Having your bladder removed does not mean that you don't know how to deal with IC

[Kara]

Some people(including some of my family members) seem to think that by having my bladder removed I was NOT learning how to DEAL with my IC. This information is wrong.

If you are in the process of deciding wether or not to have your bladder taken out, it does NOT make you less of a person.

The reason I am here is to encourage the healthy way to go about having your bladder removed.

I am not a weak person for having gone that route and those of you out there whom are in the same crisis as I was, you aren't either.

There are thousands of IC patients that find ways to "deal" with thier IC.

Bladder Removal is one of those ways! For a select few 1% of us...


Please don't let anyone make you feel bad for making this choice.

If you'd like to email me with questions or concerns about having your bladder taken out my email is:

klreese@attbi.com

Thank You,

Kara

[ICNDonna]

Kara is one of the rarities in the IC world. Only about 1% of people with IC have as severe a case as Kara's.

And she did try many other alternatives before she considered bladder removal. For her, it was the answer and she is doing well even though she is still in the healing process from her surgery.

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

[Flore]

I have a question

How do me (or we) know that my Ic is not like Kara´s??, I mean, I go to the bathroom 20 or 25 times at day, and 4 or 5 at night; all of us know that is very umconfortable situation, If we work or study or be a 100% mom is the same. If I don´t go INMEDIATLY to the bathroom the pain is horrible

Now I don´t have pain every day, but if I´m stress (like now), or my period (like now) or eat anything that I can´t, or have sex, I can say that I DIE of pain!!

I read all the posts of the women that are in several pain every day, and cry, and wants to divorce or give up

So what´s the diferrence between Kara´s IC and the other one

How do I know if is time to think in remove my bladder or continue with this

Sorry if this a stupid question, but I really want to know!!

[ICNDonna]

Kara had full time, nonstop pain, was unable to urinate on her own a good share of the time, and had a bladder capacity of 3 ounces.

Three ounces is very small --- that is 85cc. Normal bladder capacity is 500 cc or more.

Donna

[Judith]

Just to throw my 2 cents in- my uro was the one who made the decision that my bladder needed to come out. Of course that was 17 years ago, before Elmiron, Interstim, and a host of other treatments now available. At the time I had tried everything available, with worseniing of bladder symptoms. My functional capacity was 30 cc's. I rarely drank any fluids, because my frequency was so bad. If you are very serious about having the surgery then you need to talk to your doctor and find out what he/she feels is the criteria for bladder removal due to IC and if you fall into that category. I also want to point out that I rarely had pain, just towards the end before I had my bladder removed and then it was urethral pain. This not an easy surgery and it is also something that can not be be undone. I do not regret in anyway having it, and I do believe it is the answer for a select few. Just get all the facts and information before you go through with it. Judith

[Kara]

The bladder capacity is the key question and also it's your quality of life. If you are not feeling good with the quality of your life and you would rather die most days than live,
then that's a sign to ask your doc about what to do next.


I tried 58 medications and the Interstim and nothing worked for my pain. I went to 2 pain managemement specialists and they said there was nothing they coud do expect nerve blocks wich did nothing for me. I had urgency, frequency, retention (full time) and pain. I saw 8 urologists in my travels and none of them were able to help me. I also wore a foley catheter for 8 months to see how it would feel to not use my bladder and it worked. But of course it was not permanent.

My bladder capacity was such that I could only barely hold 3 oz. This is a big key factor that a doc will look at when questioning having your bladder removed.

Give your doc a call and ask what your bladder capacity is. Some people can get along fine with a tiny bladder but I could not. It was the size of a walnut and he said it felt like a ball of cement filled with scar tissue and adhesions.


So,

it's about how many things have you tried to take, and how many doctors you are willing to see and they have to be specialists too, your quality of life and if you are happy with it or not, and bladder size.


I will keep you in my heart and prayers!


Love,

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

[Kim G]

Flore,
My uro is urging me to have my bladder removed. He says I will know when the time is right. He has been telling me this for two years and I'm still not sure (I have talked to 2 surgeons about the neobladder. I currently on hold 1 ounce of fluid. I urinate some nights 15 to 20 times. I lost count of how many times during the day. I am getting close to the point where I have pain every day, just the severity varies. I cannot sleep without pain killers. I'm still not convinced its time to have it removed. The time is different for everybody. I can't have distensions anymore because of too much bleeding and the elmiron, atarax, and prozac don't seem to make much difference. I guess I will only be convinced when I can't function at all. Its a horrible decision to have to make and unfortunately no one can make it for me. My advice would be just don't do anything until your sure. I'm still waiting. Kim

[Kara]

Kim,

I will stand beside you no matter what you decide to do! I will keep you in my heart and prayers. I know how rough this must be!


