Sandra's 180 Medical Community Story

TRANSCRIPT

You develop a really unhealthy eating pattern when you're in pain constantly. I'd say I was in the bathroom between 30 and 35 times a day.

I did not have a life outside of my bathroom. So eating was something that I tried to avoid. I would have to pick my kids up in the parent pickup line, and I didn't know if I was going to make it home in time or if I was going to have an accident. And I had several accidents. And that's just kind of not the life that you want to have, especially when you're in your late 30s, early 40s.

My name is Sandra and I was diagnosed with Ulcerative Colitis in December 2020.

During the last trimester of my first pregnancy, I started having abdominal pain and some mucus discharge, which people just kind of attributed to, "You're pregnant. The body does really weird things when you're pregnant." I had my second child and then had a flare—what I recognize now as being a flare. That went on for about two years before I was formally diagnosed and was actually able to get in to see a gastroenterologist.

I'm now on my third gastroenterologist, and he was the person that actually asked me, "What is your quality of life like?" I remember bursting out in tears because no one had ever asked me about my quality of life. It was just like, "Oh, try this drug. Try this drug. Try this drug." Nothing was working. So he actually suggested surgery. Nobody wants to hear, "Oh, you have to have surgery," because that's like, "Oh, I failed. I failed every medication. Why can't I have this work for me?"

J, Sandra's Partner: There were many sleepless nights, many doctor visits, a lot of questions, a lot of hope, and drugs and remedies that seemed to fall through.

For a couple of years, I was watching her die. And then after we got a good doctor, Dr. Ali, everything turned around.

Sandra: I ended up having surgery shortly thereafter. I woke up feeling no pain. The brain fog was gone. I had no abdominal pain, which I had been living with 24/7 for a long, long time.

My WOC nurse put me in touch with 180 Medical, and everyone was just so, so nice—from everyone who answered the phone to the person who set me up as a new patient with the company. I didn't have to do anything, which was huge because I didn't really know much about ostomy supplies. The lady that I spoke to was like, "We just take care of everything. We deal with your insurance, and you just have an order that comes in every month."

That was the best thing. 

J: It was a very, very, very scary couple of weeks. Then she got hooked up with 180 Medical, and over the past almost three years, I've watched someone who was on death's door come back to life.

Sandra: I was able to try a lot of different products out. I love trying different products. Mostly Convatec products. I've probably gone through the whole catalog of Convatec.

Right now, I've got a really good routine, and I don't think about it. I can go sit in class. I have no leaks. Right now, I just use the Esteem+ bag with a moldable ring, and that's it for me.

When I first learned about having ostomy surgery—I have specifically an ileostomy—I got online. I started looking at Instagram and YouTube and learning about ostomies. I think the biggest question, and as vain as it does sound, was, "Am I going to be attractive after having surgery?" Because it's your whole body image. You're going to have an appliance, or an ostomy bag hanging off your body. What is my partner going to think about that?

So out of all the big questions, that was the biggest one, and I found it to be extremely common.

She does not mind. She's just happy that I'm around. Most patients will name their stoma, and mine's called Derek. So Derek saved my life, and my partner is just happy about it.

J: At the very, very beginning, she was very self-conscious about it. What I explained to her was that it's a trophy. It's a medal of honor. She beat a disease and is here to tell about it. It doesn't take away from her sensuality, her beauty, or her body. It doesn't do anything except keep her alive, and that's beautiful.

Sandra: My clothes fit. I wear everything normally. That's also a big thing with ostomates: Are you going to be able to wear normal clothing? Yes, you can wear normal clothing. I wear tight pants. It's not a problem for me.

It gave me my family life back. It gave me the ability to leave the house without fear. I can play with my kids and actually spend time with them. That's been the biggest one. I've done a Marathon twice with it. It's not prevented me from doing anything at all.

J: She went from having the courage to go out in public for only half an hour to an hour at a time to wanting to go back to school. She was very, very afraid that she wasn't going to be able to do it because it would hold her back, or she would face discrimination, or it would inhibit her from pursuing her goals and dreams. It hasn't. It has actually propelled her forward into what she wants to do.

Sandra: Right now I'm at Community College as a pre-nursing student, and my reasoning for that is I want to go back and be a WOC nurse, a wound, ostomy, and continence nurse. I want to take care of people who went through the same experience that I did because I don't think anybody has a better understanding of it than someone who's gone through it.