We have a girl in trouble

[Teri]

A very very close friend of mine has suffered so badly with her IC and many other major medical problems she has. It's so bad now that she is basically housebound 24/7.
She tried the interstim but since her bladder capacity is only 2oz, it wasn't a device that could help her. When she had the implant removed she ask the dr "what next" and he told her that the only other option he could think of is bladder removal.
My heart aches for this friend. She is a kind, loving, gentle, caring, giving person.....let's pray that she gets some relief :pray:

[ICNDonna]

:pray:

Donna

[donutgirl]

:pray: :pray: :pray:

I will keep her in my prayers.

DIANE

[Annie2]

:pray: :pray: :pray:

Annie

[Katrina]

:pray::pray::pray::pray::pray:

[Judith56]

Bladder removal is not the end of life! Just the contrary. For most of us that have the surgery, it is a second chance at living a full and rewarding life again. Once the surgery is over and she heals, she will probably feel a whole lot better and be amazed at what she is able to do. I will be on vacation for the next week, but would be more than happy to answer any questions. It has been 18 years since I had my bladder out and I have no regrets what so ever. Judith

[mayray518]

I was housebound for 6 years from 1992-1998. No uros would even discuss drugs to try then except elmiron which didnt work. I am on elavil now and have been pain free for years. there is always hope.

[kelly McC]

:pray: :pray:
Kelly

[Dixiefireball]

hugs and prayers sent
Rhonda

[BethW]

Prayers and holding the good thought....

[Iris]

Prayers are on their way, Iris. :pray: :pray:

[windwalker]

Prayers going out.

[jen_dahling]

:pray: :pray: :pray:

[dyno]

Prayers coming her way.

[JOJO]

:pray: :pray: of course sending prayers for your friend,not to mention a fellow ICer. God Bless :angel: -JOJO

[JudyS]

Add my prayers as well.....:pray: Please tell your friend that she's in our thoughts and we're praying that she find some relief. :grouphug:

[tillysav]

:pray: Sending a Prayer :pray:

My heart goes out to your friend. There is always hope and there will be a way.

[SheriG]

Prayers Offered For Your Friend, And For You Teri. You Have Had So Much Going On In Your Life, Yet You Seek To Comfort A Friend. What A Kind, Wonderful Person You Are...your Friends Are Lucky. I Hope They Are As Supportive Of You, As You Are Of Them! All The Best For You Both!!!

[curlycue]

I agree with Judit56 having your bladder removed is not the end of the world. I was told at 27 I am now 34 that some day that might be what I would have to do and I said NEVER I would rather Die? as I have gotten older I realize the things that you can handle and If I have to have my bladder removed and see my girls grow up, then that is what I would have to do? I will keep her in my thoughts and prayers and hope everything turns out for the best.

[Ginny]

Has your friend tried the diet? It is hard to follow but makes a hugh difference.

Ginny

[tigger_gal]

having a 3 ounce bladder and the interstim I can understand how upset you are for your frind.. sending you both lots of hugs
Brat

[iamcynda]

Please tell your friend not to give up! And if the doctor says there is nothing else to do but have her bladder out -- well she should consider it. Get lots of information, talk to people who have had it done. Find the BEST surgeon and hospital. I've had mine out for over a year, and have a brand new life. It's not for everyone, but for me it was the best thing I could have done. I'm living like a normal person again.
Cynda

[icnmgrjill]

In rare cases where bladder capacity is very tiny like that, bladder removal can give them back their lives. You see two people who have responded above who are grateful to have had it done. So, though it's definitely a scary thing to consider, it might help. Just think of all those gun shot victims and military veterans who have sustained injuries to the pelvis and have had their bladders removed. It can be done!

Jill :)

[SusanC]

Sending prayers and gentle hugs for both your friend and you,Teri, for being such a compassionate friend. :grouphug: :pray: :pray:

SusanC

[songbird7]

Teri,
Prayers going out for your friend. I will add my prayers to those here and pray for all of us as well.
Gentle hugs,
Songbird

[mayray518]

You are such a good friend which is appreciated by all those suffering from IC. I was housebound for 5 years and, at that time, no docs would even considering removing my bladder. But now more is known about how we suffer, etc. I also always had high capacity. Elavil helped me immensely and I hope your friend can find something to give her her life back even if it is bladder removal.

[vabeachdebi]

My prayers are with your friend and with you to give her support!!!!
Has your friend tried having her bladder stretched to hold more capacity. About ten years ago they told me that I had the bladder and urethra of a 4 year old....I had a lot of UTIs and problems. They stretched my bladder and urethra and I was good for the last ten years. It wasn't until just recently, after the loss of my mom and tons of stress that everything went haywire and I'm having problems again. But I can still hold a large amount of urine. It's worth checking into. Again, my prayers are with you both.

Debi

[curlycue]

You are so luck that you were able to have that procedure done my dr said he as streched all he can. He is afraid that it will explode or what ever happens to the bladder when it is over streched.

