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.
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.
This is a remarkable community of 40,900 members.
You will get real advice from fellow ostomates who truly understand you - things you won't find in the books.
And it's not all about ostomy - there is friendship and relationships too.
Privacy is very important - your profile is not visible to the outside world.
mild_mannered_super_hero
Great place for newbies to learn, I have helped many folks on here learn to irrigate, plus learned a few tricks myself. Great informative site.
Welcome to the forum, great to see you have decided to open up with us, long may it continue XX
Words of Encouragement from Ostomy Advocates I 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?