Just have to say this

[iamcynda]

I visit these boards almost every day, but seldom submit messages. It's mostly because I have one song. My bladder removal was great. I know everyone does not have such a wonderful outcome. Also I sure don't want to encourage anyone to have major surgery until every single option has been tried. I had the big cystectomy. Everything came out - bladder, urethra, female stuff - everything. I wanted the urostomy because I did not want to chance getting IC in an internal pouch (even though my surgeon at a world famous, well respected hospital said he has never seen IC return to a pouch.) I was determined that this nightmare would be over, and now I wear a bag. I can honestly tell you that it has just become a part of me, I never even think about it now. It is so not a big deal. I had my surgery 5 years ago. I have had no complications at all, not ever. No infections, nothing. I take no medication. Have my kidneys checked every once in a while. Nothing at all going on. I have been so lucky, but I do not have other health problems to complicate this, as many others have. That is really why I wanted to do it. I was becoming a shut-in, and could not see being disabled for the rest of my life. I could not even take my grandsons to the playground or for a walk. Now I do anything I like - go to work every day, smim, ride my bike a lot - and we just got back from tramping around Italy for a couple of weeks. I feel wonderful. Yes, there is life out there. If you have been suffering for a long time and your doctor feels that this for you, I say go for it. It was the best thing I ever did. My prayers go with you all. This is a difficult journey.

[leelee88]

Thanks for sharing your story

Ronda

[DebbieD]

I Have a Ileo-conduit for 23 years now. My Pouch is on the Outside. I have had revisions done. Yes yes IC is still in the Urine!!!!!!!!!!!!. I had to have my Kidney removed cause the Germ that is in IC Damaged my Kidney. It eats its way through the Urinary system.I have a Great DR. at the #1 University Hospital there is. YES YES IC is still here with me. I have the Path reports to show it also. Each Person and each DR. is different. Each Person has there own story. I know the Facts with My Body.It was ruining my Life also. . I still get infections. I have stents in my only Kidney to Keep it Draining. There is no Cure for IC. 80% of ostomys do keep some Kind of infection. That is way they Have to cath the Loop to get a Clean Catch.That is not Fun either.

I had severe Hunners Ulcers on the dome of the Bladder. We did everything Under the sun Before I had my urostomy. It was my Last resort


I could not have Children. I love them so much. But God has other Plans for me.

Do not mean to get feathers all up in the air, but I am stating the Facts on my Body and the Path reports and My Doctor that I have had for 35 Years....

I will be seeing him at the end of july to have an Reanal scan with Laycis.An IVP and a loop-o-Gram.Plus Blood work.

My supplies are Not cheap and they go up every year. I thank God that we Have Good Insurance and that I can enjoy Life. I have ben through the Hxxl and Back.I get my Disability Check on the First try. I Kep all Kinds of Papers to show them what it has done to me.

My Dr. told me one time that he has Never seen IC eat up Ileo- conduits Like Mine Has.

Have a Good Day
DebbieD

[mom_in_ma]

Cynda,
Glad you check in once and awhile! I'm not sure why people are being so defensive about positive bladder removal stories. I think it's because some have had complications and others don't want to scare the newcomers.

If I reached end stage or was severely disabled, I would (without hesitation) have my bladder removed. It's important to hear positive stories too. Keep stopping by when you have a chance.

[SharonA]

Hello Cynda...Thank you for sharing your story. It is very important to hear both sides. I am so pleased that this has worked so well for you. I hope continued good health for you.

I am so sorry that this did not help you, Debbie. I hope you have better days ahead.

[Kara29]

I'm glad you have a wonderful life and a good journey through this! Keep enjoying the gift. You don't have to post here. But we are so glad to hear of your outcome. Read as often as you'd like and post when ever it feels right to you. You are still a valued part of this community even though we don't see posts from you. Thank You!

