bladder removal

[alana rose]

I was just wondering if anyone has any info or personal experience with bladder removal? I have been thinking of having this done as most of the treatments have not worked for me. I asked my uro about it and he said that I would not be a candidate since I was not married and had no children. I am 33 yrs old, single, and have known that I do not want children-I always say that I make a great aunt! And honestly with ic I could not see caring for a child, because some does I can barely get up and move around!

Thanks everyone!
alana

[ICNJess]

There are only a few girls that I know who have went through that, and they are Judith, Kara, Brea, and Beverley. Try reading Kara's story on her bladder removal:

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

And there is another woman, May, who is in the process. There's a forum a little bit below here, you could look through the archives and find out more info. Good luck!

[Judith]

Alana, I had my bladder out a long time ago. It will be 18 years on Dec.31! :) .I was 30 years old when I had the surgery. I have been very happy, even though I do get nasty infections,I feel it is better than living the torture of IC on a daily basis. I would be happy to answer any questions you may have. I was married and had two little boys at the time of surgery. I am still married and my boys are now grown. I feel it enabled me to live a much more normal life. Judith

[Joyaur]

I am seriously considering have my blader removed..At least that would stop the urgency and frequency.
Elmiron helps me but it makes my bowels very loose...Can hardly make it to the bathroom before I explode.
Then I could stop taking any pills. I am on three different kinds for IC.

[curlycue]

All you ladies are remarkable in being able to share your stories and experiences regarding your bladder removal.

I have one question for the ladies that have had it removed.

1. Do any of you ladies have Phantom Pain?

The Dr. I asked to remove the my bladder adviced me that even if I did have it removed I would still have what is called Phantom Pain. I would still feel the pain and frequency?

I dont understand if you have a organ taken out why would I still have pain. He did not have a answer for me. Mabey you ladies will?

Thanks,
Ruth:hi:

[Dixiefireball]

i do believe you should talk to judith since she has been threw this she should have most of your answer for you.
sending you hugs and prayers
Rhonda

[Judith56]

Hi Ruth!
I got your message, but my email is messed up. So I know you sent me one, but I can not read it and I can not send out emails.
To answer your question about phantom pain, I didn't get that, but i did still feel like I neede to urinate in the beginning. I used to sit on the toilet till the feeling passed. This lasted a few months and to tell you the truth, I have forgotten what it feels like to urinate or even that feeling of needing to go. It has been over 18 years since I had my bladder out. The pain you still feel has to to do with nerves and the body's ability to remember. I was told that if you have had pain for a long time it gets imprinted in the nerves and even though the cause may be gone, for some people they still feel the pain. You may want to talk to a pain doctor about phantom pain and if there are ways to deal with it. Judith

[curlycue]

Hi Judith,
You are a wonderful person and I really admire your bravery and courage.

Judith,
Can you truthfully tell me that you can live a normal life with out a bladder?

Can you go the the shopping,the beach,vacations,ride in long car rides, get on planes.Can you have a normal sex life?

Thanks for your resonse
Ruth

:hi:

[Judith56]

Yes Ruth,
Unless I tell people they would never I do not have a bladder. I have normal sex life, in fact it is better than when I had IC because now I am not in pain when we have sex. I have been married to the same man for almost 26 years. I raised two sons, I work part time, I garden, go hiking, etc. In fact tomorrow I am going to California to help out my brother and his wife with the new baby and my 3 year nephew fpor a week. I can actually go all day without needing to go to the bathroom. I get such a kick out the fact theat when my husband and I go for long car rides we now have to stop for him, instead of me! My only restriction is that I can not lift very heavy things, but that is no big deal. In fact I welcome the excuse! I do get very bad infections about every couple of months that I need to go in the hosptial for, but I would much rather be like this than have to deal with IC on a daily basis. I am very fortunate in that I had a good outcome with the surgery. Judith

[curlycue]

Hi Judith,
I am glad to hear that you are a on the go Gal. I guess you have answered all my questions regarding the bladder removal.

Do you have what is called a Indian Pouch?

You are right about going the hopital than having to deal with IC on a everyday basis. Judith can a person get pregnant if they dont have thier bladder?

What part of California are you comming out to ? I live in a little town by the name of Mira Loma but the big city that we are next to is Riverside.

I hope you have a good time with the new baby.

:hi: Ruth

[julesb44]

Hi all,

I have also had my bladder removed. It has now been almost 1 1/2 years. I have had awesome results! I have an Indiana Pouch. My pouch was made to be the same size of a women's bladder, which is the one complaint I have. I have to cath myself through my bellybutton every 3 to 4 hours. Sometimes I can go longer, depending on what I've had to eat or drink. I have no pain! I get crampy when my pouch is super full sometimes, but that is it! It is a difficult surgery, but I would do it again in a heartbeat! It is easy to cath anywhere. I even do it in the portapotty at my son's baseball games. I got some infections in the beginning, but they always went away with a course of antibiotics. I irrigate my pouch every night with a special solution now, and that has prevented me from having any infections for the last 6 months. I would be happy to answer any questions you may have. I finally have my life back and was able to return to teaching!:angel:

Take care! Julie

[Joyaur]

I am considering a pouch..then I could eat anything I wanted again...

