To Kara and all, questions regarding cystectomy

[malin28]

Hi

I am 29 years old have had IC for 5 years. This last year I have been absolutely torned by pain and urgency frequency. I am nearly housebound and can`t work. Have tried almost everything for my IC except BCG without any relief whatsoever. My quality of life is zero. I think I am beginning to loose my sanity cause of this. Had given up on every interest, cant even manage to read a book cause of the pain and constant feeling I have to go. Since a week ago my uro put in pyelostomycatheters in my kidneys temporary to see if a urinary diversion and empty bladder will make me feel any better. But I can´t say I am any better yet. `Shall have this for 3 weeks. He just insists that it`s the urine that causes the pain etc. Have any of you had such a test done before any of your surgeries?

I have spoken to him about having an internal pouch done (a so called Kocks bladder) but I insist on having my bladder taken out as well cause maybe the pain comes from the damaged nerves in the bladder itself and the urethra out as well. Now he is very reluctant of taking the bladder out, cause he says that there are major risks for complications and only perhaps could think of doing the internal pouch with the bladder left in at first.

I really would like to hear your comments and experiences regarding the following potential risks/complications he is talking about following cystectomy:

1. He speaks of the risk of getting ileus, subileus wich he says can be very hard dealing with, wich can cause further surgeries. He said that some can get it once, and others several times. The risk of getting it is 10 %. Has anyone had this complication?

2. He says that I may not be able to travel outside my country cause if something will happen, there may not be as qualified health care as where I live.

3. He says that I may get sterile. I have no children yet , and that frightens me a lot. Do you have any idea how big the risk is? Has any of you had any children after the surgeries??

4. He says that if they take out the urethra, many nerves will be cut of and that may lead to a sexuality problem for me. (As far as I concern a rather have no feeling whatsoever there so I am not so concerned.) I hope he meant that cutting the nerves will make less feeling not the opposite??

I have a nother question to you. My biggest concern is that the cystectomy will fail to remove the feeling of constant pressure and frequency, urgency wich is my biggest problem. What does it feel like when the bladder is out. Is it an silent empty feeling over the bladder area?

Kara, have you no feeling at all in your urethra? I think I read somewhere that they cut the nerves to it. ´Did you have ulcer or nonulcer IC?

I hope you don`t mind me asking how does it feel having sex when the bladder and urethra is gone? Is it absolutely painfree or ??

I am sorry for all the questions but this is major decisions and I am going to a pain clinic for 4 weeks before my uro will even consider surgery, but is willing to if it will fail.

Thanks a lot in advance. You are so great!!

Please tell me about other complications that you have encountered after surgery, I need to be realistic.

With best regards from Malin

Ps: Kara is it ok. if I e-mail you privately too. If so, could you please give me your e-mail adress.
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[DebbieD]

Hello I have I had my Bladder removed for 18 years with three revisions! I had several major surgeries before I had my Urostomy. I had a S3 nerve block where they cut the two main nerves that go to the Bladder. I had a Cecum icysto-plastic Bladder made twice. Which is Part Bowel and Part Bladder, Augumention done. Hinners Ulcers on the dome of the Bladder, Finally in 1984 I had my Ileo-conduit done. Yes I keep infections all the time.I have Kidney Pain. But the Bladder Pain is totally gone. But I have had three revisions done. Now I have "Short Bowel Syndrome" Dirrheea real easy;

If you want to e-mail me Please do
ldurham@comcast.net

[Kara]

Malin,

I will try and answer all of your questions to the best of my ability, knowledge, and experience.

1. He speaks of the risk of getting ileus, subileus wich he says can be very hard dealing with, wich can cause further surgeries. He said that some can get it once, and others several times. The risk of getting it is 10 %. Has anyone had this complication?

I'm not exactly sure of what this is. I may have it as we speak. Can you explain more about what this is? Is it specific to pouches and neobladders? What is it?

2. He says that I may not be able to travel outside my country cause if something will happen, there may not be as qualified health care as where I live.

I have traveled sooooooooo much since my surgery! I drive back and forth from my home town in upstate NY to my new home in central NY almost every weekend which averages out to be 2 hours. Traveling 2 hours for me is Heaven. I don't stop to pee at all. I don't feel my bladder at all anymore. I empty it every 4 hours via a catheter into my urethra.

3. He says that I may get sterile. I have no children yet , and that frightens me a lot. Do you have any idea how big the risk is? Has any of you had any children after the surgeries??

I am planning on having children next year. There is no reason why you can't have children unless the do a radical cystectomy in which they may remove your ureterus and overies. I am only 26. I am able to have children via vaginal delivery, although if I have to have a C-Section, they will need to speak to my surgeon over the phone so he can direct them where to cut.

4. He says that if they take out the urethra, many nerves will be cut of and that may lead to a sexuality problem for me. (As far as I concern a rather have no feeling whatsoever there so I am not so concerned.) I hope he meant that cutting the nerves will make less feeling not the opposite??

I have less feeling now in my urethra because they cut the nerves to it, although, I still use my urethra every day. My urethra was kept in and is in use. I had a Neobladder. My sexuality has not been effected by my Neobladder surgery. in fact, sex is much less painful now than it was when I had my bladder. My Husband and I are very happy about this. My clitoris was not changed in any way during the surgery and my vagina and other female organs have not been compromised whatsoever. I am fully healthy gynecologically and sexually.

I have a nother question to you. My biggest concern is that the cystectomy will fail to remove the feeling of constant pressure and frequency, urgency wich is my biggest problem. What does it feel like when the bladder is out. Is it an silent empty feeling over the bladder area?

