Need advice..Now..9-28-2016 bladder removal date

[Renac]

I've been diagnosed with IC since 2000. When I say I've tried everything. I have! I've had 2 interstims..not much relief..28..YES 28 cystos.. Last Wednesday, on my last one my bladder capacity was 18cc, which is NOTHING..He told me my bladder was a ball abt size of a golf ball of nothing but scar tissue...Having it removed is not a choice for me anymore, he even said leaving any part of it was not a choice. My decision now is do I want an Indiana pouch or uriostomy...I'm so confused, totally STRESSED to the max...
ANYONE who has any kind of input, it would greatly be appreciated...I'm just so confused!
Thanks in advance and PLEASE someone talk to me!!

[sarah57]

Re: Need advice..Now..9-28-2016 bladder removal date

I'm sad for your situation, wishing you the very best!

[Bladderella]

Re: Need advice..Now..9-28-2016 bladder removal date

There is no reason to stress. Take a deep breath... and do your homework. There is lots and lots of information on the net which can help you come to a decision.

There are 3 urinary diversions: Ileal Conduit (sometimes called just IC, not to be confused with interstitial cystitis), Indiana pouch, and a Neobladder. I have an Ileal Conduit, which is an external bag. If I didn't tell people that I don't have a bladder, they wouldn't know it. My surgery was done in March of this year. No one can make the decision for you. There are pros and cons for each one depending on your lifestyle and what you're comfortable with. The Neobladder was not an option for me because I had bladder cancer and when you have a Neobladder, you retain your urethra and mine had to go. I didn't want to deal with a catheter, which is what you have to do with an Indiana pouch. My surgeon felt that the ileal conduit is idiot-proof and I'd have to agree with him. I got to thinking about my health as an old person and what a caregiver might have to go through if I was in a state where I needed care. I feel that an ileal conduit would be easier for them to deal with. I like being able to see my urine through the bag so I can monitor if it looks healthy or not. I change my bag every 4-5 days and am not limited in any way. Many, many people with IC's swim, hike, bike, travel, work out, and do everything else they used to do before the surgery. here are some youtube videos of people talking about their experiences with various urinary diversions. Sounds like you could benefit from watching them. There is no one right choice. There are 3. Most people are happy with their choice, whatever it is.

Ask your surgeon if it's possible for you to speak to some of his previous patients who have had each diversion. Talk to them about their experience. See if that helps you.

[Renac]

Re: Need advice..Now..9-28-2016 bladder removal date

Bladderella Thank you so very much,I have done alot of research and I too have decided on an IC....The thing of getting older and having the less complicated form really hit home with me....I so appreciate your response and advice...I'm still pretty stressed about the surgery, just the unknown but I'm beginning to make some peace with it. I am hopeful for a life without pain..It will definitely be a change, but not all change is bad! Thank you again for you words of wisdom and knowledge....

[Bladderella]

Re: Need advice..Now..9-28-2016 bladder removal date

Bladderella Thank you so very much,I have done alot of research and I too have decided on an IC....The thing of getting older and having the less complicated form really hit home with me....I so appreciate your response and advice...I'm still pretty stressed about the surgery, just the unknown but I'm beginning to make some peace with it. I am hopeful for a life without pain..It will definitely be a change, but not all change is bad! Thank you again for you words of wisdom and knowledge....

I had a hysterectomy in 2008 so they didn't have to remove any female organs. Although with me, they DID remove part of my vagina (how the heck do they do THAT, you ask? yeah.. me, too!) because of where the cancer was located in my bladder. Since I chose the ileal conduit, my surgery was about 5 hours. It's a longer surgery if you have a Neobladder or Indiana pouch because they have to build a reservoir inside you from your intestines. My pain was managed in the hospital via my IV so I wasn't in a great deal of discomfort. They will have you up and walking 24 hours after your surgery in order to wake up your bowels. Walk, walk, walk, in the hospital. You won't feel like it because your abdomen will be sore as heck, but just do it anyway. You cannot eat or having anything to drink besides water until you fart... or have a BM following surgery. It took me 3 days. This is a normal process. If you have a family member or friend who can help you after you get home, you'll need them for maybe the first week. Plus, you won't be able to drive for a couple of weeks after you get home so you'll need someone to run errands for you, cook, etc. You have time before the surgery to stock your pantry and prepare yourself some meals and freeze them so you can use them while you're recuperating. That's what I did and no one in my family even had to cook for me. I had plenty of food already prepared.

