Recently diagnosed with stage 4 rectal cancer, new colostomy and trying to wrap my head around it all. Things sure move fast.
Okie65
Nov 21, 2022 6:09 pm
AlexT
Nov 21, 2022 6:44 pm
Hi. I had stage 3 and ended up with the glorious Barbie Butt and my Bag-O-Tricks stuck to my stomach. Ask away, there's no really dumb questions, except for Abe's deciphering one.
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Posted by: Primeboy
Hi Mike and all. I am not sure how panoramic my perspective really is as my peripheral vision shrinks with each passing year. I can tell you that when I came to this website six years ago I was truly ;impressed by the positive attitudes of so many members, especially the younger folks who refused to let their ostomies define who they were or what they would become. I also came to appreciate that having an ostomy is not the same thing as having a disease. Pardon ;my pun now, but ostomies and cancer don't belong in the same bag. One is a solution, the other is a problem. Celebrating National Ostomy Day ;is also well outside my comfort zone. That's like celebrating National Wheel Chair Day. Come on!
I think there is a ;need for improved ;public awareness of ostomies, but I am not sure how that's best done. There ;remains ;some social stigma attached to our situation, and it's acutely felt among our young. We need to get out of the dark ages on this issue, but not by going 'in your face' to everyone else. I think Bill and NDY are 'spot-on' when it comes to telegraphing the right message to friends and family. People will know how to react when they ;see ;how we accept the cards we were dealt. I also appreciate the contribution some people here are making to this effort through their publications.
On a personal note, my son has been suffering from ulcerative colitis for years just like I did. I am very concerned because people with UC are at a higher risk for colon cancer. Years ago my GI told me to get annual colonoscopies to be on the safe side. I am glad I did because he eventually found pre-cancerous cells which led to several surgeries and my becoming an ostomate. Since then I have always ;conveyed a positive attitude to ;my son about wearing a bag because it has kept me alive to enjoy many more years with my loved ones. I think he got the message. We both go to the same gastroenterologist in NYC and get scoped on the same day. Father and Son moments!
Someone once wrote that our children are the letters we write to the future.
PB
Renfromtexas
Nov 21, 2022 7:50 pm
You'll do fine, I'm sure, and Alex is a huge help if you have questions.
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Justbreathe
Nov 21, 2022 9:07 pm
Welcome - you've come to the right place! Lots of unanswered questions (by practicing physicians) are answered here - and all you need to do is decipher them and make your own good decisions - you will learn lots in short order! I probably won't be answering any of them as I have an ileostomy but I do enjoy the forum and occasionally try to throw in some humor as we all need it! JB
gairdinspreagtha
Nov 21, 2022 9:39 pm
Welcome. I'm fairly new also and everyone here has been great. I'm very grateful for this group and I hope you are likewise blessed by their kindness and experience.
My Ostomy Journey: LeeAnne | Hollister
TerryLT
Nov 21, 2022 10:14 pm
Welcome! You will find lots of help and support here, so don't hesitate to ask questions about anything and everything.
Terry
Abefroman1969
Nov 22, 2022 1:28 pm
Okie
Welcome to the site, it's good to have you here.
Abe of dumb questions
ron in mich
Nov 22, 2022 2:40 pm
Hi Okie, welcome to the site. I've had an ileostomy for 30 years. Don't let your colostomy hold you back and good luck.
Morning glory
Nov 22, 2022 6:10 pm
Welcome, as others have said, you will find answers and support on this site. It takes time to wrap your head around your diagnosis and surgery. Just give yourself time and grace.
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clair.crowley83
Nov 29, 2022 5:34 pm
Hi,
I'm new here too. Decided to find a place to reach out because I'm feeling completely overwhelmed.
Four weeks ago, I had surgery to remove a section of my large intestine which was full of deep tissue endometriosis. Immediately after waking from the surgery, I was sure that something was wrong. After a week of uncertainty, the surgeons decided on emergency surgery and found that I had a perforated bowel. I woke up with a colostomy which I was completely unprepared for, and while I'm aware that it saved my life, I'm struggling to feel grateful to it. I'm not somebody who generally allows the negative thoughts to take over, but I'm finding this really difficult.
I have so much love and support and care, there's nothing more I could ask for. But sometimes I resent them for trying to put a positive spin on everything. That's so unfair, I know.
Anyway, sorry for being a downer, hopefully my thoughts on this will change over time.
John A
Dec 04, 2022 3:27 am
Welcome to the site. I know you are overwhelmed at the moment. Life is going to get much better. It just takes time to heal both physically and mentally. If you ever need a friend to chat with, please feel free to reach out.
putt putt
Dec 08, 2022 4:06 am
Hello Clair -
I had a similar experience of waking up from surgery with an unexpected colostomy. Yes, it was life-saving, but shocking. I didn't want to acknowledge the presence of it during my lengthy hospital stay, which was filled with random complications. Once home, I can't remember how long it was until I emptied the bag on my own, and it was over a year before I learned how to change the whole thing by myself (mostly because no one ever encouraged me to.) I didn't know I could do it - I actually learned on YouTube - haha. I should have joined this site sooner - it's a great place to find support, encouragement, and information. Now I'm finally self-reliant, and am even able to do some gig work when it works out for me. I'm in a pretty good place. At this point, 19 months after bowel perforation, I am scheduled for colostomy reversal surgery, however, I also have extensive endometriosis and am worried about further complications with additional surgery. We'll see what happens.
Good luck to you - it's okay to feel down. Let your body heal and know that you're not alone! (I hope that wasn't too much positive spin - haha)
elledubuque
Jan 09, 2023 5:23 am
Hey Clair,
I just wanted to say I totally get it. All the well-meaning comments don't always land well. That's why this place is so important because everyone gets it!
Ever since I've been in recovery from surgeries, I really hate it when people tell me I look great. I've lost 40 pounds and I often don't recognize myself. I know compliments shouldn't grind on me, but they do.
All the cup half full "supportive" comments... ugh.
One of my coworkers sent the BEST text... simply, "fuck, all of this sucks. I hate this for you. Don't give up because we all need you." It left me feeling validated and loved, just what I needed.
So, to you I say....
What a load of bullshit you've been going through. I hate this for you and I'm so glad we are both here to connect, albeit virtually. I hope to make you laugh sometime or that I can share some good advice.
Poohgirl44
Jan 21, 2023 2:36 am
Hi there from a fellow Okie also born in 65! I have had my ileostomy since 2009. I have been on here off and on but decided I need to spend more time on. Adjusting to this lifestyle does have its challenges. I still have bad days sometimes. I know there are some helpful, knowledgeable people on here. Reach out if you'd like to chat.