THERE HAVE BEEN A NUMBER OF PEOPLE coming on this site who are what we call newbies. They have recently undergone ostomy surgery and they are, to varying degrees, still in shock. We have all been there ourselves, and so we can all empathize. In my own case, my illness caused me to lose something for which I had been working very hard, I spent a total of five months in the hospital in two hospitalizations separated by just a few months, and when I came out I had a version of PTSD before I knew what that was. Fighting it was my only viable choice, as giving up had no attraction for me whatsoever. So I say this to new ostomites: DON’T PERMIT YOUR OSTOMY TO MAKE YOUR CHOICES FOR YOU. “I am not what happened to me,” wrote Carl Jung, “I am what I choose to become.” People suffer physical injury all the time, they deal with ill health to one degree or another throughout their life, and they try to be there for family members who suffer. We all react differently to adversity. Sometimes there is fear, or vanity, or lack of adequate information, or some other personal attribute that plays a role. I’m now at the point, for example, where I am more distressed by not having hair on my head than not having a colon, which is an absurd way to feel. But, perhaps in a year, I’ll save enough money on shampoo and haircuts to pay for some of my ostomy supplies.
Henry you are a very wise man and what you need to think of yes you are losing your hair but people don't get past your beautiful eyes . Also bald is the craze/fad so here's looking at you blue eyes. XX
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Hi Mike and all. I am not sure how panoramic my perspective really is as my peripheral vision shrinks with each passing year. I can tell you that when I came to this website six years ago I was truly ;impressed by the positive attitudes of so many members, especially the younger folks who refused to let their ostomies define who they were or what they would become. I also came to appreciate that having an ostomy is not the same thing as having a disease. Pardon ;my pun now, but ostomies and cancer don't belong in the same bag. One is a solution, the other is a problem. Celebrating National Ostomy Day ;is also well outside my comfort zone. That's like celebrating National Wheel Chair Day. Come on!
I think there is a ;need for improved ;public awareness of ostomies, but I am not sure how that's best done. There ;remains ;some social stigma attached to our situation, and it's acutely felt among our young. We need to get out of the dark ages on this issue, but not by going 'in your face' to everyone else. I think Bill and NDY are 'spot-on' when it comes to telegraphing the right message to friends and family. People will know how to react when they ;see ;how we accept the cards we were dealt. I also appreciate the contribution some people here are making to this effort through their publications.
On a personal note, my son has been suffering from ulcerative colitis for years just like I did. I am very concerned because people with UC are at a higher risk for colon cancer. Years ago my GI told me to get annual colonoscopies to be on the safe side. I am glad I did because he eventually found pre-cancerous cells which led to several surgeries and my becoming an ostomate. Since then I have always ;conveyed a positive attitude to ;my son about wearing a bag because it has kept me alive to enjoy many more years with my loved ones. I think he got the message. We both go to the same gastroenterologist in NYC and get scoped on the same day. Father and Son moments!
Someone once wrote that our children are the letters we write to the future.
PB
I'm a newbie, but a fortunate one. I did not have an emergency surgery. I had several months to think about having bladder cancer and what to do about it. The diagnosis did increase in severity over time, from it could be kidney stones to it's cancer to we got it all it's non-muscle invasive take BCG to it's muscle invasive you got two choices. I chose to have my bladder removed and fortunately came out cancer-free, at least so far. I can't say I never ask why me, but I try to stay positive and look at the continued improvement over the last 3 months. If you're struggling, take baby steps in recovery, rejoice in the small victories. It is a tough journey, tougher for some than others, but you are here to fight it. Good luck in your journey.
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Who needs hair?It's just there to keep your head warm, and you live in a warm climate. Some of the sexiest guys are bald!
Terry
Actually, I was over-stating how much I care about being hairless. I've been thinking about it more lately 'cause I had to have pre-cancerous growths removed from my bare scalp.
Words of Encouragement from Ostomy Advocates I Hollister
I have been jealous of my husband for years. He's bald on top, and I buzz his head with the electric clippers every few weeks, at the shortest setting, so he's as good as bald. His hair care routine is zero, and his hair care costs are zilch.
I guess wearing a hat at all times (while outside) is a must for you now?
Terry
Yes, I've always got a hat on, altho' sometimes when I'm walking in the early morning darkness, I forego the hat. I like to feel the wind in my ... pores.
This resonated with what a GI doctor who I follow on Instagram said the other day... She had lost her mom to colon cancer. She has one bio daughter, and another daughter adopted from Colombia (how she and I connected). She said this the other day:
"When things get hard, and we find ourselves in darkness, giving up is not the solution. We are not guaranteed an easy life. We are not guaranteed a perfectly functioning body. We are not guaranteed tomorrow. But despite circumstances, every person can become a better version of themselves." -TJ
I know I'm still in the land of processing what the heck happened this past year.