Please help, need some advice!!!

[malin28]

Had a meeting with my uro today to decide what treatments to try next since nothing has worked. I have faught hard to convince him of a surgery since nothings works and I have no quality of life whatsoever. He stated I had tried every treatment available in Sweden and finally agreed to do an internal koch pouch as a last resort. I am happy with that, but the problem is that he will not do a cystectomy along with it, and insists to do the pouch first and if I won`t get any better with the urinary diversion then he will perform the cystectomy as a second stage later on. I have heard and read that a urinary diversion should be performed along with cystectomy cause there is a high likelihood that the pain comes from the bladder base and not only from the urine running through it, but he insists on doing it this way. I don`t know what to do?? I am sooo afraid of wakening from the pouch surgery just to discover that the pain and urgency is still there. I don`t think I have the strength to do that and wait six month for a cystectomy. And this means another surgery. He says that bladder removal means that there is a potential risk of getting sterile so if I have a chance of getting better without having it done we should do it first he says. I have thought of this for a long time and I even wanted my urethra out as well, but he said that cutting it out means that a lot of nerves will be damaged and that I would loose all of my sense in my clitoris and vagina and that my sexuality would change a lot. Ok., I can agree of waiting with that, but not the bladder removal. Has any of you lost you feeling in your vagina due to bladder removal?? What should I do??? Shall I do the surgery in two steps even if I don`t want to? I feel like I am prepared to take the risk of getting sterile. Having children is not the most important thing for me now, it is survival.

Please help
love Malin.

[Kara]

Has any of you lost you feeling in your vagina due to bladder removal??

I still have feeling in my clitoris, vagina and vaginal area.

What should I do???

I was relieved by having no urine in my bladder and had the option to do the surgery just as your doc has proposed to you. You can feel better when there is no urine in your IC bladder and it's being diverted but eventually you will need to have your IC bladder removed. If left in place, the bladder that is not being used can get infected even gang green and it can cause more havoc than you ever anticipated.

If you want to see what it feels like to have your urine diverted for awhile, ask you doc if you can wear a foley catheter for a few weeks. That will give you an idea of what it will feel like with no urine it it. It may also sway your decision.

Shall I do the surgery in two steps even if I don`t want to?

I pushed for the full Cystectomy with a continent Ileal Conduit. A Neobladder as you will see in my other posts. I did not want to go through 2 surgeries and BELIEVE ME when I say the full cystecomy is ENOUGH SURGERY TO LAST A LIFETIME! In my opinion, I would try to see if you can sway him to do the whole thing at once. Please leave your urethra and your uterus and all of your female organs and genitalia in.....you want to have a sex life eventually and if they remove your urethra you will have a chance of losing some sexual stimulation. I would go back and tell your doc your concerns.

I feel like I am prepare to take the risk of getting sterile. Having children is not the most important thing for me now, it is survival.


I am 26 years old and I have a new bladder and I still have all of my female organs. I can have children as soon as I am ready.

Please email me with any questions you still may have. You can have a new bladder without risking pregnancy, you just need an INCREDIBLE SURGEON WHOM KNOWS WHAT HE OR SHE IS DOING!!!!

Please hear me out!
scream scream scream
Love,

[malin28]

Kara, thanks for your support! I shall talk to my uro next week and do my best to convince him to do the cystectomy. I feel so afraid at the moment, I never thought that it would get this far. But I don`t want to suffer anymore, I have Had it, I want my life back I am only 29.

Kara I read for a while ago that you were in pain due to severe infection in the bladder.Is the infection under control now and do you feel any better? I really hope you do.

