Will you all still love me even if I wake up with bag for the rest of my life?

[Kara29]

I am coming to terms with how serious this surgery is and the fact that despite all of the best efforts I still may end up waking up with a bag on the side of me an ileal conduit. I am wondering if you'll all still love me if I have to live like this for the rest of my life? My Husband says he will be happy if I make it out alive and does not care about how I will wake up as long as I am not in too much pain. My doc went through plan A B and C. A is the option I want which is to have them turn my Neobladder into a diversion to my stomach with a stoma. Plan B is that they can't use my neobladder and will have to start over and take out more of my intestines and recreate a new bladder and divert to my abdomen in a stoma, plan C which is where I am having the road block is that they could save nothing and ended up diverting me to an ileal-conduit which is an external bag on the side of me for the rest of my life. I am not ready for that and I pray that it does not come down to that in the end. The hardest part is none of us will know a thing until he opens me up the day of surgery. I will go under not knowing like having breast cancer thinking you are going in for a lumpectomy but waking up with both breasts gone and being disfugured for ever. I am so scared I can't help it. I have lost all perception of myself here. I want to go into surgery with the best frame of mind but this doc did not hold any info back from me and I sort of wish he had. I feel like I know too much and somtimes that is not a good thing. Although I'd be pretty mad if I were not forwarned ahead of time that I was going to wake up with the possibility of a bag.I have a therapist but she does not deal with life altering surgeries. I know Allen won't leave me but I am afraid I will leave me. I am afraid if I wake up from surgery they will tell me there was nothing else they could do and push me foward. I am afraid that if I am told in the ICU in my fragile state that I did indeed wake up with a bag, that I won't fight to live through the ICU recovery. I am sorry I am supposed to be supporting others here on this surgery but I am having a hard time dealing with the loss of my looks down there. I cherish my body and this will be a VERY hard change for me. Lets hope this doc can plan A or B and avoid C altogether.

Oh and of course I have to add that there is no gaurantee that any of these surgeries will relieve my urgency and frequency in the end. The doc just wanted to be real to me which is hororable but I am not used to this. I am used to a doc telling me nothing going into surgery and me knowing nothing and I think that was better in some ways because I was less scared.

I am just venting my cold feet and fears. I am just human.

Love,

Kara :headbang: :headbang: :headbang:

[angelgirl]

praying for you

I think what your feeling is natural and normal. I think it will take time to come to terms with having a bag if that is in fact what happens. You are blessed to have a husband who supports you and loves you as he does.

[Mel53H]

:pray: :pray: for plan A or B. C is out of the question. We won't even think about plan c. I am thinking positive thoughts for you. OK!!

It sure sounds like you have a gem of a husband. What a sweetheart he is to be there for you through all of this.

BIG :grouphug: and :kissing: to the both of you. I am pulling for you!

Mel

[ihurttoo]

Dear Kara, Okay, let's take one thing at a time here and deal with them. First of all, I hear you saying that you will feel unloved if plan C occurs. I would hope that by now you would know that there is no one who loves you who is that shallow. You are not loved by anyone for your bladder. You are loved for your essence and spirit. I am not trying to mininize the devastation of having a bag. But I am saying that it would not matter to anyone who loves you. It is not remarkable or praiseworthy to me at all that Allen would stay with you and still love you if that occured. It would never even occur to me that he would leave. Your marriage would have to be rooted in something pretty shallow for him to leave over that, and I know that it is not. I have heard you interact together, and that man loves YOU. Yes, I am sure that he is proud to have a physically beautiful wife. But you know what, he will STILL have a physically beautiful wife, no matter what happens. Even IF the very worst outcome occured, you would still be beautiful. No one would be able to see it when you walk down the street, or anywhere else. You would still going to be able to turn just as many heads as you ever have. In fact, no one would ever see it besides you, Allen, and your doctors. And for you all, it would just become normal, and not something that you would give any thought to after a while. Besides all of that, I also want to point out that you would also be pain free. No matter what, you are going to be able to move on with your life very soon. You are going to be getting back most the life that IC has stolen from you. I truly have faith that this is going to end with the best possible outcome. I honestly do. I wouldnt tell you that if I did not think so. Do you want to know how I know? THIS is how. I havent told you yet, because I know that you are not particularly religeous, and I although I am, I dont want to come across as a religous fanatic either. But, when I pray for someone or something to happen, if it is not going to happen, I really dont feel much. But if it is, then I always feel a sort of peace wash over me. Kind of like God saying, "Alright, I'll take care of it, now there, there, I mean it, dont worry about this any more." And I have felt that when I have prayed for you on this. I have never told anyone about this before. I dont know if others get this same kind of feeling or not. I think they probobly do, but maybe they just arent tuned in to it. I just dont know. But I do know this. EVERY single time I get the feeling, it really does work out okay. I have never been disappointed when I have trusted this. He just takes care of it. Even if your faith is not strong enough here, lean on mine and trust with me. It IS going to work out okay. If you want to talk, please call me. I dont ever want you to think you can "wear me out". That's what friends are for. Love, Amy

