A brief about me any advise please! Bladder Removal?

[Hanneke]

Where do I start? The reason for contacting you is that I am researching about having my bladder out and I came accross your story.

I don't have a straight forward diagnosis the only thing I do know is my problems are very similar to IC. I have had pain since the moment of my birth I know this becuase my mother said i cried the all the time and would not be able to wee, she said I would cry and cry for hours until she heard a popping sound which sounded when I would finally do a wee, the doctors told her babies don't just not wee!!!

Right through my life I have put up with this pain in my bladder like a poker or knife being stuck up there and turned and pushed in and out of the bladder which is debilitating to the point of wishing I had a wheel chair or walking stick (my husband has just bought me a lovely walking stick and it is great for when the pain hits like a freight train) the pain drops me to the floor I can't walk and my poor children just look at me and say mummy are you sore again? I have to sleep in a sitting possition as this is the most comfortable.

My pain is in the bladder not the urethera my latestest cyctoscopy shows my bladder like a piece of raw meat with ulcers all through the bottom and neck of the bladder oh man what am I supposed to do? I told the latest doc that I did not want my bladder stretched or burnt as it always stirs the pain up more, he just said if it needs doing he would do it with my permission. I hadn't been to a specialist for about 10 years as I was sick of doctors and was just riding the waves, so i decided that I would on his advise do what he thought the best thing to do, I had a Urodynamics test (this is like going into nightmare realm for me I had one done when I was about 10 or 11 I was strapped to a table across my shoulders and waist legs in stirupps naked and crying as they inserted the caterter and it hits the ulcers my body exploded in pain I can remember screaming and crying dad said he had to take my brothers out of the building and they weren't even in the same room, so needless to say I was nervous to the point of I don't know what, to this day my mind still churns about this event) anyway I agreed to have this test done again I requested twilight medication so I would not remember this time but they said the test would not be accurate as it would relax my muscles!! The test was done and it was as I remembered the staff couldn't belive the pain it sent me into, I was to go under an anesthetic after this test for the cystoscopy and dialation and burning the pumped drugs into me while I was waiting in the end they just cleaned the theatre room out as quick as possible and put me to sleep.

All was done that I preferred not done while I was asleep (I did give my permission) as I recovered if you could call it that over the coming weeks as I told the docs I got worse.

Day to day now is pain 90% of the time and 50% of that time I am unable to move, I do my house duties and mother duties as best as I can but with extreme difficulty.

There is a twist to my story..

I have three georgeous children (doctors told my mother I probable wouldn't or shouldn't have children I apparently let this go in one ear and out the other) James 9, Aimee 7, and Chloe Rose 3.

The twist is when Aimee was born she too couldn't do her wee at about 3 months this started for her I rang the local hospital one Sunday in desperation wanting them to help her pass her urine and history repeated itself and they told me like 20 odd years ago they told my mother babies just don't stop weeing! My blood boiled anyway this is such a long story I will cut it very short if you want to know more just ask but I convinced a doctor to belive me after many dreadfull tests on Aimee which a mother would not let her child go through unless she new there was something wrong was diagnosed with EEC syndrom along with myself but this did not help us much it gave no answers just made the doctors listen more because it had a name. Aimee is now a very well child at about 2 1/2 she was doing all her urinating although would spend hours on the potty even sleeping on the potty.

We then had Chloe who unfortunatly also has EEC syndrome we knew from the moment she was born she had it as she is missing a finger which can be part of the syndrome, we are still catherterising Chloe once or twice a day she experiences a whole lot of pain, I didn't mention in Aimee's paragraph above but they also experience bowel pain so my husband and I spend probable 5 nigths out of 7 comforting her most of the time it is my job as Michael (The best Husband in all the world) has to sleep to function at work thankfully he is selfemployeed which takes some pressure of but as you know you still have to make a living even if you have a sick wife and child.

I am in pain, I am not getting sleep, and I have a sick child I am only 32 I have been to doctors all my life including trying numerous alternative medicines and treatments, we have come back from a three week holiday which was fantastic but I was in pain ever day and night Chloe spent most of our traveling time not on a booster seat but a potty (don't know what the cops would say if they ever pulled us over).

I now ask myself should I get my bladder taken out?

What is everyones thoughts on this?

God Bless

Hanneke from the land of Oz

[ICNDonna]

What is EEC syndrome? I know a little about EC, but am not familiar with EEC.

Donna

[Hanneke]

Hello Donna

Thank you for your question below is a brief outline of EEC, but the doctors are not convinced that my bladder problem is part of EEC...even though my two daughters have and had bladder problems plus I didn't mention before my father had the same pain as me from birth and has EEC his problems vanished at 21! no one knows why.