I know it`s very important that I believe in the surgery beeing done, that it will make me better, but I really don`t think it`s enough just to divert the urine cause I had nefropyelostomacatheters put in my kidneys during christmas to empty and divert the urine into two plastic bags one from each kidney as a test to see if it would relieve my symptoms. But unfortunately the bladder didn`t get completely empty and eventually there was a blockage in the cathetetrs so all the urine ran through my bladder again. But during the first days when there was very little urine in I still had pain and urgency. So I am very afraid to say at least that this diversion surgery will fail. I just have to get the cystectomy done, cause there is a big likelihood that the pain etc. originates from the bladder itself. But of course, even this ultimate surgery might fail, I am aware of that. But if I don`t do it, then I would never now if I could have got better. My uro says that there is a chance of not getting better but there is also an opportunity to get 100 % better.

Kara did your uro told you in percentage how big the risk is for getting sterile with the cystectomy? My uro really doesn`t answer that question. He just say there is a risk, but how big?

Another concern is that the cystectomy when they cut nerves will create even more pain, is that possible do you think Kara?

I have to wait 1-2 months before the surgery, that feels close. How did you mentally prepared for your surgery and the adjustment to the fact having a stoma Kara ?

I am sooo afraid and worried, but at the meantime very excited, cause this could be the turning point into something better, a normal life.

:confused: :confused: :confused:
Best regards from Malin

[Kara]

Is the infection under control now and do you feel any better? I really hope you do.

My Infection is under control at the moment. I use a Duragesic Pain Patch called Fentanyl for when the infections hit. It takes the pain away completely.

Kara did your uro told you in percentage how big the risk is for getting sterile with the cystectomy? My uro really doesn`t answer that question. He just say there is a risk, but how big?

My doctor said there was no risk at all for being sterile infact a month after my surgry my OBGYN said I was ready to go as far as having a baby if I wanted to. But at that time and this time we can't afford one finacially. It's important to understand that I had a cystectomy with a Neobladder put in place, none of my female parts were touched at all. If your doctor is thinking about touching yours then I would not go to him. He does not sound like he knows what he's talking about....I am confused. I had 6 other opinions for 6 other doctors and in the end I decided to go back and have my original doctor do my surgery becuase he was the best in the state to do it. He is and was an incredible surgeon! My fertility and ability to conceive a baby were not compromised at all!

Another concern is that the cystectomy when they cut nerves will create even more pain, is that possible do you think Kara?

Malin, I have no pain at all that has to do with IC pain. That is the point to having the surgery, to have less pain, NOT more. If you are uncomfortable with your doctor and his surgical skills, then I suggest you go to someone else whom knows what they are doing!

How did you mentally prepared for your surgery and the adjustment to the fact having a stoma Kara ?

I read books on surgery and talked with other ladies that my doctor did this surgery on. I talked with 3 of them. They are all living a 100% IC free life and now, so I am I. It was a risk I was wiling to take and would gladly do it all over again with this surgeon.


The best advice I can give, is while you are waiting to have your cystectomy, get as many other opinions as possible. You can always cancel the cystectomy with this doc is you need to. Take your time with this!!!!


Love and Hugs grouphug kissing

Kara

[malin28]

Kara, thanks again for your answers and comments. It`s not that I don`t trust this surgeon. He is considered one of the best urology surgeons there is in whole Sweden. I think he is just honest and say what could happen, not that it will happen. But as with any type of surgery there is risks for complications. Of 100 koch pouches he has a reoperative rate of 5. That is extremely good, so he is very skilled. he must be around his sixties and has a long experience. He`s got a very good reputation and travels to other european countries to do and assist with surgeries.

It`s just that I am a person that really wants to know everything and I want to know exactly how big the risk is, even if it`s maybe impossible to tell. That is just a personality trait of mine.

I think a good surgeon is a surgeon that tells you about all of the potential risks, thats at least what another uro told me. Otherwise things could be a completely chock for you if it happens.

I have a remittance and are waiting for an appointment to one of the 2 IC specialists we have in sweden`for a second opinion. But he suggests either surgery or a sacral nerve stimulation. But!, they have never done it before in sweden for IC patients so I would be the first one, and I have thought about it but don`t want to be a guinea pig. Maybe they could do me a lot harm when they haven`t done it before.

