just string of Clots.So I went to Duke saw this womderful Dr. and here is what he did to me.


In March 1977 I had Urethral Calibration, Urethal Dilation, Cystoureethroscopy, Vesical dilation,Transurethral Vesical Biospy, Transurethral Fulguration of Hunner's Ulcers and Pelvic examination.

Then when I woke up he was telling my Mom I had a severe case of IC he has ever seen and was turnning me Over to the IC DR. at that time at Duke was DR.Webster.

All those years I Passef the Big Clots the Toilet Bowl was always Blood red.

So I saw Dr Webster. He is soooooo Great . I have been seeing him for over 30 years now.

He Did alot to me also. Until the Last resort!!:toilet:

He Did!!#1

Alot of cystos, until my Bladder was about ready to pop. You could see my stomach Linning.

Then we Did a S2 Nerve Block. Where thry go in and cut the 2 main nerves going to the Bladder. But the Downside of that was I was self-Cathing every 15 Minuites.

A couple Years Later we tried a Cysto CeCum-Plastic Bladder. Which is Part Bowel and Part Bladder. That Last a couple of Years and still self-Cathing.
Which this time I was in Collage a Cheer Leader and all this was going on.

Remember He has been using alot of my extra Bowel to do all of this, So I was Getting (Short Bowel Sydrome,)

Nest and Only thing Left was ro Remove my Bladder. Now remember this was 24 years ago. They have all kind of new things out now for People to try. Cause it is a Big Thing to have done to your Body, Study and get all the Info you Can. Every Person is different.So each Persons Body is going to react in different ways. Also this is my Version of my side of the story.

So On Dec.3rd.1984 2 Months before I got Married I had My Bladder Removed and a ilep0Conduit made.

When I was fully awake I looked at it and said this is what I will have the rest of my Life.:toilet:


Okay the Surgery Fine. I was in there for 15 hours cause he had used so much Intestine Trying to make me one without having to do the Surgery.

After the Surgery and Wedding and Living in Nashvile TN. I got involved in a suportt Group:woohoo:. That was the Best thing I ever did. I learned alot from it. But the Group had Ileostomtys and Colosotimes and Uros. You could not tell any one Person had an ostomy.

So I started doing more. We went Camping. Hiking and Nascars races. Now it is ust me and my Buddy. Sometimes buddy gets his way but not all the time.

Okay back to the Surgery. I was alone when I had it done at Duke. My Boyfriend was working My Mom and I were not speaking at the Time. My Dad was doing other things.:help:But the One Thing I did have have was my Faith.
Plus Knowing I was going to be married to the Most wonderful Man in the world.And I still am. We just had our 23 Aniversary.

Okay after the ileo-conduit he Left my ureatha in. Why I do not Know!!!
A year after the Bladder was out I had to go back cause the Ureatha was trying to grow another Bladder at the End of it. Weird:loco:
So we went back in to remove my Ureatha. A Little bit longer surgery.

2 Years Later I had a Blockage in my Loop and had to have a nother remade again. The DR. didnot understand why that happen.

3 years later I had another Blockage. the Loop had a Kink in it.

Another 2 years later Another Blockage at the Opening at the Stoma Was Blocked.


So things started going smooth for awhile. Bur I was still getting infections.So I would go in the Hospital for IV's stuff.

Then in 2003 my Right Kidney was giving me fits all the Time Pain after Pain.:headbang: So we did several Renal scans With Latix. That was painful for me. It showed that the Right kidney did not Look so Good.


In 2004 I had my Right Kidney removed. Also the the ureters on the Left Kidney got Blocked and I had tto Put Stents in for a while.


Well within this Last Month this Kidney has Taken a Turn for the Worse. We took out the Stent to see if I could go with out it. The Answer is NO!!!!

after he took it out within 3 days , I was really sick. I had a High fever of 104
And it was blocked again. So they went Back in December and put in new and different stent.

I am now a MARSA Patient.

But now I am fine now that this infection is Cleared up.When I get another one is Back in the Hospital and they Put a PIC line in for IV access


Now Ladies this is my Versuin on what happen to me. I know alot of other Ostomy People that has had no trouble at all.

But Please Read up on it and Discuss it with your DR.

Have a Pain free day
:angel:
DebbieD

[mcdoll]

It's great to be getting so many answers. I'm sorry some of you had such a hard time with complications from your operations. I'm aware of the risks. It seems that almost everyone who had it done does not regret it though, which gives me lots of hope. I think I could go through a lot to get rid of my ic once and for all, and I haven't had to deal with it for very long. I'm looking into as many non-invasive treatments as I can, even experimental ones. I'm going to try them all out in as little time as possible so that if I resort to a cystectomy (which I've said a million times by now, is truly my biggest comfort and hope), I'll know it really was my last option. Again, I'm still not really considering hydros or distills, too many bad side effects and little proof they help for anything longer than temporarily. It does me good to hear that despite all the complications you guys feel your surgery was a success. I truly want to have this done as soon as I can, so I can have as many pain free years in my future as possible. No more nocturia! What I would give for a full nights uninterupted sleep.

[mcdoll]

I'm trying very hard to find a doctor to take out a friends bladder. She is in end stage and in horrible pain all the time, but none of the doctors here are willing to remove her bladder. Would it be possible to have the names and numbers of the surgeons who performed your cystectomies? She has tried everything under the sun and is at the end of her rope. We're in Canada but she's prepared to go to another country to have this procedure. Thank you for any information you can give. (lol, I promise it's really not for me!)

[Judith56]

To answer the question about a doctor that will perform the surgery, go the area on this website that tells which doctors treat IC. I think if she goes to a major medical center she will ahve more luck, ones like Cleveland Clinc, or Lahey Clinic in Burlington, Mass. do them. I had mine done at Lahey.

