Holland Graham 38, of Wilmington NC and Perren Rives, 29, of Redding CA, are two sisters living with ulcerative colitis(UC), a chronic, or long-lasting, disease that causes inflammation and sores, called ulcers, in the inner lining of the large intestine, which includes the colon and the rectum—the end part of the colon. UC is one of the two main forms of chronic inflammatory disease of the gastrointestinal tract, called inflammatory bowel disease (IBD). The other form is called Crohn’s disease. Normally, the large intestine absorbs water from stool and changes it from a liquid to a solid. In UC, the inflammation causes loss of the lining of the colon, leading to bleeding, production of pus, diarrhea, and abdominal discomfort.
In an effort to help illustrate the importance of effective physician and patient communication, Holland and Perren wanted to share their experiences living with the disease and under the care of Dr. Drossman. Their answers appear here in their own words.
Q: When were you diagnosed with ulcerative colitis?
Holland: I was diagnosed with Ulcerative Colitis at Age 15, about 6 months or so after my father died. I was a sophomore in high school.
Perren: I was diagnosed in 2001 when I was 17, first with Inflammatory Bowel Disease. But after the 2nd flare in Feb of 2002 they changed the diagnosis to Ulcerative Colitis, which was heretical with my paternal aunt and oldest sister.
Q: How did the diagnosis change your life?
Holland: At that age, I didn’t truly have an understanding of what I was dealing with. I was having severe symptoms, so was glad to have some course of treatment.
Perren: The first flare, I thought was environmental because I had been on a camping trip, but after my second flare and a chronic diagnosis I realized it was more serious. I think being young when I was diagnoses I figured I would get on medicine and have a quick fix. I don’t think I was aware at the time of just how much the disease affects every part of your life.
Q: What was your journey like before you saw Dr Drossman and how has his involvement in your care impacted your life, the disease and your outlook?
Holland: Fortunately, I was blessed to have Dr. Drossman from about the time the disease was diagnosed. I was referred from a doctor in High Point immediately to Dr. Drossman. At the time, I did not know how amazingly blessed I was to be under his care. It wasn’t until I was older that I really grasped that. Dr. Drossman has walked along side me for 23 years now. I have always felt that he has had my best interests at heart. As with some doctors who want to only give you your allotted 15 minutes that is covered by insurance, Dr Drossman has always taken as much time as needed to address my health as well as any other areas/concerns that needed to be addressed.
Perren: When I was first diagnosed, I saw a GI doctor for a year and a half before I switched to Dr. Drossman. My main reason for switching was because my sister whose condition at the time was more severe than mine had been referred to Dr. Drossman. My doctor knew of his reputation and knew he was the best doctor anywhere around. I was a sophomore in college and I was experiencing my 3rd flare by the time I met Dr. Drossman. Because of his relationship with my sister he got me right in, which usually he is booked 6 months out. He asked all the family history questions, but did treat me based off of what he knew about my sister. We both had our own relationship with him. It wasn’t until 2008 when I was hospitalized that I realized just how fortunate I was to have him. I have been hospitalized three times due to colitis and each time, he comes to check on how I am doing, not physically, because he knows all of that, but me, emotionally, mentally. He advises me from a standpoint of what is best for my life, not necessarily the quickest fix. I used to get frustrated because I wanted a quick fix and that is not his method, but now I am so grateful because he wants to put patients in remission and that means dealing with the physical and the emotional.
Q: What makes Dr Drossman so unique? How has he helped you?
Holland: Dr. Drossman is not just about processing people through and going with whatever drug a pharmaceutical company might be pushing at the time. He has repeatedly worked with me to come up with a health care plan that works for me. I have for a long time felt like health was not just about your physical state, but your emotional and spiritual state as well. He takes all of this into consideration and listens to my input when it comes to what plan works best for me.
Perren: I think I could write a book on what makes this man so unique and rare, but to be brief, first and foremost it’s his heart. He is one who has truly been called to his profession. We all know there are some doctors who practice medicine because of the financial gain, but Dr. Drossman practices from the heart. After my most recent hospitalization, I can say he cares more about the complete well being of a patient, than just fixing the physical issue. Being a 29 year old female, I was facing two very hard decisions. I was experiencing a flare that was not responding to steroids; and I had already come off of an immunosuppressant once so my options were surgery or Remicade indefinitely. Neither of these was favorable for me since I have not had kids yet and also would prohibit me from taking certain adventures in life. I was hospitalized for a month and while I was in the hospital Dr. Drossman would come and sit with me several times a week just to talk. He wanted to know about me, about my life, about my desires. We talked about dating and how IBD affects that; we talked about working and how draining the disease is, and how colitis affects that. We talked about family relationships and family history and how that affects colitis.
