Finally an end to this in sight :)

[dwdwdw]

:angel:
I have never been more hopeful.
I have been in the hospital for a week now in extreme pain.
They put tubes in my kidneys which drained thebladder that way and only 10% actually cameinto the bladder itself.
This was a test to see if it would make a difference or if the bladder is so badly injured it cannot even handle 10% of nromal output.

The headurologist was very sympatic and knew alot about IC and he told me after all I have gone through and my young age I am a good candidate for surgery.
He explained that it is not perfectly safe and all symptoms may not go away but its a great chance to recover from this illness.
He said he doest do thi soften at all for IC patientes, in fact he has only done 4 or 5 inthe past for IC.
He constructs a new bladder from the small intestine and it can hold my urine.
He told me since i have uretheral discomforts itsnot a good idea that i pee through my urethera but that it is left there and i empty myself through my bellybutton once every 4-5 hours.

The test with the kidney tubes was to see if the bladder can be left in next to the reservoiur or if it needs to go.
If I would have become symptomfree or alot better with the urine being diverted the bladder stays, if not it goes.

The test was painful but intersting. For the first few days I didnt have to pee for 30 hours, then 26 hours,..but that litttttlle bit that still hit the bladder sent enough discomforts for me to be in agony but the fact that my bladder reacted this well was a good sign.
After a few more days though my bladder adapted and got evenmore irritated to those tiny drops in the bladder and i got extreme frequency and the bladder was very sensetive so the tubes had come out, and symptoms went ack to the way they were before.

Now the conclusion was that the bladder did react to this, and that that little urine still upsets the bladder more then what is acceptable and the bladder sends fake messages that he has to pee.
If its surgery, then the old bladdeer will be taken out completely.

He had me talk to painexperts who said you have gone thorugh everything in the books and it has not helped, surgery is the next step.
We can help you recover after your surgery.
One was very familiar with IC.

Then back to the doctor.
He told me all patientes hesdone this procedure on has become just about cured and live normal lives today.
One couldnt even walk and peed 7 times an hour, now shes a proffessional soccer player.
There are risks but the outcome is usually very good he said.
You can be perfectly normal, you wont even have to carry a bag and you just have to drain yourself once now and then.

Once the decision is taken by us doctors to go throgh with the surgery, it shouldnt take more then 10-14 days to set it up for you.
You have suffered so much and so has your family and this is a very good solution we ecan offer to end your misery.
You are a young person who is extremely healthy you will recover very fast.
They have ruled out that this is caused by muscletension thorugh biofeedback for months, that its caused by nervedamage the only cause is actually the ruptures inside your bladder.
So it looks like it is finally going.

Now I have worked and suffered for years to have them remove this sick organ as many of you know.
My family started crying now when this loving caring doctor finally told methat thisis what he is going to do, and that he cannot see why i shouldnt make a full recovery with my thorough investigationand excellent overall health and age.

All that needs to be done is for the drs, staff and experts to make this descision formally and then once its taken i will finally get rid of this god darned piece of flesh thats torturing me!

It was so nice to have those bags onmy back the first day, though i had the anoying base discomfort, tonot have to go pee for hours and hours and not have the disvomfort increase, then i emptites 1.5 liters fromthe bags thinking woa i woul dhave had to pee 10 times for this..

So surgery is what is coming up sometime in the near future omg i cannot believe it!!

Now its really bad my symptoms i just got home and I am popping morphine just to get by, BUt this time I have a time line and I see the finishing line after all these years. I see it, and will see it evenmore clearly as soon as I get a decision and a date.
Regardless its going to be better then just waiting for nothing!

I might get this done in as little as two weeks, but with burecracy here it might take up to 5-6 weeks...but still that is my goal and at least I have one and I can now say okay I suffered through the day..one less day til surgery...and go on like that:) possitivey, not just sit and say great another day.

