Newly Diagnosed with Stage 4 Rectal Cancer and Colostomy: Seeking Support

In this discussion
Replies
16
Views
734
Okie65

Recently diagnosed with stage 4 rectal cancer, new colostomy and trying to wrap my head around it all. Things sure move fast.

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,101 members. Get inside and you will see.

We're not all about ostomy. Everything is being discussed in the forums.

It's a very special community, embracing all ages and backgrounds. People are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

AlexT

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.

Gray Logo for MeetAnOstoMate
Renfromtexas

You'll do fine, I'm sure, and Alex is a huge help if you have questions.

Justbreathe

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

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.

 
How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister
TerryLT

Welcome! You will find lots of help and support here, so don't hesitate to ask questions about anything and everything.

Terry

Abefroman1969
Reply to AlexT

Thanks.

Abefroman1969

Okie

Welcome to the site, it's good to have you here.

Abe of dumb questions

ron in mich

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

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.

SallyK

Welcome

Beth22

Welcome, we are all here for you

clair.crowley83

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

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
Reply to clair.crowley83

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
Reply to clair.crowley83

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

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.

All times are GMT - 5 Hours