I am really scared

[SrMaggie]

Last month when I was at the uro office for a follow up from the hydro, we talked a lot. He is very good. My bladder only holds about 4 ounces - 6 under anesthesia. He glossed over the possiblity of augmentation, but as I was going to check out, I read the report and it was there. He said next time I go he would do an ultrsound of my kidneys to be sure the urine wasn't backing up. ?!>? Help! Then I guess we'd talk more serious about more drastic measures. I have Interstim, but he said that is not going to help with the frequency at all since there's no where to keep anything.
This is going to begin to ramble.
THe parent of one of our students is having cancer surgery tomorrow. She is so upbeat. She told me she was going to be fine. She is very young. Her oldest child is in 1st grade. I'm amazed at her spirit.
I have thought that if ever diagnosed with cancer I would do nothing. And I'm thinking the same thing with this bladder stuff. I am fighting like crazy to endure with it. Unless I write down how often I'm in the bathroom, I don't even realize how many times I've gone -unless I'm at a meeting and assume that all eyes are on me as I leave for the 5 th time in an hour long session. Then I say - get rid of this bladder and let me live a normal life. But when I hear about pouches and stomas I feel like running the other way.
Everyone is so supportive and willing to share. Thanks.
Maggie:help:

[SharonA]

I don't know what to say so I will just send you a (((((hug))))).

[ICNDonna]

:grouphug: I wish I could help.

Donna

[Trishann]

Maggie, I do know how you feel. I'm in the same boat. My doctor said nothing can be done except surgery. I really do believe everybody have to make their own decision. There are days I want to ripe the bladder right out of me, but then when I have good days, I think I can deal with it.

To be honest with you, I wonder if I doing more harm to myself by not having it done or am I doing right by holding off as long as possible. There is not a simple answer to this situation.

One thing I do know, when I decide to have it done, there are people here that knows alot about it and to me that ease my mind knowing I can talk to someone.

Hugs, and sorry I can't give you an simple answer.
Trishann

[vm]

{{{{{{{{{{{{HUGS************************ I'm glad coming here helps a little bit. I wish there was something I could say - just know I will pray for you. :kissing:

[ICLori]

I wish I could help - I'm sorry. It must be very scary to be facing surgery. I might be in that same boat not too far in the future, I'm going to have another hydro/cysto maybe in November to see how my IC has progressed.

BTW, I had that test you are talking about, to see if there is urine reflux into the kidneys. I was fine - my kidneys were okay, no urine reflux.

The reason docs want to do that test when your bladder is small, has something to do with pressures generated when you pee. Apparently a smaller bladder generates a lot of pressure and sometimes with that, urine can back up into the kidneys which can be bad for kidneys.

Blessings,
Lori

[Judith56]

Maggie, take a deep breath. First of all take things one step at a time. Go for the test to check out your kidneys, then see what your doctor says. As for having the surgery, as they say, been there done that! I have had an augmentation, then a cystectomy resulting in an ileal conduit- I wore an external pouch, then I had it switched over to an internal continent pouch. I love my pouch it will be almost going on 15 years since I had it done. As scary as is it is to have surgery, it actually gave me my life back. My sons were 2 and 4 when I started to go through the surgeries, I was 29 with the augmentation and 30 for the cystectomy and honestly I dont think I could have done all that I did when they were growing up if I had kept my bladder. Not to say that there isnt an adjustment, there is,but really in the long run I wish it could have been done sooner. I dont regret in anyway having my bladder out- it is almost 21 years now since I had the surgery. So if it comes to it and remember it is your decision please, feel free to ask me anything. I am just a PM away if you have questions you do not want to post.:) Lots of hugs for you, Judith

[asn]

The only thing I can say is to write down how you are feeling, what it feels to go to the bathroom so often, if you are angry, sad, etc. Then read it and think if it is worth it to have the bladder as small as just holding 4 onces. If you don't feel you'll be better with the augumentation don't do it... And because it is a big decision, you should have a second opinion.
Talk with your family and most important to patients that had the surgery to see if it is worth it.
SENDING A BIIIIIIIIIIIIIIIIIIIG BIIIIIIIIIIIIIIIIIIIIG HUG
AND PRAYERS TOO!!!!!!!!!!!!!!!!!!!

[Katrina]

:grouphug: :pray: Most of the cases I hear of with patients who have had their bladder removed are much happier. I do think though that yes it is definatly a personal decission. :grouphug: Your not alone!! :kiss:

[SrMaggie]

Oh, my gosh - do I feel supported? I have tears in my eyes as I read your responses. What a bunch of good sisters! There are days that are terrible and I feel as if I can't go on and I'd have the surgery today. Today is one of those days. I am so grateful for your support - big, BIG BIG hugs to each of you. Thank you so much.
Maggie

[asn]

A lot of times, this is the best place to find support, because all the iones that are here know exactly what you are going thru.
I just send you a BIG BIG BIG HUG, AND I JUST WANT TO TELL YOU THAT YOU HAVE TO BE SURE I HERE WILL SUPPORT YOU IN WHATEVER DECISION YOU TAKE. SO GOOD LUCK!!!!!!!!!!!!!!!!!!!!!!

[Kara29]

Dear Maggie,

I had a cystectomy in 2002. My bladder could only hold 30cc's. I had reconstruction done in May of this year to have an Indiana Pouch. My bladder can now hold over 1,000cc's. I am not perfect yet but I do not regret either of these two surgeries. I had no choice in either case. If you have any questions about any of what you are experiencing, you've come to the right place. Feel free to ask anytime.

