Thrive with IBD: My latest podcast interview

Her name is Natalie. She was diagnosed with IBD at age 21. She has a blog. It may sound like I’m talking about myself, but I’m talking about a friend I’ve connected with online! Natalie Kelley (@plentyandwellwithnat) and I started following one another on Instagram several months back and came to realize how similar our patient journeys have been. Screen Shot 2019-12-28 at 1.36.32 PMShe has ulcerative colitis and I have Crohn’s. She is 24 and I’m 36. But, our lookout on life and our interest in bringing comfort and serving as a positive voice for the community is the same.

Being diagnosed at age 21 is a difficult time in life. You’re at a crossroads from being a kid to a young adult. You’re navigating the next chapter of life and looking to start your career. We relate on how IBD stopped us both in our tracks in that pivotal moment and how far we’ve both come since.

Natalie launched her podcast, Thrive with IBD, in 2017. Her hope is to end the stigma around chronic illness and show that you’re never alone in your struggles or experiences. As a wellness blogger and a holistic health coach, Natalie works tirelessly to educate others about navigating life, love, and everything in between, while living with IBD. Today (December 30th) you can check out her latest episode. She interviewed yours truly. When she asked me to be on her show, I was so honored, as I’ve admired her work from afar for a while.

We talked about what dating, marriage and being a mom is like with IBD. I am the first IBD mom she had on the show! Interestingly, Natalie’s mom was diagnosed with Crohn’s at age 16. DSC03601So not only does she have her own personal patient experience, but she’s been a part of a family unit who’s dealt with the ups and downs her whole life. It was emotional for me as an IBD mom, to hear firsthand from a 20-something about what it was like to not only grow up with a mom who has Crohn’s, but later be diagnosed with IBD herself.

Click here to check out the episode.

With nearly 40,000 Instagram followers, Natalie has quite the following. What always amazes me is how present and genuine she is. She responds to comments both publicly and privately, her content is well thought out and impactful.

“Each day I get to wake up and get to use my story to help other women with IBD. I get to connect with chronic illness warriors around the world. I get to use the pain and grief I’ve endured to help heal others’ pain and grief, even if just a little bit.”

Screen Shot 2019-12-28 at 1.37.22 PMIf you’re looking to follow someone who is sure to lift your spirits and make you feel empowered, she’s your girl. When I chatted with her on the phone, I told her how much I look up to her for her advocacy work, despite being 12 years older!

As we gear up for 2020, the start of a new decade, and a new year, it’s our hope that you focus on self-love and embrace who you are, despite your IBD. As Natalie says, “There are ebbs and flows in this journey of mine and I’ve learned to take them as they come. I’ve learned to soak up every second of the good moments and give myself grace during the hard ones. I’ve learned to stand up for myself, be my biggest advocate and put myself first.”

Natalie and I both say that if we were given the option to get rid of our IBD diagnosis that we wouldn’t. We both feel we were put on this path for a reason and that our diseases have shaped us into who we are today. I hope that if you’re reading this, and you’re newly diagnosed, knowing that brings you comfort and peace of mind. IBD is not your identity, it’s a part of you, but it’s not all of you. Natalie and I can assure you of that.

 

Why Crohn’s is the gift that keeps on giving

When you think about your IBD, chances are many thoughts race through your mind. This holiday season, I started thinking about how Crohn’s is the immaterial gift that keeps on giving. I know, it sounds crazy. But hear me out.

The unpredictability and uncertainty of IBD has forced me to live in the moment and stop worrying about tomorrow and the future. IMG_0597

The pain, setbacks, and flare ups have provided me with perspective and empathy for others that’s only possible when you live with chronic illness.

The fatigue reminds me of the importance of slowing down, not pushing myself too hard, and practicing self-care.

The ups and downs and in between have given me an innate truth serum about other people’s intentions and character and allowed me to know who I can truly count on.

The side effects of steroids and the scars left behind from my bowel resection and c-sections have humbled me.

The dark moments that tried to break me have instead showed me that God truly does give his toughest lessons to his greatest teachers.

The hatred I felt for my body through the years (especially my abdomen) disappeared the moment I became pregnant and watched my body transform to bring two healthy babies into this world. santa with the kids

The hospitalizations that have tried to break me have forced me to bounce back and be stronger physically and mentally than I was before.

The initial years of isolation when I kept my patient journey under wraps led me to go out on a limb, share my story, and feel the support both near and far from a community that’s like family.

It’s taken me nearly 15 years to think this way about my disease, about my reality. I’m not trying to sugar coat or diminish the seriousness of IBD, but instead share my mindset and how I choose to take on Crohn’s disease. Yes, some days are terrible. IMG_6855Yes, there have been times when everything felt heavy and bleak. Yes, there are still times I feel sorry for myself. But those days are far outnumbered by the joy-filled, happy days I choose to focus on.

My hope for you this holiday season is that you’re able to pause and embrace the hand of cards you’ve been dealt and think about all you’re capable of, all you’ve accomplished, and all that lies ahead. Give yourself credit for all you do today and tomorrow, all you’ve endured in the past, and all you’ll overcome in the future.

