Starting Chemo with Ostomy Bag - Need Advice

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Debdionna

I have an ostomy bag due to colon cancer. I start chemo next week. Any issues I should be aware of? Tips or tricks? Thanks!

Cplumber

Sorry, no advice. I'm sorry you have to go through that. I will be praying for you!

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mild_mannered_super_hero

I had chemo many years ago, I'm sure they have improved it since then. I did not have the infusion pump installed but rather went for a weekly injection. The chemo I had was 5-FU (from memory). I did not lose my hair but it does make you nauseous..... It will also change your taste for some things. (One thing I remember vividly is I couldn't drink a Diet Coke for months and I love them). Since I had the injections, the poor girl that gave them to me, every time I saw her even after the chemo was over, I got a little nauseous!
It's not a pleasant experience but you can get through it. One thing that helped me was after my injection I would stop at Sonic and get a grilled cheese sandwich and a regular coke... that and only that helped with the nausea. God bless you as you pass through this dark time.... But you will get through it. I have been cancer-free for over 20 years, I can tell you that it's worth the fight. Stay strong.

w30bob

Hi Deb,

Can't speak from experience, but the obvious thing to be aware of would be diarrhea caused by the chemo. It can damage the cells that line the digestive tract, which screws up the fluid balance your gut maintains. So basically we're talking about dehydration, electrolyte imbalance, decreased immune function, poor nutrient absorption (leading to malnutrition), and inflammation, pain and/or bleeding from having a much higher output. Hopefully you'll be spared all that crap, but it's best to go into it with eyes wide open. Hope for the best, but be prepared for the worst... and all that stuff. We're all pullin' for ya, so keep us abreast of how it goes!!

;O)

Bob

AlexT

I had chemotherapy before my bag, so no real help there, but I wouldn't think there would be much of an issue. I hope you got a port, I highly recommend going that route instead of going through an IV in your arm. Depending on what type of chemotherapy you're having put into you, it will kinda depend on your side effects. For me, the chemo made my hands/feet/face extremely sensitive to anything cold. As the chemo went on, it tore my stomach up (like Bob replied). Which, with a bag, would be easier to deal with because I had the sensation of needing to poop 30 times a day but hardly anything would come out, or it'd all come out at once and the other 29 times were just going through the motions. I ended up losing 35-40 lbs of muscle mass but was able to keep my sexy AF love handles somehow. I'm back to being pleasantly plump now. I never lost any hair really until I did radiation, and that was just area (butt/leg) specific. I was never nauseous even though they gave me meds to help with it that I never took. My appetite dwindled and foods would taste good one day and the next day I couldn't even look at the same thing. Otherwise, it was pretty easy. Any other questions, just ask.

 
Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister
Homie With A Stomie NS

Same boat here but have been in treatment for 7 months... So your first visit will be a shocker in a sense. You will soon see you are not alone, many will be in the room and all there for the same reason - fighting cancer, all different ages, etc. Not sure what treatment you will be receiving, mine are 4 hours biweekly at the clinic then bring it home for 2 days...

Pack a book, magazines, etc.

Pack a lunch or snack.

Pack headphones, some provide TV.

Bring a charger.

Pack a snuggly blanket.

Be strong, fight on hun... Don't be afraid to ask nurses questions, they are all experienced and deal with cancer day in and out....

If you need a treatment buddy, reach out to tmhaworth (at) gmail (dot) com.

Bees

Hey, Deb. I, too, had chemo but before the ostomy bag. Chemo every other week for 12 treatments. In other words, about six months. For me, the worst was the fatigue. Everyone is different, but I didn't have nausea, only got diarrhea once, and because I'm bald, I didn't worry about hair loss. In fact, when I met with the oncologist before I started chemo, he said I may experience hair loss. I asked him, "Doc, how will I know?"

Plan on reading all those books you never got to. Worked for me. You'll get through it.

Bruce

AlexT
Reply to Bees

My radiologist said...."If you lose hair down there, pointing around my waistline, that's me. If you lose hair up there, pointing at my head, that's the oncologist."

hayeswbh

Hi Deb, I have a colostomy bag and have been undergoing chemo for about 8 months. I am a retired American living in Ecuador, South America, so my experience may be a little different than what you hear from others. The first thing I know is; everyone reacts a bit differently to their treatment. They all have their opinions of what to do and not to do. Everyone's body is different. One important thing to remember is that chemo has a direct effect on your immune system. I went through this during the pandemic, so I was extra careful going and meeting people in crowded areas (I really didn't need to catch Covid in addition to my cancer). I wasn't a hermit, but I did keep my contact with large groups to a minimum. I have the bag and I do believe it is easier once you get the hang of it. The biggest problem I have with the bag is keeping the wafer sealed. I use a skin film to seal my pores and a cement to double seal the wafer itself. I have only had a couple of cases of leakage. I swim, do gardening, and am pretty active with no problems.

As for my chemo, everyone reacts differently. I have only had a couple of instances of diarrhea and no real nausea. I do take the nausea medications my doctors have prescribed, but I have missed days and it had no ill effects.

If you have any specific questions or you just want to commiserate with someone, feel free to contact me directly at

Riva

Finished chemo/radiation last December. Warm clothing is a must. Make sure you have a script for nausea meds just in case. You've got this.