Love,

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

[LDS]

Kara, I don't have any frequency issues - in fact, I find that it's difficult for me to urinate, even after drinking tons of water. I am in severe pain (Level 10)at least every other day. When in pain, I get totally drugged up and then the next day I feel fine. By nightfall, the pain starts again. Not sure why that is. I've tried all kinds of pain meds - now nothing appears to be working. Since I don't have a small bladder capacity, is it better to be a druggie than have the bladder removed? I'm really not sure. I do know that most days I don't want to go on anymore as the pain is so acute. I've tried Atarax, Elmiron, Neurontin, Lortab, TENS, DMSO, hydro, etc. etc. The only thing I haven't tried is Elavil - my doc said it would help frequency, but not just pain. Has anyone had the bladder removed, just to get rid of pain and live???? Thanks, LDS

[Dawn Marie]

Kara.
I am so glad you brought up this topic, that is on the minds of alot of IC patients. I am like LDS where my pain is unberable. I have been made to feel like a coward whenever I even think of having my bladder removed. I have been bedridden 3-6 days a week for the last 5 1/2 years. I have tried many many treatments, and now have the interstim, but have to have a revision in three weeks. My biggest question is, how do I know having the bladder removal will take care of my pain when the pathways in my brain are used to sending pain for so many years? Do dr.'s do a spinal and totally numb our body to see if the pain is gone before they do surgery? Thank you Kara for addressing this issue.

[Kara]

LDS,

Have you tried going to a pain clinic?
The bladder removal option unfortunately has to wait until all avenues have been tired out.
Pain clinincs offer many options for pain. Narcotics, non narcotics, nerve blocks, spinal cord stimulators, and nerve stimulators (similar to interstim but made for pain) and many other things that I am unaware of.

I know so well how you feel, it's so maddening to keep tryng different things but I had to try everything before I went to bladder removal.

Hang in there LDS and I pray that you can find a pain med that won't make you feel like you are a druggie which you aren't becaue you need those meds to help you feel better. You are a strong person to have to go through that, some people won't even swallow a pill?

I think people do get their bladders out for pain reasons but it has to be up to the man in white to decide as well as yourself.

I will keep you in my thouhgts and prayers and if I can be of any help please don't hesitate to contact me at klreese@attbi.com


Best Wishes to you!

Kara


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

[Kara]

Dawn,

Sure you can try a spinal nerve block first in a pain management clinic. I had 2 of them, one was a Lumbar Sympathetic Block, and the other a Lumbar Epidural Block. The Lumbar Epidural Block will numb you from the waist down. These blocks are temporary and wear off after a few hours. They will test you out with them before they are to do the actual real nerve block. They use lidocane in your spine to see how you manage. If you do well and are happy they will do the real nerve block on you but keep in mind that these are not guaranteed to work and nerves will grow back in a few months if you are lucky some grow back in a few weeks. Unfortunately they did not do much for me.


Good Question how do we know if bladder removal is going to cure the pain? It's a chance you have to take and make sure you are seeing the BEST OF THE BEST of surgeons. I went for 5 consultations and ended up back with my original doc because everyone raves about his surgical skills.

To this day I have not suffered from any severe pain. I do have some healing pain left but not the pain like when I had the IC. I wish I could be straight up with you and say that your pain will be taken away but I can't in all honesty say it. I can certainly pray for you! I am doing extremely well and have no pain, no urgency, no frequency, and no retention pain, call it lucky? Maybe? Bladder removal will have to be a chance that you are willing to take. I wanted to die and my quality of life was nil, so I did it.

I'm here for support if and when you make this choice. Get fully educated and informed first and be willing to talk with as many doctors as you can so you can get other opinions and other views and ideas, who knows while seeing other docs, they may have one more thing for you to try!

Dawn and LDS, I will keep you close to my heart and pray that you don't have to have it removed but if you do I am here for you!


Love,

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

[Kara]

To give an example of the avenues that I traveled down to try to help my IC here it goes:


Dicyclomine Ditropan Ditropan XL Detrol Detrol
LA Pyridium Pyridum Plus Levsin Nortriptyline over 62.5 mg of Elavil Elmiron, Cysta-Q, L-Arginine, Aloe-Vera, Cardura, DMSO, Prelief Vioxx, Celebrex, Tagamet, Claritin, Vistaril, Trazodone, Xanax, Imipramine, Nortriptyline Ibuprofen, Oxycodone,Hydrocodone, Hydromorphone,
Meperidine- Neurontin Wellbutrin- Celexa- Effexor, Depkote and many many more............

Cystoscopies, Biopsies, Hydrodistentions, IVP’s, DMSO, Bladder Scans, X-Rays, Laparoscopy, Interstim Trial, Interstim Sugery, Lumbar Sympathetic Block, Lumbar Epidural Block, Urethral Dilatations, Stricture Surgery, Massage, Acupuncture, Allergy Elimination Treatments


Kara

[Yvonne]

Hi,

I needed my bladder out @ age 26 but had to endure 15 more years before my Ic was diagnosed, tried every treatment there is out there including bladder augmentation which rotted within a month, I have had an ileo conduit done and also the IC spread to the urethra and possibly the ureters now. I am one of the one percent which weren't diagnosed until the bladder was so diseased and who are ok with the frequency and urgency which was terrible before, I lived in the bathroom BUT I would not suggest bladder removal due to just having pain. I am debilitated with the same pain I had before the surgery and am at the end of my rope as far as coping with this dreadful disease. Pain is so wearing, so draining and I am about drained.
If your doctor wants to try this and try that, you know within yourself when enough is enough. I allowed them to make me try way to much and each try gave my bladder more time to get diseased.