 

Diet and Nutrition: The role they play in IBD

Nutrition and IBD. Just saying those two words together makes me feel like I’m running through a rabbit hole, unsure where to turn….and I’ve lived with Crohn’s disease for more than 14 years. Everywhere you look, you see people claiming to “heal their gut” through diet alone, while sharing diet hacks that “cure” IBD, when in fact there is no cure.

Unfortunately, my first experience with a dietitian, days after my diagnosis, was not a positive one. She came into my hospital room and was very doomsday and black and white about what my future held. The conversation led me to believe I would never eat raw fruit or veggies, salads were out, and fried foods were always a no-no. I was told I could have white bread, white pasta, cooked veggies, and plain chicken from that day forward. Hearing this made grappling with the diagnosis much more difficult.

My experience is hopefully not a typical one for those in the IBD community. Dietitians can be and are key players in our overall care teams. They help guide our nutrition and lead us on a path to better health. Chances are if you or someone you love has IBD you’ve come across the laundry list of IBD-friendly diets (SCD, anti-inflammatory, paleo, etc.). If you’ve found a diet that works for you, that’s great—but it can be extremely dangerous and damaging to use your own personal experience to sway others, especially if you preach to go off all medication and focus on diet alone.

Just as IBD manifests uniquely in every person, trigger foods vary, too. UPMC_HEADSHOT_HIGHRES_ALCHOUFETE_THEREZIA_DIETITIAN_20191113This week—I interview Therezia AlChoufete, a Registered Dietitian Nutritionist (RDN) who specializes in Gastrointestinal Diseases, to set the record straight about this area of disease management. Therezia completed her Bachelor of Science in Neuroscience and her Master of Science in Nutrition and Dietetics from the University of Pittsburgh.

NH: What role does diet/nutrition play in treating IBD?

TA: “A huge role – symptom management is very helpful to improve quality of life for patients with IBD, and many patients have difficulty understanding what they should or should not eat. A Registered Dietitian Nutritionist can help to identify trigger foods and other factors that may be affecting digestion & GI symptoms, nutrition for ostomy management, modifications to diet before and after surgery, recipe modifications to improve GI tolerance, and much more depending on each patient’s medical history.”

NH: When you’re given a patient with IBD, what type of information do you share in those appointments?

TA: “I see my patients in an outpatient setting – this allows me to review the patient’s goals, assess their nutrition status, and determine an individualized plan with every patient. Information can vary depending on each patient’s unique history, goals, and food tolerance.”

NH: Each person’s body responds differently to specific foods, everyone has different triggers, how do you create a plan that is tailored to everyone, rather than saying “all people with IBD need to stay away from XX”?

TA: “There is definitely no one-diet-fits-all approach for IBD. I typically review the patient’s food history, their unique food tolerances, and provide a plan according to each person’s goals and disease status. I try my best to avoid food restriction and liberalize the diet as tolerated by each patient.” brooke-lark-08bOYnH_r_E-unsplash

NH: What are the most common questions and concerns you hear from patients?

TA: “A very common question is what food/supplements can I eat to fix my symptoms – unfortunately, there is not a simple answer. But this leaves us some room to discuss food triggers in more detail and review ways to achieve a well-balanced diet.”

NH: Why is working with a nutritionist so critical for those with IBD?

TA: “Registered Dietitian Nutritionists are food and nutrition experts. We use science-based evidence to provide recommendations that are specific to each person’s medical history. This may include review of micronutrient deficiencies, hydration status, fluid build-up (sometimes following use of steroids), medication side effects, risks of malnutrition (which can occur in all body sizes), supplement questions, and so much more. An RDN can provide individualized medical nutrition therapy to minimize GI symptoms and optimize gut health in conjunction with medical plans provided by gastroenterologists.”

NH: What type of difference do you hope to make in a person’s patient journey? 

TA: “My hope is to help patients liberalize their diet and improve their quality of life. It is very important to me to help patients realize that they have a team of professionals that can help them manage their IBD. I enjoy working with a team of clinicians to target medical, behavioral, and nutritional health concerns to optimize care for each individual.”brandless-18lr202tDKY-unsplash

NH: What advice do you have for patients who are in the middle of a flare up?

TA: “Communication with your Gastroenterologist is very important if you feel like you are having flare-like symptoms in order to receive proper treatment. Sometimes, foods that are typically tolerated during times of remission are not tolerated during a flare, and an RDN can help you determine a softer diet that is easier to digest based on your individual needs.”

NH: The term “healing the gut with food” is commonly heard within the IBD community. What’s your belief on that vs. using diet as a combination therapy with medication?

TA: “Unfortunately, diet cannot cure IBD. It can improve some symptoms, but it is so important to work with your doctor to receive proper medical treatment for the disease, follow up with a dietitian to optimize your diet, and address any behavioral health management with your therapist or psychiatrist.”

