Totally scared

[Harriet]

Saw my uro yesterday, he wants to remove my bladder! I am 67yrs old, a known Cardiac(open heart surgery in 82) and Diabetic.
I have little pain, just burning in the urethera. Have a 20cc bladder capacity but have a supric pubic cath which I am content with.
Spoke with my internist about this and he agrees I should have the surgery.
I said I am doing well and can live with the supra pubic. His response was that yes I am doing well now, but look towards the future, have the surgery now while you are healthy, not wait til it gets worse. Said IC IS progressive, thats why I am down to 20cc and have a really ugly looking bladder.
I just dont know what to do. At my age surgery is no laughing matter. If it takes 6mo to a year for a young otherwise healthy person to recoup, imagine how long it, and the quality of life at 67 it will take.
My gut feeling is to stay as I am and take my chances. Any thoughts?

[enk11]

Harriet

sorry about what you are going through. I always thought that this surgery is a last resort, when nothing else is working.it sounds like you are doing fine the way you are now. maybe you can get a third opinion? good luck to you!

Enk

[ICNDonna]

My suggestion would be to see a different urologist for a second opinion --- and definitely find one who is not in the same practice as the current one.

It may be that this is the best option for you given the circumstances, but if you're not feeling comfortable with what's being recommended, that second opinion could really help to ease your mind.

Donna

[Judith56]

I agree with Donna about a second opinion, BUT if you do need the surgery I am here to answer any questions. I had my bladder out over 20 years ago. They do the surgery on people even older than you for bladder cancer all the tme and they do quite well. Have your doctors discussed with you why they want you to have surgery? Usually they do not like to keep suprapubic tubes in for years on end,due to the higher rate of infection with them. Being diabetic and with a history of cardiac problems I am sure they are concerned about your overall health. I understand not wanting to ahve such major surgery, but in teh long run if you will be healthier overall and it willextend your life it may just be worth it. Let us know what happens! Judith

[Imustpee]

Hello Harriet...:hi: ...I have to agree with Donna and Judith....I know I got 7 different opinions in the last year ranging from " You seem depressed, I think you need to talk to someone :loco: (my personal favorite bad opinion)", " You just want attention" :confused: "You will grow out of it ( I never did, I am 45 and lived with I.C for 40 of those years) "I don't think you even have I.C." :tsk: 'Try Interstim, it works on I.C. pain" :lmao: At this point I was taking 34 pills a day! :cussing: Can you believe that!? The dr's just kept giving more and more, then all those wonderful side effects kicked in so I had to take something else for that....and so on and so on....Anyways,I found a wonderful, compassionate, caring urosurgeon in L.A. (We flew down from Seattle)that took one look at my huge "Bag O Pills" read my medical history,looked at my cysto/hydro photos ( They are here on the ICN)and was as horrified as my husband and I have been for years, that this had been allowed to continue for so long...I had my bladder removed, 6 months ago, and I have never been happier... I am not kidding,,:woohoo: ,,the last 4 nights I have not had to get up once in the night to pee..:smile tee . I actually have a life outside of a bathroom...:toilet: ...I see you have a 20cc bladder...and I thought mine was small at 83cc's...only you can decide what's best for Harriet, but there is a light at the end of a horrible painful tunnel for many of us that decide that surgery is what we have to do..our last option....well, I could have chose the "Looney :loco: Bin" since I was well on my way peeing 40 - 50 times a day, but they wear ugly clothes in the looney bin so I decided not to go there....I would have the surgery again in a second! Without a doubt, the best thing I did ever for myself other than lasix eye surgery in 2000. We are here for you!!!

[Harriet]

Thanks all for your replies. So far I"ve spoke to 3 Uro secretaries about seeing someone for another opinion. All three said their Doc would want to do their own work up. more cystos and heavens knows how much lab work. No way.
We return to Fla next week so I"ll check with my Uro down there. Of course he never heard of Elmiron or rescue instillation so I dont know how much help he will be!! Harriet

[DebbieD]

I agree With Donna. There are new Thimgs on the Market now then 21 Years ago when I had My Bladder removed. believe me it is not all Peaches and Cream. Please do alot of Research before you make youe Decision. We are all here for you to help you with any kind of Questions.I have had alot of surgeries.Judith knowsa alot and so does Kara. I have had close to 20 surgeries on the Bladder department. Bladder out 21 Years and Kidney out 2 years Becauce od Very Severe IC.

I am here for you.