Good-luck to all <img src="graemlins/hi.gif" border="0" alt="[hi]" />

[Flore]

I´m sure I´m not like you Kara!!

Yesterday, when I posted, I was in a very bad day:

1.- My husband and I have a very big problem with one car and false papers and my husband is very nervous
2.- Because of this I have been feeling bad, with pain and a lot of spams
3.- My period came yesterday, so the pain was in the high level!!, I vomited (??) all the day
4.- The traffic in México City is horrific at 2:00 pm, so I late 1 1/2 hours to pick my kids up form school
4.1 Instead I arrived to school, I had to go to 3 restaurantes and 1 store to ask the bathroom. In the last store the man who attended didn´t want to give me the bathroom. So I told him all the bad words that I know!!
5.- My lovely uro moved on yesterday to another city

At night (10:30 pm aprox), my husband went to the police station to open a "demanda" (sorry I don´t what is the significate in english), and I began to cry and cry and cry

I left 6 messeges since 6:00 pm to 10:30 pm to my new uro, because the pain was insoportable!, and he didn´t call

I took my car for go to the ER, because I wanted to tell to the ER dr. THAT REMOVE MY BLADDER!!!, because I have been thinking that I can continue like this for more time, and when I began to drive, my made told me that the uro was at phone

I was very angry with him, because if I had left 6 messeges was because I was very bad. Poor!!! he was very sorry, he told me that he had 2 surgeries and a lot of patiences in the afternoon

He took me "Panclasa" is an anthispasmodic for bladder and genitals

I slept very well, and today I feel better, I hope that this medicine works for me!!

So I thing that a big desition like remove any part of our body ( and I say this because I have a chronic pain in my left eye) we have to take when we were in calm, and no like I was yesterdey

Sorry for vent like this, but I was very bad!!!

AND my bladder capacity is: awake 150 cc, and under anesthesia 500 cc

I know that I have to prove another things for the disease, but in México we don´t have a lot of, so one of the goals of my next support group is take from USA the medicine, like Elmiron, Prelief, DMSO, Interstim, etc....

Thanks for stay for me and for all of us when we are bad or sad!!

[Kara]

Flore,

I'm so sorry to hear that you had such a bad day!!! WOW you must have been so tired and sad!
What paper did your husband get for you??? Was it divorce papers? What a maddening situation you must be dealing with!

My heart and prayers are with you and I hope that in the days to come, you will not have to suffer like you did on this day!!!!

Your post reminded me of a poem I have run across. This poem is how I feel sometimes with my doctor and yes as great as a surgeon that he is! I still get angry with him because I do feel like just a number or nasty file that he does not want to go near.....

Here's the poem:

Paperwork
by
Daniella

“A white lined paper,
holes and date on the top,
vital signs and temperature, blood pressure
Is my name there?
Do you know who I am?
Am I more to you than a diagnosis,
a number, a list of medications?
Can you look at me, think of me, as
A person? A human being?
More than a file three inches thick?
Who am I to you?
What am I to you?
Do you remember me tonight,
After you have hung your white coat
and signed out on your time sheet?
Do you ever think of me when you are home,
when my parents are pacing the hall,
when my breathing is labored and
my temperature is rising?
Your pager sounds at 3 a.m.
Does it ever occur to you that
It might be me?
But then again,
Who am I to you?”

Paperwork
by
Daniella


Doctors can be so cold and uncaring often!


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

[ICNDonna]

Flore, I think I may know what your husband had to file at the police department. I think it's what you have to do if someone has stolen something from you.

I'm glad you finally heard from your doctor and hope you feel better very, very quickly.

Sending you a warm hug,
Donna

[Flore]

Kara

First I want to tell you that I feel that you are a very sweet girl!!, thanks for all

Ok, your poem is very real!. I don´t know if people know what important is for us the dr. I mean, each time that I had to go to his office, he have to check me, and at first it was very embarrassment, but with the time I "looked" normal, and the relationship must be of confidence, I really love my dr. If I called dialy, dialy responded my call, and when I was at hospital he was very nice!!, sometimes I really looked worried when I was on flare, or when I called crying. When he told me that he had to move to another city (because the army sent him), I felt very sad!!

He is going to help me (via internet) with my support group, so I´m going to continue in contact to him

The dr. that is watching me now is his partner, and he saw me in the hospital too. So I hope that he´ll be very nice with me too!!

