It's completely normal to have concerns about: body image, lifestyle changes, dating and intimacy, managing the stoma/appliance, and fear of judgment. But many people find that after some adjustment, they regain confidence and live full, active lives.
This is a remarkable community of 40,918 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.
ConnMan
I began my Urostomy life February 27th, 2023...a month and a half ago. I stumbled upon this site from another on Youtube and website called VeganOstomy and between that site and this one, most of my fear and worry of not having any answers other than calling the Dr's office recording menu and hoping to hear back in the next day or two for an answer to leaks, skin irritations etc, or just feeling alone and the "no one understands" thoughts I had to look forward to in my mind were all put to rest by these two websites and the community here at MaO!! I have been here for a few weeks now, and the help and support offered by the members here is just amazing!! The information and support is absolutely priceless for anyone recently out of their surgery and have tons of questions or had it for years...sit down...have a good read and you will see for yourself!!
I'm only home 14 days from surgery. I lost about 50 pounds while not feeling good before the surgery. It was about six months before I had the surgery. Now I'm home from the hospital, and my bag keeps falling off because of all the scars, creases, very deep and saggy skin on my stomach. Very frustrating. I cannot seem to keep a bag on longer than three or four hours. I've been having to change three or four times a day, running out of supplies. My doctor signed me up for a class on ostomy care, which I hope will help. I guess it's trial and error with ostomy pouches, but I'm very depressed over it.
Hello cammey
Do you not have an ostomy nurse available so you can get a bit of one-on-one? Otherwise, the sooner you get into that ostomy class, the better. Do you use a moldable ring? A belt to hold the appliance firmly against your abdomen? Is the area completely dry before applying the bag to your skin? These things are just the basics to get started with.
@ Romanova..
So young. So wise. So true. In the early days of recovery, most people don't see past the bag. They let it run their lives for way too long.. Good post. Valid.
Impressed, I am, with your insightfulness. 👍
Welcome to the club. 👋
4 weeks post-surgery and the emotional aspect is worse than the physical. Although the physical is still a factor. I don't want to leave my house for more than a doctor appointment. I don't like when people try to give pep talks. I know they mean well, but it doesn't help. Now I'm trying to figure out, even with deodorizer, why I smell the bag. No leak that I'm aware of; I'm not sure if it's just me or if it really smells. I can't seem to hide the bag under clothes and have seen all of your suggestions. I work in a school, so I'm off for the summer, but may have to return to work before my revision surgery. So much anxiety.
That's me. I am gaining confidence in dealing with things, but it does take some time. Sometimes, there are setbacks.
If you are off for the summer, take the opportunity to find an ostomy nurse. Try different products. Many of us swear by barrier rings, but you have to find the right one for you. It does take time. I know it's easier said than done, but don't let it beat you.
How far are you from Orlando? Come meet and greet your peers at the UOAA conference.
It just might be what you need to see and hear to avoid all this despair.
I have been through some very low points since getting my ileostomy. Getting divorced over the last year has been one of the toughest parts of my life. But I am in a better place now. I still find traveling difficult, but I finally feel like I want to get back out there and find someone new.
I do have a visiting nurse that comes to the house. My stomach is so scared, and I lost so much weight, and part of the incision is next to the stoma and drainages. I have been using a belt. I finally went to the Tucson Medical Stoma Clinic; the nurse showed me a Coloplast and convex pouch. It actually stayed on for 3 days. Things are looking up. I'm going to try and go to my son's home over the 4th. My surgery was May 29, which makes it a month. I have not left the house, unsure about the pouch falling off. But this last week, the pouch stayed on using the Coloplast. So I will venture out. Wish me good luck.