Now i just KNOW I will be better and feel relief:) i am no pain paitient and they say i have every chancein the world to succeed:)
This is me :woohoo:
this is my wife :woohoo:
and this is our unborn baby :woohoo:

I so deserve this, I have been pushing for this for so many yearsand its so nice that all the suffering wasnt in vein that the doctors now can rule outeverything else anddothissugery and giveit great chances.

The guy doing it is an expert, he told me it takes 2 hours to construct the new pouch, and 2 hours to remove the old bladder.
You will stay in the hospital for 10 days after or so, anditwill take one month ro recover.

Life is finally turning:) first news of a baby and now this:)
God finally decided i suffered enough! Thank you everyone!
And please dont post here about how risky this surgery is I know about the risks i just want to be allowed to be possitive inthe spirit the doctor and my family have been and is:)
Thanks guys oh and sorry about them mistakes i am a litle high on morphine still.
Going to go lie down next to my wife and our baby now..one day down, some more to go!

[vm]

I know next to nothing about bladder surgery so I definitely won't comment on that, but it's so good to hear you feeling more hopeful. I'm glad you are researching this surgery and hope that some others here who have had it will be able to give you some tips and so on.

Congratulations on the pregnancy, too! :) :) :)

[Rosalie]

Firstly, many congratulations on the news of your baby! How wonderful.
And also, I wish you every success with your surgery. You have a very positive outlook. Each day that passes is a day closer to your goal.
Good Luck and please keep us posted with your progress.

[dwdwdw]

Thanks guys!

Yes I have done my research for many years now and know all about it:)
Thanks for the encouragment thats what I need now, i know there are people who do not believe in surgery at all and that is fine, but I do and have spoken with people who has gotten better from this exakt procedure:)
For me it should be easy since i am young and health and my case is perfect for surgery since the only thing that is wrong with me is the inside of the bladder that the layer is practically gone and the wall itself has started to rupture in places.

I know pain paitients run a risk of not getting rid of their pains since its likley nervebased.
A person like me though who doesnt have pain just discomfort from the inflammation, the doctors tell me are almost certain to recover fully.

I mean he said with the tubes he "disconnected my bladder temporarily to see what would happen" and with the test, frequency almost completely gone, it only came afterhours when the little urine that does get in there mounts up to larger amounts, and the nagging discomfort thats always in the bladder since there is always a little urine in there.
But he definatley saw that as proof that surgery should help me, that my frequency went from severeal times and hour to almost 2 days.

He wanted to check with the tubes since he said that that was reversible, and a good indicatior as to wether surgery could help.

At least they are thorough:P

Thanks for being possitive and please keep it that way I need it.
I know of cases i was pointed to before of people getting recurring infections and such and had very hard times, but each case if different and mine the doctors feel canbe solved this way.
I know my body and mind best and I hvae just known that this would be the solution one day somehow it feels like its fate.

I will keep you guys posted on when i get my date and stuff.

I met a girl who had an extreme case of ic for 6 years in the clinic and she tried to commit suicide several times as a teenager.
She was now 23 and told me how this doctor had done the exakt same procedure on her and how it saved her.
She never for a second thought she could be almost normal.
After the surgery she said she recovered slowly gettingbetter and better for a few months and then now every day is just joy, she can drink and eat whatever she wants, how much she wants and not worry about a thing, cause she doesnt feel anything at all in her new bladder they made her.
She was so happy and said its so nice to say that i have had this terrible disease but dont anymore.
Doctors wont operate, only on very few cases they persistant people who have taken the time and effort and tried everything like me and this girl had done.

She told me people with IC told her dont get the surgery it will make you worse! What if it fails! Dont do it its madness! and people just discouraged her over and over again, people who actually hadnt had the surgery themselves.
Then she talked with a few people who had, and they had only good things to say.
One had had to go in to get her pouch repaired after a few years but that was about it.

So she decided to go for it and here she is today, healthy as can be.
It was nice seeing her there talking to me, she was just going in on a checkup.

