Whether you've continuously fought severe illness or had an emergent injury, when a person hears "You need ostomy surgery," those words stop time.
“I'm really struggling. I used to cope well with IBD, but now I just cry when I think about having ostomy surgery. I don't want to live with a bag and feel like I want my life to end.”
It’s understandable to be upset and afraid. We've been there and hope these messages give you strength and encouragement to move forward.
1. Wish I would've had the surgery years ago.
Leah Vosburg, ileostomy since 2017
"I was really depressed prior to getting an ostomy, but almost immediately after surgery, my depression decreased. I was so surprised how my anxiety was just GONE! Even my ride home from the hospital was odd, not having to worry about stopping for a bathroom or having an accident. I wish I would've had the surgery years ago."
2. It's not as bad as it may seem in your head.
Shannon K., ileostomy since 2001
"I used to think I would rather be dead than have an ostomy. But I promise you, it's not as bad as it may seem in your head. I got my permanent ileostomy at 21. I have done everything I have ever wanted to do since then. Hang in there. Some days are a pain, but most days my quality of life is a million times better than it ever was prior to my surgery."
3. Ostomy life is my new normal.
Monica Mora, ileostomy since 2012
"I've had a permanent ileostomy for over six years now. Swore I would rather die than end up with a bag, but little did I know it would give me freedom. I had the surgery 12 days before my 30th birthday, unmarried with a kid. Now I'm 35. Ostomy life is my new normal and I'm lucky enough that everyone around me accepted it. It's definitely an adjustment, but for me it changed my life for the better. Sometimes my daughter runs around the house with a bag on, being silly wanting to be just like her mom. I have a man that sees past the bag and it in no way changed my sex life (you can buy intimacy wraps)."
4. Keep fighting, you can do it.
Jan Fleming, colostomy since 2010
"It’s natural to feel scared and depressed at first, this is a life changing experience. I went through all the emotions. Cried myself to sleep the first night. But then I realized that I’m going to be in less pain and life is going to be better. Most importantly I will be alive. It’s a fresh start. Try to stay strong and think positive. There are people who are sick that don’t get the option of having an operation that can save them. Life isn’t straightforward as an ostomate, but it’s all about making the best out of things. Keep fighting, you can do it."
5. I'm here to tell you there's hope.
Bree Nicole, ileostomy since 2011
"I had an ileostomy and was told it was going to be most likely permanent. After five surgeries there wasn't much the doctors could do. I'm here to tell you there's hope. After a year I was able to get a reversal, rare in my case, but possible. I remember being in very little pain with the ileostomy. Yes, it has its woes, but it eliminated so many sleepless nights from pain and I was able to have a great social life. I was able to do everything I could before, even had a relationship. Now that I've had the reversal, I'm back in constant pain and had three more surgeries. Having an ostomy is not the end. Your quality of life will be better if you allow it. This is not the end, it's actually the beginning."
6. It's perfectly normal to feel depressed.
Ginnie Kasten, ileostomy since 1981
"It's perfectly normal to feel depressed. This is a new way of life. Surgery was my only option or I would've died from ulcerative colitis. I was married and had a 9-month-old baby at home, so an ileostomy came as a blessing to me. No more running to the bathroom 20 times a day. I went on to have another child, worked full-time, and traveled after my surgery. That was 36 years ago and I'm still alive and kicking! Support groups are a lifeline, as no one knows what having an ostomy is like except for those of us who have one. Acceptance is not overnight, it takes time to adjust. Stay strong."
7. It saved my life and won't change it.
Rob Barkoo, ileostomy since 2003
"I got an ileostomy in my early 20's and it was a hard pill to swallow, but it saved my life and won't change it. A big thing that helped me is knowing ostomy nurses. They are the most amazing people, and you'll want them close by to help you with any problems or tips."
8. Whatever you love, you can still do with an ostomy.
Kimberly Whitman, ileostomy since 1977
"I had my surgery at age 23, that was 38 years ago. I was able to do anything and everything I want. I got married, drove a truck all over America, rode horses, went camping, and fishing. Whatever you love, you can still do with an ostomy. I can eat anything I want. Some food might make “JR” (my stoma) a little more active, but no big deal. My life changed for the better! Reach out to support groups online or locally, there wasn’t anything or anyone to help me when I got mine. You can do this."
9. I learned SO much from other ostomates.
K.H., colostomy since 2016
"My surgery was an emergency so I wasn't prepared at all. With Crohn's disease, my biggest fear was that I’d need a colostomy. I was told I would've died without it, though that didn't really make it easier to cope, especially at the beginning. I was in denial when I first got home. It's a big adjustment mentally and physically. I've had mine since 2016 and in all honesty, I’m just now really accepting it. I still do all the things I did before and MORE because I feel better. Once I figured out what ostomy products I needed, I was in great shape. I learned SO MUCH from other ostomates in online support groups. I don't know if it can ever be reversed, but there are days that I think I won't, even if they say I can. The quality of life for me is that much better."
10. There is a rainbow at the end of this storm.
Colby Kuhns, ileostomy since 2016
"I cried when I first found out that I had to have a permanent ostomy. You will soon find out that having a bag is a small price to pay for having your life back. There is a rainbow at the end of this storm."
We know how overwhelming and difficult this surgery can be. You're not alone in this, stay connected.