Is there hope after all?

[Kara29]

I went to a Urologist today which brings my number up to 17 now. He said, I think at this point with all you have gone through over the past 3 and 1/2 years, that the Urethra needs to come out and you need somethng like an Indiana Pouch. The only problem is that he does not do that surgery. I told him I was 100% comfortable with the surgery skills my current surgeon. He says to me that he is going to call him and tell my Doc how he feels about this situation. This doc thinks Botox at this stage, is not the answer for me. He's going to talk to my Doc. Maybe my Doc will come around after having a colleauge in his field asking him to do it rather than myself trying to ask him to do it. I am praying as hard as I can that this goes through. It will take a few months to get a surgery such as this scheduled, so if it is JUST a flare and not permanent. maybe it will go away as I wait for surgery and we can cancel it if we have to. This Doctor I saw today says that NO ONE, UNDER ANY CIRCUMSTANCES SHOULD HAVE TO HAVE A FOLEY CATHETER FOR 6 MONTHS, even if Botox does get covered. He feels that the scar tissue will keep coming back over and over and over again anyway. And Botox will need to be done over as well. This is a more permanent solution rather than foleys and Botox which are just band aids at this time. He is afraid that with such regular foley usage, my kidneys will begin to shut down and THAT IS NOT GOOD. He is several years older than my current Doc. He's also related to me by marriage and blood. So maybe he can get something done here. He was so kind, gente, sweet, and caring, I was blown away by him! It was a breath of fresh air after all I have been through. I explained myself in the simplest of ways, a few sentances. He said he could see from my chart everything that I had gone through. He feels this is not an appropriate way for a 29 year old to be walking around. I told him I was afraid to lose my other doc and he said he would be as gentle as he could when speaking to him as to not overload him. I've got 3 weeks until I go up there for my visit anyway, so maybe he will have some time to mull this over for himself before I get there and then we can discuss it further as a family. I asked the doc I saw today to call me after speaking with my current doc. He is going to do that so I am not left hanging. I pray that everything gets settled and soon. I know what will lie ahead of me if we do go on with this surgery and I don't want to wait forever for it. The sooner I can try to get on with my life the better, and I know it's going to be a long recovery.

Thanks for your support. I am going to need it in the months to come anyway regarless of what I end up doing. I will have lots of questions and concerns about the surgery and how to live after it is over.

Here's praying for a miracle!

Kara

:pray: :pray: :pray:

[sandramac]

Kara !Thats amazing news!Hope to talk to u later!LOVE SANDRA

[quiltz]

Hi Kara,
I'm so happy to see something promising for you!! We will all be praying for you here .... I'm even going to have my friends say some!! You deserve to have a more normal existance and to get on with your life!!

:cat: Liz from Long Island :love:

[Baba Yaga]

It IS amazing news. I was so happy to read this. And it sounds like if he has a hard time convincing your present doc in Boston, he's still not going to give up and he will try to come up with his own new ideas or think of a new doctor for you. And maybe that won't even be necessary... :pray:


Kara, you know we are here for you no matter what.

:kiss:

[Judith56]

Kara, thats great you found a doctor to advocate for you! Hope he can convince your surgeon to redo your set up and give you an internal pouch. I hope that once all remainents of your bladder and urethra are out you will feel lots better. I know that has been the case for others. Judith

[Kara29]

Judith,

You have that type of pouch right? Is it an indiana pouch? My mind is foggy at the moment. I am not recalling what you had done. I will have so many questions for you if I do it. Will you be there for me?


Kara

[creatingkarma]

I'm sooooo glad that you finally had a good appointment. I will keep praying for you! I hope this will be the end of all your pain.

[emilyrose197377]

Kara, I am happy for you and I hope your surgeon considers this . as you have been in so much pain. you will be in my thoughts and prayers.

[ICNDonna]

It sounds like things are beginning to look up for you. :grouphug:

Donna

[DebbieD]

Kara I hope thatnthings work out for you! I am praying for you. :angel:

Hugs :grouphug:
DebbieD

[hoping4acure]

Kara, sounds like this might be it. I am looking forward to the day you post and say you are not in any more pain. Stay strong and know we are all here for you.

I wish you the very best and, I will keep you in my prayers.

-Louann

[DENISE31]

I Hope Eberything Works Out For You!!! You Will Be In My Prayers

[Kara29]

Thanks to all of you for continuing to support me. I feel like it was my fault for taking the fertility drugs that has causes all of this to happen but none of us including my doctors who were all involved had any idea that this would happen. I guess it was a risk I was willing to take to have children and I have now sacrificed another part of my body for it. Oh well....

The HARDEST part about this is waiting for my current surgeon to give me an answer as to if he is willing to operate on me. I have some tests going on on Friday for my Kidneys and had bloodwork yesterday. He may wait for all of those tests to come back before he calls my doc. So it could be weeks before I know an answer.

I feel like my life is hanging in the mid air right now.

Your support in all of this is so much appreciated!

Love and Hugs to all of you! :kissing: :grouphug:

[Judith56]

Kara, of course I will be here to answer you questions! Yes, I do have a version of an Indiana pouch. Mine is 13 years old. I hope you get your answers quickly. If your surgeon is not willing to do it, I do know of places where you can look into having the surgery. I am keeping my fingers crossed for you. Judith

[SharonA]

:grouphug: and :kissing: Kara. I sure hope this works out for you. It's about time someone tries to help you.

