Hi Ostomates, I have been in this forum since 2011 but never shared about me. Thought I will share about my experience being an Ostomate if it can be an encouragement to anyone. I had my urostomy at the age of 14. No Cancer, no bladder disease! I suffered chemical burns of the bladder & sphincter muscles when I went for a cystoscopy at the local hospital. (For those who don’t know about Cystoscopy: in the 80’s this procedure was done by filling the bladder via catheter with 2% Potassium iodide solution and taking an X ray to check for possible stone in the bladder or possible changes in the kidneys. These solutions were prepared by the nurses or Pharmacist during that time.) Following this, I had septicemia and went into coma for 15 days with acute kidney failure. The kidneys recovered after peritoneal dialysis, and I came out of Coma. But my bladder was completely damaged, and I had incontinence. After a year of waiting (and incontinence), I had my Urostomy (Ileostomy)surgery and reborn again 😊. Though there are small glitches being an ostomate, like occasional midnight leakage, or sudden leakage during work hours, strong odor of the bag, it’s been 38 years of Ostomy life. I can’t recollect how it feels to pee normally 😊. Like I read in one of the comments, we have pluses too. I don’t need to sit on the public toilet seat! In 2010, I underwent nephrectomy (right kidney) as there was an 8cm stone in my right Ureter, which caused hydro nephrosis to that kidney. I am thankful to God for these experiences. I like being in this forum to read/hear, what others go through in their ostomy life and take inspiration from their journey’s.


Hi Sounida welcome to the site, i also suffer from kidney stones and needed one large one removed, i,ve also been an ilieostomate for 30 some years and have had a few accidents along the way

Welcome to the forum, great to see you have decided to open up with us, long may it continue XX

Hi sounida, I am happy you shared your story after being on here since 2011. You certainly had a hard journey. I am glad you’re sharing and taking part in the forum now. Things have come a long way medically since 2011. Stay healthy.

ron in mich wrote: Hi Sounida welcome to the site, i also suffer from kidney stones and needed one large one removed, i,ve also been an ilieostomate for 30 some years and have had a few accidents along the way |
Thanks for sharing Ron. Hope you are well now. My stone was in the ureter and had to be removed via surgery. These were formed by an organism Pseudomonas . How did they remove yours?

sounida wrote: Thanks for sharing Ron. Hope you are well now. My stone was in the ureter and had to be removed via surgery. These were formed by an organism Pseudomonas . How did they remove yours? |
Hi sounida the stone i had never made it out of the kidney and it started an infection so they went in via the catheter and lasered it.

ron in mich wrote: Hi sounida the stone i had never made it out of the kidney and it started an infection so they went in via the catheter and lasered it. |
Hi Ron,
Okay. take care. nice chatting with you :)