Adapting to Life with a Stoma: Experiences and Tips?

Thanks Jooly for sharing your experience. I agree, it will be great to get back to the things I love. Defo worth it x

I just finished my last operation (reversal). Everyone's story is always different. I just hope you recover well!! Good luck on your journey and this is the best place for advice...the doctors never really seem to have the time to give you the answers you need! NHS is a bit stressed and all that jazz.

Hi,

I had rectal cancer and ended up with a bag and have had it for a little over a month now. For me (my opinion), it was not even half as bad as people said it would be. I think people try to throw that scare tactic at you. You will have to adjust how you sleep, but it will come easy with time. In the beginning, I had Convatec bags, tried Coloplast, and ended up with Hollister. For me, Hollister snaps together easier than Convatec. In the beginning, it's slow to change a bag because you're reading instructions as you go. After you do it a few times, it becomes much faster. There is no pain at the stoma, only a little tender around it, but that goes away fast. You have to be careful that you don't cut it while shaving that area. I think overall it's not that bad because for me it could have been a lot worse.

Of course, everyone is different and will not handle things the same. I wish you all the best.

Southern161.

Hi, I'm 61. I got my stoma in 2014. I had a cold feeling up to surgery, then just numbness from the chest down. I am slowly regaining total feeling all over. I use a high-frequency body wand to massage my stomach and numb areas. Just remember, the more you eat, the more you will go. Think like a horse - how clean and easy it is compared to humans, you know what I mean? I'm a hunter, I've watched large and small game. I know what they eat and have eaten the same, along with one good meal at midday. I snack on granola and oatmeal juice. I had 2 cancers, 2 rounds of chemo, 1 radiation, and 1 surgery. It kicked my ass and took 45 pounds off. I can go a lot more now. What does not kill you makes you stronger. This challenge only happens to good people. Shit happens. Chemotherapy rocks.

Hey, it's hard, but when you feel better, you will accept it and hopefully enjoy life more. I've had Crohn's for 25+ years and have had a bag since 2007. It's mostly been okay, and I feel better, so I have a normal life. Hope all goes well for the surgery.

Yes, I totally agree with you. Also, make sure your "x marks the spot" is high enough up your stomach or belly as the bags are quite long. They tend to hang below your shirt line or jumper. You will have to keep tucking it in somewhere. It's a pain in the arse. Even more embarrassing is when you empty or drain the bag and you forget you tucked it up somewhere. Maybe a stoma belt if you need one. Don't realize it's been swinging in the breeze for everyone to see walking towards you since the last empty??

Just make sure it's high enough as I wish I actually put a bag in situ first instead of listening to the stoma nurse???!!!

Hi Staceylee...I guess the true answer is bag or no bag, life or no life.....having a stoma doesn't stop you from living or doing what you want....you just have to be patient, heal properly, and then do you.....Life is what you make it, bag or bagless.....you do adapt, it takes time and determination but it happens, you just got to want it....Stay strong and carry on

Your homie with a stomie

Tracy