Ectrodactyly-Ectodermal Dysplasia-Cleft Lip/Palate (EEC) Syndrome
Ectrodactyly-Ectodermal Dysplasia-Clefting (EEC) syndrome is a type of ED in which there is congenital absence of some of the fingers or toes, features of ED, and cleft lip or palate. While both hands and both feet are usually involved, exceptions have been noted: only one hand or foot may be involved. Abnormalities in the development of tear ducts can cause excessive tearing or a failure of the tear glands to develop may cause inflammation of the eyelids, cornea, and conjunctiva. Intolerance of light (photophobia) may occur. Skin and hair may be more lightly pigmented than normal, and a variety of hair problems may be experienced, from sparse hair to thick, unruly hair. The nails in some, but not all, people with the disorder may be abnormal. Various renal problems have been identified in individuals affected by EEC, but great variation in the type and severity exist.

[Katrina]

:welcome: to the ICN!!
I am sorry you and your children are suffering!! :grouphug:
EEC syndrome ?

http://www.ic-network.com/forum/showthread.php?t=25908 alternative start thread
http://icandme.9.forumer.com/index.php?showtopic=6 pelvic floor dysfunction (PFD) learning to relax the muscles treatment options symptoms of PFD and more

:grouphug: Sounds to me like you and your kids have retention even as a baby....that is not a normal symptom of IC but it can happen from pelvic floor dysfunction....but that is pretty odd for a baby to have....I hope the members that have IC genetically can let me know if it makes more sense for them. Normally PFD comes from "trying to hold it" which is something babies usually have to learn to do.

I really have no idea if sugery is a good option for you. My guess is that bladder and urethra removal may be the kind of surgery you would prefer but again...I do not know if it is what you need or not.

[Hanneke]

What is an Indiana Pouch? have you got one?

[ICLori]

I can certainly understand the desire to remove the bladder to get rid of the pain. Before the Cyclosporine-A kicked in and gave me a remission, I was really considering bladder removal. I wish you the best of luck.

Blessings,
Lori

[Trishann]

I am so sorry about what is going on with you and your children. As a mother I know that must be really hard to see also your children going through the same thing.

As for as having your bladder removal, I don't think I am capable of telling you what is best for you. Your other health condition is involved too and this is something that would be between you, family, and doctor. I would hate for you to make a decision and not knowing all the facts. When you have other health conditions, you have to consider it too, would this be a problem if I go this route. It is really good you are seeking answers and doing research on it and maybe you can discuss this with your doctor also.

I hope you and your children find comfort too. I can't even imagine the strength and courage you have had through all of this. It does sound like you have a wonderful and supportive husband. You have more courage and strength than what you think and you just keep on searching for answers.

Sending many hugs to you and family, Trishann

[Kara29]

Before Thinking of having your bladder removed.

I will caution you to try as many things as you are comfortable trying, first and see as many doctors that specialize in as many things as far reaching as Neurologists go. Write it all down, what works, who you like as a doc and who you don't and who you think has some answers and who does not. It's like a huge backward and upside down complicated puzzle and sometimes the pieces don't always fit together at first but then if you step back at it in a different way, you may get one piece that fits the puzzle but you still have to put the whole puzzle together first before you move.

There are several combinations that are endless for other things to try, some combinations work and some don't. It's just like the puzzle. Keep at it and you may just stumble across the right fit. Some therapies are controversional and may feel wrong to you, if so don't be afraid to say so. Your doctors should work with you on this and understand if you don't want to try something. Have you tried Antihistamines, Antibiotics, Antidepressants, Prelief, Algonot & Cystoprotek, Instillations - DMSO, Cystistat, Heparin, Rescue Instillations, Nerve Stimulation, Interstim, BCG (Bacillus Calmette Guerin), Cyclorsporine, Botox, Pelvic Floor Therapies, T.E.N.S Therapy, Diet & IC, Alternative Therapies, Estrogen & Hormone Replacement, Exercise & Fitness, Pain Management (The possibilities are absolutely endless with the combinations of pain medications you can try). You have so many choices and combinations with what I just mentioned and it can take years to find the right combo and doctor. What I am trying to say is that it is vitally important to keep fighting with different treatments and to not give up too soon on any of them, unless they feel wrong to you or are hurting you in a nagative way. Some of them take 6 months to a year to work or longer. Some of them need adjuncts (other meds added to them in order to make them all work efficently together).

Also if you ever do go down the bladder removal road. Do the research first. I, as well as the other bladder removal patients will be happy to assist you with this.

Bladder Removal needs to be your VERY LAST OPTION LEFT!