Sincerely,

Kara :angel:

[SrMaggie]

Wow! what a dream - 1,000cc. That would be wonderful to have that capacity, although mine is about 100 right now. Right after the last hydro, I recorded 200cc a few times - but not anymore. Yesterday, I got serious about a voiding diary and sometimes a little trace even made the spasms rear up!
But I'm good today!
I went easy on diet and slept more last night than in night's past, so I'm good to go today.

[redfearn]

Maggie-

Sending you warm hugs and prayers!!! I noticed that you live in North Carolina...who is your Urologist? Just wondered, b/c I see a Urologist in NC (Dr. Evans) who is absolutely wonderful!!!!!!!! I have 1 more week until he removes my bladder--I hold about 35 cc's!!! Everything will be OK...Just have Faith and know that EVERYONE here is WONDERFUL!!!! We will all be here for you!! :angel:

Hugs!!!:grouphug:

Laura

[SrMaggie]

Laura, I will be praying for you next week - and for Dr. Evans! He is wonderful. I had a doc but we didn't seem to be going anywhere with treatment. A friend found the IC brochure while waiting for her mother at a uro appt. She suggested I contact Dr. Evans and that was a great choice. I know he is an excellent practioner and besides being a great listener. Let me know how things go. I will be keeping you in prayer.
Maggie

[ICLori]

Maggie, I wanted to say, that augmentation usually does not work well for IC patients. What happens is that the IC spreads to the augmented part. Usually a cystectomy works much better - I have heard from many people who started out with an augmentation, then went fairly quickly to a cystectomy. Please do a search on these boards and also on the internet and see what information you can find about the outcomes of IC patients who have had augmentations, before you agree to the surgery.

Blessings, and best of luck to you,
Lori

[SrMaggie]

Thank you very much. I will do that research. I feel like I'm getting a lot of good information so that I can speak intelligently about it with the doc. I think it said augmentation in my record - so I will check that out. I think when he mentioned it to me at the last appointment, he saw the terror in my eyes with just the thought of it. I wasn't afraid of getting Interstim, because I saw it in the literature and I was at the end of my rope, since nothing else had worked. But taking the whole thing out really makes me shake. I don't think I've ever felt like this - well maybe at Disney when I saw those big roller coasters or the bungie jump. No, I know when I felt this scared! - Our school was having an auction. One of the items was a tandem jump from an airplane. The president of the parent group came in and said, "Hey, Sister, I heard that you were going to do the jump and that we were going to make some money selling tickets to watch". I actually thought she meant it. Oh my gosh. Now that's something to be scared of! rotfl!
Maggie

[asn]

Maggie, get informed before you take this big step. And all my prayers for you!!!!!!!!!!!!!!!!!!!
SENDING A BIG BIG HUG!!!!!!!!!

[SrMaggie]

How long do you research options before making a decisioens

Got a go - Ambien is taking over.

[asn]

until you are sure about your decision. Search in the internet, and talk to your doctor, when he convinces you, and you are 100% sure, that is the moment.
GOOD LUCK!, MY PRAYERS ARE WITH YOU AND A BIG BIG BIG :pray: HUG

[ICLori]

Maggie, here is a link to two stories where people did not do well with augmentation:

http://www.ic-network.com/forum/showthread.php?t=27777&highlight=bladder+augmentation

Another link where bladder augmentation didn't work out (and more info on bladder augmentation in general)

http://www.ic-network.com/forum/showthread.php?t=18786&highlight=bladder+augmentation

Another case where augmentation did not work:

http://www.ic-network.com/forum/showthread.php?t=579&highlight=bladder+augmentation

Anyway, I am sure there are many more examples of augmentations that failed in IC patients (I have a hard time finding any where there were successes, to be honest - in fact I have never read of even one case of it working out well for an IC patient)....I think these stories are worth reading before you agree to the surgery.

You asked how long to research and read before you make your decision - well, it's up to you, but it's your body and your health - if it were up to me, I would spend at least half an hour or so researching/learning about what the failure rate of augmentation is for IC patients.

Blessings,
Lori

[Trishann]

I would not let a doctor take only part of my bladder out. At first my doctor was big on this but realized it won't work on IC. The new part will get IC too. He refuse to do this on anyone now because of it. I think it was a trial and error, and my doctor found out it is an error. The ones he did this surgery on, he then have to do the full bladder removal.

Unless they found out something else with it, I definitely would do your research on it and talk to your doctor about what you have learned.

Hugs, Trishann

[Judith56]

Maggie, as for the augmentation, talk to your doctor about his rate of success with it in IC patients, then ask to speak with those patients. IF he has none oor if the rate of success is not good, then do not pass go, go directly to another uro for a second opinion and discuss other options on the way of surgery. I had a bad experience with augmentation, I would not reccomend it to any one, but I am not a doctor. To answer your other question about how long to search for options- you know your tolerence level. You will know when nthe time is right to go ahead with the surgery. I put it off for as long as possible, my doctor kept telling me he could not live the way I was living, running to the bathroom every 5-15 minutes around the clock. For me it was when I realized how much it impacted on my children and my husband. We had gone to teach our oldest to ice skate on a littel brook we found. I went before we left(2 times:) ) and then we were able to stay only about 30-45 minutes before we had to go home so I could use the bathroom. I decided that my bladder was ruining things for all of us and within days I called my uro and told him to set the surgery up.I am alsways here to listen, to give answers if I can and to support you in what ever you decide.:pray: Judith

[SrMaggie]

Thanks for the posts.
I understand about the timing. That happens in so many things in life. The time comes and you know what needs to be done.

[SandyRN]

I don't have anything new to add, you've gotten such great advice, but I did want to say hello and that it's really nice to see you around the boards again!! You've been missed!!

Sandy