[emilyrose197377]

:grouphug:

[dancemomof2]

Kara, vent away you are about to go through a major step in your life. I know an dyou knwo everyone will still love you. Your heart isn't changing and your compassion won't change. Sending hugs to you and prayers to you and your family through all of this.

[creatingkarma]

You will still be just as beautiful & loved as you are today! :kissing:

[patricia1]

Karma said it best you are and still will be just as beautiful & loved as you are right now. What you are going through is the hardest someone has to deal with and you only want a somewhat normal life and should the unthinkable happen we will still love you the same, nothing will change that. :kissing:

[Judith56]

Kara, I did have an ileal conduit to start with. There is no way you will have frequency or urgency with it, because the urine just comes out on its own accord into the pouch. You may still feel the urge to go in the beginning, but with time it goes away. If that does happen the best thing to do till the feeling passes is to sit on the toilet. You will not smell. The pouches they make are odor proof, the only time you will possibly smell is if it leaks and that only usually happens if you wait too long before changing it. I was 30 years old when I got my ileal conduit and my husband did not care in the least. He was just so happy that I was no longer running to the bathroom every 5 minutes and that I could now lead a normal life. Yes, there is an adjustment period, but by keeping in touch with other ostomates you will get the support you need. BUT who knows, it may never even come to that. I know it is hard not to focus on the negative aspects, but it is highly important for your mental health to try and take things one step at a time. Until your surgery try to live each day to the fullest, do nice things for yourself. As for the questions of urine sloshing around at your side it is not like that at all. The pouch is held firmly against your body it goes inside your underpants and you can wear the same clothes that you do now. You can go swimming or do just about everything you do now physically. The only thing I have restrictions on is heavy lifting and that does not bother me in the least! As I have said before I am ready and willing to answer your questions. All you have to do is ask. Above all else remember you are still you, just because you will urinate in a different way does not diminish the person that you are. You are a person first, and you just happen to have an ostomy. Noone has to know you have one unless you choose to tell them. Most people are do not believe that I have one, because I do not look any different than them or act differently. It will be the same for you if you choose it to be that way. Judith

[ICNDonna]

The others are right. And even if the worst did occur and you end up with a bag, if it fits correctly (and as slim as you are, it should), there should be absolutely no odor. I have a friend who wears a bag for fecal matter and even that has no odor. Only a few people know he has the bag.

Warm hugs,
Donna

[SharonA]

Kara...I really don't have any advice to give you. All I can tell you is this: You have been loved and prayed for in the past, you are being loved and prayed for now, and you will be loved and prayed for in the future.

Honey, you are facing some hard times right now. You have faced them in the past. Do you know what my first "real" memory of you is? It is the post where you and your bladder were saying goodbye to each other that you wrote when you were facing its removal. It inspired me then and it still does, now. You are a true hero in my book. I was newly diagnosed with IC when I read that post. I decided then and there that no matter what this disease did to me, I would face it with the grace and bravery that I saw in you.

I love you, hon and will continue to lift you up in prayer. :kissing:

[marye]

Kara, I'm betting your husband just wants a pain free happy wife. You wouldn't be normal if you weren't apprehensive. Once you reconcile yourself to option C you'll be really delighted to find out this wonderful surgeon pulled off A or B! You've been blessed with beauty that won't be marred either way. Best of luck. Mary

[Imustpee]

Kara, of course we will still love you.. :kissing: ....you are one of us... :bonk: ...I am positive that everything will work out for the best...If Dr S learned anything from Dr R he will be caring and compassionate and do everything he can to do the best for you. I wore a foley for 4 months before my surgery..I had a leg bag and a waist bag...there was no smell and no one knew I was wearing them. There are sites online where you can buy beautiful panties and other undergarments that are pretty and sexy. If it comes to having the bag that will mean that you will be IC free...to me it was worth having the surgery..I have no IC symptoms at all anymore. Whatever the surgery you will be healthier and much happier, you will have a life away from the toliet..I only sit on the toliet once a day now since I pee standing up!
...I am sure whatever happens you will be very happy... we are all here for you.... :)

[Mrs. Burschman]

Kara,

It makes no difference to us how you pee! All we want is for you to not be in so much pain.

