Hello all,
I am hoping to get some insight from those of you who have both a colostomy and urostomy due to a neurogenic bladder. I am a 32 year old female with Spina Bifida myelomeningocele and am paralyzed from the waist down. I use a manual wheelchair. I had colostomy surgery 9 years ago and it's one of the best decisions I've ever made and improved my quality of life massively after years of failed bowel programs and a MACE procedure that didn't work out. I spent the first 23 years of my life worrying about having accidents on a daily basis and now I don't think about it at all. Adjusting to it was a breeze once I found the right supplies. I'm so grateful I had it done and only wish I had done it sooner.
Finding a good solution for my neurogenic bladder has been more difficult. I have had a mitrofanoff since I was 5 years old so I in-out cath multiple times a day, but still struggle with leakage. I have tried multiple medications and Gemtesa seemed to work for a while but suddenly stopped working entirely after about a year. I have had 2 failed bladder neck closure procedures in the past 5 years. I've tried Botox injections a few times without any improvement. I am still having to wear diapers and it's a constant worry for me when I'm out of the house and I'm just overall exhausted by the daily stress it brings me. I'm also prone to bladder stones and have had to have several surgeries to remove them over the past 15 years.
The reason I've put off getting a urostomy is because it's irreversible and I wanted to see if there was a way to make my mitrofanoff work without worrying about leakage so I could avoid getting another bag. But I'm at the point where I can't imagine having an extra bag is somehow worse than what I'm dealing with now every day.
I would greatly appreciate any insight from those of you who relate to any of this and what solutions you've found that make things easier. Thank you in advance!