Through most of my adult life, I had frequent bouts of diarrhea and was basically told by my primary care physician at the time that it was all in my head. That it was because I could not handle stress and therefore my body would react to it. It took until I started having bleeding that I decided that I needed to A) seek a different doctor and B) see a specialist, see a gastroenterologist. Very shortly after seeing that gastroenterologist, I was diagnosed with ulcerative colitis.
Having a name for it also allowed me to share that diagnosis with my family and very close friends. Which allowed me to have a support system, which allowed me...they were then more understanding of why I would sometimes have to cancel events or show up late or suddenly disappear. Just having them know made a big difference in my life.
Working with my doctor, I went through various treatments and I worked with a nutritionist to talk about what dietary changes I should make, and because of this team working together, and with my desire to not accept life the way it was, a program has been put in place, both dietary and medication, that allows me to lead a full and complete life.
My life now is no longer chained to the bathroom. I don’t have to wait and find out every place I go exactly where the bathroom is. That’s not my first step. My first step is to enjoy the moment, enjoy where I’m at, thanks to the medical team I’ve worked with, thanks to the support of my husband and my close friends and family.
The advice I would give to someone living with inflammatory bowel disease is to ask for help. Make sure that your medical team is responding to your needs, be open with what your symptoms are.
Make sure that you have a good relationship with your physician. Make sure that you can discuss freely what’s going on with your body and in your life.
You may wake up feeling very ill, but you still have to go on, you have to go to work and people may not realize just how awful you feel. It’s very difficult to have to continue through a work day when you’re rushing to the bathroom, when.... but people don’t see that.
Living with an invisible illness can be a challenge. People don’t always realize that despite the fact that I’ve put on the shiny face and smile, that I may feel miserable on the inside. There are days when I was first diagnosed that by the time I was able to leave my house and the bathroom, I was just exhausted. I didn’t really want to do anything. I wanted to just curl up in a little ball and go back to sleep. But that wasn’t an option. But once you can tell people — if you’re willing to tell people and explain to people who are close to you what’s going on, they can be remarkably supportive. They can be helpful, they can be understanding, they can give you a hug when you need just a little extra support. And they can understand that you can’t always be everything that you were before.
But also ask your friends and family for help. Be honest with them what’s going on in your life. They are usually more than willing to give you help, be an understanding ear.
This is a disease that you tend to be nervous talking about. But those who are close to you want to help you. Take that help. But know that life does go on. That things can get better and hopefully will get better for you.