Also could sleep almost throught the night, instead of waking every hour.


Why did you opt for the pouch instead of the bag? Other than the obvious...that it is internally?

[julesb44]

Hi Joyce,

My dr. had performed the pouch surgery many times. He actually recommended it. If you're worried at all about your body appearance, the pouch is great! I feel normal now,(except that I pee standing up, which isn't all bad considering how disgusting some bathrooms are!) There is an extra expense with bags also. Although, I do use one at night. You can probably go longer between bathroom stops with the bag. I need to go every 3-4 hours. Good luck with your decision.

Julie:)

[Joyaur]

Thanks for the comments.


My Doctor said the POUCH should be my the LAST RESORT.

Makes we wonder if he has every done that surgery.

..Then I could sleep somewhat at night instead of getting up six times...sleep deprived.

Also can you now eat anything you want?

I love fruit and can't have any except pears and blueberries.... so want the pouch or bag so I can enjoy LIFE AGAIN!!!

[mayray518]

Life means having a "life", Being able to work, take part in outdoor activities, etc. I was bedridden for 6 years with IC and if the elavil had not worked for me I would have considered the pouch. We can only suffer for so long. The docs never even mentioned it to me in 1992. I can only hope that all of us find relief in whatever method we choose!!

[julesb44]

I can eat anything I want Joyce. That is a wonderful thing because food really affected me too. I threw out all my Prelief! No more worrying about acid!

Take care, Julie:):hi:

[Joyaur]

Thanks Julie..
I am really looking forward to swiming,bathing and eating fruits again without worring about my blader flares when I have my bladder removed..

Your responces have been so very helpful !!!!

[curlycue]

Good Luck Joyce,

I wish you the best of luck. I really admire you for doing your home work on this issue and making a decision. Let us know how everything works out.
Ruth:hi:

[Jane Prichard]

I had my bladder removed in December and an Indiana Pouch done.

I have no phantom pain or urge to urinate.

They took the lower part of my large intestine to make the pouch. This part of the intestine is the section which absorbs Vitamin B 12 so I will have to have a B12 shot, one a year or one every two years, depending on how my body reacts.

They left my urethra in (and it WAS SORE because I was at the point of having instillations of DMSO, Heparin, and anything else they could think of three times a week for a couple of weeks) They were trying to get me approved to do my own instillations at home. Some ladies have to instill themselves at home several times a day. My urethra was so sore I didn't think I would be able to do it. Anyway, my urethra is still in, they just sewed the opening closed. I have no pain whatsoever from it now.

The surgery was tough, it IS MAJOR surgery. Make sure you have someone to wait on you hand and foot. BUT, it's not so bad if you have someone there to help you, plenty of pain meds, and a VERY COMFORTABLE bed. Just lay around and enjoy being pain free, for a change.

I leaked a lot until about 2 months ago. I had to have a minor hernia surgery in April for a hernia caused by the bladder surgery. The hole around the stoma opening was left too large and some intestine was protruding through.

Today, I had a check up with my uro and have been released to ride horses again and start jogging! I have been gardening like mad, hiking, mountain climbing, and doing anything at all (except riding, jogging or aerobic exercise) But I intend to begin exercising tomorrow.

I catheterize my belly button (where the stoma is) about every 5 hours. I can sleep through the night now. In the beginning I had to set the alarm and wake up to drain every two hours.

I wear anything I want, including my blue jeans. That goes along with my horseback riding, I don't think I could sit a horse without my wranglers :-)

My IC pain was so severe I was bedridden for two months. Couldn't even walk to the bathroom, had to crawl. The doctors were talking about disability, spending the rest of my life in bed, and morphine pumps. I insisted they remove my bladder.

I had only been diagnosed with IC for 2 years, although I had "minor bladder infections" for 7 years without a diagnosis of IC. Now we know that is what it really was.

I had an interstim implant April 1, 2004 and it worked like a champ for 3-4 months. Then it just stopped working, the frequency came back and I remember telling my husband one day, "ut oh, I'm in trouble again". Sure enough within a couple of weeks, full blown pain again.

I would do it again tomorrow, if I had IC again. (bladder removal) I WOULD try the implant again first, though. It "bought" me time and if it was still working it would be wonderful.

