Lois Fink, internationally-renowned motivational speaker, recently published her memoir, Courage Takes Guts: Lessons Learned from a Lost Colon, where she writes about her lifelong battle with Crohn’s disease and what she’s learned along the way, including funny, personal stories. Last month she sat down with Shield’s Ostomy Lifestyle Specialist Laura Cox to share the benefits of a hearty laugh, her father’s sage advice and why she doesn’t miss her colon.
Laura Cox: Hi Lois, thank you so much for taking the time to do an interview with Shield HealthCare. Could you first summarize your diagnosis?
Lois Fink: It took almost two years for me to be correctly diagnosed with Crohn’s disease. I started presenting with fevers, diarrhea, and abdominal pain. I was experiencing this as early as 10 years old.
By the time I was 15, I was very underweight. My mother was very concerned and she started to bribe me to eat. She told me if I got to 90 pounds I could get the sweater all my friends were wearing. She would say, “Look at you, you are nothing but skin and bones, what am I going to do with you? Why won’t you eat?”
This whole time I’m still having abdominal pain, fevers and diarrhea. My mother was taking me to numerous doctors who couldn’t find anything wrong with me.
Still, at 16 there was no sign of breast development. My mother was so nervous that it was possibly a sign of bad reproductive health. She made an appointment for me with her gynecologist, but we didn’t find an answer. My mother was relieved, but I wasn’t. Through all of this I thought, “Maybe I am bringing this upon myself.” Because all the doctors said, “There’s nothing wrong with you—you’re nervous.” I looked in the mirror and thought, “Well, maybe I am the cause of this.”
My mother made an appointment with a gastroenterologist. I kneeled on a stool and he took that scope and I felt as if I was violated. I was so bruised internally and psychologically. “There is nothing wrong with your daughter. If she does not get herself under control she’s a good candidate for colitis.” My mother was at a loss and said to me that numerous doctors had said there was nothing wrong with me, so perhaps it was a mental issue. She alluded to possible mental hospitalization if I couldn’t get ahold of myself.
I told my mom I would not see another doctor. They were dismissive, but she took me to one last doctor. While I was in his office I developed a fever of 102. He told me “Lois, you can’t manufacture a fever. That’s your body telling us something is wrong.” He was the only doctor that listened to me, saw me, and thought I may have Crohn’s or colitis.
At this point I was 17 and in pain constantly. The pain was so severe I felt as if I’m would to pass out when going to class. I was losing weight rapidly, going to the bathroom numerous times a day and during the night. I was malnourished, sleep-deprived, in pain and all I wanted to do was drink water. The inflammation in my gut had gotten so bad that every time I walked I could feel a mass inside of me vibrating. I thought,“Oh, I have cancer.” I didn’t tell anyone because I felt no one was listening.
One afternoon, after walking home from school, I plopped down on the couch and said, “Mom I can’t go on anymore.” I collapsed. I thought I had known pain, but this was so much more. In the 1960s, doctors made house calls. He was pressing on my abdomen and he said, “She has appendicitis.” My mother was so angry. She had lightening coming out of her eyes. She said, “You mean, my daughter has had appendicitis for two years, and you’re just figuring this out?”
After what was supposed to be an appendectomy, I wake up and a doctor walks in to my hospital room and introduces himself as a gastroenterologist. “You don’t have appendicitis, you want to know what’s wrong with you?” I thought, “uh yes, I do” but I did by best not to be sarcastic. “Crohn’s Disease.” I felt like, “You see, there is something wrong with me.” I felt a surge of vindication, but then simultaneously, total fear. I hadn’t heard of Crohn’s disease, but I didn’t like the way it sounded. It wasn’t on the public-health radar at the time, like diabetes was.
And that’s how I found out. Almost a full two years after when the symptoms really became apparent. It had always been Crohn’s disease. It started in the terminal ilium. I was 62 pounds and going in for what I thought was an emergency appendectomy.
Laura: It sounds like your diagnosis was pretty traumatic. Would you say it could have been something that would lead to Post Traumatic Stress?