My husband and I ARE MARRIED, I loved him so much, we have 17 years married, and we began our relationship since I was 15, so we are together for almost 23 years, and we have 2 beautiful kids, a girl, she is 15, and a boy, he is 11

The problem that we have is with a car that sold 2 years ago, and a man stole us, Is very complicated, but I hope that tomorrow everything will be fine!!

Donna:

The problem now, is that the man who bought the car, doesn´t want that my husband pay the taxes, he wants the money. My husband can go to jail, becuase for mexican law, my husband sold a car with false papers, and this is jail!!!!!!!!

Now he is with a lawyer, and tomorrow they are going to pay the taxes, and if the guy wants to sue my husband he will have to say that my cousin received the money. If you look, the problem could be too, A FAMILIAR PROBLEM, she is like my sister

I don´t want to think more, I (and my bladder)hope that tomorrow everything will be ok

I feel very happy to be in a group like this, becuase you understand me very well (I´ll promise that when I have time I´ll go to english classes)

Today I only went to my office for a while, because I felt tired, so I picked my kids up and drove to my home. Inmediatly I went to my bed and my made (I really loved her, she is with me since 5 years, and is my completly happiness) took the lunch in my bed, and attended my kids all the time, because I slept all the afternoon!!

Thanks to both of you, and pray for my husband tomorrow!!!!!!!!!

[Patrice]

Kara,
I get so mad when I hear things like this. What right do people have deciding what you should be able to "deal" with? I;ve never heard men being told to "deal" with impotence instead of getting ****** and that's not even painful! AND back in the old days the doctor would have made the choice, not you. I don't see where you had a choice at all. It's ridiculous! I had a laparoscopy and a cystoscopy last year and was in severe pain and people made fun of me and said it was in my head. Two weeks ago I had a cyst removed from my foot and because I have a big blue shoe and crutches, I get all sorts of questions, help, etc. It's not fair! What do you say to these people who let on that you "copped out?"

[KBee42]

Flora,

I'm so sorry that someone stole from you. And I'm so sorry that it's a problem that brings in not just you and your husband, but your sister as well. I hope they find the guy that didn't put the payments in and they put him in jail. He's the one that stole from you.

I will be sending you all the very best wishes I can think of. Try and hold on if you can and I'm very glad that you were able to get some sleep yesterday.

Keep us updated!

Krissy

P.S. - I think your English is excellent. I have no problem understanding what you mean. smile.gif I would never do so well if I had to type in Spanish.

[Kara]

Patrice,

I wish I knew what to say to those people whom make us feel weak and lower than they are and you know, as soon as they get sick, the whole world has to stop revolving for them. But they can't give us a break when we are sick........

I hate IC so much!!

It destroyes so much of what we were tryig to make for ourselves.

At least we can come in here and be safe from most of those people who ridicule us and make us feel like we are idiots.


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

[Flore]

Kara

I was thinking a lot about IC, and you said "I hate IC", but I don´t know if I hate it!

I want to explain better. For me is very uncomfortable have it, and I cry so much and when I´m in flare I can be very angry, and tired,and with a lot of pain, and a lot of things that everybody knows!!!

Last december, when I was at hospital with a kidny stone I was very depress, because my husband had to go in January to Cartagena Colombia, and he wanted I gone with him, so of course I couldn´t. My sister was with me and said "You have been working for a lot of time, and now Pablo is fine in his job, why don´t you leave your work and do wathever you want with your life", and I was thinking, and thinking, and I responded to me "No, I realy want to work, but I want to (I love my actually job, ok?) do something else, I want to help women"

In that moment I didn´t know excactly what I wanted!!, because I wanted something different

5 months later I was diagnosed with IC, and I was in shock!!, because I was feeling very bad, and I was in flare every day, and I couldn´t work. So I thougth "With this "#$!/& disease I CAN´T DO anything I want, I can help my self, I won´t help anybody!!!

But now, I´m sure that God have a reasson (???) for do the stuff in our lifes!

I don´t know if you understand me, I meant, if I wouldn´t have Ic, I´m not here now, chating with you!!, I wouldn´t have to practice my english

Now, today Donna told me that I´m going to be moderator of the section (Cistitis Intersticial en Español), and belive me I´m very happy!!

I´m working so hard to creation of my suppot group, AND I´M GOING TO HELP PEOPLE, exactly this is that I wanted, but at that time I didn´t know what was that I wanted

And the most important is that I´m member of a group that understand me (ic-network), and can talk and chat with all of you!!!

So I think, that everyone has to sit and think what is the possitive stuff in this negative disease. THINK AND ALL OF YOU WILL BE SURPRISE WITH THE DISCOVERY!!!

[ladyroadkill2000]

I'd like to know if you have the bladder removed does that take away the bladder diseaas then also?I'd let them have mine in a heartbeaat if i knew it would stop the pain.if anyone could let me know how it is now w/o the bladder i'd be much abliged. cool.gif

[KarenK]

Flore, I noticed in your first post that you said you had to go to several restaurants and other places before someone let you use their restroom. The ICA has a Restroom Access Card that you can get through the website (it might be free or cost a dollar or two, I can't remember). It briefly explains IC and the patients need to be able to use a restroom immediately. I don't know if there is a spanish version or not...if not, maybe you could suggest it. Just a thought

LadyRoadKill, I have had my bladder out for almost 6 months now. I am already having kidney problems and will be going in to have one of my ureters opened up (scar tissue formed and is blocking the flow of urine out of my left kidney).