It's important to be realistic when talking about this subject. Yes bladder removal can help people and yes it has helped me and I hope that it continues to do so, but I have to be ready for anything that is around the corner. This is a serious operation that requires a lot of thought, attention and care. Things can change on a moment's notice even after it has been removed and you have to be prepared to deal with that and what it can do to your life and your body.

Also, it is 100% important that you have a lot of support to take care of you after this sort of surgery. This type of surgery requires a lot of help from family and friends. It also requires a lot of time and in some cases, money. You may need months, I still have not gone back to work yet and don't know if I ever will. And home health aides don't really exist anymore. Visiting nurses just come and take blood pressure and sometimes change and check dressings. This all depends on your insurance company too. This surgery also can require some mental health therapy. Your body will NEVER be the same after you do this surgery, you can't turn back. Things happen to you that are new and scary and different and sometimes it requires you to see a therapist too, to get through some of the changes your body and mind will go through.

Please take some time to read this carefully and understand that I am trying to help by giving you other options first. You and your Doctors/Urologists need to be open minded and not afraid to jump in and try all IC treatments and possibly alternative treatments that you can and are comfortable with, so that you know you did it all and tried it all and that there is no doubt in your mind that you are making the right choice.

Please think about this and talk with others who have had it done and talk with your doctors extensively. It would also be good to have a definitive diagnosis of IC first. You could have other issues that are just like IC.

I've had my bladder removed and reconstruced as I had no other options left. Both surgeries were successful. However I have some pain due to another issue that we are working on solving and treating. I am not for or agianst bladder removal. I just want others to be as informed and educated as possible. My last surgeon was incredible! There is more than one doctor in the US who can do this surgery and do it well. If you have to have your bladder removed after all is said and done, It's best to talk to those of us who have actually had the surgery as we can give you a better idea of who and what we feel helped us in our journey.

Sincerely,

Kara

[Judith56]

Hi Hanneke! Welcome to our corner of the world. I see you are from Oz, I know some people there. If you don the diagnosis of IC I think the best would be to find a doctor where you live who can properly diagnose it. On this site you hopefully find someone clost to where you live that is knowledgable with IC. I had the disease all my life and finally when I was 30 I had to have my bladder. I resisted doing it for a long time- my doctors had to convince me that it had to be done. I am glad I had the surgery, but I do feel it is best to try everything out there before you go ahead with the surgery. Once you have it there is no going back. Sorry you are also dealing with problems with your children. I hope that you are getting the help you need in that area. There is a website that originates out of OZ it is www.ostomates.org You may find others on there who can put you in touch with doctors near to you. Even though the site is for people with ostomies I do know that therte is one woman on there who lives in Australia that had her bladder out for IC. She may be a good resource for you. Judith

[Katrina]

I agree with Judith on that site!!

[Hanneke]

Thank you to everyone who has given their thoughts on my situation, I have seen my local GP and he has prescribed a new medication just arrived here is OZ VISECARE I think it's called I have sent the prescription to be filled so if it's wrong I'll update later. HAS ANYONE TRIED THIS? Happy days to you all Hanneke

[Kara29]

I have surprisingly not tried that one! But I do know some other folks that have good results with it.

I don't know if your doctor has explained what it is to you or not.
http://www.drugs.com/vesicare.html

The only thing I would say to keep an eye out for with a medication such as this is urinary rention, the ability to not be able to urinary retention when you feel the need to.

Best Wishes to you! I hope you get some much needed relief from this medication!

Kara

[Katrina]

it is an antispasmodic...not one I have tried. It can help with frequency...which can minimize pain but not really treat it.

[blue angel]

I'am so sorry you are going through all that pain and also the children. My heart goes after you. I had my bladder removed on 5 dec 2006. ( 45 days to be exact). For 12 years I suffered with Interstitial Cystitis and my symptoms were pretty much as you described it. Iam pain-free, still adapting to this operation, but i can tell you that every day is a better day. My urethra was also removed, so I cath myself every 2 hrs. for now. Dont loose your faith. Blue Angel

[Pain]

WOW..this is amazing..as it always is to find someone "just like me".

I have had the severe 24/7 pain for seven years and then off and on my entire life before then with lots of bleeding always from the bladder, inability to urinate at all - huge blood clots, etc. I do NOT meet IC criteria as mine is horrific 24/7 pain and like you most days I am bed bound and have been for a long long time.

Like you I also pulled away from docs for long periods because NOTHING they did helped me and in fact the many surgeries and barbaric procedures I had over my almost 50 years have in my opinion made me much worse.

All that aside..I have cleft lip/palate syndrome and had found this POSSIBLE correlation too. Something about a locus on chromosome 19, in a region defined by D19S894 and D19S416. But it seems as you were told the results have been inconclusive.

