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.
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MeetAnOstoMate website turned out to be a lifesaver for me. I say this because, for me, this ostomy journey was a devastating event both physically and mentally.
Here, I found folks who understood my feelings even better than my family or friends could. Only a fellow ostomate can understand how you really feel.
Information sharing is key, as well as support and understanding, to ultimately bring more harmony into our ostomy life journey. I found here, virtually no ostomy questions that are not touched upon. Questions which some might feel, may be too trivial to contact a doctor about or even too shy or embarrassed to ask their own doctor about. They are all addressed here.
For me, anonymity was very helpful in seeking answers to each phase of this life changing medical and mental event. Sharing initial trauma feelings, ongoing support and finally acceptance was what I found with my membership here. I am not sure what my mental and physical attitude would be today without having found this site.
Additional benefits included: finding products and ideas to help with daily maintenance, innovative ideas and as a bonus - some great humor.
After all “laughter IS the best medicine”.
I have been a member for 3 years, an ostomate for 4 years - yes, I certainly wish I would have found it immediately after surgery but so very thankful I finally found it when I did as I truly believe it turned my troubled depression and situation into a more positive attitude and acceptance.
Sincerely,
An Ileostomate nicknamed Justbreathe 🫶🏼
Welcome to the forum, great to see you have decided to open up with us, long may it continue XX
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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?
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.
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