Sometimes we’re caught in circumstances that are beyond our control and working through it all can be so tough. Unfortunately, many of us have had a lot of setbacks in our journey. When you're continually fighting for your health, it’s understandable to be upset and afraid.
This note comes from a young lady who’s having a hard time coping with her upcoming surgery:
“I'm really struggling. I used to do so well with Crohn's and now all I feel like doing is crying when I think about having ostomy surgery. I don't want to live with a bag and feel like I want to end my life.”
In the midst of it all, we know how overwhelming and difficult this surgery can be. Here are some encouraging messages of hope on life after ostomy surgery from ten people who totally understand.
Colby Kuhns, ileostomy since October, 2016 due to ulcerative colitis
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 normal life back. There is a rainbow at the end of this storm.
Shannon K., ileostomy since June, 2001 due to Crohn's disease
I used to think I would rather be dead than have an ostomy. But I promise you, it is 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! 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. Hang in there!
Leah Vosburg, ileostomy since June, 2017 due to Crohn’s disease
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 can go out without extra clothes and eat what I want! I wish I would have had the surgery years ago.
Monica Mora, ileostomy since June, 2012 due to Crohn’s disease
I've had a permanent ileostomy for almost 6 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 an ostomy 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).
Jan Fleming, colostomy since July, 2010 due to ulcerative colitis
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 straight forward as an ostomate, but it’s all about making the best out of things. Keep fighting, you can do it.
Bree Nicole, ileostomy since August, 2011 due to Crohn's disease
I had an ileostomy and was told it was going to be most likely permanent. After 5 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. It's very rare yes, but possible. To be honest, I want to tell you to be careful what you wish for. 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 because I wasn't worried about constant bathroom trips. I was able to do everything I could before, even had a relationship. Now that I have the reversal, I'm back in constant pain looking for the closest bathrooms, and had 3 more surgeries. I'm here to tell you 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.
Ginnie Kasten, ileostomy since February, 1981 due to ulcerative colitis
It is perfectly normal to feel depressed. This is a new way of life. The ulcerative colitis was so severe that surgery was my only option. I would have died. I had a 9-month-old child at home and my husband to be with, 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 am still kicking! Support groups are a lifeline, as no one knows what having an ostomy is like except for those of us who wear the bag. Acceptance is not overnight, it may take a while for you to adjust. We are all fighters!
Rob Barkoo, ileostomy since January, 2003 due to Crohn's disease
I got ileostomy in my early 20s and it was hard pill to swallow, but it also saved my life and won't change it. Big thing is become friends with the ostomy nurses, they are the amazing people you want close by to call or email with problems or tips.
Kimberly Whitman, ileostomy since August, 1977 due to ulcerative colitis
Your life will change for the better! Had mine at age 23, and that was 38 years ago. I was able to do anything and everything I want. I got married, drove 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.” a little more active, but no big deal. Reach out to support groups online or locally, there wasn’t anything or anyone to help me back when I got mine.
K.H., ileostomy since June, 2016 due to Crohn’s disease
My surgery was an emergency so I wasn't prepared at all! I have Crohn's and the biggest fear I always had was that I’d need a colostomy. I was told I would have died without it, though that didn't really make it easier to cope, especially at the beginning. I've had mine since 2016 and in all honesty, I’m just now really accepting it. I was in denial when I first got home. It's a big adjustment mentally and physically, but you can do it. I still wear jeans and fitted dresses. The only people that know are the people that I have told. I still do all the things I did before, and MORE because I feel better. Once I figured out what appliances and accessories 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.
Sometimes we need help from others to recognize that there are reasons why this surgery is meant to keep us alive. Your life is precious and there is always a way forward. You're not alone—we're here for YOU.