I will admit before I had an ostomy, I didn’t know anything except you had a bag of poop attached to you. After living with an ostomy for 15 months, I thought it was time to attack some myths. Here are some that I had, and also some that I got when I asked my friends what they knew about ostomies before they knew me.
Myth #1 – Jackie No Butt
One of my friends has a husband who doesn’t really know me all that well. When she refered to me in conversation, one time he asked her “Is that the one without a butt?”. People with ostomies most often still have a butt and a butt hole. Sometimes when it becomes a permanent ostomy, the butt will get sewn closed to prevent infection.
Myth #2 – Ostomies = Becoming a Nun.
Sex is a HUGE concern for people with ostomies or talking about ostomies. You can, and should still have sex if you have an ostomy. There are ways to cover it if you think you need to, and ways to avoid it being in the way in any shape or form. I promise you, if you’re even remotely interested in the sex you’re having, it won’t bother you. I’ve got some tips/tricks about all of this. Let me know if you need some advice.
Myth # 3 – People with ostomies are fat
Yup they sure are. They are also skinny, and tall and short and male and female. Old and young, rich and poor. Believe it or not ostomies and the people who have them come in all shapes and sizes. Also people with ostomies are not just ugly freaks of nature. I have found MANY obscenely beautiful people who have ostomies.
Myth #4 – Ostomies are permanent
Many ostomies are just temporary. Sometimes they are later changed to be permanent and sometimes they start out permanent. But just remember they can also be very temporary.
Myth # 5 – Ostomy = Colostomy
Actually there are 3 kinds of ostomies. This is actually something I didn’t know in the beginning, if you read my really early blog entries I say “colostomy” all the time when I had no idea what I was talking about. Even trained nurses don’t know the difference sometimes. A colostomy is made from the large intestine or colon. An ileostomy is made from part of the small bowel when the whole colon is removed. A urostomy is made when there are bladder issues. Yes, there are people in the world who wear two bags.
Myth #6 – You poop all over yourself constantly
While you can get a leak from time to time, this is pretty false. If you can find the right appliance to use and use it correctly you can prevent poop from flying everywhere.
Myth #7 – People with ostomies smell like poop
Even people with ostomies worry about this. I know I did. I was always afraid that if I smelled poop, the whole world smelled poop. Truth is we are better at smelling it because we are aware of it, however no, we do not just ooze poop smell. Yes it can smell when you change your bag, or empty it, but poop smell does not permeate the air you occupy.
Myth #8 – Only people with cancer have ostomies
Many people who have had colon cancer do end up with ostomies, both colostomies and ileostomies. However, an ostomy can be a result of IBD, a severe accident, or a myriad of other causes.
Myth #9 – When you say “ostomy” people know what you’re talking about
So many of my friends had to google “ostomy” when I told them. People really have no idea. Awareness is huge people, telling your stories will help bring acceptance.
Myth #10 – I don’t know anyone with an ostomy
We are sneaky little MFers. Trust me if we don’t want you to know, you won’t. I once had a friend ask me ” Are you wearing your bag?”, (as if I had a choice). Ostomies are easily hid and concealed. Before I had an ostomy I was always shocked when I met someone who had an one because they didn’t have a sign on their head or a swarm of flys around their poop stench. We look just like you do.
When you start talking about your “bag” people can have lots of misconceptions of what your bag looks like. Most people really have no clue what they look like and how complex they can actually get. I wore midi bags which were actually very small and relatively easy to hide.
Myth #12 – Having an ostomy is like being disabled
While there are really trying times, and emotional let downs, living with an ostomy is just living. People with ostomies climb mountains, jump out of planes, serve in the military, go swimming and so on. It may take more planning, and extra tape, but we can do it.
Myth #13 – We are all totally ok with our ostomy
There is a level of acceptance that comes with having an ostomy. Eventually most people see that it is a life saving measure and become thankful for it, but that doesn’t mean that we don’t struggle with it from time to time. Some people are lucky enough to be grateful for their ostomies from day one, many are not.
Above all, most people I asked said that they didn’t know a single thing about ostomies. I know it can be very difficult to be open about your ostomy to those people in your life. But most people will be more than willing to learn if you’re willing to teach.