Lois: I was subjected to all the medical tests available at the time, including the brutal sigmoidoscopy. I was a young girl, 17, I’ve found out I have a disease, I am not allowed to go back to school. The doctors decided my physical, psychological and emotional health was too precarious. Then came the barium enema. There’s me wearing a hospital gown that’s open in the back, on an exam table, trying frantically to keep the hospital gown closed, then there’s this lovely enema between the legs. Even though one of the attendants was a woman, the other tech was a man. I was a young girl, and I felt so embarrassed. I could feel the barium as it went through. Then they started maneuvering your body and directing my breathing. I was so humiliated.
It’s interesting you bring Post Traumatic Stress up. That term hadn’t even been coined or thought of yet, but I really think that’s what I went through after the test was over. The doctors are all gathering around and preforming exams. They were scribbling notes and they started talking about me as if I wasn’t there. I wanted to scream, “I’m here, I can hear you. Can you stop talking about me?” I felt so humiliated and discounted—almost as if I was a new form of bacteria that had just been discovered and that everyone was fascinated by me. It wasn’t an easy feeling.
Laura: It was a long process for you in the 1960s, and it took them opening you up to try to perform an appendectomy to finally diagnose you. Could you speak to the difference of medical care then compared to now?
Lois: I will say that there’s a lot more known about Crohn’s disease than when I was first diagnosed. Physicians have known about UC longer, but Crohn’s was only recently named by Dr. Crohn in the 1930s. He was the lead physician on the team. He got the honor of having a lovely disease named for him. We now hear ads on TV for medicines for UC and Crohn’s Disease, so there’s a lot more awareness about it. But unfortunately, I’ve still heard people taking six months or a year to be correctly diagnosed.
Unfortunately, it has a lot to do with the physician’s willingness to listen to their patients. I was a young girl and it was so easy to dismiss me. Doctors are more aware of Crohn’s disease and ulcerative colitis, but they still need to really listen to patients. IBD is tricky and it can be very devious and cunning.
Laura: Before diagnosis, you were met by a lot of doubt and blame for your symptoms and you were told it was because you were an anxious child. Unfortunately, I still see this happening today. Do you have any advice to those who feel their doctors or family members are not taking their symptoms seriously?
Lois: Yes. First of all, don’t doubt yourself. Trust your gut (no pun intended). If you are in pain, losing weight; if you’re running fevers, if you know you just don’t feel right, just keep saying, “I know my body.” If something is going on that wasn’t happening a month before, if you have abdominal pain, spiking fevers, just trust your gut. If your doctor says there’s nothing wrong with you, get another doctor. Go to a doctor that finally listens to you. If you’re a young teen and are still under the care of your parents, just keep saying, “Mom, Dad, I know something is wrong with me.” It’s so easy to blame the patient. Don’t allow somebody to put that on you. Stand firm. If you know your body doesn’t feel right, something is probably going on.
Laura: In the book, you describe a time when your dad gave you a beautiful piece of advice. You asked him, “Why me?” in regards to your disease. He answered, “Perhaps later in life, you will meet someone, and because of what you’re going through now, you will know what to say and how to help.” How has that affected your life and advocacy work?
Lois: Most teenagers think their parents are pretty stupid, and I was no exception. My dad was on Omaha beach on D-Day, and he survived. But at that time I didn’t think he was very smart; he was a military man and explained everything in military terms. He comes back with this incredible, insightful answer, and I’m staring at him, thinking, “That came out of my father’s mouth?” I had no idea how powerful those words were and how much they would affect my path in life. They provided a framework that was to become an important part of my life later, but I couldn’t know that at the time.
I think [his advice] was always in the back of my mind. I needed maturity and a few years under my belt, and to experience life—and experience what it was like to live with a disease that has no known cause or cure, and how I was able to come to terms with it. Little by little, my father’s words became true, again and again over my lifetime.
Laura: Could you speak to the importance of a support network, and your experience with them?
