Surviving Cancer with an Ileostomy Stoma: My Journey and Tips

Once again today, like every 2 weeks, I find myself an hour away from home base sitting in an oncology chair for little over 4 hours, then hooked to a baby bottle for home for another 48 hours....

Now it's not what I expected to be doing with my life, BUT as I sit watching the comings and goings of others, I reflect....

Hell yeah, I am still here fighting the good fight. Many don't get me, but I absolutely refuse to be negative about this or my stoma or sh@@ bag (if you like). This is for me, my family, and friends. I'm not ready yet.... This new journey in my life is what's keeping me here!!!!

I am 59 years young and was raised a fighter. We don't give up. It's not in my blood.... I survived a heart attack 1 year prior, dealing with type 2 diabetes, have rheumatoid arthritis. I survived ileostomy 8-hour emergency surgery, and I am surviving cancer. I know they can't heal me. I accept.... But control it. It's better than the alternative....

My stoma pretty much behaves itself at treatments. Between treatments and 48 hours duration, the chemo and immo haven't really affected its actions or outputs. The most serious side effect I have experienced in my 3 months thus far is occasional nausea, not every treatment, the odd 1, and worse is not drinking or eating anything cold for the first week after bottle disconnect. AND the finger electricity feeling in my hands if I touch anything cold or metal. So, to help with this, I use a pair of insulated rubber gardening gloves when going in the fridge/freezer, grocery store, etc., and cleaning the toilet bowl, etc.... It's about staying positive, adapting, overcoming, and conquering and taking care of yourself in a ton of ways... Don't be afraid to treat yourself. You deserve it!!!!

There are worse out there than me and others better off than me, but no 1 is ME. It's okay to ride that emotional roller coaster. All of us ride it many times over and over. Just remember, at the end of the ride, we are not alone and we fight!!!!! Don't ask WHY me, ask WHY not me!!!!!

Smile on and keep on keeping on, never give up no matter your battle. Kick its ass!!! #noonewalksalone

Your friend Homie with a Stomie

Tracy

Homie with a stomie!

I love this one, what a fighter you are Tracy, keep that up!

Best

Paul

Aka Abe Froman

Tracy, you are so incredibly strong. Thanks for sharing that energy so that others who may need some can take a little.

Lol....it's my fav as well. Thank you, bud. I appreciate the words. Another fav at shower time: rub a dub dub, homie in the tub. Lol, because I have a bath/shower combo....

Your friend Homie with a Stomie

Tracy

Ps. Hubby is a homie with a stomie rapper, it seems.

Sending loads of love and good vibes your way.

My pleasure....if it encourages just 1 my heart is happy....

Thank you for reading and your grateful response

Oh, I had the cold sensitivity too, hard to explain to those that have never had the pleasure. I drank hot water or hot chocolate for 4 months or so, and I lived on pop before that. I had it real bad in my feet.

Thankfully not in my feet. Hands are bad enough, but I try to remember gloves before I do as doc say. It's cumulative and progresses with each treatment... I am down to 2 cups of coffee in the morning and a Pepsi maybe every other day. And of course, my water, my friend.... Can't drink water or pop cold or anything cold for about a week after the bottle is removed as I get that cold shard feeling in your throat.... But hell, at least I don't have to give up ice cream for too long. LOL

I could post pictures of what it did to my feet. Hopefully, unlike me, your tingling situation goes away when you're done. Mine went away for about a week and now my feet are always tingling 24/7. I still have a little time for it to go away. Otherwise, like my oncologist says, it's a souvenir I get to keep.

Yep, pretty much what my doc said as well as my hands.... again, rather my hands than feet. I am praying the tingles disappear from your feet, my friend... ouch.

Hi, thank you for sharing your story. I have a very similar story. I was 49 last June when I was diagnosed with colorectal cancer. I did 30 days of radiation, 6 sessions of chemotherapy, and went home with the bag. I got my surgery after my treatments were done, and it was almost 7 hours, and I also spent 11 days in the hospital recovering. It feels good to be able to share my story and know that someone understands. I feel positive and lucky that I have been strong physically and most of the time emotionally, and that I'm getting through this journey. I always try to look at the positive. My aunt, who's a cancer survivor, told me to watch things that make you laugh, that laughter helps. I watched reruns of the Golden Girls and I Love Lucy, I surrounded myself with people who make me happy (I'm very lucky that I have such a great support unit, people who I thought didn't care actually did, it was eye-opening), and I did what I loved, gardening, art, meeting with friends and family for brunch, dinner, etc. My journey's not over and my next and hopefully last surgery is to reverse my ileostomy. My doctor said it's going to be crazy for a while and though I'm a little scared, I'm not going to give up now. Thank you again for your story and your positivity is contagious. Keep strong!

Thank you so much for your story, hun, and your gracious words.... Always remember, you got this. We ostomates never give up..... My surgery was first, then chemo mid-treatment scan on Monday. Woot woo, let's go.... Stay strong and carry on, my friend...

Tracy

Wishing you all the best tomorrow!

I must have had the same chemotherapy plan as you or close. Xeloda 14 days and oxaliplatin, I believe that is how it's spelled. I did 4 months on a 21-day regimen. June 10 was my last treatment day. I still get cold sensations in my hands, especially with doorknobs and anything metal. I finally get to drink cooler drinks, but now that I'm used to everything warm or room temperature, I even drink soda at room temperature.

My hands are always tingling as well. I also lost my fingerprints for a while. Yesterday I took a few sips of a Sonic slushy. It was okay. I guess I just got used to drinking everything warm.

I don't know if it would be any comfort to you folks actively fighting cancer or recently finished with treatment.
I was diagnosed in 1999 in the late fall, I had radiation, surgery, and later the first round of chemo. That has been 22 years ago, and I'm still cancer-free, my oncologist retired.....so I don't even give cancer a second thought anymore.
He said, and I quote.... "You're my best patient.....and you're my worst patient."

I guess in this instance, I got the last laugh. Stay strong, you can beat it!

Hi all.

Sharing my story, as a person who has long lived in misunderstanding of what will happen next and tried to fight cancer as best I could, I can finally share my path with other people.

Initially, how it all began, I want to go through the points.

1- Probably the stage of accepting the disease itself, it was very difficult to realize and understand what exactly was going on in your head.

2- The second and probably the most important thing is the decision and choice of treatment methods, when I was asked what I should do in order to be cured, I said, "Guys, I have no idea, I just started crying in front of other people because I thought that I would not be able to get out of this illness."

Then life began to continue at the same pace, not understanding what would happen next and expecting a worse outcome.

Then I began to think how, besides those medicines, those procedures that were in the city hospital, I was looking for more options for recovery and, of course, I consulted with my doctor about www.fenbenlab.com.

I want to understand if there are people who are really interested in this and can I continue to share my path with you?