IC Bladder Chronicles
Author/writer, photographer, Interstital Cystitis (IC) patient advocate and educator. By 2000, I was informed I was in end stage of this disease.
In 1997, I was diagnosed with a incurable bladder disease called Interstitial Cystitis. After 8 months of instilling heparin and marcaine into my bladder and having to cath myself, I agreed to let the doctor remove my bladder to avoid kidney failure and dialysis. It's been a journey over the past 17 years and 24 surgeries later, but I've learned so much about myself and my body. If you have any questions, don't hesitate to ask...that is exactly why I decided to open up and share my experiences.
22/06/2024
https://keck.usc.edu/news/urologists-to-perform-worlds-first-bladder-transplant/
Urologists to perform world’s first bladder transplant Press Release Urologists to perform world’s first bladder transplant Surgeons with Keck Medicine of USC launch clinical trial to enroll first-ever bladder transplant patient after multiple successful research procedures April 30, 2023 The Keck Medicine of USC surgical team evaluates the integrity ...
24/05/2024
Trial to investigate efficacy of aloe vera in patients with interstitial cystitis "We have over 30 years of safety data, and no adverse events in over 30 years," says Heather Florio.
18/11/2023
I miss my girl terribly 🥺💔
Today marks 6 weeks since I had to say goodbye.
Love is love and loss is loss.
I've loved and lost many wonderful animals in my life but this girl had the biggest impact on my life and taught me many cherished life lessons.
She was one of a kind.
"Everything I do, reminds me of you."
Van Morrison-Reminds Me Of You
11/10/2023
31/07/2023
6 Symptoms of Candida Overgrowth (Plus How to Get Rid of It) Candida yeast naturally lives in and on your body, but an overgrowth can lead to health problems. Here are 6 signs of Candida overgrowth and how to treat it.
05/06/2023
Diagnosis of Interstitial Cystitis - NIDDK Learn about how a doctor can diagnose interstitial cystitis (IC) with questions about your medical history, a physical exam, and diagnostic tests.
05/06/2023
Interstitial cystitis - Symptoms and causes Bladder pain and urinary frequency flare with certain triggers if you have this condition. Learn about treatments and self-care.
02/11/2022
For those unfamiliar with parastomal ulcers, this is one that I'm currently dealing with.
The pain is indescribable!
21/09/2022
This is what you end up with when the Urologist says they need to remove your bladder because of IC.
Granted, mine has been butchered by surgeons at Duke Hospital and I continue to have skin issues, hence the scarring and chronic ulcers.
07/08/2022
Autoimmune Hives: Causes, Symptoms, Treatments, and More Autoimmune hives may not always have a known cause, or could be due to an underlying condition.
04/08/2022
ICers are already stressed enough because of IC issues...this is more proof that we need to keep our stress level to a minimum.
I know...easier said than done.
Did you know...
Yeast overgrowth can affect more than just your skin or ge***al area?
It can spread to your organs, bones, brain and bloodstream, which can be fatal.
Never let a suspected yeast infection go untreated.
03/02/2022
Fibro and IC often go hand in hand
Fibromyalgia - Symptoms and causes This complicated disorder amplifies painful sensations by affecting the way your brain processes pain signals. Medications, therapy and exercise can help.
I strongly believe there is a connection between IC and yeast overgrowth
17/12/2021
The inside of my IC bladder with Hunners ulcers.
A cystoscopy is one of the surest ways to detect IC.
So...this is what happens when they remove your bladder because of end stage IC. (photo in comments).
21 years later the Mayo Clinic states that this isn't recommended for this disease because of the other issues it can cause...no kidding!
I could have told them that, many years ago.
Because IC is an autoimmune disease, my skin is constantly breaking down and I get painful ulcers...and you have to wear a pouch over the stoma (the piece of ileal colon, in the center, that is used for the diversion).
Any questions, feel free to ask.
14/12/2021
An older article on IC
https://www.latimes.com/archives/la-xpm-1988-09-04-vw-2330-story.html
Hope for Baffled Victims of Interstitial Cystitis It can be agonizingly painful and embarrassing, jeopardizing careers, relationships, even sleep.
Our Story
In 1997, I was diagnosed with an incurable bladder disease called Interstitial Cystitis. By 2000, I was informed I was in end stage of this disease. After 8 months of instilling heparin and marcaine into my bladder and having to cath myself, I agreed to let the doctor remove my bladder to avoid kidney failure and dialysis.
It's been a journey over the past 17 years and 24 surgeries later, but I've learned so much about myself and my body.
If you have any questions, don't hesitate to ask...that is exactly why I decided to open up and share my experiences.