With an IC, your urine seeps into the bag all the time. You will no longer feel the urge "to go". You will no longer be able to give a urine sample to the doctor. There's no more peeing in a cup, because you can't!! And having them take urine from your bag is a no-no because it is contaminated. Even though my IC turned out to be bladder cancer, I had many of the same symptoms as ICers. I had burning, bladder pain, urgency and frequency for about 2 1/2 years. For about 9 months before my surgery, I had to wear Depends 24x7 because it got to the point where I had no control over my bladder anymore and was peeing like 50-60 times a day. Now, I empty my bag about every 2 hours.... sometimes more than that, sometimes less... just depends on how much I'm drinking. The really cool thing is that now I pee standing up and I save a ton on toilet paper. LOL.... I still drink a lot of water, coffee, juice, tea and soda because it's important to stay hydrated. Since my surgery, I have no more pain or burning. ALL the symptoms I had before are gone. I'm almost 6 months out from my surgery and I can say... life is good. I can now eat anything I want without pain and have no more food restrictions.

You'll get through this and be much better for it. If you have further questions about your urostomy, just send me a PM and I'll do my best to answer them for you. Good luck!!

[Judith56]

Re: Need advice..Now..9-28-2016 bladder removal date

I certainly can understand all you are feeling. I was faced with that decision when I was 30 years old. at that time- it was 1986 i had no choices as far as surgeries. I got an ileal conduit, but due to many factors after 6 years I had it converted to an internal pouch. I am extremely happy with my internal pouch, it is now 24 years old. I think the worst art of upcoming surgeries is the wait. Bladderella gave you some great advice! Once you are all healed up, I think you will be wondering why you put it off for so long. Your life will be much better with out your miserable excuse for a bladder, No one can tell you are missing a bladder just by looking at you. I am now 60 and I honestly dont think I would have hasd a productive life if I had not had my bladder taken out so long ago. I cant believe it has been 30 years since my original surgery! Good luck

[Jerryma]

Re: Need advice..Now..9-28-2016 bladder removal date

Judith56,

I have a friend who face to bladder removal decision. She is in China, where she can not access this forum. Would you mind tell me your e-mail, then she can ask some question about your life after surgery? Thank you so much!

[tehuti88]

Re: Need advice..Now..9-28-2016 bladder removal date

If all goes well, I should be getting my bladder/urethra removed and an Indiana pouch put in in December.

After over eight years, two urologists (the first one so uncaring that he didn't even bother explaining what IC is when he diagnosed it), numerous treatments, and no relief (similar to the OP, I have a tiny bladder that the second urologist described as "very sad" and "one of the smallest bladders I've ever seen"), I'm actually more excited than scared, and just wish it was happening sooner.

I'm also worried about jinxing it just by mentioning it. I have digestive issues I've never had looked at since they're tolerable to me (maybe due to my gallbladder removal), so I hope those don't complicate things. Also I'm obese, but don't have any obesity-related health issues, and the surgeon I talked with sounded confident that complications should be minimal. He said I'm a good candidate for the Indiana pouch, which is exactly the treatment I wanted, plus I wanted my urethra out too, but he brought that up on his own and I didn't even have to mention it! I'm just so used to doctors telling me to try this first, try that, you don't want surgery yet, oh no. I cried from happiness when he said he would do this surgery for me. This is the first hope I've felt in years. Please don't let me regret making this post. *knocks on wood*

I hope so much the surgery goes as planned in December (rescheduling isn't easy because we have to travel long distance and don't have much money for driving or staying anyplace--I depend on my aging parents for this and their health isn't the best either--and I'm on Medicaid so that's a concern too, plus what if I catch a cold?--I tend to catch them easily ). It would be so wonderful to finally be done with this misery.

[Aaarrrggghhh]

Re: Need advice..Now..9-28-2016 bladder removal date

Renac, how did you go???

[Mothergoose]

Re: Need advice..Now..9-28-2016 bladder removal date

No jinxing here only positive thoughts.

I am sorry to read that you are to thart point and how sick you must have been, I am glad for you it is happening.

I would suggest you stay home and away from people as much as you can, to not catch a bug

[Judith56]

Re: Need advice..Now..9-28-2016 bladder removal date

I hope all goes well for you and you don't catch any colds or other bugs before the surgery!. Try to eat healthy foods, drink lots of water and wash your hands a lot! Especially after handling money, money is filthy and carries lots of germs.also try to get plenty of sleep if you can, that will also help you stay healthy.