Living with Ostomy: My 38-Year Journey

Hi Ostomates, I have been in this forum since 2011 but never shared about myself. I thought I would share 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 and sphincter muscles when I went for a cystoscopy at the local hospital. (For those who don't know about cystoscopy: in the 80s, this procedure was done by filling the bladder via catheter with 2% potassium iodide solution and taking an X-ray to check for possible stones 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 a coma for 15 days with acute kidney failure. The kidneys recovered after peritoneal dialysis, and I came out of the 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 was 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 8 cm stone in my right ureter, which caused hydronephrosis 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 journeys.

Thank you so much for sharing Sounida. 😊

Hi Sounida, welcome to the site. I also suffer from kidney stones and needed one large one removed. I've also been an ileostomate 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

Welcome to the site, thanks for sharing.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

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.

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?

Kidney stones ... Been there a few times .. blah

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 :)

Good for you Sounida! There is a Chinese expression..Grief shared is halved. Joy shared is doubled. That is why sharing on this site is so beneficial!