My uro is actually a uro cancer specialist, that is why he has a long experience of doing kock bladders and bladder removals. He is really sweet and caring even if we have had our argues.

Thanks again for your comments and support Kara.

grouphug Malin

[Kara]

If it makes you feel any better Malin,

I was my docs first Intrestim (Sacral Nerve Stimulation) patient and it went perfectly. You can't even tell he did the surgery b/c there are no marks from the scars. My surgeon was the best, I belive on the East Coast of the US. If I had to have a revisionon my Neobladder, I would go back to him in a second should my insurance cover it. Anyway as I babble on here.....I was my doctor's first Interstim Patient and now he does them weekly.


Hugs grouphug


Kara

[Judith]

Malin, I did not lose any feelings in the vagina after having my bladder removed, in fact sex was better! When I had my bladder out 17 years ago I had to make the decision that I may not to be able to have any more children. I was in such a bad way that I chose to go ahead with the surgery and I am glad I did. Judith

[beverly]

Kara,

Its good to hear your doing much better, my daughter spoke with you awhile backabout your surgery. Saw all your pictures. What i would like to know is how long did you say the surgery lasted and the recovery. I am now waiting for my surgery date to have the bladder removed and the conduit put in with a stoma.

I think i am so looking forward to this surgery to get it over with. I am also from where you had your surgery. I had an appointment with your doctor but decided to stay with mine. he's also very good.

you do have a stoma don't you? How is that working out? :)

[julesb44]

Hi Beverly,
I had a cystectomy with an Indiana Pouch on Dec. 6th. The surgery lasted 8 hours. I was supposed to be in the hospital 7 days, but I was there 14. My pouch was leaking and they had to do 2 other procedures to drain urine. The pouch healed on its own, which they said most do. Recovery was slow. I went home with 4 drains from my abdomen. I was rid of them all within 4 weeks. I leaked urine often and had to change all the time. That was frustrating. But now it is 3 months later. I only have to cath every 3-4 hours. Sometimes even 5. My ic pain went away right after surgery. Surgery was the best decision I ever made. I finally feel human again. My pouch still has a ways to go, but it is maturing. Surgery is life-changing. But for me it was positive. Feel free to e-mail me at julesb44@charter.net
Take care, Julie grouphug

[malin28]

Judith,

Did your surgeon told you how big the risk is of getting sterile due to bladder removal? Why should there bee such a risk when they only take out your bladder, I mean they aren`t supposed to touch my female organs? Is the risk due to infections that might occur in the fallopian tubes, uterus. Is it about not being able to concieve or able to carry a child when they change your anatomy with the pouch thing?

:confused: :confused: :confused: Malin

[beverly]

malin 28

i'm not worried about being sterile i'm 53. Actually it seems like it will be a relief to possible not see blood everyday of your life and not wear a mattress(depends) everyday. can't wait for the procedure. I know it will be a long road but in the long run i think better.

thank you every one for all your replies to my questions. :)

[sanctuary]

Please consider this.. My uro. says IC is a disease and that in her experience, she says taking out the bladder will not stop the pain. Most surgerys will not stop the pain"..Why do that in hopes it may help, and go through a surgery and all that implies only to wake up in pain and not know if it'll be better or worse for months??..Plus once it's done..what then? I wouldn't resort to surgical removal of anything else in my body. I've had so many.. none of it helped me, all of it made it so much worse...please, think about this!
If you didn't have the pain,,would you do it? Probably not. Get better pain management first and try to see if the quality of life improves first before you remove anything PLEASE .Sanctuary

[beverly]

Sanctuary

pain is not the issue for me to have this done, i have a very high tolerance. If the pain is still there when the surgery is done so be it. the bladder is shot, it is also refluxing into my kidney destroying them also. My bladder bleeds non-stop and clots non-stop just like cranberry sauce so i think in the long run if it stops destroying the kidneys the surgery is best.