We talked about our faith, and he knew I believed in Jesus for a miracle and that my faith was playing a part in why the symptoms were getting better. He had me come to his office one day after I got out of the hospital because he wanted to know what it was like to be the patient, to live with a diagnosis that has no cure and what that does for my future. As we were talking he asked me about my fears and my passions. The disease at this point was still very severe but my symptoms had improved. I asked him how that was possible and he said “illness is what you experience, disease is what you see.” He knew my faith was playing a part in my healing and I knew he was playing a part as well. After some long discussions he knew I honored him and his position in my life as a doctor and we came up with a solution. No other doctor who was on my service was in agreement with what we decided but he took a risk with me. He tried a new study of an old medication to see if it would work. He knew my heart and that Remicade and surgery were not options I was comfortable with, so he took a chance, monitored me very closely and three months later saw drastic improvement. I hate to think where I would be today if I did not have a doctor who listened to me and genuinely cared about my emotional well being as much as my physical.
Q: Based on your experience–please provide an example of effective doctor-patient communication.
Holland: I had a bad flare back in July of 2011. I awoke from a colonoscopy thinking I was going to have revisions to my treatment and instead found myself being admitted to the hospital. I was under the care of the IBD team there. Upon reviewing my colonoscopy results they made a swift diagnosis and said I had Crohn’s disease and said I would be on Remicade for the rest of my life.
Dr. Drossman advocated for me and informed the team that he had walked beside me along this journey, that in the past I had been symptom free and medicine free and he had no reason to believe that this could not be the case again. He would check on me daily in the hospital and would sit and talk to see how I was doing. This actually shocked the rounds team who could not figure out why someone like Dr. Drossman would be sitting in the room having a conversation with me.
After being released I had to return to the hospital to receive Remicade infusions and Dr. Drossman would come and sit and talk with me during each treatment. Checking to see how I was doing. He knew how much I hated having to be on this course of treatment and he really worked with me to not have to do these any more. For me, it was important, because the infusions made me FEEL like I was sick and that is not who I am. Fast forward to today…. I am on maintenance medication 6mp and Lialda and no Remicade. Had I just gone with what the team assessed from a quick snapshot of a whole history, I would probably still be on Remicade today.
Perren: I am currently living in California, but I continue to see Dr. Drossman. We email when I’m doing well every couple of months. I still see him every 6 months. Whenever I have an issue he or his assistant always responds to emails within a day. Each appointment I give him a physical update of where I am but I also talk about my life and what’s going on, good and bad. He never tries to talk me into a new treatment. He will suggest something, most times I push back because I hate being on medicine, we discuss why I do and do not like certain things he suggests and then we meet in the middle. He is very gracious about working with me to get me comfortable and if I strongly disagree with something he suggests he takes another approach. He looks for a new drug, or helps me come up with a new way to manage the issue.
Q: What is your advice to other people who may be struggling with either IBD or another GI disorder–or any other medical condition?
Holland: Help is available. Dr. Drossman is a doctor that is committed to helping you get well not just managing your disease. I truly believe that what he wants most is to see me totally disease/symptom free. For me, I have made a decision that I am not going to just accept being sick. This disease doesn’t define me and I don’t consider myself a sick person. I have a very full life most of which I live symptom free. I have Dr. Drossman addressing my medical needs, I have changed my diet, dealt with the emotional aspects of the disease (stress and triggers) and most importantly I have a very strong faith, which has carried me through trials and setbacks. God’s plan for me is to live a full life and I plan to do just that!
Perren: For anyone with an autoimmune disease, it’s not all physical. I fully believe that auto-immune disease is as much emotional as it is physical. If your regular doctor is not dealing with the emotional aspects of your life and events you have been through, then find a counselor. Medicine treats a physical symptom that usually has an emotional root to it. We were created body soul and spirit so we have to take care of all three.