I have an ileal loop conduit which requires wearing appliance. The decision to have the surgery was ultimately mine after I have tried everything else. I had urgency and frequency since I was 18 month old (per my mother and old medical records). The pain started when I was 21. Bladder out at 40. I don't regret having my bladder and urethra removed. I do greatly regret not thinking to be allergy tested prior to surgery. I am allergic to all of the pouching materials, pastes and tape. I was stuck between two urologists...the "specialist" who said he would never remove a bladder for IC and my local urologist who said my bladder was no longer functional and had no problem with removing it but only knew how to do the ileal loop diversion. My insurance company said I already had my second opinion and would not pay for an opinion by a third doctor. Now doctor #1 (the specialist) is debating whether or not to convert my loop to an internal continent pouch (which although it would require a stoma cap or 4x4 to catch mucous/small leaks, would not require an appliance). He says it is the diversion that should have been done in the first place because of my age, size and allergies. Of course the allergies were unknown prior to surgery.

As far as pain, my urethra was as bad as my bladder and I am greatful that I can now sit in a chair. I occasionally have "phantom bladder"...feeling like I have to "go" but it passes quickly and is not severe. It is usually brought on by constipation or abdominal pressure. The pain now has shifted to my kidneys and to the peristomal area. I am taking narcotic pain meds still and the constant leaking, changing and skin mess is discouraging. As far as I am concerned, having the bladder out for IC is like flipping a coin. Some people do great and others have constant problems. It is hard to tell who will be who.

KarenK

[Judith]

LadyRoadKill, I had my bladder almost 17 years ago for IC. I had frequency, urgency, and was even wetting my pants without being aware that is was happening. Pain was not an issue till about the last year of having my bladder. Once they took out my bladder and urethra the pain was gone, so was the frequency. While I do not regret in anyway having the surgery, I have been faced with serious urinary infections that I need to be hospitalized for, I have had bowel obstructions and a few other things because of the surgery. Still, I would do the surgery again in a heartbeat, since these problems are not a daily thing. I do have periods of being fairly healthy and I am no longer a slave to the bathroom.Just as IC can manifest itself differently in different people so is the outcome of the surgery. Some do great and others just seem to continue to have problems. Judith <img src="graemlins/bunny.gif" border="0" alt="[bunny]" />

[Flore]

Karen, I was reading about ICA card, and I thing is great, but in México this not operate

Here a handicapped can´t travel in a public bus, because it doesn´t have a special ramp!!

You can see that here is a long way to go with IC

Thanks

And I´m reading about the experiences of bladder removal and I feel bad for all of you!! and I want to tell you that I admire everyone, because after all you never give up!!

[Kara]

I hear you Flore and I am so happy for you to be moderating that board. I hope lots of people come your way and give you an opportunity to share you wonderful words and strong heart!

I pray that your IC tames itself to make your life more livable.


Love,


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

[Kara]

ladyroadkill2000,


As of today 3 months later, I do not have IC. I do have my old urethra though which scares me. I don't want the IC to come back. If it does, I will have another continent urinary diversion but not using the urethra, using a stoma instead. But my doc says I won't need this as he cleared IC out of every crevice he could find! I pray that he is right!


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

[lm2]

Kara I fully agree with what you said in your first post. Is it ok if I email you with some questions?

I don't fully understand the capacity requirements for having your bladder removed. I have read some doctors say they reserve that only for cases where your bladder is like a walnut. Well my actual capacity is ok but functionally we're talking drops - I go to the bathroom 20+/day and 10+/night and the pressure and pain is 24/7 and has been like this for years. I have zero quality of life. I wonder then if they would deem me an unsuitable candidate. That would really bug me. I have tried basically everyting except the interstim. Anyway my doctor sounded really pessimistic about the outcome of a cystectomy - she said 40% of people will remain sick. I wonder if it's a function of what doctor you go to. I'm afraid of the risks and will definitely have to research this further. But I'd rather do this than die and I know I can't live with this anymore so I don't get how any doctor could not appreciate that. frown.gif

Also did anybody who had their bladder removed have urethral pain? I have a ton of pain and pressure coming from my urethra and am afraid then that removing my bladder won't help that since it's not from the bladder itself.

[Judith]

Elm, I had urethral pain and when I had my cystectomy they also took out my urethra, The paiin was gone and has never come back! By the way I have a continent urostomy with a tiny stoma that I catheterize 4-6 times a day. It is wonderful. Judith

[lm2]

Thanks Judith. I'm glad to hear that it is possible and that it helped you. I'm still a bit confused on the logistics of how it could be done (the only site I read talked about removing the wall of the vagina and all these other parts and I think I got overwhelmed). I think I'm just afraid to research more or to ask my doctor because I feel like they're going to tell me it's not possible or won't make a difference and i'm terrified of that prospect because it's sort of my last hope. frown.gif

[Kara]

Elm,

You can email me with any questions you have.