Kara

[akrose]

Cynda- thank you so much for posting your story. It gives me so much hope for the future. I know I am going to have a similar posting in about 4 months (sometime in the Fall of this Year). You are definitely an inspiration for me. Aileen

[SrMaggie]

Thank you for posting IMCynda. It gives me courage in my decision. After all the research that I've done and the hours spent talking to people in the medical field listening to pros and cons I'm glad to hear that it worked for you. It gives me great hope. I'm scared to death and pray that it is the right decision for me. I can say that I've prayed and researched and consulted and there's nothing left to do. I wish you the best. Thanks for your supportive post.

[Judith56]

As the moderator of this forum, I encourage both sides to be posted. I feel people can get a more realistic picture that way. I do however think it is inappropriate to turn threads into a debate when someone is about the have the surgery. Everytime someone post a positive thread, it does not have to be negated by poor outcome stories. IT is also OKAY to have threads that are just positives. This is HIGHLY important when someone is about to have the surgery- to have to read negative things make cause unnecessary fears. Some of the things that have happened to people who post on here are not always the norm. There are many stories of successes. People who are having trouble are more likely to post than those who have no or minimal trouble. That is because those who no longer have problems tend to feel that they do not have the need for support any more.The other thing is that some of those people now no longer feel a connection to the IC community and have switched over to the ostomy online boards.

[mom_in_ma]

Judith,
Well said. Akrose and Sr. Maggie, here's to a speedy and problem free recovery!

[Trishann]

Bladder removal thread has been a life saver to me. I have learned so much. Yes I heard some scary things that absolutely terrified me and these were the con’s and I heard some amazing good things which were the pro’s. Also I did some research on my own to learn more about the risk and about the good. No matter what it is a major surgery and the outcome we can only hope for the best. When people have their bladder taken out it is because there is no options left and they are ready to take a risk because the bladder they have now is not working for them (the bladder is damage completely) and their life is stop because of it.

I pray when I decide to have my bladder remove (which I put on hold because of other health issues and not sure if my body can go through a major surgery) but I hope I will receive encouraging words from you all and blessings. At this POINT OF TIME of having surgery schedule I don’t think I could bare any scary words. If I did I couldn’t come here to get the support I would need so much.

Please especially to thoses who had their bladder remove please try to understand what I am saying. My heart goes out to each one of you and I wish you ALL had good outcome of it. And I do believe we should talk about the pro’s and con’s about bladder removal because we should know the risk before we decide to do this. BUT at surgery time we just need GREATLY THE SUPPORT AND BLESSING.

I am not very great with words but I hope you all understand what my heart is saying. Each one of you I admire greatly and your courage is so amazing. And for those who had their bladder remove and it did not go so well I pray that some how things will start working right, my heart goes out so much for you. The strength you have to continue to fight and go on makes me feel if for some reason it don’t work for me, I still can continue to have a life, thank you so much.

Sending hugs to all, Trishann

[Judith56]

Thanks Trishann, for your input- well said

[Babs RN]

Judith,
I just wanted to thank you for all your hard work and eloquence when it comes to the whole bladder removal topic. It has so many twists and turns and it is so wonderful to have such a great resource like you to come to. Know that when I choose the time(I have already made the choice to do it)I am headed your way.

Hugs and love,
Barb

[SrMaggie]

It is not an easy choice. When I first came to these boards and saw people writing about it, I said, "No way would I EVER do that!" I kept reading and shaking my head wondering how anyone could go through all that surgery. How anyone could make such a decision. I never thought that it would be me.
After trying everything under the sun and having nothing work, there just isn't anymore energy left to try anything more - and actually there aren't anymore things to try. The decision is almost made for you.
I find myself having made the decision and I'm amazed that I did. It didn't happen overnight. It took a long, long time of trial and prayer and talking and researching. Everytime someone makes the statement about it being the last treatment - guess what - I know that. I wouldn't even be considering it if I didn't realize that.
So ladies, courage. Courage means heart! Take heart. You are strong. You can do what you need to do to be the strongest woman you can be. Go for it, whatever it takes.
God bless.

[Trishann]

Maggie just dropping in to say and to let you know I am thinking about you and praying for you too.

Take care, Trishann