Facing Surgery and Recovery - Seeking Advice and Support

Hi! I am new to the site. I was diagnosed with a rare anal cancer back in Nov 2022. I was told it was aggressive and started rad and oral chemo in Feb. The tumor, I'm told, is sitting pretty low, and the colon rectal surgeon informed me that he would have to remove the entire colon, and I would have a permanent colostomy bag if the tumor did not shrink. We were hoping that the tumor would shrink, but it hasn't. Thus, I am scheduled for surgery on 5/31 and then after recovery will have IV chemo.

I am so depressed and trying to keep my spirits up, so I'm grateful to have found this site. My daughters, both 26 and 23, have tried to be supportive and have been very positive about my "new normal." I'm most worried about odor and someday establishing a relationship with someone and very nervous about the surgery itself and recovery period.

Any advice would be helpful! Thanks, everyone!

My tumor was basically right on my butthole. I did chemo pills, infusions, radiation to try and shrink it enough so I could get reconnected. The radiation shrank it a lot but not enough. So, I got this really cool accessory and I don't have to keep GPS coordinates on every bathroom with a 5-mile radius anymore. Any questions, just ask, I'm sure someone here has a reply.

You have a lot ahead of you, and it won't be easy, but rest assured that there is life after ostomy surgery. Being anxious about the surgery is understandable, but hopefully you are confident in your surgeon. Once you have had your surgery, you will have a steep learning curve, but you will get there, and there are lots of people here who have gone through the same thing and are willing to help with information and support. Feel free to ask anything and there are no stupid questions. The last thing you need to be concerned about is odor as there are lots of things you can do to prevent it. Being anxious about forming relationships is normal too, but just know that anyone worth your time will accept you the way you are. Good luck going forward and let us know how things progress for you.

Terry

I had cancer too............23 years and 3 grandchildren ago.... Life is good. You can master the ostomy part

I'm sure you're feeling all kinds of ways about your medical situation. In terms of your eventual ostomy, you're in good company on here. Try not to worry about taking care of yours before you have one; you can make yourself really anxious anticipating the worst. There's lots of advice on here from drops in your bag and super strong bathroom exhaust fans to take away odor to the best bags to how to dress. You'll figure it out and it really will become your new normal and not such a big deal (or at least not as big as it's seeming now!) It won't define you. It sounds like you have great support from your daughters.

Words of Encouragement from Ostomy Advocates I Hollister

Hey, I'm Jodie. I'm sorry this didn't go the way you wanted. Do your daughters live close by? What's the local support system look like? I think people have touched on odor and the tricks you can learn after surgery. You never know when/where a relationship might evolve, but you need to focus on you right now. Not sure how you're currently feeling/where your energy is at, but if you're feeling ok-ish despite everything going on, are there any fun things you can do in the next couple weeks that you won't be able to do during recovery? Surgery is the easiest part - you get to sleep right through that while your surgeon and medical team take care of you. It's after, when it's your turn to help your body recover that it gets real. And that's when you get to learn ostomy tricks. You're going to have days that are better than others, and for the meh days you'll ride them out. I wouldn't look at my stoma at first (I'd seen videos and cried because I thought it would look like a penis coming out of the abdomen wall - it didn't, by the way). They tricked me one day to get me to look at it. And that worked for me. Tangible goals really help me, so do reward systems...popsicles, stickers, puppies.

Do you know if where you're having surgery has ostomy (WOC - wound, ostomy, continence) nurses on staff?

There's going to be hard days, but you are going to do better than you think you will.

Hi Lovewins, I've had an ileostomy for 30 some years and like others said, it's a steep learning curve. But nowadays, there's the internet with videos and sites like this to help figure things out. And down the road, after all is healed, you may be eligible for what's called irrigation and maybe not having to wear a bag at all. Good luck.

That is amazing. Congratulations!!!

Hi Lovewins12.

I was in your exact situation in January. It was scary and hard at first but now I have figured things out and so will you. Things will get back to normal and most days you won't even remember you have a stoma. You'll find what works best for you as far as accessories. It took me a few different options but finally found the product that works best for me and so will you. Most days are perfect. You'll be surprised. Stay positive and good luck to you!

Hi! It sounds like you're already getting outstanding advice. Since these days may be difficult, consider asking your friends and family to help write funny memories for a keepsake jar in your room. Each time someone visits or you're by yourself, you can reach in and think of something that puts a smile on your face or helps your tell a funny story who haven't thought about in years. Keep some blank and when something good happens or there's a small win to celebrate after surgery you can add those in, too!

If it helps, I'm OCD and nauseated daily so having an ostomy is a cruel joke! It was hard to find ways to work through that, but it is possible. One thing that helps me is that I've named her. I call mine Mellie (short for Melodramatic) because she's so needy. She also can't keep a secret. If I think something is funny or want to say something inappropriate (always!), and I'm trying to be on my best behavior, she always calls me out and makes a noise and we all start laughing. I used to cry because I thought how embarrassing! Now, I realize she's just a little asshole!

This will be hard. You will struggle. Then, occasionally you'll start to laugh... even at the things that used to make to breakdown.

I love your attitude! Mine (Rosie) doesn't know when to shut up either!

Always at the worst moments! Now, I enjoy watching people trying to figure it out. Sometimes, I blame my dog. Other times, I blame my friend's toddler.