As for the other questions, I had IC all my life and had my bladder out at age 30.
I tried every treatment available at the time- this was back in the late 70's and early 80's. I had many hydrodistenstions,DMSO,drugs, there was no Elmiron at the time, hypnosis, and bladder retraining. There was not even an IC diet, Interstim, or many of the things that are now available. I also had an augmentation cystomplasty in which they took out most of the bladder, but left the base. They used small bowel and the ileal cecal segment to make it larger. Because they left part of my bladder in the IC then spread to the entire new bladder segment, so it all had to be taken out and I was given an ileal conduit, this where you wear and external pouch over the stoma., After 6 years I had to convert to my internal pouch because my conduit had many problems, even after I had it revised- this is where they redo the stoma. That was 16 years ago and I am very happy, even though I do still have some problems like infections and a few other things.
As for getting other opinions, I had seen 5 other doctors and they all said it needed to come out. I did not have to look for a doctor to do it, I was told I needed it done.
My symptoms at the time? Constant urge to urinate,every 10-15 minutes around the clock. I had bands of fiber growing in my bladder from scar tissue constricting it, causing rentention, bladder stones, my capacity was 30cc's. I was incontinent and not even realizing that it was happening till I felt my pants be wet. Depends was not even invented yet! I had episodes of sharp urethral pain, so that even bending over made it worse- at the time my sons were 2 and 4 so picking up after them was not fun.
I kept my female organs, there was no need to remove them. In fact you can have children even after a cystectomy and many women do.

[mcdoll]

wow, what a story! I'm glad you're feeling better now. I honestly can't believe the way she's being treated by the doctors here. She's begged to have her bladder removed, and no one listens to her. Now, I can understand that in cases like mine, but she's really got no quality of life whatsoever and no pain relief at all from any medication. She's the definition of a candidate for this surgery. At the moment I'm looking into out of the country solutions for her. The states might be a good idea, but I think cost is a factor. I've been writing to medical tourism companies and some of them have answered and seem like they might be able to help, she just needs to get her medical files to them first.

[Imustpee]

This Dr is my hero and I can honestly say that he saved my life,,..I am forever grateful. He is in L.A. California at U.C.L.A.


http://www.uclaurology.com/physicians/Raz_24.cfm

[mcdoll]

Thanks, we knew about him. I think a concern is the high cost of this operation in the states. Still, I've given her contact numbers that I found researching. I'm hoping maybe one of these doctors will do her consult over the phone and through faxes or something of her medical files. She's in so much pain, I don't think she'd be up to travelling unless she was sure she would get the operation. I really feel for this woman. I think the reason I've been trying so hard to get her help is I know that one day I might be in the same situation. I feel like I really need this victory. Her situation has become really important to me. It's nice to be a bit less selfish for once. Since I've had this illness I haven't been as caring about other people as I used to be. I guess it's normal too. Oy, sometimes it isn't easy to stay positive. But I'm really trying.

[Imustpee]

Yes, you are right..the operation is very costly, but living with IC and pain the rest of my life was worth the cost...
Doesn't your friend have insurance?

[mcdoll]

We're living in Canada, so our healthcare is free, but no doctor here is willing to perform the procedure for her. I wrote to over 20 places which organize medical tourism, and found one that is very interesting in India and has agreed to perform the surgery for her, so she would have to pay in this case. Last time I spoke to her she told me she's hoping to get over there within 2 months. I haven't heard from her in a few days which worries me a bit, I wonder if maybe her pain got so bad she went to the hospital again, or maybe her computer is just down. I worry about her a lot because she's always suffering. I really hope the surgery will help her feel at least a bit better.

[Judith56]

So this puzzles me, your friend is willing to pay airfare to go to India plus the surgery, etc, but she isnt willing to pay in the States? It is closer, she can drive here and if she has problems then at least it would be easier to get here to get them corrected. In additoon it will be easier for the doctors in Canada to commincate with surgeons here, I highly doubt that they will be willing to call India. If she is in so much pain, the flight to India is grueling- it is like 26 hours- how will she manage that? Plus I can't even imagine how she would fare coming back on the plane after the surgery! Is this doctor in India reputable? Do you know or have you talked to any of his patinets? For it sounds like a disaster waiting to happen.

[mcdoll]

It is pretty far, and I agree it's less than an ideal situation, but she's desperate. The thing about going to India as that, even with the airfare it costs way less than in the states. In the US it can total around a quarter of a million dollars, and in India it is only 4000$ for the surgery. I think it's true that such a long flight, especially after surgery, can't be very pleasant. But when it gets this bad, and you don't have the money to pay for it in the states, it's a valid option. I know the doctor is very good and other people have gone there for a cystectomy before and found the experience to be far more pleasant than in the US. It's a scary thing to do, I'm worried about it too, but I think she's at the end of her rope and this is the last option she has. It's not that she doesn't want to pay to have it done in the US, but there's no way she could afford it. That's a crazy amount of money. Luckily there are good doctors here, and I'm sure when she gets back they will be able to take good care of her. All of the medical records from India would come back with her. I think people should stop trying to freak her out about this and instead support the ordeal she is about to face. A lot of people aren't aware of how amazing the doctors and medical facilities are in India. Everyone thinks they're better off in the States, but it isn't true. In India they are one of the best in the world for complicated surgeries. People go there all the time for surgeries to avoid the ridiculous costs in the States.

[ICNDonna]

I believe we have some IC Network members who have had their bladders removed in Canada so I know it can be done there. And if doctors in Canada don't feel bladder removal is a good option for a patient, I seriously question whether seeking the surgery in another country is a good idea, especially if the doctors there are willing to make the arrangements and schedule or agree to do the surgery without seeing her.

Donna

I am closing this thread and request that the subject not be reopened.