There are several misunderstandings about the relationship between mental health and inflammatory bowel diseases, such as Crohn’s disease and ulcerative colitis. For instance, individuals who know very little about the diseases believe that emotions, such as tension and nervousness, can actually trigger them. This is not true. One of the reasons why a majority of individuals believe these misconceptions about IBD is because decades ago, it was believed that individuals with certain personality types were more prone to developing these diseases. However, recent scientific research has shown that this theory is completely false. The cause of the diseases is biological, not emotional.
Still, experiencing tension or nervousness can have an impact on how some individuals cope with the disease’s physical symptoms. While it is normal to feel tense, nervous, frustrated or sad, it is important not to ignore these feelings.
For this reason, taking care of your mental health is just as important as taking care of your physical health. Take it from these 7 individuals with Crohn’s disease and ulcerative colitis who share how the diseases have affected their mental health and how they cope:
When Jacklyn was diagnosed with ulcerative colitis, she was not told nor did she understand how the disease would impact her mental health. It took her over two years to realize that her old life was behind her and to accept that the fact that her new life would be with UC. Her self-esteem took a hard blow and she could not recognize the individual staring back at her in the mirror. Except for around her boyfriend, Jacklyn held her head high in front of other individuals. She portrayed herself as doing great and feeling great, but the truth was that she was doubtful, fearful, and depressed. “Having this disease has taken me into the deepest, darkest trenches of my mental health. I’ve lived with depression and faced the possibility of death,” she said. “I know the shame, the fear, the sadness, and the loneliness. I know that this disease is a monster,” she added.
Ulcerative colitis affected Jacklyn both physically and mentally, which is why she realized that her feelings of depression and anxiety needed to be addressed in her treatment plan. “I make it my mission to ensure that other patients feel supported and are doing well with not only the physical ailments this disease presents but also the drastic effect it has on mental health. I am visible, I am strong, and I am determined to keep fighting for myself and others,” she said.
Samantha was diagnosed with ulcerative colitis at the age of 4. Over the next 20 years, she would undergo numerous surgeries and try almost every type of medication and treatment in order to receive the best possible care. Her life completely changed during her sophomore year of high school when she fell ill and started to experience severe stomach pains. “From there, it was constant medical testing. ... I traveled up to Boston to see the surgeon who did my original surgery. He found that I had a partial obstruction that would be easily fixed with surgery. Unfortunately, when I woke up, the pain was still there,” she said. A few years later, she travelled to the University of Minnesota to undergo a total pancreatectomy with auto islet cell transplantation. 6 years later, Samantha is finally feeling the healthiest she has ever been. “I struggled a lot with anxiety and depression when I was sick, and that still follows me today. Thanks to my amazing doctors and surgeons, I graduated from high school in 2011 and graduated from George Mason University in 2015. Today, I still blog about my experience in hopes to help others who are like me. I also volunteer through my hospital to help people of all ages dealing with the idea of surgery,” she said.
Mitchell was diagnosed with ulcerative colitis in 2011, although he began to experience symptoms in the spring of 2009. It took 3 years for him to receive an official diagnosis because his disease was mistaken for C-Diff. “I remember a feeling of relief when I heard the news that we finally knew what exactly was wrong with me. Of course, I had no idea of what Crohn's is and how it would affect my everyday life, but I soon figured out that it was going to be the biggest challenge of my life,” he said. Following his diagnosis, Mitchell fell ill. He had lost over 60 pounds and he was throwing up everything that he ate. He isolated himself from the world around him and reached a point where he felt like giving up. “It took me about a year to finally accept my diagnosis and move on with life. One night, I just got sick of living life in the dark, and I told myself that this is the life that I was given and that I am going to try and make the biggest difference I can. My family and friends have helped me cope and have given me so much support; I will never be able to thank them enough,” he said.
Rena was diagnosed with ulcerative colitis in 2008. During her flare-up episodes, she fell into a state of isolation, forgetting what life was like as a young, healthy, and energetic individual. “The expectation of a healthy life and the unfair reality caused a lot of unnecessary suffering. What I learned is that we all have the option to dance with life. Crisis can open a door to a new opportunity, a loss can be seen as a gain, and a breakdown can turn into a breakthrough,” she said.