And remember: You are not your body. They could take EVERYTHING from the waist down and you would still be you. You would still be lovable. And you would still be beautiful.

Amy (Mrs. Burschman) :bunny:

[Kara29]

Thank you all for you kind words. My heart is filled with what you all said. Amy thank you from the bottom on my heart for having the faith that I am not strong enough to carrry with me right now. I am trying but when you have not grown up religious it is so hard to pick it up and use it when you need to. Judith the questions will be flying at you soon at mock speed! You'll be so sick of me it's not even funny.

I wish I could get some of the hotel reservations done but I have to wait for the doctors office to do some paperwork before any of that can go through and I can't make plane reservations unless I know at least where Allen and I are staying the first night. We need to be there on the 30th because my bowel prep is taking place on the 1st and we have be to at the Hospital at 5:00AM on the 1st and surgery will start at 7:00AM on the 2nd. So I need all of the paperwork to go through the secretary then through Real Estate in order to have a place for my family to stay for the duration of the surgery and the week following it. Their cost is 125.00 per night. It goes through the Hospital as a Request for Stay for Major surgery cases such as this one. Once all of the paperwork goes through those 2 offices, then we can set up our plane flights. So I am in this horredous waiting pattern that I have no control over and if the paperwork does not all work out, then we have to spend anywhere from 500.000 per night up to 1,000 per night. So I need this all to work out so I can make my plane flight and then try to relax myself as much as possible. But I am having trouble with the groundwork and planning and my mom is re-doing her kitchen and can't take over this part so it's on me. I want this stress gone so I can work on relaxing myself for the actual surgery................sorry I am pouring out my plans here but sometimes it helps to see it written down and some day I will look at this and laugh at it.

Thanks for listening to and loving me for the crazy Kara that I am!

Love,

Kara :loco: :loco: :loco:

[Judith56]

Kara, I am ready for the questions, but if I dont answer right away do not get upset. I do work so I am not always around, plus I share my computer with 4 other people, just wanted to give a little warning,okay? You really are truly fortunate to have such amazing support from your family! When ever I have had MAJOR surgery, my husband took the day off to be there, but after that I have always been on my own. I ahve two children so he needed to be there with them and go to work. Plus for most of my surgeries, I have usually been in a hospital that is a 45 minute to 2 hour drive from our house, depending on where I had it done. I have had 8 big time surgeries. For a few of them my mom has been able to be there for a day or so, but that is it. So I am jealous. It is incredibly hard to go through all that when you are on your own. I will say though that the hospitals I have been , the nurses have always been extra caring since I was there by myself. As much as a pain it is to get all the arrangements set at least it can help to take your mind off things! Judith

[KellyC]

Dear Kara, Okay, let's take one thing at a time here and deal with them. First of all, I hear you saying that you will feel unloved if plan C occurs. I would hope that by now you would know that there is no one who loves you who is that shallow. You are not loved by anyone for your bladder. You are loved for your essence and spirit. I am not trying to mininize the devastation of having a bag. But I am saying that it would not matter to anyone who loves you. It is not remarkable or praiseworthy to me at all that Allen would stay with you and still love you if that occured. It would never even occur to me that he would leave. Your marriage would have to be rooted in something pretty shallow for him to leave over that, and I know that it is not. I have heard you interact together, and that man loves YOU. Yes, I am sure that he is proud to have a physically beautiful wife. But you know what, he will STILL have a physically beautiful wife, no matter what happens. Even IF the very worst outcome occured, you would still be beautiful. No one would be able to see it when you walk down the street, or anywhere else. You would still going to be able to turn just as many heads as you ever have. In fact, no one would ever see it besides you, Allen, and your doctors. And for you all, it would just become normal, and not something that you would give any thought to after a while. Besides all of that, I also want to point out that you would also be pain free. No matter what, you are going to be able to move on with your life very soon. You are going to be getting back most the life that IC has stolen from you. I truly have faith that this is going to end with the best possible outcome. I honestly do. I wouldnt tell you that if I did not think so. Do you want to know how I know? THIS is how. I havent told you yet, because I know that you are not particularly religeous, and I although I am, I dont want to come across as a religous fanatic either. But, when I pray for someone or something to happen, if it is not going to happen, I really dont feel much. But if it is, then I always feel a sort of peace wash over me. Kind of like God saying, "Alright, I'll take care of it, now there, there, I mean it, dont worry about this any more." And I have felt that when I have prayed for you on this. I have never told anyone about this before. I dont know if others get this same kind of feeling or not. I think they probobly do, but maybe they just arent tuned in to it. I just dont know. But I do know this. EVERY single time I get the feeling, it really does work out okay. I have never been disappointed when I have trusted this. He just takes care of it. Even if your faith is not strong enough here, lean on mine and trust with me. It IS going to work out okay. If you want to talk, please call me. I dont ever want you to think you can "wear me out". That's what friends are for. Love, Amy


