In this video, Laura Cox, our Ostomy Lifestyle Specialist, talks about what she wishes someone had told her before ostomy surgery. She doesn’t regret the surgery, and she appreciates her current quality of life — but she does wish she’d had a little better grasp of what her future held.
You can also read an article by Laura about this issue by clicking the button:
Laura talks about wishing someone had been able to definitely tell her that she was making the right decision. She also wants everyone to know that, in some cases, having an ostomy can cure the disease (like with cancer) but in other cases (like with intestinal bowel disease) an ostomy may not cure every symptom. She talks about the positives of having an ostomy (it’s not as devastating as you may think before surgery) but she does think that it is a different life. She also emphasizes that just because people may have to have surgery, that doesn’t mean that they “lost” to their disease.
Want to watch this video with subtitles? You can find that option when you watch on YouTube.
For more information, see related articles and resources here:
Now that summer is here, may I swim in a pool? If so, will my ostomy bag be affected by chlorine in the water?
Ostomy surgery did not cure me from my Crohn’s Disease, but it gave me a new lease on life. I did undergo repeated gut surgeries, moving from a left-sided colostomy to a right-sided ileostomy. I had my first surgery at age 28. I have had and continue to have a full life and am grateful that ostomy surgery enabled me
to rise above the ashes of illness, so that I could participate in a social, recreational, career, and romantic life that I might have otherwise missed. I am 66 and still going, with the belief that “the best is yet to come!”
I have had my ostomy for 3 yrs. And I feel the loneliness. I feel like I can never be loved again.I know I may sound like a pity party, but it’s not. I just don’t know how to feel comfortable around certain people because I never know what’s gonna happen. I have had some embarrassing moment. Need someone to talk to
To Tina: I developed UC while in college. Mine quickly went acute and chronic. UC knocked me out of college. I fought it for four years until I had no choice but to have an ostomy; that was 39 years age. I too was very concerned about how women would react, whether I’d find love, have a family, and do the things that I loved doing. Hence my long fight. What I found afterwards was that others were way more concerned with their own image than with mine. I found that love is very accepting too. Most tended to be more fascinated than anything else. Certainly helped put them at ease with the whole body image thing. As for embarrassing moments; I’ve had an occasional embarrassing leakage and even that was not a game stopper. People tend to be far more accepting than for which we give them credit. Since my ostomy I finished college and got a MS degree too. Learned to scuba and fly, traveled a lot, bungee jumped in NZ, got married and now have two great children (17 & 19). A lot of life left to come. Your feelings are very valid. What you’ve experienced is really, really significant and tough. You’re a hero already. Give others a chance to get to know the new you. Tell them about your ostomy or don’t, that is up to you. Only my close friends know about mine. It doesn’t define you. Speak honestly to others; and dare to live. Even those without ostomies get rejected occasionally. Good health and good luck.
Cheers!
I wish I had been told of the likelihood of developing a huge hernia around my stoma. Was told LATER that this is fairly common. I can’t wear the same clothes anymore. Because of the appliance and hernia I have to wear larger clothes. I am grateful that I got my cystourethrecomy (bladder and urethral removal) since my Interstitial Cystitis is no longer affecting me. I worry if I end up homeless what will I do without my appliances. I guess if I know ahead of time I could kill myself to solve that. Being homeless with a urostomy is my worst nightmare.
I have found this site and people so inspiring. I’ve waited as long as I can but after having a Neuro stimulator implanted cause my diabetes has dulled nerves telling me I have to go to the Bathroom and my second problem spinchter muscle is completely torn. We know what happens next….in any event my surgery will be during the summer months. I’m scared as he’ll but I want my life back without having to be in the Bathroom most of the day and saying no to functions….I’m 63 have had kidney cancer in 2004 and numerous surgeries but by far this one scares me but deep in my heart I know I’m making the right decision….thank you all who have lifted me up today..
I had my surgery appx 10 years ago. I just turned 67. I’m quite handy and resourceful. When the stars align and my wife and I get busy, I put on a “stealth belt.” You install a fresh pouch in the belt, then close it with velcro straps. Mine is black, you can get attractive colors and patterns. Nice and smooth around the wasteline and your pouch is hidden. Made to last. I can change my pouch anywhere in 90 seconds. To put on a fresh flange appx 15 min includes a shower. I seal so well I put on a new flange every 6 days. Showering does not compromise the seal. If anyone is interested my methods can help you to be comfortable.