[ICLori]

I hope things work out for you and I'm so glad a doctor is finally helping you! :)

Blessings,
Lori

[Katrina]

:woohoo: I sure hope this works. You so deserve something to start going your way!! :grouphug::grouphug: :kiss: (((loving hug)))):love:
I so love being part of this family...I so hope that we can carry you through this time and help you to get to a point that is much much better. :kiss:

[marsi4]

Kara, what is the reason that your doctor is refusing to remove your urethra if it's causing you so much pain? Like Judith said why do doctors remove the urethra with an indiana pouch but not with a neo bladder. Is he afraid that he will cause damage in your vaginal area if he has it done or more scar tissue. I mean he's been so supportive and understanding and he agreed to do your bladder surgery so I think he should continue working on you until you find peace of mind and rid you of your urethral problems. It seems to be that he has not attained completion in your ic surgery if your urethra is causing you to suffer. What I'm trying to say is what good is removing a bladder if you are still having urethral pain. The whole point of the surgery is to try and give you a better quality of life and being a good doctor that he is he should know that if the urethra is left that urethral pain and inflammation is a common problem with internal pouches. I hope you find relieve as a pray I do to.

Marsi4

[Kara29]

He may not want to do it because he feels that if the Botox is not at least tried, then he may feel he has not done everything before the last step of removing it. He's extremely conservative. It took me 3 years to get my bladder taken out with him and now we are coming up on the 3 and 1/2 year mark again (of my new bladder) and its time......I hope he honors the wishes of my entire family as a whole. We are all so sooooo tired of this! NO MORE......NO, NO, NO MORE!

My vaginal area will not be compromised with this surgery nor will any sexual feelings be compromised. He stays far away from that area even though they seem very close. I think the others who have had this surgery done will hopefully say that this area was not affected by the urethral removal.

Let us know ladies if you still have sexual function and feeling in that area.

Thanks,

Kara

[Babs RN]

Kara,
I'm glad that the appt went so well...and all I did was babble for an hour and didn't even give you a chance to share your good news. I am thrilled this doc was so wonderful. You deserve it!

Hugs,
Barb :grouphug:

[bellaluna05]

Kara,
I am so happy for you and I pray that your surgen cooperates!!(spelling?) I wish we could have our surgerys together. Mine was rescheduled for March 24th, I am in such hell waiting till then. My pain killers don't help at all and sometimes actually seem to make it worse well the morphine seems to make me worse now and my dose of the pain patches are already so high that it can not be raised, my doctor is already getting a hard time about my dose from other doctors (200 mcg of the fentanyal patch every 60 hrs + 30 mgs of morphine) I am trying to convince my doctor to switch my morphine to methadone I am hoping that the switch will help and I hear that one is not addictive so much better!
Judith has always answered all my annoying questions so I know she will totally be there for you!!
Imustpee just had this surgery, about 5 weeks ago, with the same doctor that will do mine, she is not answering my email. Have you heard from her? I really want to know how she is doing, if you know anything please tell me. I am desperate to know how Dr. Raz did since he will be removing my bladder in a month and a half. God I wish it was sooner, my pain is so bad and i am so incredibly sick and tired of being completely homebound, I need out!!!!
I am praying so hard for you Kara!! Any time you want to talk email me, I think you have my email and you can give me your number if you want, my cell phone works in my new apartment so I can now make long distance phone calls on the weekends for free. We are the same age and facing the same surgery, except you are a step ahead of me since your bladder is already out. Will they be able to use your neo-bladder as the pouch and just attach the stoma to that? I wonder, that would probably make it so much easier on your body and recovery. Oh God I pray your doctor will do this for you! You are such a swetheart!
Lots of love
Lara

[Kara29]

I don't get it. I used to take Xanax for the urgency and frequency. In fact this is a drug I have been taking for over 14 years. Now all of a sudden, my bladder hates it. It also hates Fentanyl, Dilaudid, and Vicoden. These are the only pain killers I can take. The last time this happened to me, I had to have my bladder removed, so it only stands to reason, that my urethra and bladder neck have just given out and can't take anything anymore, literally! So how scary to even want to try Botox at this point with how sensative I am! This drug will be in my body for a long time and if I happen to have a BAD reaction to it, I'd have to wait God knows how long for it to end! I want to sceam as I wait for an answer from my doctor. PEOPLE EVEN SOME OF THOSE I THOUGHT UNDERSTOOD OUR PAIN ARE TELLING ME TO BE PATIENT! I HAVE BEEN PATIENT FOR 3 AND 1/2 YEARS! If one more person tells me that good thing come to those who wait, I will scream! Sorry.....When you are in this much AGONY you can NOT WAIT!!!!!!!!!!!! That is the pont of why we need MAJOR SURGERY, because we are suffering to no end! :headbang: :headbang: :headbang:

[COLOR=DarkOrchid][B]"Patiently Waiting"
Kara

[Judith56]

Kara, you asked about sexual function. I will tell you that for some people after the urethra is removed they find that certain positions may not work anymore, but other than that sex should not be fine. Unless the doctor severs nerves you should still have all the feelings intact.