It's klreese@attbi.com

I specifically asked my doctor to cut the nerves to my urethra during my surgery so I would not have to feel pain there anymore. He said that it was already a part of removing the bladder that it would be automatic. When they remove your bladder correctly, you should not feel your urethra anymore and yes, it is part of the bladder they are connected to the same tissue that had IC in it. I still have my urethra (just can't feel it) I still have my vagina and all of it's parts. I am only 26 and planning to have a baby next year.

Yes it is about the surgeon! I went to 1 in 5 surgeons in the United States whom perform the neobladder surgery. He's an incredible surgeon and all of his bladder removal cases including mine, are doing WONDERFUL!!!! I owe him my life! It's important that you get an incredible suregon or else you will be one of those patients that still has problems afterward.

I've had my neobladder for 3 months now and I couldn't be happier! No urgency, no frequency, no pain, no retention pain. I don't even know it's there. I would not trade it for the world. I catheterize my "new urethra" that had the nerves cut and I feel nothing when I do it. I catheterize every 4 hours at the moment.

As far as bladder capacity goes, did you try everything including the Interstim? Nerve Blocks, Pain Pumps, Pain Meds (all of them?), and Nerve stimulators for pain?

Bladder removal must be the LAST resort. You can also have your urine diverted with out bladder removal. That may be the best option for you, seeing that you have a good bladder capacity. Mine was the size of a walnut and could only hold 3 ounces.

Email me and let me know your story Elm, and how you are coming down to this big decision. I will be glad to answer all of your questions! I will help in any way I can.

klreese@attbi.com


Best Wishes,

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

[KarenK]

Hi Elm, I also had my urethra removed along with my bladder. I no longer have any urethral pain. Before, I could hardly sit down and it hurt to walk. I have an ileal loop diversion (an incontinent diversion that requires wearing a pouch on the outside to collect the urine). Although I have no IC pain, I am allergic to the materials in the pouching systems and have not been able to find one that I can wear without breaking out (which leads to blistering and then the pouch won't stay on and I leak). No one ever suggested allergy testing to me prior to surgery but it makes sense since so many folks with IC have alot of allergies. If you find a doctor who will do a cystectomy and is willing to give you a choice of diversion, get the allergy testing done. It will help to make your decision easier.

As far as removing the urethra, my surgeon did mine internally as opposed to approaching it through the vagina. It took him a bit longer to do it that way, but I had no vaginal cuts or sutures which was nice.

KarenK

[lm2]

Thanks everyone for your replies. It's nice to know there is a chance I could get relief. A lot of my urgency and pain comes from my urethra but the first couple of years I didn't have that at all so it must be the whole region is a mess. frown.gif What would be the reasons a doctor would decide to do the kind with the pouch rather than the neobladder. I guess it is less risky?

Kara I actually emailed you last night before I saw this message - hope that's ok. I explained a little but not much about my story. I have not tried the interstim or pain pumps. I just don't think pain pumps and that kind of stuff will help me as nothing helps with my symptoms of pinching/pressure, etc. even if they take the edge of the pain and I still have zero quality of life. My first year I was sick I had no real pain (well a little where I think they did damage in my urethra during a cystoscopy - that's why the cuttin nerves thing made me nervous as I thought that is what happened) and I was already a basketcase but since the urethral pain and pressure started it's been 10X worse. I don't even know where the pain is coming from as it feels like it's in front of the urethra but hopefully it is just referred pain and can still be treated. I went to the doctor for an interstim trial twice and had a terrible experience that I really don't want to go back to him, but he's the only doctor here that does it. I just know in my gut it won't help. My bladder feels raw and stinging and just so wrong, I can't imagine how some nerve stimulation will make a difference in that. He also shook his head when I showed him my voiding diary (this was in Feb.2000 and I'm much worse now) and said this is a bad case, it isn't going to be easy..etc. frown.gif

How does it work to have your urine diverted? I think if my bladder is still there it will still hurt. I remember someone on another message board once talking about having severe pain from having a bladder that wasn't operational but it was still routinely shedding cells and it sounded horrifying.

[Kara]

Elm,

It's the doctors surgical skills and your anatomy that determine which way they will divert you weather the put it in as a pouch you cathererize through a small hole in your abdomen called a stoma, or weather they use an internal pouch like mine that I cath through my urethra, or wether the decide to have you wear a bag. I was fortunate enough to have a doctor whom knew how to perform the neobladder. He said that he wanted to preserve my looks as much as possible. I am only 26 so I did not want a stoma or a bag.
I will email you in a few minutes.

As far as the bladder removal, if you have THE BEST surgeon you should have no trouble with the IC coming back. They will surgically remove all of the IC, if they are immpecable surgeons and are VERY careful! The patients that see my doc have been IC free for 13 years, 9 years, and 7 years and now me.....