I seen a new urologist today. He said I have exhausted all medical alternatives to bladder removal. Amy, you do, I have almost identical health issues. I got home, opened my mail, and I had Joyce Meyer packet to open. So I opened it, no disease, no problem is bigger then God. I have seen over 35 doctors in my life. Now they want me to go to the Cleveland Clinic Urology Institute. There is nothing more doctors can do. I can't imagine with a bladder removal having the grass greener on the other side. Where does it end? A general question, Is there any history of IC in your family? -Kelly

[ihurttoo]

Dear Kelly, I am sorry you have so much on your plate too. No, I am the only one in my family with my issues. I had an aunt who they thought had IC, but it turned out that she didnt have it after all. There are many on here that have the same health issues that you and I do. I am glad you found the ICN. I hope you stay with us. You have found a place where people understand. Please pm me anytime you need someone to talk to. Sincerely, Amy

[Kara29]

Kelly,

Welcome to the ICN. If you have your bladder removed. We are all here for you. I've been through it once before and I am about to go through it again. Let us know what you decide to do. IC is not on either side of my family. Just me. For some of us bladder removal has made the grass healthier and greener on the other side.

Kara :welcome:

[Katrina]

:welcome to the ICN Kelly! Kelly....I hear so many people say that their doctor feels that they are out of options when they truly aren't. Contact me if you are interested in some options you may not know of. If bladder removal is the option you choose I hope things work out for you.
Kara, You always have our love! I know your fears of plan C....I have them all of the time because my pouch is doing so badly these days and you and I are the same age so I worry that one day I may live with a bag outside my body (and it would be full of #2, yuck!). I have no more spare small intestines left so when this pouch says no more than bag for me. My husband is a great guy but I remember what it was like to live with a bag. I did so for a whole year before they made my pouch...nights were the worse times.....but I was just a kid a lot of the bad stuff I have about it people tell me there are ways to work around and prevent. None the less I want to avoid ever having to choose that option. :grouphug: :grouphug: :kiss:

[Judith56]

Hi Kelly, I also wanted to welcome you to the boards. It has been almost 20 years since I had my bladder out and YES, the grass is greener without it. I do think that I would have been able to do all I have done in the past 20 years if I still had my bladder. I have had just about every b;adder surgery that is out there- augmentation, and ileal conduit and I currently have an internal urostmy pouch also known as an Indiana Pouch. I absolutely love it. I can sleep through the night, go on long car trips, drink as much fluid as I want etc. and not have to worry about where the closest bathroom is. Life is truly good. Please feel free to ask me any questions you may have. For many people getting thier bladder out gives them a chance to live a more normal life. I know that is how it is for me. Judith

[Imustpee]

Kelly, I had my bladder removed 14 weeks ago...I am VERY happy! :woohoo: I am going 4 hours between cathing during the day and last night I went 5 1/2 hours, and was up only once in the night!..my new Indiana pouch is still learning it's job and I am increasing the times between caths slowly...I hope to go longer every week...I can eat and drink what ever I want! I had 3 cups of hot tea at my fav Chinese place today! I could never do that before! I am also willing to answer any questions you may have,,,I am glad you found us... :)

[sandramac]

hI kELLY WELCOME!Kara I love you! NO MATTER WHAT YOU WAKE UP WITH AS LONG as you wake up thats all that matters!IM SURE allen and your family feel the same way.Email me when you need to talk im here waiting!LOVE AND HUGS SANDRA

[massagedoula]

Kara,
A good friend of mine has an external bag because he is a quadrapelegic. I am also his massage therapist so I can say for certainty that there is no smell whatsoever. I don't even notice it except when I have to lift his legs on or off the table, then I feel the rubber piping. Thats all. If you have a happy pain free life, I would hope it would balance out the plan C, if it came to that. Love and Best Wishes to you.

[Julie B]

Kara, I don't have much to add except that you will make it through no matter what happens. If you are pain free and healtier in the long run, that will help you live the rest of your life happier........

I am always in awe of families who have to deal with their loved ones who had accidents, or were war victims, or had cancer only to lose one body part or another......or become a para/quadraplegic......or consider Helen Keller........she lived an amazing life......lived to 88, traveled the world.......and continues to inspire millions of people facing adversity each day.......

You have a wonderful group here who can share their experiences with you.......and a fabulous magnificent husband..........I am willing to bet that when this is all over....you will feel peaceful about your decision.........and the doctor's decision.........

