Tionna Forchion has been living with Crohn’s disease for 14 years now. Because of the diagnosis, doctors placed many limitations on her life, including instructing her not to finish high school & college and telling her that her body was unable to conceive and carry children. But despite the doctor’s reports, she has conquered those things and many more! She talks about the illness, how having to get a Colostomy at an early age saved her life and how after all the years of living with it, she finally felt brave and comfortable enough to speak publicly about it. Tionna has also started an organization called, “MAPP Movement,” (Motivating and Promoting Positivity) whose mission is to support and encourage those living with chronic illnesses…
Talk to us a little about exactly what Crohn’s disease is?
Crohn’s disease is an autoimmune, inflammatory bowel disease that can affect any part of your gastrointestinal tract from your mouth to your anus. Even though the disease causes inflammation and ulceration in the digestive tract it often affects other parts of the body as well. The symptoms can vary depending on the person but usually include nausea, stomach pain, diarrhea, bloody stool, weight lose/gain, fatigue, dehydration, and joint pain to name a few. Currently 1.6 million Americans suffer from IBD (Inflammatory Bowel Disease) and there is no cure or no known cause.
How long have you been living with it and how has it affected you?
I have been living with Crohn’s for 14 years now and it has honestly affected every part of my life. Being that I was diagnosed at a young age I quickly grasped the fact that my social life would indeed be affected due to my illness. I would miss parties and gatherings with my friends because I simply physically couldn’t attend which eventually affected some of my friendships. I still am learning how to manage the uncertainty of living with Crohn’s. I never know when a flare will strike, one day I feel amazing and the next I could hospitalized. That’s how unpredictable it is which makes it hard to plan ahead, sometimes I even have to cancel an event last minute that I was scheduled to attend as a result of a flare. Another major way it has affected me is now I have to be extra mindful of my eating habits. I live on a low fiber/low residue diet and anything outside of that diet I know for sure I will pay for with extreme pain. Since I’ve been diagnosed eating in public causes me a lot of anxiety! I never know how my stomach and colostomy will respond to what I am eating, so when I enter a restaurant the first things I locate are a restroom and an exit door. My friends know if they are having a birthday dinner and going out afterward to not invite me to the dinner part lol. All in all living with Crohn’s has changed some things in my life but also has taught me to appreciate every single day, especially the happy healthy days!
What are some limitations/hindrances that the doctors and the illness tried to put on you but you have managed to overcome?
My doctors and my illness have tried to limit me in numerous ways, especially in high school. I was constantly extremely sick, missing months of school, and part of my high school career I even had to attend school at Children’s Hospital of Philadelphia. During that time not only was I living temporary in the hospital I was also on a feeding tube, not able to eat anything by mouth for five months, so it was a difficult part of my life. My gastroenterologist at that time believed that focusing on my coursework, especially with being in honors and AP classes, and me fighting for my life daily at the hospital was just too much for me to handle, too stressful, and strongly recommended I take a break from school. However, I was determined to go to my prom, graduate, and walk with my class. I got discharged from the hospital and got my feeding tube out literally the day before prom, and was able to experience that rite of passage every girl dreams of. Despite my illness and many hospitalizations I also walked with my class and not only did I graduate but did in the top ten percent of my class with a 3.8 gpa and as President of the National Honor Society. I just say all that to say, doctors wanted me to give up on school until I was ”healthy,” yet I proved to them that not only would I push through to finish school, I would excel. I went through the same issue in college, my Drs. and some professors told me to give up on school, I’m not healthy enough, I need to just stay at home and be disabled. However, I paid them no mind and I continued my education, I had to transfer to a college closer to home and take a semester off here and there due to my health, but I NEVER gave up on my education simply because of what any Dr. said. I’m kind of a hard headed patient I’ll admit, whatever they tell me I can’t do or will never do I work twice as hard to accomplish it. Crohn’s will never put me in a box, I promised myself I will live beyond this debilitating illness.
How do you manage to stay motivated and keep a positive attitude?
My motivation comes from the two precious faces I wake up to every morning which are my sons. I was told at a young age it was biologically impossible for me to conceive let alone have a body that would ever be strong enough to have children. My boys are proof that miracles are real and that no doctor has the final say, only God does. So I manage to stay motivated and keep a positive attitude because I have no other choice, two little boys depend on me, I have to stay strong for them.
Due to some complications from the illness, you had to have an Ostomy. Talk to us a little about that and about what you did to celebrate your “Stomaversary?” What made you finally step out and talk about your experiences publicly?