Lois: They are so important. When you’re battling a disease like Crohn’s or you’ve just been told you need ostomy surgery, you feel totally alone and isolated. When you have a support network where you can say to someone, “This is how I feel,” and have someone validate that and give you hope. That is what I think a support system does. You are benefitting from somebody who has already walked that road and they can help you with those potholes you’ll find in the road. When you stumble there’s somebody that can pick you up and help you. They’re a support network when fear gets the better of you. They help you know you’re not alone.
I am a huge proponent of the importance of a support network. You need someone to laugh with and cry with. With this disease, and with ostomy surgery, you must have a sense of humor. It’s a very important part of healing. You have to learn to joke, otherwise you’ll cry. We all know how good it feels after you have an incredible laugh. How relaxed you feel and how much better you feel after a hearty laugh. You have to have a sense of humor. You can’t laugh and cry at the same time.
Laura: Before ostomy surgery, you were fearful of having a pouch. Any advice to those trying to accept their new ostomy pouches?
Lois: I was terrified of ostomy surgery. Ostomy surgery had been the stuff of my nightmares. I remembered as soon as I got the diagnosis of Crohn’s, I asked my doctors, “Will I ever have to have a colostomy?” I didn’t know the other types of ostomies. I didn’t understand the word, but I knew it involved surgery, and it was a surgery you wanted to avoid. Fear is not rational. But when you’re in the middle of it, you don’t care about rational—you believe in all the fear.
Then I met this young patient, and she walks in and is wearing a skintight jumpsuit. My first thought was, “Where’s the bag hidden?” We sat and talked for two hours, and she gave me full permission to ask her any question, no matter how personal.
She said, “I want you to go home and write everything you’re angry about having Crohn’s disease.” I started writing, and I came up with 15 reasons. When I looked at my last one— “I am tired of being an observer of life and not an active participant”—I put the pen down, and there was a shift inside. I was still scared of surgery, but I could no longer deny how my life had been. I had been a prisoner. I just kept reading and rereading the last thing that I wrote, and I thought, “Yeah, I want something different.”
It took me about a month after surgery before I thought, “Why did I put it off so long?” I put it off because of fear and we don’t want to talk about ostomy surgery. Don’t let the fear make you hang on to your colon. Contact your local UOAA support group, go to a meeting, talk to people who are close in your age. Ask your WOCN, doctor, surgeon if they can suggest somebody that you can have a one-on-one with. Knowledge is power.
Laura: What is the one thing you hope people will get from reading your book?
Lois: Hope. That you’re not alone and that there is incredible life after ostomy surgery. The only thing that will stop you is that thing between your ears, called your brain. I’m not going to say you’ll sail right out the door. You have to get used to a new way to go to the bathroom.
Not everyone is as ready as I was—there’s so much running through your mind. Your WOCN is there to help you. They, along with my two mentors, made my recovery so easy. I knew they were there to answer my questions. There was the UOAA support group. Surround yourself with people who can help you. It didn’t take me that long to feel comfortable. Contact your WOCN – they are so wonderful. Know that you can do this. It’s only new and uncomfortable for a while. Once you change your pouching system a few times you realize it’s not that hard or bad! It’s not insurmountable. The products today are a far cry from what they used to be.
It used to be that when I arrived anywhere, restaurant, someone’s home, I would look around for where the restrooms where located. when I realized I didn’t have to do that anymore, sense of relief flowed through my body. Yes, I know it’s scary, but you can do it. Fantastic life is waiting for you after surgery. People climb mountains, swim, skydive, hike. You can do anything you did before ostomy surgery; the only difference is now you will be healthy.
Laura: Is there anything else I didn’t touch on that you’d like Shield HealthCare’s OstomyLife community to know?
Lois: I feel Shield’s online community is an incredible resource after ostomy surgery. Ostomy surgery affords you a normal, healthy life. Take advantage of it. Don’t let the fear stop you.
I don’t miss my colon or rectum! They didn’t work and it was such a drain on my body. My body felt a difference three days after surgery. Sure, the surgical scars still hurt, but I didn’t have a dead organ inside of me, sapping me physically and emotionally. Sometimes you have to lose something to gain something bigger and better.
How can one limit ostomy output while sleeping?