i'm not looking forward to this but it is a must at this point. I can't spend the rest of my life being enemic and tired all the time from the blood loss.

thank you all for your help
:)

[Judith]

Malin in answer to your question about not having more children, I think that they were worried about complications during pregnancy. They said nothing about becoming sterile.
To the person who asked about how long the surgery takes- it is different for everyone, but when I had my conduit done it took about 5 hours. For some it takes less, but I had prior surgery and they needed to remove adhesions first.
When I had my conduit converted to a continent pouch the surgery was 13 1/2 hours. Judith bunny

[beverly]

13 1/2 hours for one surgery WOW that's long well i think my surgery is being scheduled for this coming Tuesday if all the arrangements can be made. If not will be in 2 weeks. They will be removing the bladder making an illuit conduit (however you spell that) with a stoma. My daughter is having a fit wondering if she can make it up from Kentucky by than. Well I really need her more after the surgery since she is an lpn and my sister is an intensive care rn. So hopefully i'll have everyone i need there to take care of me and of course my husband and son will be there also. i guess there is no more procrasternating (however you spell that) Wish me luck guys. i wish i spoke on the network along time ago instead of just reading. grouphug

[Judith]

beverly, I wish you the best of luck and hope that things go smoothly for you. Please feel free to ask me any questions you may have. I did have an ileal conduit for 6 years. My email is: jkthomas@sover.net Also a wonderful site for ostomates with the best message board ever is www.ostomates.org (http://www.ostomates.org) I will keep you in my thoughts. Judith

[beverly]

judith,

thank you for your reply. I've been given a repreve. The operation will not be Tuesday thank goodness (didn't sleep alnight Thursday) waiting for Friday to find out. Will be in approx. 2 weeks, nurse will get back to me with an exact day, beginning of this week. The uro. did not want the operation done until i met with my new renal doctor that i'm seeing Wednesday of next week.

now i have more time to get my affairs in order, you know like make sure i have enought dog and cat food in house. all the supplies the house will need while i'm recuperating (i'm a poor speller)

Well i've taken up too much space so i :rolleyes: thank all of you for your replies

[princess66]

Kara,

I am also thinking about bladder removal. I live in Canada and have not searched for any good surgeons just yet. I keep reading that its a diease and bladder removal will not help things.

I have had IC since 1998. I have alot of pain accompanied by frequency and at times of course, have flare ups because of diet.

By reading your posts, its changed my mind and it seems like it has worked for you and 3 other ladies right?

What kind of pain were you experiencing before the surgery.

Do you think its a good idea to have the bladder removed? I just want to live a free IC life again just like before. This is IC is annoying and interferes.

Are you eating normal foods or still watching your diet.

Princess
angel

[Kara]

Like I said in my other posts. I am doing well. I love my new bladder and it was all well worth it and I would do it over again in I had too. I can eat pretty much what I want. I do get infections that we are working on fixing but other than that, I am happy!


Best Wishes,

Kara hi

[Alisha]

Princess, If you don't mind me asking, how old are you? What would you rate your pain level on a daily basis? Is IC causing you to not be able to function, or is it just an annoyance? I only ask these questions because I have an IC friend who had her bladder out 6 months ago, at the age of 26. She had a bladder capacity of 100cc's, pain of a 9 daily, and could barely get out of bed. Like Kara said, she is happy with her new bladder, and so is my friend. My friend also has had SERIOUS infections and is hospitalized more than she expected. It is always your decision on this matter, and you have friends on this board who will support you, just ask MANY questions to those who have had the procedure and your dr.'s. Good luck in finding some relief.

Hugs,
Alisha

[Kara]

Beverly,

I was in the hospital for 7 days in ICU for 5 of those days. The recovery was long and tedious and hard but well worth it in the long run. I will repost my surgery experience for you although you are not having the same surgery as I did.

Best Wishes for a Speedy Recovery!

Kara grouphug hi