In honor of World Ostomy Awareness day, I wanted to be able to share some inside details about what life is truly like with an ostomy. I think the most important thing that we can focus on, especially today is erasing stigmas.
It’s no secret that when I had to have my colon removed, I refused to even speak about getting an ostomy. Why is that? Because everything I had ever heard about having an ostomy was negative. I felt that people would judge me, would think that it was gross and wouldn’t want to hear anything about it.
Man, was I wrong.
There have been a few people out there who have offended me, I still get offended quite regularly for seemingly small, petty reasons to someone who has never lived with an ostomy. The one that really gets to me is when people refer to an ostomy as, “a bag.”
When anyone calls an ostomy, “a bag,” I immediately feel a twinge in my stomach that makes me want to correct them into saying, “a pouch.” I kindly let them know why that bothers me and ask if in the future if they could please refer to my ostomy as a pouch. Some of you reading this may think that’s ridiculous. But, what is important to remember is that everyone feels differently about living with and wearing an ostomy. To me, the term, “bag,” sounds demeaning. It is not a bag. When I think of a bag, I think of a plastic grocery bag, or a bag that you might carry to the gym. My ostomy was none of those things. It was a substitute for my colon and it does not need to be referred to as a bag. For me, using the correct term, “ostomy,” or “pouch,” is preferable.
There are A LOT of questions that have crossed my path that I had never even thought of before I had to have my ostomy. My surgery was emergent, so there wasn’t much time for researching. I would like to take the time to go over some commonly asked questions that some may feel embarrassed to answer or even ask themselves. I never thought that I would be as open about my ostomy as I was or am, but it makes me truly happy to put others minds at ease and educating those who do not know anything about ostomies.
1. What is an ostomy?
An ostomy refers to the surgically created opening in the body for the discharge of body wastes. A stoma is the actual end of the ureter or small or large bowel that can be seen protruding through the abdominal wall.
2. What’s the difference between an ostomy, a colostomy and an ileostomy? (I get this A TON).
Ileostomy: a portion of the small intestine is diverted to an opening placed in the abdominal wall. Most often, an ileostomy is necessary for those with IBD (inflammatory bowel disease), which includes Crohn’s disease and ulcerative colitis. Ileostomies can be permanent or temporary.
Colostomy: a portion of the large intestine is diverted to an opening placed in the abdominal wall. Most often, a colostomy is necessary with certain lower bowel diseases. You may have a temporary colostomy, which can be reversed later, or part of your bowels may be permanently removed.
3. Whats it like to have an ostomy, how does it feel?
When an individual is as sick as I was (with UC), having an ostomy is a relief. When I try and think back to how I felt with my ostomy, that is the first feeling that comes to mind. There is no pain, there is no worrying about what I’m eating. There are definitely frustrations to having an ostomy. Getting dressed was definitely the most frustrating part for me. That really took a lot of time for me to get used too.
4. How often do you have to go to the bathroom and change/empty your pouch?
It all depends on your diet and how much you are eating and when. My ostomy was the most active in the morning. Eating thicker foods obviously will help slow down your bowel so you won’t have to change it as much. On average, I changed my pouch (I used closed ended) between 5-8 times a day.
5. How does an ostomy work?
I’ll make this short and sweet. There is a bandage looking thing called a flange that has a hole in the middle and that sticks to your skin and goes around your stoma (the end of your intestine that is sticking out of your stomach, gruesome, I know). There is a plastic ring attached to the flange that the actual pouch itself snaps right on to. Changing my flange was the most hated part of having my ostomy. It was very meticulous and at times I didn’t like the sight of my stoma. That definitely took a lot of getting used to.
6. What if my friends don’t understand? How do I explain this to them?
You do not have to tell anyone about your ostomy that you don’t feel comfortable with. The best advice I was given before I had my ostomy was, “You will not have a big red stamp on your forehead that says OSTOMY.” The nurse that told me that was right. I chose to be very open about my ostomy, because it helped me cope. But to each their own. If you don’t feel comfortable discussing it with friends, then you do not have to. There are amazing people out there who are going through the same situation who can talk with you and help you feel supported.
7. Can you still do all of your normal activities with your ostomy?
YES! You can do everything that anyone else can do! You can shower (DUH), swim, work out, dance, go to school, do whatever you want! When I had my ostomy I was in the best shape of my life. Running 3 miles a day, lifting weights and doing all of the normal things a 24 year old should be doing. The only activities that your ostomy is going to prevent you from are ones that you don’t try.
8. What could you eat?
Pretty much anything. I stayed away from the obvious food items that could obstruct me, such as nuts, veggies, salad, or anything that is too hard to digest!
9. What did you wear to hide your ostomy?
Honestly, I just went out and bought a TON of oversized sweaters and t-shirts. I never really wore jeans with an ostomy, because it just didn’t work. I wore a lot of leggings. It took me a long time to find a style that fit my ostomy, but I eventually got used to what worked and what didn’t. If you want to see some of the outfits I wore, you can check out my FashOstomy section of this blog. You can also read current issues of Companion Magazine (www.companionibd.com) for tips and tricks!
10. Here’s the tough one that I get pretty often. I’m sure others do as well. What is it like to be intimate or have sex?
This is a huge “to each their own,” situation. I personally did not like being touched affectionately when I had my ostomy. I was very focused on surgeries and recovering. I can tell you with complete certainty that sex with an ostomy is possible and just fine. As long as you’re comfortable, go for it. Just make sure you trust the other person and that they won’t make you feel any less than how perfect you truly are.
There are so many more questions to be answered about having an ostomy. Having an ostomy is NOT gross, it does not SMELL, it does not make you any different from anyone else. It is there to serve a purpose and that is to IMPROVE the QUALITY of your life. NEVER allow anyone to make you feel ashamed or embarrassed. EVER.
Taking that step to have surgery is definitely a courageous one. My ostomy not only saved my life, but it taught me how to be a more humble person. I am so thankful for the amazing support system of family and friends that surrounded me when I had mine. I certainly had some bumps in the road, but who wouldn’t?
If there is one thing I could tell someone who is about to get an ostomy, it would be: You are NOT alone. When I found out I had to get mine, there was such an overwhelming feeling of loneliness. I NEVER want anyone to feel that way. If you or someone you know is getting an ostomy, you can contact me at any time with questions at firstname.lastname@example.org.
Please help me erase stigmas. Whenever you get a chance today especially, turn to the person next to you and tell them that ostomies save lives.
There are also amazing non-profits and organizations that have informational websites that you can check out.
–Contact UOAA for more information and referrals to local support groups and to request an ostomy visitor. Contact the Wound, Ostomy and Continence Nurses national office, 1-888-224-9626 for information and local referrals for ostomy nurse specialists. Contact the American Cancer Society at 1-800-ACS-2345 for cancer information.–
You can also check out Companion Magazine for IBD, where we have a group of editors and contributors who all have experience with ostomies and who are more than willing to talk with you. Please visit www.companionibd.com for more information.