Jessica was diagnosed with Crohn’s disease at the age of 14. During high school, she realized she wanted to pursue a medical career and become a doctor. Her passion for medicine grew even stronger in college and during her fourth year, she took the Medical College Admissions Test (MCAT) for admission into medical school. During this time, she had experienced a painful flare-up and had to be admitted into the hospital. She had to undergo an MRI examination the same day that her MCAT score was going to be posted. “Back in my hospital room, I immediately grabbed my phone — as soon as I saw my score, I burst into tears. It was the score I was hoping for,” she said. Unfortunately, during her third year of medical school, Jessica had to be hospitalized numerous times and the medications she was taking were no longer able to control her disease. She was told that she would need to undergo surgery. “I was overcome with anxiety, depression, and fear as to what the future had in store for me. The six months surrounding my surgery were some of the toughest. I relied on my family and friends for extra support. Working to build me up, my support system was there with me every step of the way,” she said. Jessica made the difficult decision to postpone her graduation by one year. “At first glance, this seemed like a bad thing, but for me, it has actually been a blessing. Straying off the normal path has not only made me a stronger person, but it has also afforded me opportunities that I would have never otherwise experienced — taking trips with loved ones, meeting new people, and helping me to find a better life balance between school and Crohn's disease. Living with IBD has made me a strong believer in the phrase ‘Everything happens for a reason’,” she said.
Nicholas was offered a full scholarship to his local state school from the Air Force, as long as he majored in physics. In September of 2014, he began to experience frequent bowel movements and by October, his condition had worsened and he developed a small hemorrhoid. He began to lose a lot of weight and he was lacking in energy, but he had hoped that the situation would resolve itself. During his Thanksgiving break, Nicholas was hospitalized and prescribed prednisone for the very first time. “I continued to lose weight, and I continued to have diarrhea. … I came back to school for finals week, continuing my medication, to finish out the semester. Loaded up with another six weeks of prednisone. ... I took the entire break off and had to sleep most of it away due to the pain and diarrhea,” he said. During his spring semester, his weight dropped to 180 pounds and he experiencing bowel movements 5-6 times per day. After visiting a gastroenterologist, Nicholas was told he had an inflammatory bowel disease. He was prescribed an additional 6 weeks of high-dose prednisone and was told to refrain from all physical activity. Nevertheless, he decided to continue forward with his training and classes, all the while experiencing severe symptoms such as pain and diarrhea. Finally, in February, he was hospitalized and diagnosed with Crohn’s disease.
Nicholas’s condition put a strain on everything in his life – his family, girlfriend at the time, friends, classmates, and roommates. By mid-April, he managed to earn a Field Training slot. “I was now down to 165 pounds, practically skin and bones. I couldn't pass the Physical Fitness Assessment. … Somehow word made it back to our sergeants that I was on medication, and I was forced to bring in all of the paperwork on my diagnosis of Crohn's disease,” he said. At this time, Nicholas was disqualified, his scholarship was taken away, and job offers that he had received were no longer available to him. He was considered undeployable and he had even broken up with his long-term girlfriend. As he started on his long-term treatment for Crohn’s, Nicholas continued to lose weight and he was beginning to fall into a deep state of depression. “During the summer though, something clicked. ... As soon as I could walk around and move without too much pain, I was hitting the local gym to see what I could get myself into. Putting on my headphones and being able to deal with reality for an hour or two was the best way for me to process what had happened,” he said.
Courtney is coping with Crohn’s disease and although she fell into a world of pain, depression and hopelessness, her friendships within the Crohn’s community helped her to overcome any challenges she was faced with. “It is so wonderful to have people who know what you are going through and who support you 100% without judgement and know exactly what to say to make your day better. I had to change my mindset to not feel sorry for myself and let the disease win. I took up reading motivational books, coloring, crocheting, and really anything to keep my mind busy and to allow my body to heal,” she said. Her advice for patients who are battling or living with any type of disease is to remain strong and press through. “You are brave. You are strong. You are a warrior!! I'm so grateful to all those who have believed in me and just know there are so many people who believe in you. Keep the faith and don't lose hope — I promise there are brighter days to come!” she said.