Reposted for new member

[ICNDonna]

Brea

New User
Member # 5615
posted 08-11-2003 07:11 PM *** ** * ** * * **
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HI Everyone!.I too am new to this site. I just stumbled upon it and very glad I did, it has been very helpful to me. I have had IC for about 7 years now and like most of you I have been on every med that I can think of with no help. My uro finally has sent me to the Cleveland Clinic where he is trying different things (which none has helped so far)The next thing he is going to do is to remove my bladder which my uro here at home wanted to do a couple of years ago and I didn't want to go that route but now I am at my wits end and i want my life back. He is going to do a think called an Indian pouch...can anyone tell me if they have had this done and what do you think about it?..Thanks for any replys..Brenda

[dyno]

Brea,
Just wanted to say Hi and welcome you to the site. I don't know anything about what you asked but wanted to extend a Howdy.

You will find lots of support here, we will look forward to seeing you around.

Jolene :)

[Dixiefireball]

Welcome to the icn. i'm sorry i don't know anything about it, I wish you luck in what every you decided to do and please keep us posted! :)

[Brea]

Hi everyone hi Thanks for the warm welcomes. I wanted to tell you a little more about my IC and why I have to have my bladder removed. I also have M.S. which has damaged the nerves from my brain to my bladder which won't allow me to empty my bladder all the way and it keeps the ulcers in my bladder raw and infected and bleeding alot and the pain is getting to be unbearable. The bladder removal is the last resort and I am very ready for it at this point. I go to my home uro this friday and then I go to the one he is sending me to in Cleveland the 26th so if I have any changes I will let you know..you make me feel very welcome and able to talk to you about all of this and for that I thank you all angel

[Teri]

Brea~can't you self=cath at home? I cath more times in a day than peeing on my own. How come your dr's won't try the interstim implant before taking your bladder??? :confused: :confused:

[Brea]

Hi Teri, I do self cath at home and at times I wear a leg bag catheter(which leads to alot of extra bladder spasms and infections)He has talked about the interstem but at this point I just want it out!! I am going to try one more thing before he takes it out and it is a new med (don't even know the name of it yet) but he said it hasn't been FDA approved here in the states yet but has been used in England with some pretty good results but I would have to be part of a study where 4 out of 5 IC patients would get the drug and the 5th would get a placebo....I am so sick of putting pills in my mouth it makes me want to vomit just to think of taking one but I will give this a try for his one month and if it doesn't work then he will remove it. I will let you know how the new drug works....when I get it.

[Angie]

Teri
I also have to self-cath - not all the time, but when I do, it's because the bladder just stops working. Although I have got used to doing it, it sets off a cycle of pain/retention and when I can't stand it any more, my uro does a urethral dilatation. This works until the next time - unfortunately, the 'next time's are getting closer and closer, and he's suggested I have a diversion. It was the last thing I expected, and I'm still reeling.
My question is, do you think the interstim would help with that sort of problem? I will try anything!
Thanks
Love Angie

[Teri]

Angie~when they first announced the interstim it was for urgency, frequency and unobstructed retention, which is what you and I have. I had the device for 4 years and for 18 months it worked with my urgency and frequency but there were still times I'd have to self-cath. My dr gives me lidocaine 'jets'. It's lidocaine iin a funny looking plastic needle and I inject it after I cath and I can't believe how much it's cut down on the spasms and pain the cathing causes...maybe you could ask your dr for them. If he acts like he doesn't know what you are talking about don't let him bluff you. They are the exact same thing that is used in the uro's office for procedures so he knows exactly what they are.