BUT...I have always NOT fit into IC as mine has been severe 24/7 pain primarily not the other symtoms, NO FLARES because it's ALL THE TIME...and LOTS of bleeding..NOT from urethral syndrome (though it was destroyed by barbaric procedures/surgeries in the 70's and I can no longer be cathed at ALL by ANYONE) but from the bladder itself...the trigone area is like a bleeding third degree burn that peels every time I do pee huge chunks of lining tissue tinged with blood is what I pee most of the time.

Sadly I think it is now affecting other parts of my soft tissue as well. My eyes..my hair..my skin and my "gut" insides are all damaged/burned/painful.

Thank you so much for posting your story. I rarely find anyone I can relate to so much with my history and symptoms.

I used to think the severe problems I had as a child (lots of bleeding, clots, could not pee, almost died of uremic poisoning because a doctor said I just needed to relax and pee like a normal little girl - ended up almost dead in an ER as a huge blood clot had blocked me and my bladder wall gave way partially and leaked into my abdomen) we maybe due in part to an accident on a boy bike I had that pierced my urethra and damaged my bladder but I'll never know. The things that were "done to me" after that...are too scary to even type on here.

I don't have any family left alive, never married, no children and am an only child and with both parents dead I cannot confirm the genetic issue behind this possible connection.

BUT I am just excited that someone else with similar symptoms and desperation (I have been on the edge of suicide with this pain many times) found the same possible connection for us as I did.

Now the key is what if anything can we do to further this research?

What portion/symptoms of EEC do YOU have personally? How about your parents? My father and mother both had urinary pain but dismissed it..as it was not severe 24/7. Mother died of what they said was COPD but her LUNGS were normal...but her tissues in bronch tubes were not. Just like me not fitting into typical IC diagnosis, she did not fit into typical COPD/emphysema diagnosis. Father had all soft tissue organs compromised with burned/frail isseus and died of cancer that more than likely originated in his bladder (NOT prostate or lung as they were just sure it must have initially).

Sorry I have NOT had my bladder removed. I am allergic to so many things that a simple visit for a TEST to a doctor now is almost impossible. They FINALLY tested me and discovered I am SEVEREAL allergic to catheter materials..how about learning THAT ONE after years of torture. Even for a simple lap procedure..it took FIVE specialists to try and get a infant sized cath in me...I bled from that for THREE WEEKS..only in for about 30 minutes.

OK..too much info in the wrong thread..but as most I only read THIS thread when I get to that REAL deperate stage which is far too often these days.

Hugs and love to you..please post any further info you find out..I've always been interested in the EEC possible link to my cleft situation, etc.

[blue angel]

Pain: I have just received a reply from you but I think it was intended to someone else. I have my bladder removed about 2 months ago but i did not have half of the problems you are facing. My heart goes after you. if I can be of any help, please write. my e-mail is zoryoquendo@aol.com

[Georgia L]

Please tell me more about the cyclosporine drug?
Thanks.
Georgia L

[Pain]

My response was to the person who started the thread...Hanneke...you simply got a notification that a reply was posted here...

[~*~Christine~*~]

Please tell me more about the cyclosporine drug?
Thanks.
Georgia L
There is a whole section about the drug here http://www.ic-network.com/forum/forumdisplay.php?f=160

More info on it here http://www.mayoclinic.com/health/drug-information/DR202176

[marsi4]

Hi Hanneke,

I'm so sorry for your pain and suffering and that of your child's. I am trying to imagine how difficult it must be dealing with your own pain and have to ease the pain of your beautiful child too. I like yourself have been in pain since I can remember and are still trying to make sense of my condition. I have been diagnosed with mild ic but my pain and symptoms are severe. I may have in a ddition a neurological disorder. The only other symptom I share is the inflammation on the eyelids which acts up every once in a while, but I can deal with it and it is minor compared to my pelvic pain or bladder pain. I am also considering bladder removal but I am terrified of the results. I fear having no bladder and still having this horrible pain. I'm going to the pain clinic to do nerve blocks and try to better understand and detect which nerves may be causing this horrible pain. Hanneke, if you cannot take it anymore and are suffering enormously, I would consider bladder removal, but do know and keep in mind that it doesn't guarantee a painfree outcome. I think it is a chance we have to take in the hopes of ridding ourselves of our pain and suffering. If you cannot cope anymore and are at your wits end then I think your pain will be the deciding factor. I pray that if you do consider it that you will have good results and I wish the same thing for anybody else considering surgery. This is a very difficult condition to predict, diagnose and treat but we need to fight till the very end.
Please hang in there a little longer and hope for the best. You are very courageous.

Marsi4