[blue]

I'm sending prayers her way!

[vabeachdebi]

I will keep this in my prayers...miracles still happen!!!! Please keep us posted!

Debi

[mallenajolie]

still saying prayers for this lady. my mom does too every night (p.s. I know who is is.).

[catwoman]

:pray: :pray: :angel:

[HOOP]

Yes All Are Prayers Are For Her

[songbird7]

Prayers go out to her right away. This is the first I've seen this thread.
With love,
Songbird

[curlycue]

How is she doing? I hope well. Since the last post.

[KristaM]

:pray: :pray: :pray: :pray: :pray:

Sending lots of healing and I will pray for your friend as well.
Krista

[mayray518]

I was housebound for 5 years and I know what a nightmare this can be. I can only hope that she has many supportive friends like yourself. Eventually I found something to help me but I know how depressing IC can be. Prayers for her!!

[curlycue]

MayRray518,
Why were you housebound? If its not to much to ask?

[aggiegurl]

I am along the same lines with Judith, bladder removal is not as bad as one may think. My life has been able to be as close to normal as one can ask since I have had my bladder removed. I have a internal pouch that I have to intermittently catheterize, but I am not in ANY pain and I am able to get out of the house and do things instead of having to be close to the toliet constantly. If you have any questions for me, I would love to try and answer anything I can. Good luck to your friend. My thoughts are going your way.

Hugs,

Janet Lynn

[curlycue]

Hi Janet Lynn,

I have thought of bladder removal, but my dr says I am to young I am 34. I dont think you should place a age on bladder removal. If you are in pain take it out. I have tried everything but the bathroom sink.

My sister in law is a GYNO and her husband is a anesthisioligist(he puts people to sleep) and they both have said to me dont even think about having your bladder removed? its awfull, but its awfull living with IC every day?

[aggiegurl]

Hey Ruth,

I understand what your sister in law and husband both are saying, but they have NO IDEA the amount of pain and everything else we go through. I had part of my bladder revoved when I was 22yrs. old. I then had the rest of it removed 3 years ago when I was 33 yrs. old. Like you said age should have nothing to do with it. I had no life. I could only hold 20 to 30 cc's in the beginning. When I had part of my bladder removed they took a piece of small intestines and patched it on the remaining part of my bladder to give me a bigger capacity and this worked great for 7 years and I wasVERY pleased. I knew that the remaining bladder still had IC. I now have this Indiana pouch that I would not trade for the world. I do not have pain. I can sleep all night long. I do not get infections. I have a life again. I would do it all again in a heartbeat and I am only 36 years old right now. They don't understand and we can't expect them to understand completely but they need to put the shoe on the other foot.

Love ya,

Janet Lynn

[Judith56]

I had my bladder out when I was 30. I truly believe that I could not have done all I did with my life if I had not had the surgery. I am now 48. I raised two sons am still married to the same man for 26 years, work, garden, and do just about anything I want. You are right, age should not be a factor. It really depends on how diseased the bladder is and how much one's life is affected. Judith

[curlycue]

I agree with you ladies 100%. I think the fear that dr have is that they dont know? I think instead of saying "oh its not a life having your bladder taken out" they should say do all your reacher and talk to people that have had the procedure done. After all you ladies are the ones that have to deal with it on a daily basis.

I do have one question have you ladies ever had kidney infections? or any Kideny problems?

[Judith56]

Ruth, I do get kidney infections a few times a year, but my kidneys are fine. I have regular ultrasounds and blood work to check thier function and to make sure there are no problems. For me dealing with an infection a few times a year is nothing! On a daily basis I am fine. Judith

[aggiegurl]

Ruth, I do get kidney infections a few times a year, but I have IGm Nephropathy which is a glomeruli disease of the kidney that has nothing to do with my IC. I have had 53 kidney stones since 1993 and this has nothing to do with my IC either. I was not blessed with the best plumbing, lol. My kidney function is not normal and I am under the care of a nephrologist (kidney specialist) because of the kidney disease itself. Remember, this has NOTHING to do with my IC though. I am doing well now.

Janet Lynn
aggiegurl

[curlycue]

Thanks for your input. The one thing that has always been on my mind is that I would loose my kidneys due to IC, what I mean is that If I had my bladder taken out that the IC would go to my kidneys.I know it sounds stupid, but I am scared.

[Judith56]

I have never heard of IC going into the kidneys, but I am not a doctor. That would be a good question for your uro. I can tell you that I have had my bladder out now for 19 years and my kidneys are fine. Hope this eases your mind. Judith

[happyloulucky]

My Dr told me the only good thing about ic is that it don't spread to any other parts of your body other then your bladder. hope this help you.Eva

[KChideaway]

Prayers to you.
Karen :angel:

[sweetpea2555]

just now read this post. Sending Big hugs and lots of prayers to you and your friend! :pray: :pray: :pray: :pray: :pray: