Dr. Raz wants to remove my bladder and urethra, I am scared

**bellaluna05** · 11-20-2005, 01:31 AM

Hi everyone I am new here, my name is Lara. I just turned 30 and I have had IC for 12 years, I have been completely homebound for a year now. This has been the worst year ever.
About 4 or 5 months ago I went to the Doctor for a routine cystoscopy to make sure I didn't have bladder cancer on top of the IC, because I wasn't responding at all to any treatments. Well somehow the stupid Doctor ruptured my bladder. I imediately knew something was horribly wrong after the cystoscopy, but the doctor denied any complications. He kept trying to tell everyone that my bladder was fine. I was hospitalized for the pain anyway. Then 3 days later my whole body swelled up 3 times its normal size. This is very embarrassing but my vaginal area was so swollen it looked like I had balls. Every specialist imagineable came to look at me. They all said they never saw anything like it before and didn't know what was wrong. Then my temperature jumped up to 104 and they thought I had that deadly skin eating virus. They said they would have to do surgery or I would die, but they watched me carefully that night and luckily decided that that was not what was wrong with me. They put me on an IV of 7 of the strongest antibiotics, thank God the swelling went down after couple of weeks. My bladder pain was still so insane though, and the doctor that did the cystoscopy convinced everyone that it was all in my head. After a month in the hospital they tried to send me home without helping me, but I knew something was really wrong and didn't want to go. They took away my meds and threatend security on me even, I was so scared. I thought I was going to die. Luckily my boyfriend (He is the best) was fighting like hell to get me transfered to UCLA to see Dr. Raz. He researched him and knew he had to get me to him, which was not easy thanks to my HMO insurance. Thank God he did it though. Dr. Raz imediately had a Cat Scan or MRI done, I don't know which one. After that he decided he needed to do emergency exploritory surgery, he did not find good things. He discovered that my bladder had been ruptured and half of it had actually died. Necrosis of the bladder. He had to do more emergency surgery, he said that if I hadn't come to him when I did I would have been dead. I knew i felt like I was dying,but had no idea that I actually was.
Dr. Raz replaced the dead part of my bladder with part of my small intestine. He was hopeing this would get rid of my IC, but no such luck, it came back even worse. Plus my new augmented bladder made it so I can't pee on my own and I have to catheterize all the time, I hate it. A lot of my pain is in my urethra so it is completely unbearable. Before Dr. Raz I had tried every treatment available and failed all of them, a lot of them even made me worse.
Dr. Raz told me that my last two options were The Interstim or removal of my bladder and urethra with a stoma in my lower pelvic area. He wanted to try the Interstim first, which we just did and ofcourse it made my pain worse. So now he wants to do the surgery and I am not so sure about it, I am really scared.I have had a few second opinions too, they all agree with Dr. Raz, That I am way past any treatments, I need surgery. I keep hearing all these horror stories though and I don't know if I should do it. He says I will be a new person after. I would only have to cath. every 6 hours, I would be able to eat and drink whatever I wanted again (Is this true?) and there is an 80% chance that all my pain will be gone. If it was a 99% chance I would do it this second, but I hate the thought of looseing my bladder and urethra if I am still in unbearable pain. Please tell me your stories so I can make a good decision. Is it still worth it even if I still have the pain, sometimes I think it would be. Afterall the frequency would be gone and I would be able to eat again, right. But what about the stories I hear about IC taking over the pouch too, can this really happen???? This is what scares me the most! Please tell me your stories GOOD AND BAD!
Sorry this is so long, thank you for reading it.
Lara

**tigger_gal** · 11-20-2005, 01:50 AM

omg Lara I would be seeking an atty right away. What happened to you is just wrong. ((((((((hugs))))))))) I can;t help you out on the bladder removal questions, but have seen a few that said it was the best thing they ever did...
Sending you lots of hugs and prayers.... and I am sure someone will be able to answer your questions.

**emilyrose197377** · 11-20-2005, 02:01 AM

I am so sorry for what you are going through sending hugs and prayers.

**Babs RN** · 11-20-2005, 02:47 AM

Lara,
Funny you should mention that doctor, he's my uro too. I am 35 and facing the same surgery and there is another patient of his on the boards too who is having her bladder out in 32 days. I trust him and think he is the BEST uro I have seen. He is chair of his dept and has written textbooks on female urology. I am scared for my outcomes too, not because of him but due to the sheer gravity of the situation. I live in California as well.

Hugs,
Barb

**DebbieD** · 11-20-2005, 02:50 AM

Bless your Heart!

My Bladder has Been out for 21 years and I have a Ileo-concuit- I wear a Very small Bag. Each Person is Different. Alot of People have the Kock Poch were they do Cath. So A Search On Urostomy and go to all the Sites okay. A support Group Help out alot. I have had 4 Revisions cause the IC Just ate it way through. Just Last Year I had My Right Kidney removed Cause it was Dead. All Test showed it was funtioning at Half, But when the Dr. Did an Open Nephectomy It was Bad. He said he does Not know why some people have a Mild Caseof IC and some Very Bad. Mine Was Very Bad.
If You Need to Talk Just send me an e-mail or PM Okay.

I am Praying for you and You Came to the Right Place for People to Try to Help.

Hugs

DebbieD

**Babs RN** · 11-20-2005, 02:50 AM

PS As for those other people at the first hospital, I would find some one in the legal profession too.

Hugs,
Barb

***ICNDonna*** · 11-20-2005, 03:21 AM

It's not surprising that you are nervous about having this done. As with any surgery, there is always some risk --- but there is also the distinct possibility (the odds are with you) that you will be able to function as a normal human being. Just remember that it is you who must make the decision. It's your body.

Donna

**Bianchi** · 11-20-2005, 04:10 AM

Oh my gosh, this is just terrible. I also would consult an attorney about your damage to the bladder after the cysto. My heart goes out to you, but it sounds like you have an excellent URO. I hope and pray for the best for you.
Bianchi

**ads** · 11-20-2005, 10:41 AM

I just wondered if Dr. Raz (who I have been to and think he is a very good doctor) is keeping track of his bladder/urethra removals and what are the results/success rates? This would be interesting to know before having the procdure done.

ads

**Babs RN** · 11-20-2005, 11:33 AM

I have an appt with him soon and I can ask him if you would like.

Hugs,
Barb

**ads** · 11-20-2005, 01:17 PM

That would be great to know. Dr. Raz is great doctor. He was right on my condition back in 2001, while the other docs are just starting to come to the same conclusion in 2005/2006. Thanks

Originally Posted by Babs RN

I have an appt with him soon and I can ask him if you would like.

Hugs,
Barb

**Judith56** · 11-20-2005, 01:17 PM

Lara, do not be afraid. I originally had the augmentation done like you and it also spread to my new bladder section. I did end up getting my bladder and urethra out and I am FINE!!!!!!!!!! I had urethral pain and as soon as they took it out the pain was gone. That was over 18 years ago. I have an internal pouch which I cath several times a day.It does not hurt to cath. I can eat and drink what ever I want, the best is being able to drink as much as I want and not have to worry about frequency. Once they take out your bladder and urethra you should not have to worry about it invading the new pouch. I have only heard of it happening in one person, though I really think you should ask Dr. Raz about statistics. Look he is THE ONE to go to when it comes to surgery. I even had a procedure done years ago which was named after him! I can do what ever I want now- I have a life. I have raised two sons been married to the same man for 27 years, work part time, etc. The only thing I can not do is lift very heavy weights, but as far as I am concerned who would want to? Please feel free to ask me anything. Judith

**edythe** · 11-20-2005, 02:35 PM

I reaally debated to respond to your letter but I felt so bad for you. In the VP Foundation newsletters women talk about having had parts of their tissue removed, yet within a month or so the pain returned, and they feel this is because it is a connective tissue disorder, and doesn't just affect one area, so taking something a way doesn't mean the pain will go away. I suggest you look into their protocols for low oxalate diet therapies to stop the irritation, and protocols for processing them like calcium citrate, then there therapies for rehealing the tissues with glucosamine. Since you lived with it so long, maybe it could be worth exploring this briefly if it does not have to be so urgent. I know this foundation is slightly different in thrust than these IC groups, but they are much less prone to using all these drugs, and do most thru diet control, and natural healing things like glucosamine which rebuilds the collagen....the use of heparin and elmiron and such in the IC arena relate to the sulfur system, and oxalates are tied into this also on a biochemical basis... so some of the mechanism they are using are similiar in nature...but they are going about it from a different angle, and from what I have read many IC sufferers have been healed with these protocols, though admittedly everyone is different. Just thought it might be worth looking at for you. Stay well, I hope you find some relief.

