Confussed About When???

[jodiii]

Hello everyone its been a little bit since i posted last. I just wanted to asks if you who have had your bladders out got the run around. i have met with 3 surgens and 4 urologist they have all told me that i needed to have the bladder out and we looked into the best one for me. (that i felt comfortable with.) they wanted me to have the surgery in sept. but, now they want me to try the Interstem nerve surgery first. I am very confused here. if the bladder is so bad and needs to be removed then why prolong the surgery? I have tried to ask why and all i keep getting is lets try this lets try this. I am tired of being a giny pig and would like to have some of my life back. They want to try to have the nerve surgery first then the bladder removal surgery. I feel that hell if i am in there for surgery i would rather it be one to recover from not two. Also the other is very high risk. I know that having my bladder out is a life long commitment. but so is be paralized. I would like to know if anyone else had these problems and how you responded. I have refused the internerve surgery. also its not FDA approved for IC therfore my insurance will not pay for it. I have done the trial for Cystat and nothing help but, the side effects. I am so fustrated and feel like i have no faith in the medical field. any info would help.
Thanks
Jodi <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />

[Yvonne]

Hi Jodi,

I totally hear what you are saying. I also had to try everything to the hilt including Elmiron, trigone instillations with Marcaine, see a specialist in Vancouver, diet etc., every pain pill on God's green earth,DMSO instillations, bladder augmentation and then when that rotted within a month ileo conduit. For me it took from age 18 to age 40 before I was finally diagnosed with IC and by that time my IC had progressed to end-stage which it happens to just a low percentage of IC patients.

I don't blame you for not wanting the interstim surgery. I found after I had gone the route of trying EVERYTHING that they asked of me it was time that they did WHAT I was asking and that was to take out the bladder and to take it out NOW. You have to be really aggressive and assertive in telling them when you have had ENOUGH ALREADY and go with it. It is easy for them to tell you to try this and that and they can go home to their pain free existence but you have to keep suffering and I found no one really cares about you once you leave their office.

Jodi, it sounds like you are ready and have had enough, go with that and tell them how you feel. You have tried ENOUGH and it is time to move on.

Good-luck with all of that, it can be so stressful dealing with the doctors about this situation as many doctors are under the asssumption you can't take a bladder out unless cancerous, times have changed thank goodness. UNFORTUNATELY for me and not all have this problem but they took to long to diagnose me and thus have suffered for 29 years 24/7 , don't have the urgency and frequency due to getting the urethra out which by the way was so diseased grrrrrr. I am still totally incompacitated with pain 24/7 and NOTHING is working and I am slowly getting worn down with the pain. Hopefully you have great success when and if they finally do your surgery. Go with your gut feelings , I found they always worked for me.

God Bless you
<img src="graemlins/kissing.gif" border="0" alt="[kissing]" /> <img src="graemlins/angel.gif" border="0" alt="[angel]" />

[DebbieD]

On Honey I hve been there and done all the above. But it up you and your DR. Mine was the Last resort. We tried all the other things. Even making Part Bowel and Part Bladder to sel-cath, to the s2 Nerve Block. Yes I do feel btter that it is out but also I still get some infections. But you need to sit with the Dr. and discuss what is right for you. I will keep you in my Prayers. It was the Best thing for me. If I had to do it over again it would.I had a Great Dr.Pray and Have a faith. But Please be sure this is th route you want to take.

Hugs and Prayers

DebbieD

[Kara]

Jodi,

I have to tell you that my doctor made this mistake with me. He put the Interstim in me, fully knowing but not telling me that my bladder could only hold 3 oz. I feel that people whom are bad enough to have their bladders removed (meaning they can only hold a tiny amount of urine and are dying because of the pain, urgency, frequency, and retention) should rethink trying the Interstim first. It was a waste of time for me and now they want to remove it becuase it serves no purpose to my neobladder. I lost my job for taking so much time off for these surgeries. It would have saved me a lot of time and my job if I had just bypassed the Interstim and had my bladder removed. We screwed around with the Interstim for 1 whole year! In that time I could have had my bladder removed and had been recovered and on to a new life and job....... Now I have lost my job due to the fact that cystectomies take so long to heal from. I am an Interstim Advocate for people who have a nice bladder capacity, they seem to be the one's whom are benefiting from Interstim. Once your bladder is so bad that it needs to come out, the Interstim can't make the bladder grow back to it's normal size.


I know this is a very strong opinion, but I thought I'd throw it out to you.


PLEASE REMEMBER, In the end, you have to know in your heart that it's time for the bladder to come out, if for any reason you are hesitating then don't do it. You have to be ready with your whole body, mind,soul, and spirit to do it. It's an irreversable surgery. If you feel in your mind that it's time, you will make the right decision.

I had a hard time making the decision becuase there were so many people telling me NOT to do it. But I had already tried the Interstim. I just feel that the Interstim seems to not benefit those people whom have no bladder capacity left.


I hope I don't anger anyone by throwing this information out.

I will email you a letter I wrote regarding this if you'd like.


If you want to discuss this with me over email,

it's klreese@attbi.com


I'm with you evey step of the way Jodi, I have pictures and everything.