After the surgery I had an outside bag for about 2 months and two tubes coming out of my stomach. One to the bag and one to flush with which was keeping the ileal conduit open for when the drainage tube was removed. I never had any odor with all of that.

My doctor is Dr. Tchetgen of Urology Associates of North Texas. She is WONDERFUL! She is a lady from Cameroon in Africa and from John Hopkins. She is very compassionate, loving, understanding and caring. She ALWAYS calls me back immediately and always had a solution for any problem I was having! She is recommending bladder removal to anyone who is "at the end of their rope" and has tried everything.

She tried to talk me out of removal but then she came to realize that there was no other alternative. I've done so well that she has asked if patients can call me to talk about removal.

I can sometimes hear her while I'm waiting in the exam room. I honestly hear her diagnose IC every time I go to her office. Sometimes, I've heard her diagnose 3-4 new patients.

I think IC has reached epidemic proportions. Unless, of course, all the uro's in the Dallas/Fort Worth area are sending their patients to her because they can't deal with IC.

[DebbieD]

Glad the Bladder removal is working for you. I have the Ileo-Conduit. I have had it for 20 years. I also have had 3 blockages and now on my 4th Blockage. I had my Right Kidney removed last year cause it was dieing. I use to do areobics. I did low impact. I still walk aloy. We go camping and I love to swim. Thanks for your Story.

Take care
DebbieD

[Jane Prichard]

Was your kidney removed due to your bladder removal?
How does the ileal conduit get blocked?

[DebbieD]

Well from the stoma arrea. when I HAD A lOO-O-GRAMTHE sCOPE SHOWED THAT IN THE lest urter is Blocked as the Dyes gr through. If it does not go through a certian point this they callit a Blockage.n Diffefferent. But the Good surre way is to do a Loo-o-Gram- and that is how that they found out.

DebbieD

[DebbieD]

By Bladder waas removed 20 years ago with 3 revioions. Last Summert the Right Kiodney removed. Now it is just the Left on I have Left. all because of sebvere IC and obstructuion in siode the LOop

DebbieD

[curlycue]

Hi ladies its me again asking questions, I would like to know is there any expenses once you have your bladder removed! like irrigation equipment or I dont know bags. I pay 110.00 for meds a month. How much expense is there? if any.

[Jane Prichard]

In the beginning there are irrigation supplies: sodium chloride (I think), syringes (the big ones), catheters, lubrication, covers for the stoma (I've found nursing pads work well, they're soft, absorbent, and have a water proof liner....I also use the AMPatch, skin preparations to help with irritation from the adhesive. You can take menstrual pads, cut them to fit and use the adhesive to stick them to your underwear.

BUT....I am no longer on any meds and believe I will only have to go to the doctor every 6 months to one year.

I reuse the catheters. I wash them with anti-bacterial hand soap and then hang them on a toothbrush holder to dry. I will shoot some 70% alcohol through them every 4-7 days (but be sure to rinse them out and off before inserting them) Occasionally, I microwave them in boiling water to sterilize them. I am still testing to see what works best for me and since I haven't had any infections I may discontinue the boiling.

I can put a catheter into a zip lock bag and put it into my pocket. If I rinse it with water before insertion I usually don't need a lubricant anymore. Of course, the public bathroom needs anti-bacterial hand soap. Just in case (or if I'm outdoors) I will carry some disposable surgical gloves so I don't need to wash my hands.

Now, I irrigate about once a week depending on how much mucous I'm producing. I've found most comes out through my catheter anyway. So, I have to keep syringes and sodium chloride in stock. You use 60 - 120 cc's of sodium chloride each time.

I keep an "overnight" bag with everything for a week inside so I can just grab it and go. I keep a 2-3 day bag of supplies in my car. I have a 1 day bag I carry with me, although I've started leaving that in my car too. (Don't want to get "stuck" somewhere without supplies, the sodium chloride and I believe the catheters require a prescription so I'm sure to take what I need with me wherever I go.)

Now, the "good news"...I keep an empty sodium chloride bottle in the car, it has a screw on cap. Then, if stuck in traffic, or whatever (I must admit, sometimes when I'm just lazy) I'll catheter in the car and drain into the bottle. :-)

I keep a bottle of anti-biotics in my purse. If my urine becomes smelly, dark, too thick, or shows any signs of an infection I can start them while I make a call to my doctor.

I know this seems like a lot....but I really don't think of it anymore. I only drain 4-5 times a day depending on how much and what I drink so it really is no bother and takes no special thought anymore.

[curlycue]

WOW there is alot to this. One question are you pain free! if so it sounds like its all worth it. Good luck.

[Jane Prichard]

It sounds like a lot but I'm used to it after only 6 months. Not so bad, really.

I am completely pain free. Have been since the day after the surgery. I am also medication free...completely. And, I'm able to take all my vitamins and eat/drink anything I want.