She too told me to go for it, just like i said she told me "Theres a risk with everything. Sure there is a risk with this but what are your options? To sit at home for anohter 3 years getting worse just waiting and hoping? Feeling yourself deteiorate?"
Thats just why i have made this choice.

Awww guys I am so thrilled about this and now I get a chance to be better for most of my wifes pregnancy too I am so happy about that.

Possitive thinking can do alot, i havent peed more then 100ccs for the passed couple of months...today i held it for as long as I could and though it really bad discomfort i peed 550 ccs. Twice.
Possitive thinking, and the opiates I am on I think since they lessen the feeling making u take it more.

Ive told everyoneif my symptoms lessen with even 50 % i am so happy:)
But they will all go i am sure,e most of them anyway!

See you guys around!

[Trishann]

Sound like you are already for the surgery and this is what you want, I hope the best for you.

There are some wonderful people here that went through bladder surgery that can help you alone. Myself, I did not have the surgery, but I do know there will be a day that I will have no choice, unless a miracle comes my way.

Hope this surgery will help you find comfort and relief and able to enjoy life better.

Hugs and more hugs, Trishann

[Silverfern]

:hi: Daniel

Wishing you all the very best for your upcoming surgery. You definitely sound so much better knowing you've got a plan in mind for a hopefully painfree future. I just hope everything goes exactly how you want and you get to enjoy your days ahead as a daddy!

Stay in touch and let us know how everything goes.

Warm hugs coming your way!

[Imustpee]

Dw....don't you just love those PNT's? :lmao: I had them for months....I also had my bladder removed, and urethra in Dec. I cath through a stoma 2 inches to the right of my belly button every 4 hours. I LOVE MY POUCH!! :woohoo: And I DO NOT have IC anymore...:woohoo: .NO pain, NO frequency, NO urgency...NOTHING....where my bladder was is a " Dead Zone" I eat and drink whatever I want....please keep us posted on what's happening with you...there are a few of us that have gone the removal route, and we are here to support you any way we can.

[SharonA]

I do hope this is the answer for you. I hope you get complete relief, heal quickly and without complications. :) :) :) Hoping for the best for you, Daniel. Let us know when the surgery is scheduled. Start writing in a journal so you can remember everything about this journey.

[poetgirl]

I'm glad that the doctors have determined a way to help you. Bladder removal is a very serious surgical procedure, but as you'll hear from people like Lesa, Judith and Kara, they are much better off in the long run after having the surgery done.

Congratulations on your wife's pregnancy! How far along is she? (As you can see below, I'm also expecting!) That is very exciting and hopeful news for the two of you, especially after everything you've been through.

Here's hoping things continue to get better for you! :grouphug:

[dwdwdw]

Thank you so much for the encouragment:)

Imustpee,
I remember when you where trying to get them to do the surgery for you with no luck, back then i was trying the same and finally now they are doing it. You must understand how i feel:)

Cant wait to get this over and done with!!:)

[Imustpee]

I surely do understand...:) ...I hope you get word soon. The not knowing drives you crazy..:loco: ...you will do great, heal quickly, and start enjoying life..I am..I just took my 2 dogs on a mile 1/2 walk. I am going back to school after 28 years. School starts Oct 4th...I will graduate on June 8th 2007 as a medical assistant and I will request urology....I am assuming that there is not a huge rush of applicants in that dept...hahahha

[icsonja]

:smile tee Wishing you all the best on your futire surgurey and even more important the birth of your child!!! We will be watching to see how both go. Best of wishes to your family and for a speedy recovery for you
Sonja

[glassd18]

I am praying for you, that your surgery goes well, and that you have an end to your pain. Congratulations to you and your wife regarding the pregnancy!!