I was the first patient my uro tried them on and now he is perscribing them to others.

tons and tons of hugs~

[Maureen]

Angie,
I am sorry you are having a great deal of trouble. I understand from the medtronic site that they do not recommend the interstim for MS patients. I wish you the best of luck on the new medication.
Maureen

[Judith]

Hi Brea and welcome! I have a version of an Indiana pouch and I love it. It is now over 11 years old so I would be happy to answer any questions you may have. Judith bunny

[Angie]

Teri - thanks for your reply - Do you know exactly what these lidocaine 'jets' are called? I'm in the UK and I haven't heard of them - just the Instillagel syringes with a local anaesthetic gel that they put in whan they catheterise - but they don't have any sort of needle or introducer, it's just a syringe. Besides, I've tried shooting the whole syringe full into my bladder, but it didn't help - my uro suggested putting some marcaine in with it, but how to get it in the syringe with the Instillagel is the tricky one!
Thanks again
Love Angie

[Iris]

Hi Brea and welcome to the boards, my it sounds like you are really going through so much with your IC, do hope that whatever they do helps you out with the pain and the problems that IC presents, take care and keep us posted, this is one great IC family, take good care of yourelf and a big welcome to you, Iris hi grouphug grouphug

[julesb44]

Hi Brea,
I tried the interstim and then had it revised. It worked about 50% for me for 3 years. By then I was worse than when I had the interstim implanted. I had my bladder removed last Dec. and I have an Indiana Pouch. I finally feel like I have my life back. I would be happy to answer any questions you have. Good luck!
Take care, Julie grouphug

[Brea]

hi all ! hi ..I want to thank everyone for the replys,it has helped alot! I have been meeting and talking to new people everyday and I don't feel so alone in all this now. My husband has been a very big support to me even tho I know he really doesn't know what I am going through,but he does try. I want to thank all of you for your help and hope I can help all of you with something one time or another....here are some hugs for thwe help and angels to watch over you.....hope you all are having a pain free day...love Brea grouphug grouphug angel angel angel

[DebbieD]

Hi! I have had my Bladder Removed for now going on 20 years!! Time goes By fast!

Ask all Questions! Things will be fine! I have my good days and Bad! By Bladder was in Bad shape and Very bad IC!!

Any questions I will try to help!!

email me at

ldurham@comcast.net

DebbieD

[netty]

Hi, I had aa new blaaadder maade out of my small intestines about a month ago. It was hard but if you need questions answered, I have no problem helping out. Netty

[malin28]

Hi Netty,

I am having my bladder out september the ninth, so it`s very soon. I am going to have a koch pouch. I live in Sweden and have not been able to speak to anyone here who has had this procedure done so I really would like to talk to you and ask questions regarding your surgery if it`s ok. My name is Malin and I am 30 years old.

Can you please tell me your e-mail adress?

Mine is: malin.larsson.eskilstuna@swipnet.se

Thanks a lot

best regards from Malin

[Prinny Joy]

Hi Donna, diagnosed w/ IC 7 years ago and wish I had a Dr. that was willing to remove my bladder. One Dr. said I had suffered enough and by the time he said that I already moved out of state and no Dr. since has been willing to remove my bladder. I had to let go of my career teaching first graders because of this ugly disease and haven't worked since. Wish I had my bladder out. I know it isn't easy either way but I wish you support! PEACE and JOY

[DebbieD]

Welocome. I had my Bladder removed 20 years ago. I also had my Bladder made out of my Bowel Twice. It was called a Cecum cysto Plastic Bladder. Did not work. I had to self Cath and then They did a ileo-conduit.


Enjoy it here.

Have a Great day
DebbieD

[Prinny Joy]

Much thank you's for the warm welcome! The reason my husband and i have been very concerned w/ surgery is that I was given 30% chance of success rate and told I'd may have to cath, my thoughts are if I'm having surgery I need something a bit more than 30%, although at desperate times I do consider being hopeful of being one of a 30% . Just curious if you don't mind sharing how it affects you emotionally? PEACE and JOY

[DebbieD]

I had the Cecum Surgery back in the 80's. I had my First Urostomy in 1984. Plus 3 revisions. I was hurting so much At the time I was willing to try anything to help the Pain. I first had a S2 nerve Block. So then he did the Part Bowel Part Bladder thing twice. I did not work. My Dr. Tried everything. I was willing to try any and Everything to0. I did not have really aby Problems dealing with any of it at all. I just wanted to feel Better. I have a Great DR. in NC. I love him to death. I also Trust Him with all the Deciosns that have to be Made. If you have trust in your DR. then you are Okay.

Good Luck. But before you say yes to any surgery first Please weigh all your Options Okay.

Good Luck
Welocme.

DebbieD