:woohoo:

[Silverfox]

HI Jane!

Did you have any other related conditions? Did these go away with the removal of the bladder. I'm thinking of conditions like fibromyalgia, IBS, fatigue, migraines headaches, did you have any and did these go away with the bladder removal and no more bladder pains? Just wondering, because I feel that IC is systemic and you would need some further care if you have any of these conditions.

Thank God that the bladder pain is gone and you will have a good life now.

In my own case I have pain in my bladder, and also in my hands and feet. This pain is just as intense in my hands and feet as it is in my bladder. And I have terrible migraines, IBS, carpal tunnel, some body fibromyalgia. Wondering if bladder removal would cure those.

Bless you brave lady.

[DebbieD]

Having My Kidney removed was nothing related to to my Bladder removal. yes My Ostomy supplies are exspensive. But My Insurance Pays for alot of it. I have a Two piece system. The wafer, Bag, Skin Prep, A rolled foir by four to but over my Stoma so Urine does not go everywhere. I have a Big Jug to go to the Foot my my Bed for Night Drainage. I use Bedside Drainage bags for Trips and etc. I also Use Inserts that go in my Wafer and Pick Tape on the Outside of my wafer when I swim. I do change it everyday.
I use Convtec system.

It is just something in my urine that just causes Blockages or the Loop will get Kinked. One Time it was lack of Oxygen to it, no Blod Supply. Each person is Different.

My Dr. said he has Never seen it act like this before on other people. Some people have Problems and some do not. I am one of the Ones That it happens to.

DebbieD

Please fill Free to ask Questions I hope that I can Help you.

[marye]

Debbie, did you have kidney trouble before you had the bladder removed? I am at the point of considering surgery. The doctor says augmentation would be safer because he wouldn't have to disconnect from the kidney. But he also said it fails a third of the time resulting in more surgery. I had one kidney removed 30 years ago which is what started my bladder problems. The other kidney is fine.
Guess what I'd like to know is, did the doctor discuss risks to kidney with you before the bladder removal? I'd really like to know how much I'm putting my kidney at risk with either surgery. Thanks for your help. Mary

[DebbieD]

No! I had sevre IC when I was in the 2nd Grade and when I was 24 they removed my Bladder then. But before that I went through about 6 surgeries. The Bladder removal was the LAST Resort. By Kidney was dying that is why they removed it last year. I had tons of cysto, and Hunners Ulcers and all the above that comes with IC.

Feel Free to ask Questions. I hope that I can help.

DebbieD

[Jane Prichard]

Silver Fox,

No, I have not been diagnosed with any other conditions. I only have a little restless leg syndrome, but very little. It is much better the more active I stay. I only take vitamins, magnesium, and folic acid to, hopefully, help.

Have I ever had any of the conditions you mentioned? Not diagnosed. I did have carpal tunnel for a couple of years when working on a horse ranch-lots of heavy lifting while cleaning stalls, etc. It went away on it's own after I moved into office work.

I have never had irritable bowel syndrome although within the last 15 years there were 2 occasions of my having an accident out of the blue while driving my car. Not small accidents, explosive! I didn't go to the doctor because they were isolated incidents about 10 years apart.

Migraine headaches? I had a bout of a couple of years with very debilitating headaches. They went away.

I tend to treat myself instead of seeing doctors. So far, I have no other conditions, at all.

Were these related to IC? I believe the RLS is, was.....or, perhaps it is just a syndrome of inactivity. I have been in bed a LOT for the last 3 years due to IC....months at a time bedridden.

BUT....one of the reasons I was so adamant about bladder removal, and quickly...was, as I told my doctor, I felt the IC was "moving" to other parts of my body. Can't explain it, just did.

[Judith56]

Mary, in response your question about risk to the kidney- when you have an ileal conduit- this where you will wear and external pouch to catch the urine, you will have reflux to the kidney. This means that your urine will go back and up into the kidney, and if the urine is infected you have a higher chance of getting a kidney infection. If you are a candidate for an internal pouch this most likely will be a better option for you. When they create the internal pouch they make a vavle inside so that there will be NO reflux thus protecting your kidney.I originally had an ileal conduit and because I kept gettting septic kidney infections I was beginning to lose some kidney function. Once I had it converted to an initernal pouch my function got better and has remained normal. I would discuss all this with your doctor.
Ruth, as for costs my insurance pays fro mysupplies once my deductible has been met for the year. The only thing they do not cover is gauze which I use to cover my stoma. Sometimes I use the AMpatch which is like a bandaid for stomas. So besides these items I also need tape, stuff for my skin to protect it from the tape since it is very sensitve, and catheters. It also depends on where you buy your stuff from as to what the cost is. Some places charge more than others. Judith

[marye]

Thank you Judith for the info.