Originally Posted by bellaluna05

Hi everyone I am new here, my name is Lara. I just turned 30 and I have had IC for 12 years, I have been completely homebound for a year now. This has been the worst year ever.
About 4 or 5 months ago I went to the Doctor for a routine cystoscopy to make sure I didn't have bladder cancer on top of the IC, because I wasn't responding at all to any treatments. Well somehow the stupid Doctor ruptured my bladder. I imediately knew something was horribly wrong after the cystoscopy, but the doctor denied any complications. He kept trying to tell everyone that my bladder was fine. I was hospitalized for the pain anyway. Then 3 days later my whole body swelled up 3 times its normal size. This is very embarrassing but my vaginal area was so swollen it looked like I had balls. Every specialist imagineable came to look at me. They all said they never saw anything like it before and didn't know what was wrong. Then my temperature jumped up to 104 and they thought I had that deadly skin eating virus. They said they would have to do surgery or I would die, but they watched me carefully that night and luckily decided that that was not what was wrong with me. They put me on an IV of 7 of the strongest antibiotics, thank God the swelling went down after couple of weeks. My bladder pain was still so insane though, and the doctor that did the cystoscopy convinced everyone that it was all in my head. After a month in the hospital they tried to send me home without helping me, but I knew something was really wrong and didn't want to go. They took away my meds and threatend security on me even, I was so scared. I thought I was going to die. Luckily my boyfriend (He is the best) was fighting like hell to get me transfered to UCLA to see Dr. Raz. He researched him and knew he had to get me to him, which was not easy thanks to my HMO insurance. Thank God he did it though. Dr. Raz imediately had a Cat Scan or MRI done, I don't know which one. After that he decided he needed to do emergency exploritory surgery, he did not find good things. He discovered that my bladder had been ruptured and half of it had actually died. Necrosis of the bladder. He had to do more emergency surgery, he said that if I hadn't come to him when I did I would have been dead. I knew i felt like I was dying,but had no idea that I actually was.
Dr. Raz replaced the dead part of my bladder with part of my small intestine. He was hopeing this would get rid of my IC, but no such luck, it came back even worse. Plus my new augmented bladder made it so I can't pee on my own and I have to catheterize all the time, I hate it. A lot of my pain is in my urethra so it is completely unbearable. Before Dr. Raz I had tried every treatment available and failed all of them, a lot of them even made me worse.
Dr. Raz told me that my last two options were The Interstim or removal of my bladder and urethra with a stoma in my lower pelvic area. He wanted to try the Interstim first, which we just did and ofcourse it made my pain worse. So now he wants to do the surgery and I am not so sure about it, I am really scared.I have had a few second opinions too, they all agree with Dr. Raz, That I am way past any treatments, I need surgery. I keep hearing all these horror stories though and I don't know if I should do it. He says I will be a new person after. I would only have to cath. every 6 hours, I would be able to eat and drink whatever I wanted again (Is this true?) and there is an 80% chance that all my pain will be gone. If it was a 99% chance I would do it this second, but I hate the thought of looseing my bladder and urethra if I am still in unbearable pain. Please tell me your stories so I can make a good decision. Is it still worth it even if I still have the pain, sometimes I think it would be. Afterall the frequency would be gone and I would be able to eat again, right. But what about the stories I hear about IC taking over the pouch too, can this really happen???? This is what scares me the most! Please tell me your stories GOOD AND BAD!
Sorry this is so long, thank you for reading it.
Lara

**Imustpee** · 11-20-2005, 03:28 PM

Dr Raz is removing my bladder and urethra on Dec 23rd and I can't hardly wait! I flew from Seattle to see him Nov 1st because he is the best...my regular uro even showed me textbooks written by Dr Raz on Female Urology...my uro said I was in very good hands,,,I have a Foley cath in and have for 23 days now..I will have that one removed and my last one put in on Nov 30th, and I will wear that one until my surgery date..I am very nervous about the surgery but after almost 40 years of this horrible disease I have had enough and I will get my life back.....Dr Raz told me that with the IC symtoms I have ( Pressure and pain upon the bladder filling and relief as it empties) have the best success rate as far as no more pain..he also said I would have to cath every 4 - 6 hours,I could eat and drink whatever I want.That is a life I have NEVER had and I WANT IT! :woohoo:
If the I.C. does take over the pouch I will just go to the external bag...even that is a better quality of life than a 2 1/2 ounce bladder and peeing 40 times a day..

***ICNDonna*** · 11-20-2005, 04:08 PM

Dr. Raz is indeed a well known, skilled urologist. When I had a problem with stress incontinence, my urologist performed a procedure developed by Dr. Raz --- it's actually called a Raz procedure --- and it worked very well.

When an individual reaches the point that bladder removal is the only option left, I know it's still a difficult decision to make. I have personally been acquainted with three people who made that decision. One of the three did have some post surgery problems, but she was grossly obese and her problems were related to not being able to have a bag stick due to her many deep creases in her abdomen. One who has a stoma and wears a bag is soooo happy that she has been IC free for many years now --- I haven't seen her for several years, but she has become an active outdoor person again. The third has a pouch formed from her own tissue. She worked full time as a registered nurse at the hospital where I worked. Like most RNs she spent her eight to ten hour day walking. She's retired now and I met her at a mall a few weeks ago --- she's still doing extremely well and enjoying an active retirement.

My urologist told me of a fourth IC patient who came to his office after she had augmentation surgery because she was having some IC symptoms. She had gone over twenty years after her surgery totally without any symptoms. She told my doctor that it was well worth the surgery and she would do it again in a minute.

Don't misunderstand me. I still feel that this is a last resort option and that all other available treatments should be tried first --- but if it's the only thing left, I'd have to say go for it. I know I would.

Donna