XOXOXOXOX Gentle Hugs.......Julie

[curlycue]

Kara I will keep you in my thoughts and prayers. Good Luck Friend

[Kara29]

Thank You Julie, that was nice of you.

Yes I do have a wonderful Husband who tells me I am stuck with him no matter what happens. He's stronger than the two of us right now I feel. He's carrying me. I don't know how he does it?


Kara

[carly]

Kara, I am sorry for what you are going through, however, I think what you wrote was very insensitive to those of us that have an external bag. I don't consider that I walk around all day with a "piss bag". I wanted an internal bag, but they couldn't do it. I am glad I didn't die after surgery just because I woke up with an external bag. I always tell myself no matter how much pain I am in, Thank God I don't have bladder cancer. The majority of those people all have an external bag, along with chemotherapy, and by the way they don't always live. My surgery was Nov. 1, and I cried when I read what you wrote.

[Kara29]

Carly,

I'm sorry for hurting your feelings it was not directed to hurt you or anyone that has a bag.


Kara

[KellyC]

I'm going to call my gyn tomorrow and see if she'll just keep watching my urine every 2 weeks for infections and prescribe my meds. I get pain meds from the oncologist. As long as she is willing to do this, I don't really want to keep spending money on another urologist that doesn't want to treat me. I'm not ready psychologically to have my bladder out. I am still going through hysterectomy grief. I had that done in January. In some ways I feel better. My biggest problem is the infections. I have a blood disorder- hypogammaglobulenemia. I don't produce enough immunoglobulins to fight infection. Plus I have a candidiasis infection that has basically affected everything in my body. Do any of you have this problem? Any sugar can cause me to flare, so logically its very possible that it is also a yeast problem. The holistic doctor is treating that with prescriptions, herbs, and a no sugar diet. He told me the candida can also grow in the bladder. The last time he treated me before the last whirlwind of antibiotics, I did improve. I had to follow the diet to a T. So for now I've decided to hopefully just be under my gyn's care, follow my holistic regimen, and wait for God to heal me. Along with what my doctor gave me, I've been reading Dr. Don Colbert's book on Candidiasis. It's been helpful and makes sense for even the bladder that which is a mucous membrane, could be affected my yeast. I have also started taking a homeopathic product, Hyland's Bladder Irritation. -Kelly

[emilyrose197377]

:welcome: to the ICN Kelly.

[KellyC]

Do any of you ever get a "backed up" feeling with your urine and ditropan? I get pain in the kidneys if I take more then 2 a day for a few days.

[Annic]

I think you are referring to urinary retention and yes I did have the problem while I was taking Ditropan. My kidneys ached for a long period and then when I discontinued the medication my kidney problems went away.

[DebbieD]

Kara I have Been Married for 21 Years to a Wonderful Man that accespts me for who I am. I had my Bladder totally removed 2 months Before we got married and we have Been togethere for 21 Years. He has Ben my sole supporter through all my trails of Surgeries and we are still Facing alot of things.

Hugs
DebbieD

[Judith56]

Kara, I also wanted to add that if someone only likes you because you have a bladder than they are pretty shallow and not worth getting upset over the loss of thier friendship. The other thing I would like to say is that if you are in a good healthy relationship or marriage than the ostomy should have no effect what so ever. This coming Sunday my husband and I will be celebrating 28 years of marriage together. He stood by me through all I have been through. The diagnosis right after we got married, all the surgeries, etc. Try not to work yourself up about what might be and instead focus on the positive things. When you have a positive attitude (though it can be hard to do) it makes living and dealing with things easier. Try to seek out the silver lining, it may help you get through things. Judith

[Kara29]

Allen and I have been together for 14 years now and he's been through the whole first bladder removal. He's not as upset over it than I am. He just wants me to come out and be alive and happy. If he's happy with that I guess I should try to be too. I talked to someone yesterday that knows lots of Indiana Pouchers and Ostomates. She says most of them are all happy with thier lives in one way or another and that she feels like this doc is going to do every thing he can to give me a better life. You would not catch me going to NYC otherwise. Boston was so much easier.

Thanks for your continued support. I will be needing it in the weeks and months to come!

HUGS :grouphug:

Kara

[green_the_fish]

Kara, I am still thinking of you daily and trying to send positive thoughts :grouphug:

It's wonderful that your husband and family are so supportive. Sounds to me like they would love you no matter what :)

[icnmgrjill]

I'm going to close this thread because it's gotten very long and is now covering several different topics. Please make sure you use the correct forum when asking questions about specific topics.

Big HUGSSS to everyone!!

Jill :)