I have no feeling of my bladder anymore. It feels like Heaven! It's the best feeling I have ever had. It's peacful and quiet. It's soft and safe. No pain, pressure, urgency, frequency, or retention pain. It feels like they replaced my bladder with a down pillow......ahhhhhh....so nice, so very,very nice!

Kara, have you no feeling at all in your urethra? I think I read somewhere that they cut the nerves to it. ´Did you have ulcer or nonulcer IC?

I had a little feeling in the urethra only when I catheterize it does not hurt though. Yes they did cut the nerves to it but I still use it. I had end stage, refractory, interstitial cystitis. It's the worst kind of IC out there. I am only 10% of the IC population. It's really, really rare. I failed all treatments including the Interstim. In the end I wore an indwelling foley catheter for 8 months. It was the most peaceful time of my life. It was like being on vacation from the IC. It takes all of the urine you make and drains it into a bad that you wear on your leg and at night on your bed. Having no urine in my bladder was the answer for me! The urine and the shape my bladder was in (could only hold 30cc's) made me unable to live.[i/]

I hope you don`t mind me asking how does it feel having sex when the bladder and urethra is gone? Is it absolutely painfree or ??

[i]I still have my urethra, and all of my female organs. Sex feels better. It's still a bit painful but I wasn't expecting any miracles from it.

I am sorry for all the questions but this is major decisions and I am going to a pain clinic for 4 weeks before my uro will even consider surgery, but is willing to if it will fail.

Thanks a lot in advance. You are so great!!

Please tell me about other complications that you have encountered after surgery, I need to be realistic.

The complications I am having are urinary tract infections and kidney stones. We are working on fixing this. But I'd rather live like this any day than go back to having my bladder.

I had a Neobladder done: "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."

I encourage you to scower this bladder removal board so you can get a full understanding of what we went through with our experiences. We are all so different. Educating yourself is the best way you can help yourself. There are lots of great posts in here with valuable information on bladder removal.

It's also A MUST TO HAVE THE BEST SURGEON YOU CAN FIND TO REMOVE YOUR BLADDER. An unexprienced surgeon will mutilate you and you will have every problem imaginable!


Best Wishes, Please feel free to email me at:
klkreese@twcny.rr.com

Kara

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

[Judith]

An ileus is when the bowel stops working, it can lead to a bowel obstruction. I have had two bowel obstructions wqhich required surgery and a partial obstruction that went away on its own. That is during a 17 year time period.I have traveled to many places, including going to Switzerland. I have never had any problems. I do carry with me my latest blood test results and info my doctor feels may be necessary in case there is a problem.As far as being sterile, that should only happen if there is damage to your female organs, ie, nicking an ovary, or damage to the uterus. Taking the bladder out itself does not cause sterility.Sex became better for me after surgery. Judith <img src="graemlins/bunny.gif" border="0" alt="[bunny]" />

[malin28]

Dear Debbie, Kara and Judith,

Thank you sooooo much for sharing your experiences regarding your cystectomies. This is invaluable information for me! You all give me hope that there can be a good life even after cystectomy. Maybe my uro was telling me about the worst things that could happen, even if it`s not usual. I don`t want him to frighten me but I need to hear what could happen so I am prepared.

Kara, it really sounds like heaven not having the bladder. This is the feeling I have been dreaming of, this soft down feeling. It`s to good to be true.

I have been very concerned with the risk of getting my uterus or ovaries injured, but maybe the risk is low. But there are risks with everything, I could get an infection that likewise could make me sterile. My husband says that we have to take this risk, cause having children isn`t the most important thing it is getting me a life worth living. We can always adopt he says.

I have to go to the painclinic and see what we can do first.

Kara, did you try BCG instillations before your surgery?

Thanks Judith for explaining ileus. When you had it, was it an acute operation? It sounded like this was very serious and almost life-threatening when I talked to my uro about it.Can you tell me a little moore about your experiences with it?
Judith, did you have ulcer or nonulcer IC?

Thanks again for your tremendous support and willingness to share experiences.

Love Malin in Sweden
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[Kara]

I tried DMSO. My bladder was broken. It would not work correctlty anymore at the size of a walnut so no treatment worked for me.

Good Luck with your pain clinic. Sometimes as many ICer's will tell you, the pain clinics saved them from the pain of IC. If you visit the pain management board you will find tons of posts about pain meds.

Best Wishes,


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

[Judith]

Malin, back when I was first diagnosed it was 25 years ago and they didn't have the same criteria. I think that I had ulcers, because I read my reports. The doctor had tried to heal them while he did the cystoscopy using fulguration.
As for the ileus, it is not fun! Basically the bowel shuts down. The pain is intense, I think it is worse than childbirth and I had both my children without using drugs (OUCH!). The pain is so intense that you seek medical attention. The first time I had non-stop vomiting that lasted two weeks before they figured out what was wrong. The second time as soon as the pain hit they knew what to look for and found it right away so I didn't have to suffer so much. Yes, I had emergency surgery and yes if not taken care it can be life threatening, BUT, if you have a doctor who is on the lookout for it, it should be dealt with quickly. Now when ever I think I may be headed for an obstruction, my immeadiatly does tests to rule it out. The reason I had them was because I have internal hernias that the bowel slips through and gets caught up, causing the blockage. The last time I had the surgery to fix it the surgeon did something different so it wont happen again, and so far, 4 years later I still OK! Good luck. Judith