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

[lm2]

Thanks so much Kara. smile.gif

[DebbieD]

Hi! I was one of those Severe Cases that I had to have my Bladder removed. I had it done two mOnthe before I got Married. I have had my urostomy now for 18 years. Also been Married to the Same wonderful Man for 18 years. You are Right, it does not chage anything about you,

There is no such word as "I Can't"

I have had alot of infections but it does not get me Down.

DebbieD

[Judith]

ELM,
You should not feel scared to ask your doctor a question. That is one of things you pay them for. Maybe if you write down your questions and practice asking them to someone it will be easier. If you are still uncomfortable maybe you might want to find a doctor who you feel more comfortable with. I have also found when asking doctors questions, that if you let them know this hard for you they are more likely to be sympathetic. The United Ostomy Association has a web site with all kinds of information about the different types of ostomies and you can also go to www.ostomyalternative.org. (http://www.ostomyalternative.org.) That is a web site devoted to continent pouches like I have. Judith

[lm2]

Thank you again. Judith my computer seems unable to read the message board at the link you posted but I will be checking it out when I can. It's 6:50 right now and I've been up since 4 so I can barely focus right now but of course I can't sleep either.

Kara did you send me an email? I didn't receive one. I have the private message thing checked off too if that is easier.

[Kara]

Elm,

As soon as I empty my bladder which will be in about 10 minutes, I will email you. If you are interested in checking out bladder removal there is a site I have been going to for a year now to help get me through it.

This site is for cancer patients undergoing cystectomies. But it doesn't matter, bladder reomvoal is bladder removal no matter what the reason IC or Cancer:

This site I used to no end and still use

http://blcwebcafe.org/cystectomy.asp

This board gives you information on the following:

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

Just look on the right hand side of the page and click which ones you want to know about....


I hope this helps!

I have a neobladder a bladder that I catheterize from my old urethra.

Kara


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

[lm2]

Kara I am still confused about the incontinence thing???

Also I don't understand about how when they say people with new bladders can get IC in them or the pouchitis thing. Doesn't this point to IC being some sort of infection? If it's a question of removing all the IC damaged tissue, what do I do if my urethra has IC too? Because if they leave it in, will that mean it will spread to my new bladder?

My last question: Does anyone know what are the long term risks of this, like to the kidneys and things like that. I'm really young to be doing this so it could be there for a long long time.

[Judith]

Elm, you doctor will be the best resource to find out about long term risks. I had my bladder out when I was 30 and I am now 46. Having a continent internal pouch will reduce any possible damage to your kidneys as they are bulit with anti-refluxing valves, so that urine will not back up into your kidneys. The only other long term risks that I am now faced with are that I need to get B-12 shots every month for the rest of my life because I am missing the section of bowel where B-12 is absorbed, but that is not true for everyone. I have had multiple surgeries for the IC because this was mostly all done a long time ago, before they knew what they know now. Judith

[traci adi]

Kara how long did you take all of these meds? What do you take now? This may be a personal question but have you has sex since the surgery? How about the urethra? do you still feel it?
Also from what I was told by my uro (who is not a great one) that your bladder gets smaller and smaller the more you let into the constant peeing and that the worse thing we can do is keep peeing so did you hold it as long as you could and your bladder still shrunk? I would like to know this because I try so hard to hold it so long and I feel like now over time that I am getting worse and worse and not able to hold it very long anymore, not like before. So are we all doomed eventually or what? I have read everything about IC and even the bladder retraining and I don;'t think it has done me a bit of good at all. I saw your pics after the surgery and just wondering what you think about this and why your bladder shrunk that small and you being so young like me I am 29 not too far from you, but when did you get to the point where your bladder got so small like that so fast. I feel I am grtting worse and worse and want to die. I swear bladder removal keeps popping into my head but it is so permanent and what if it does not work? What if I still have these symptoms? Also we you under alot of stress from your family? did you have a suportive spouse about your IC? Did you get worse from stress? I am so sorry so many questions but I feel like I want to die or cut it out myself sometimes. But I worry about long term, what do they know about long term when you do not have a bladder? what about kidney infections and kidney failure? that is what I keep seeing everytime I research it and that it only lasts about 15 years. this scares me. what happens after 15 yeras? do some people die from it or get kidney failure? again so sorry so many questions but I know you researched it so much. were you scared? are you worried now? have you had any problems from it. I am new here. you joined my group once and then left so I never got to ask you these questions. it looks good to me sometimes but the fear of the unknown keeps freaking me out. do you leave out your stoma site or do you just cath yourself? if you cath yourself do you have to make sure you are very sterile and use a cleaning preparation? also do you worry about urethral strictures and trauma from cathing so much?
Okay no more question.
Thanks so much if you can answer any of these,
Traci

[Yvonne]

Hi,

I am unfortunately one of those people with severe Ic that have had their bladder out and ended up getting my urethra out soon after due to end-stage IC. I think it is important for people to realize that there are many that these things help and a very few who no amount of treatment helps. I have non-remitting pain 24/7 and am in the hospital constantly with kidney infections etc. I only have one kidney so it makes it that much worse. I have regretted getting my bladder out and having the augmentation as I am worse off now than I ever was and have an ileo conduit. If I would have known then what I know now and how sick I have been I wouldn't have had the surgery. I really didn't have a chose in the matter as my bladder and urethra were so diseased and had been that way for years. I blame the doctors for not finding out my IC before it totally destroyed my bladder and urethra. Good-lcuk to you all.