On Christmas Eve 2007 my doctor was finally letting me go home after being hospitalized for three months. However, I started having excruciating pain as I was literally walking out the door of being discharged. I was rushed to X-ray and it showed I was having severe bowel obstruction and had to go to the operating room ASAP. It was a life or death surgery, and I even went flat line during the procedure. All I remember is waking up in ICU with tubes down my throat, not able to move, or talk. I then looked down and saw not only my stomach cut open and stapled together but a colostomy. I was so devastated and upset, I was only nineteen and had to live with an ostomy for the rest of my life. The doctors came in and explained that they didn’t think I would make it and that the colostomy actually saved my life. From that day forward I lived in silence not telling anyone that I had Crohn’s or a colostomy because I was embarrassed, ashamed, and thought no one my age would understand my situation. Eventually I came to terms with the fact that this is my life and I was going to make the best of it. I wanted to be an inspiration to others with a similar situation as mine and for them to know they are not in this fight alone. Crohn’s and a colostomy aren’t easy to open up about, but I knew if I wanted the world to understand my illness, I had to expose my truth and reality on what it is like living with it. A Stomaversary is the day in which I got my stoma(ostomy), it’s basically a birthday/anniversary for my colostomy, and I celebrate it every year not only because that surgery saved my life but as a reminder to be grateful for every day that I open my eyes. This year I did something special on my Stomaversary, something I never thought I would be brave enough to do. I posted a picture online with me showing my stomach and colostomy bag. That was a huge step towards me fully accepting my illness, and to get the world to break the stigma associated with ostomies. Instead of being disgusted when they see someone with an ostomy, I hope the world starts to see the person as beautiful and brave. I want every girl with an ostomy to be proud of their body, our ostomy and scars are proof that we survived, and nothing is more beautiful than strength!
Recently, you have dedicated a lot of your time to research this illness and also bring awareness to it. What have you learned that the doctors may not have told you, have you incorporated any of your own holistic remedies along with those prescribed by your doctor?
Well actually in college I first became truly dedicated to learning more about my illness, being more hands on towards working on a cure, and I wanted to be a voice that brought awareness to this silent, invisible disease. So as a college student I was offered the position as a development intern at the Crohn’s and Colitis Foundation of America’s headquarters office in New York City. I made that long commute every day because I was dedicated to the cause. I soon after started working for the organization and also volunteering with my local chapter. Being surrounded daily with others with Crohn’s and with people who were just as passionate about the cause as I was allowed me to gain a lot of knowledge doctors never mentioned to me. I’ve never got into holistic remedies although I am very open to learning more about it. However, one thing doctors never told me that I’ve learned is how beneficial meditation can be towards your physical health. I have found it to be extremely helpful especially in times of a severe flare. So I make sure to take my meds and meditate every single day.
Going through this, especially at a young age, has been very trying and I’m sure has given you a whole new outlook on life. What would you say your life’s motto is?
Just one motto!? But I have so many lol I can narrow it down to two. My first motto is,” always be kind you never know the story behind a smile.” I say this one because for years when I was living in silence with Crohn’s disease and an ostomy people would make comments about how much my weight fluctuated, or say things about me wearing weaves, not knowing that even though I seem to be fine from my outward appearances I was really sick causing weight changes from my meds and flares, and not knowing I started wearing weaves at first because chemo took all of my hair out. As a result of my experiences I try to be kind to everyone no matter what, because I know there could be something serious going on with a person who always smiles and looks fine. My second motto is “life is a gift, you must enjoy it and bask in every moment.” We must make the best out of every moment of the day, you never know when your life can make a drastic change, no one is exempt from hardships, take advantage of every day you open your eyes to experience the gift of life.
What advice would you give someone who may be living with a chronic illness and also to someone who is close to or may have to care for someone that is living with one?
To someone living with a chronic illness my advice is to always stay positive, never let anyone say you can’t do something because of your illness, and to always remember your mental and emotional health is just as important as your physical health. To a person close to or caring for a person with a chronic illness try your best to be understanding of the situation, and be a good a listener during their times of frustration, sometimes all they may want is someone to listen to them so they don’t feel like they’re fighting the battle alone.
*I have an organization called MAPP Movement (MotivatingAndPromotingPositivity) whose mission is to support, help, and encourage my fellow warriors. So if you suffer from a chronic illness or know anyone who does that may be interested in connecting with other warriors contact firstname.lastname@example.org. Instagram @mapp_movement, www.mappmovement.com