[dwdwdw]

Hey I am praying this surgery will help i really thing it will it should.
I talked to the doctor and on wednesday i am supposed to go see him with my family and take the final decision and then it shouldnt be long.
Its been long for me though just this past week when I FEEL how i get more and worse symptoms everyday, i havent really had any pain on urination now it hurts so much i am basically crying just came the last night and still there so they might have to take that out too.

Just cant wait to have this over and done with and drink whatever i want and be able to hug my wife and just feel like i did before, no interferance..
Actually when i came home from the hostpital this time i was so high on morphine i i jused passed out next to her with a hand on her stomahce and stlept through the whole nigt, that was the best night ive had in 2 years.
Then slowly every night has gotten worse to the point now where its not working at all and this "new" uretheral discomfort is so bad.
I have had it before but not like this, now everytime i pee it feels like it does when you just had a cath in.
If i dont pee for a while after it setteles though so maybe doc keeps uretra and just removes bladder we will see.

I am just so glad this is happening Im going to drink a dr pepper and have some coffee and just enjoy for the first time again!

Really hard though that the days now are hell and getting worse, while the first one i was relieved and passed them these last two the urerthar has swollen and i cant stand that...but they will attend to that too in surgery.

Wednesday sems forever away but whence it comes he can maybe operate on me real fast seeing how i am.

[Kara29]

I have not followed your story but was just wondering if you should start posting on the bladder removal board as you are having it done now.

Just as long as you know the following information and are comfortable with what you are doing than come on over and get the support of us that have gone through this surgery.

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). For example, I am taking two medications that are actually anticonvulsants called Lyrica and Keppra. These two together could have been the right combo for me before I had my bladder removed but they didn't exist back in 2002.

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. Mine sucks in this department. 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.

Sincerely,

Kara

Since you are planning on Bladder Removal, I have lots of information for you to help you through the process. I won't post any of it here since it's not appropriate in goes on the bladder removal board.

[Imustpee]

Like Kara said: Please join us on the bladder removal board..it's home sweet home for some of us..:) ..bladder removal was a miracle for me and I am so freakin glad I did it...I have just now ( Yesterday to be exact) been able to go back to work..I had to quit my job May 6th, 2005, because of I.C. not because of the surgery.. Surgery was Dec 23rd, my newest favoritest day..I now walk my dogs at least a mile every morning at 7:00am....I started teaching piano lessons again yesterday and I will be going back to college for 8 months starting Oct 4th so I can become a medical assistant......I now have the life I never got to enjoy before...all because that worthless piece of tissue ruined everything for 40 years......well, enough for now about that...if you have any questions, please ask, one of us, propbably ALL of us..hahhaha....will chime in to help....take care..

[dwdwdw]

Thank you.

Believe me I know how many different combinations of meds and stuff you can try, I have tried practically everything the doctors can offer and also various other things such as alternative medicine and acupuntcure without any success, just been getting steadily worse.
The doctors agree this is a very good chance for me, the surgery is big indeed but very routine and done frequently with much success the surgon told me.
I am also certain it will help me.
It may not help with all IC pains, but I am not a pain paitent at all just bladder discomfort which they believe can be gone completely with this.
When they put 90% of the urine away from the bladder i peed much less and it was easier, which thay said was final proof it actually is my bladder thats causing these sensations of discomforts and it needs to go.

I am thankful for peoples help and support and I am lucky to have it.
I have been told by the doctor ill remain in the hostptal for about 2 weeks, and then recover at home for about a month, since I am young and perfectly healthy i should do fine.
I do not have to worry about finances, my insurance compay is paying disablity for me when i go through this.

Its extremely hard and still worsening these ppast couple of days, and I just cant wait to have this one pieace of organ taken out that causes it.
Its one of the worst cases the doctors had seen, i even have big ruptures in the bladder wall and its just a mess.
Lately it hurts so much in the urethera when i pee i almost pass out.
The situation is not working out and thats why they are takign these steps.
I hvae been working with the doctors for over a year to test everything until they agreed to this.
I am seeing the doctor today, i will write a new post in the appropriate board.