[Kara]

Elm,

I am 26 and young as well to have done it. It was bar far the BEST choice I made! My doctor took out the bladder which contained IC in it and he also cleared out my urethra of IC. Will it come back? With this doctor's incredible surgeon hands, most likely not. He has 4 of us whom are doing incredibly well. Not one of the 3, one was done 13 years ago, one was done 9 years ago and I think one was done 7 years ago, and then me, on June 14th, none of them have had IC. Imagine not to have IC for 13 years! So in answer to your question about pouchitis, none of us have it. But you MUST find the BEST surgeon you can in order to insure that you won't have problems after your bladder has been taken out. As far as the urethra thing goes, when my doc took my bladder out,he also cut the nerves to my urethra so I can't feel it anymore, so self cathing is not a problem. I do it evey 4 hours. I have to have a timer with me at all times because I will forget to empty it without it because I have no pain, urgency, frequency, or retention pain.

My fate has not yet to be determined. I pray to GOD that my IC never returns. If it does return I will have them remove my urethra and I will then use a stoma.

As soon as I get my new email you can email me and I will be happy to discuss any further concerns or questions you may have.

I will see my new doc October 9th and I will go through and ask him all of the questions that you have all brought up!!!! He specialises in end stage IC. Hopefully I can come back with some great answers for you!

Love,

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

[Kara]

Traci,

I am going to try to answer all of your questions to the best of my ability at this time.

Kara how long did you take all of these meds?
(some of the meds I took only for a day or two especially the ones that caused urgency and retention, some of the meds I took for years.

What do you take now?
( Now I take Elavil to sleep, Neurontin for depression and pain, Buspar for anxiety, inderol for anxiety, Ditropan so I do NOT leak urine out of the new bladder, Alesse birth control continuous so I don't get any periods, Zantac to decrease the amount of mucous in my new bladder, and Darvocet for occasional surgery pain)
This may be a personal question but have you has sex since the surgery?

How about the urethra? do you still feel it?
( I can't feel my urethra anymore becuase I asked my doc to cut the nerves to the urethra so I don't feel it anymore. I catheterize myself every 4 hours. It doesn't hurt like it did when I had IC.

Also from what I was told by my uro (who is not a great one) that your bladder gets smaller and smaller the more you let into the constant peeing and that the worse thing we can do is keep peeing so did you hold it as long as you could and your bladder still shrunk?

(My bladder still shrunk down to only be able to hold 3 oz. I don't know why this happened........maybe my new doc will be able to answer this question. I will let you know.)

What if it does not work? What if I still have these symptoms?
(I took the chance that it may not have worked. I was ready to die, so I had nothing left anyway 76yuso I decided to go ahead and get rid of that nasty non functioning bladder. I took the chance and the it turned out to be the best choice I ever made for my IC)

Also we you under alot of stress from your family? did you have a suportive spouse about your IC? Did you get worse from stress?
( I think the stress did make my bladder worse but there was nothing I could do about it. I was a high achiever trying to get straight A's and be perfect where ever I went. This ended up killing my bladder literally! My family was supportive but skeptical. My husband was my greatest supporter after he accepted the fact that I needed to have the bladder taken out and then my whole family came around as well at the end.)

Do some people die from it or get kidney failure?
( I have yet to hear of someone whom has had kideny failure from having their bladders remvoed. Lots of people have their bladders removed for other reasons including cancer. None of my doctor's patients had any kidney problems or kideny failure.)


Again so sorry so many questions but I know you researched it so much. were you scared? are you worried now? have you had any problems from it.
( Yes I was scared. I am not worried now. I don't have any problems that can't be handled. It's not like having IC. It's 100% different.) If you go to the post that says "Goodbye Bladder" you will see my feelings there.

I am new here. you joined my group once and then left so I never got to ask you these questions. it looks good to me sometimes but the fear of the unknown keeps freaking me out. do you leave out your stoma site or do you just cath yourself?
( I catheterize my old urethra)

If you cath yourself do you have to make sure you are very sterile and use a cleaning preparation? also do you worry about urethral strictures and trauma from cathing so much?
(yes to all of the above. I have a new uro appt. because I moved on Oct. 9th at which time I will have him check out the new bladder to see if it's working correctly and to see if there is any scar tissue for catheterizing.)


You can always ask questions. If you give me your email I can email you some information in further detail.

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