Hugs
DebbieD

[marsi4]

Harriet I can only wish that my uro suggested bladder removal as I suffer with unremitting pain. I can't find a uro to do the surgery because I still have a good bladder capacity, but that's the only good thing about my bladder. I have severe symptoms and never ending flares. I would have it removed if I was in your place. You cannot have a catheter in you for the rest of your life. It is uncomfortable and you will be prone to infections. I think in the long run you are better off having the surgery done now, then later. You will need to have the surgery at some point and I think it's better you do it now instead of waiting until you are older. It will be harder to recover from the surgery later. I don't think that it will affect your general health and I don't think you should worry about your diabetes and heart surgery you had many years ago. Just make sure your uro is well aware of your health problems and get a second opinion. Best of luck

Marsi4

[Imustpee]

marsi4, what is your capacity? Mine was 450cc when I was put into a coma, 83cc when I was not in a coma...average capacity for an ICer under anes is 575.......one uro I saw kept telling me that 450 was great...I told him to get that I had to be under anes so therefore it did me no good...it's what the capacity is when I am awake that is important.....

[marsi4]

I MustPee

To answer your question, when I,m flaring I can probaby hold around 50cc. I'm in the bathroom every 5 minutes. When I'm not flaring it varies on how much pain I'M having. I have constant pain flaring or not, but obviousy when I'm in a flare I have severe pain and severe symptoms. When I'm not flaring I can hold it anywhere from 2 hours to 8 hours and void anywhere from 250cc to 400cc. Under anaesthesia my uro said my capacity was around 600-700cc, but like you said it is not applicable or possible in our practical lives while we are awake and in pain, so what good is it? Lately, I can sleep through the night without voiding at all but what good is it if I,m in constant pain. When I have a lot of inflammation that is the worst I find, I live in the toilet.

Marsi4

[Imustpee]

M4, I feel for you as I have been there and done that..It sucks...everything about IC sucks...I am so happy with my removal and I am planning on enjoying the life I have never had for my next 45 years....what does your uro say? Is there anything that can be done?

[mayray518]

You can have normal capacity and still be in horrendous pain. My capacity under anesthesia was 800ccs but I was bedridden for 7 years with IC. Elavil helped me. I still had the petechial hemorrhages and the inflammation but, fortunately, my capacity never shrank.

[ICLori]

Harriet, everyone has given you such wonderful advice, I don't feel I can add anything of value, but wanted to wish you the best of luck and hope that if you do go with the recommended surgery, that your life after the surgery will be much better than your life now suffering with IC.

I have read up a great deal on the bladder removal surgery, and while it is a very big, scary operation, every ICer I have talked to, was glad they had the surgery done and would not go back to living with IC for all the money in the world.

Blessings,
Lori

[Harriet]

I finally got to see another Uro for a 2nd opinion. Of course he wanted to do another cyto to see what my bladder looked like. Originally he wanted to do it in his office. All my pain and burning is in the urethera I would not be able to tolerate the cysto awake. He finally decided to do it in the hospital as a walk in crawl out pt.Turns out my bladder looks much better(thanks to Elmiron)not so tattered but still ugly. He suggests to wait a year and continue the Elmiron.
So, at least for now the bladder removal is on hold. Thanks for all the input.
Harriet

[Judith56]

Harriet, thanks for the update. So glad you dont have to go through the surgery at this point in time! Judith

[Vampireness]

I finally got to see another Uro for a 2nd opinion. Of course he wanted to do another cyto to see what my bladder looked like. Originally he wanted to do it in his office. All my pain and burning is in the urethera I would not be able to tolerate the cysto awake. He finally decided to do it in the hospital as a walk in crawl out pt.Turns out my bladder looks much better(thanks to Elmiron)not so tattered but still ugly. He suggests to wait a year and continue the Elmiron.
So, at least for now the bladder removal is on hold. Thanks for all the input.
Harriet

Harriet thats AWESOME
I would suggest you speak to this doctor about combination drug along with Elmiron...

My doctor did suggest bladder removal if the Elmiron doesnt work.
But the nurse beside me said she can hold 200ml and shes so young.
Turns out I have infection.....so yeah I don't want bladder removal to be an option now (or ever really)....

It's good to see not all doctors are so narrow minded. I don't think surgery is an option for you. Because it doesn't even sound like you've tried everything possible. First being Elmiron......

[marsi4]

Harriet, it doesn't really matter how bad your bladder looks during a cystoscopy exam, what matters is how you feel in your everyday life and how much pain and suffering you have to endure every waking, moment. I agree with Mayray that one can have a good bladder capacity and still be in agonizing pain. That is my case, as it was hers. Good luck in whatever you decide.

Marsi4