It has been 18 years now!

[DebbieD]

I had ny Bladder removed 18 years ago as of Decenber 3rd. With 3 revisions. Still have those Kidney Infections but I am better than what I was. The Bag is not so bad after all. I use to cath myself every 15 minities. Now That hurt. Just found out today that I have another Kidney Infection. But that goes along with it. 80% of Ostomy Patients keep some sort of infection all the time.I just go with the flow.

DebbieD

[Kara]

I just had my bladder removed and replaced with a neobladder in June and I too am suffering from infections but my doctor is working on it. I just has surgery on Friday and stayed in the hospital as it was horrendous pain! They had to remove some scar tissue in my urethra, dialate it, and make 4 cuts into my bladder neck b/c it was closed shut and would not allow the mucous to drain, therefore causing an ongoing infection. But Like you, I love my new bladder and would never trade it for the world. I am trying to take good care of it.


Kara hi

[Judith]

Debbie, Happy Birthday to your ostomy! Mine just celebrated it's 17th birthday. I agree with you and Kara, that infections are part of the package, but I still wouldn't trade it and go back to having an IC riddled bladder. Judith bunny

[Alisha]

Kara,
I have been discussing the neobladder surgery with my Uro., because I am at my wits end now. No relief from any drugs, bladder instills, nerve blocks, interstims, or pain medicines. Things just are really looking down right now. I was so excited when you posted after your surgery and told us you were doing well, but lately you have been having some horrible infections that are leading to more surgeries and pain. I feel you have really touched me on this board. You are so strong and brave to go through all that you have. I guess now I am getting more scared to want the surgery because things could go so wrong. I know you said you can't tell you have an infection anymore. Well, how do you know to treat it, and can't an infection spread if untreated and really damage another organ or even kill you? I know I saw that Judy and Debbie posted about their frequent kidney infections....are they painful? I have had kidney stones before and OH MY GOD!!! Anyway, if you don't mind, I would like to e-mail you so we can talk about this more. Sending my infection-free thoughts and prayers.

Alisha

[julesb44]

I've only had my pouch for 7weeks so it is hard to be too objective. I had 2 kidney infections right after I got out of the hospital. I knew right away because I had back pain and a fever. Once I started antibiotics, I was fine. I haven't had any other problems since that. Those infections were much easier than the problems I had with my bladder. I feel I am much better off! I'm still healing and leaking some, but at least I don't hurt all the time! I'm already spending much less time in the bathroom.
Take care everyone! Julie grouphug

[Yvonne]

Hi Debbie,

Happy 18th anniversary!!!!! I haven't posted on these boards for so long. I have spent most of this past year in and out of the hospital with one kidney infection after the other. I am coming up to my 5th year in August of getting my ileo conduit and I can honestly say I wish I would have never done it. I have been almost bed-ridden with infections and the abdominal pain. I have no life. I am one of the really bad cases that was left to long and it spread to my urethra and is still causing me problems. I hate to throw in a negative post but when I had my ileo conduit done I sure would have liked to have read about all of theses complications before I had decided to have my surgery. I unfortunately didn't have a choice in the matter as my bladder was diseased to hold only a teaspoon or less but I might have thought differently about going through the augmentation and then the ileo conduit back then.

I can't go back to then but have to go from here on but my only kidney is damaged and I am tired of all of this.

God Bless you all with your different stages of IC. Take care wink

[Kara]

Alisha,

My email is klkreese@twcny.rr.com

Please email me anytime!!!!

I'm more than happy to answer all of your questions....

My Heart goes out to you at this moment of disaster!


Love,