Love,

Kara

rolleyes.gif

[Don]

Jodi if they want you to have the interstim,tell then you want the trial one. theres no surgery they run the wire in at the tail bone and you wear it for 4 or 5 days and you will know if it helps or not. This is what my uro. did he had Dr. ******* showing him how to do it,with in a week you will know. ******* is the one who invented it.Only do it if you think it might help,I've had 2 drs. that want me to have the bladder augmentation and I told them that the ic would spread to the new part they didn't know that could happen.You tell them what you want and stick to it. good luck with decision and be FIRM Don

[Teri]

jodiii~I have had both interstim trials done. The original one (which is the one where they insert the wire while you are completely awake, yes, it's uncomfortable but NOT unbearable. I have also had the 'staged trial' which most uro's are doing now and I would NEVER go thru that one again......it is SURGERY, total and complete! And, if it doesn't work, you have to have surgery to have the wires taken out...with the original trial the dr simply pulls the wire out. Some say that doing the staged trial there is less chance that the wire will move so you are likely to get a truer test....I am not one who happens to follow that line of thinking. I am lucky and my first surgery worked for 1 1/2 years and this one has been working for approx 8 months.

IF the voiding journal been done properly (which is suppose to be the followed to the tee!!!) This voiding journal is to be filled out by the patient for 5 days previous to the trial and again for the 5-10 days while the trial is taking place. It is up to your dr's office to get this pushed thru your insurance company and if you have a competent dr and staff and proper information, and meet all the guidelines it can be done.....please see Ruth's posting under are You happy with your interstim implant.

Sometimes we are so desperate that we would jump at anything that we think would STOP this nightmare....I'm there now. I am so sick of being sick that I would give almost anything to end it. BUT, what if in 5 years there IS a treatment that works??????????????? That's what I keep holding out for. It could happen, then where would I be if my bladder where gone?

My insurance (and most others) covered the implant because it IS FDA approved for urgency/frequency with unabstructed retention. Would you qualify under that?

I completely respect anyone's decision in regard to their own treatment. IT IS YOUR BODY and you have the right to make those decisions. Just don't be guided by emotion or a quick fix. Sometimes we make decisions we can never take back. Don't forget!!!!!!!!!!! There finally IS so much going on now in IC research!!!!!!

sending tons and tons of gentle hugs~

[jodiii]

Hi Everyone,
Thank you all for the posts. it sure made me feel better. i think we need that after all we live with. I just had another cystogram. my capacity is 28cc. AHHHHHH!!!!!! They just had me go in and have the uterus check. It is pushed up far into the bladder. The Gyno wants to remove the uterus to help releave the presure. I have lost so much weight. Alot think thats good. But, I feel so week. I am still working when I feel ok. But, other than that i don't want to leave the house. I am so sick of stoping every 20min. in some junky gas station because i can't wait to get home. My uro and I got into a disagrement about the removal and the interstem. He thinks its better to do the interstim first,I don't. He asked me if i have met anyone that has had there bladder out. Boy he was shocked when i told him of this sight and what i have learned about them. I got the information on the BCIG pouch(inner pouch)and am meeting with him next weds. I am putting my foot down this time. I have done all they have asked and suffered for years with experiment after experiment on this IC and I have to admit. There is no cure. Not for me all i can do to cure it or comfort it is remove it. I also got information on the Interstem to take to him and show him bolth. I have realized this is my life and I only have one right. They dont live it we do. Again thank you all for your post of information. I really needed the Support for this.
Hugs to All of you
Jodiii <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[Kara]

This is what I wrote to my bladder when I knew the time was up and it was time for my bladder to go:

I have worked very hard to get someone to save me from this End Stage, Refractory, Interstitial Cystitis. While I am only about 1% of the IC population, I still exist and have feelings that I would like to share. Not many people will ever have to go through something as traumatic as this. I am brave and strong and I am not wavering. There are others out there like me that may be too afraid to talk about this. It's a subject that many people want to avoid because of it's seriousness but it needs to be discussed someplace and I can not find any other place to do it.


I had a conversation with my bladder last week.
It goes like this:


"Bladder, tell me how you are feeling right now?"

"I am in so much pain but all of the pain meds and others you have tried to give me have only made me feel worse. Six surgeries have not saved me from this torture. I'm too sick for you to keep using me like this."

"Bladder, How can I comfort you through this difficult time?"

"Please keep that foley catheter inside of my mouth. It takes the pain and sorrow away while you are waiting to replace me."

"Bladder, Can you tell me what color you are feeling right now?"

"I am as red as the hot coals used in the fire."

"Bladder, what makes this feel better?"

"When you are not using me to store your waste and toxins."

"Bladder, Is there anything else you want to tell me before I let you go?"

"I've tried so very hard to work for you but I am too disabled to continue any further. It's time for me to go. I don't want any more of your 58 medications......No more surgeries........Please let me lie in peace. I still love you but I am no longer able to help you out with your daily functions. I will be with you in spirit. I'm sorry it did not work out between us."

"Bladder, I will grant your wish and so will my incredible surgeon. Your suffering will end Friday at 7:00 am. I love you too but I know this is what you want. Goodbye."


Kara