Connect with Therezia here:

Twitter: @AppetiteOfMind

Instagram: @appetite_of_mind

Additional Resources:

Crohn’s and Colitis Foundation: https://www.crohnscolitisfoundation.org/diet-and-nutrition

International Foundation for Gastrointestinal Disorders: https://www.iffgd.org/other-disorders/inflammatory-bowel-disease.html

United Ostomy Associations of America: https://www.iffgd.org/other-disorders/inflammatory-bowel-disease.html

 

 

How art helps Kate take on her Crohn’s: Tips for unleashing your inner IBD artist

When 32-year-old Kate Schwarting of New York was diagnosed with Crohn’s disease in June 2009 she was less than surprised. The symptoms that had insidiously weaved their way into her life had finally reached a point where their impact on her daily life was undeniable. A colonoscopy confirmed it. headshot_schwartingAt the time she was diagnosed, Kate was immersed in her undergraduate studies that were divided between Geoscience and Studio Art and took on the role of caregiver for her mother. This week Kate shares how art has benefited her patient journey and offers up helpful ways you can incorporate art into your life, even if all you can draw are stick figures (like me!):

While in college, I was focused on understanding my passion for science and art. I was passionate about discovering the possibility for art to express the unseen, and build an emotional bridge for relating to complex scientific problems. But all of this was set against a backdrop of Crohn’s flares, fistulas, strictures, hospitalizations (for both myself and my mother), and doctor appointments.

These constant disruptions often left me feeling like I was struggling to move towards my goals, preserving my identity when it’s so easy for illness to be all consuming, and caused me to frequently reflect and reevaluate my relationship with the art and science that I studied.

How Crohn’s brought me closer to understanding the benefits of art

As a student involved with the arts, it was common for me to have a few spare art materials. Over the course of 10 years of dealing with Crohn’s, I had several flares that resulted in extended hospitalizations, periods where I was at home recovering, or as a caregiver for a parent that made me aware of how important it was to have spare materials with me.

Being sick and in the hospital, or even stuck at home away from your daily routine, is stressful and isolating at best. Having these tools allowed me to cope, escape, and create meaning. It gave me a sense of accomplishing something positive and tangible in a setting where a significant amount of time is spent anxiously waiting for results, procedures and to feel better. IMG_5852

Not only have I noticed how much it helps me to have this diversion, I have also noticed the impact it has on those around me. In situations that are emotionally heavy with the burden of illness, a brief conversation with another patient, nurse or doctor about art seems to uplift everyone’s mood and passing along this joy had an exponentially good effect on my own outlook.

How a flare inspired meaningful artwork 

During a flare in 2016 I began to investigate how to create meaningful artwork relating to both the microbiology and to my experiences with my own body. I was drawn to the microbiome. Trillions of bacteria exist in everyone through a symbiotic relationship in the digestive system. detail1 - Kate SchwartingThe microbiome is a hot spring of unanswered questions in relation to its role in IBD, as well as many other conditions. Applying the methods I have used in other projects, I researched the different types of bacteria and their shapes and used them to create a series of abstract drawings that relate to the digestive system and allow people to develop a sense of the complexity of the human body.

5 tips for incorporating art into your life

Create a pack of art supplies. Get a small sketch book, a pouch including a woodless pencil, travel sized watercolor palette and brush, assorted pens, and a ruler. Add to this whatever materials you prefer. 

Start simple. Use mindfulness to find inspiration around you, whether it’s a color, a pattern, or texture

Be mindful of self criticism! As put best by Bob Ross, Let happy accidents happen!

Experiment! Art at its core relies on the very basic act of creating and requires no prior artistic training to get started. It is a place to abandon judgement and focus on an exclusively human experience.

Share! I found it helped hold me to my goal of setting aside time to relax and create art by making an art related post once a day or every other day depending on how I felt to Instagram and also helped me find a supportive community during times where I was feeling the most isolated. I’d love to see what you create! Feel free to use the hashtag #chronicallycreative when sharing your work!

You can follow Kate on Instagram and Twitter at: @microbioscapes.

 

What’s hope got to do with IBD? Everything!

It’s the season of gratitude, which can often be difficult to come to grips with when you’re dealing with a chronic illness like Crohn’s and ulcerative colitis. But, hope—hope is a vital part of each of our patient journeys. Hope for brighter days. Hope for feeling symptom-free. Hope for a year without a hospital visit. Hope for figuring out a way to manage our disease. Hope for a cure one day. The list goes on. This week—a guest post from a resilient mom whose son, Jake, was diagnosed with ulcerative colitis in 2014, at the age of six. image0 Sharon Pevsner of California shares how reflection, renewal, and readjustment helps her take on the unpredictability and the challenges IBD brings to her family. I’ll let her take it away…

In 2014, my 6-year-old son, Jake, had just started kindergarten and joined his 9-year-old sister at the same school. To say he was excited would be an understatement. He took to kindergarten like a fish to water. He loved school; his friends, recess and more recess. This Mom finally had one drop off and several uninterrupted hours alone!

Several months into the new school year, Jake’s teacher found him doubled over on the playground. We didn’t make much of it at home until the day I noticed blood in the toilet. The blood set off alarm bells and a run to the pediatrician whom in turn sent us to the GI. He was confident that it was a case of internal hemorrhoids and Jake would be fine after a colonoscopy. After the procedure, the doctor came out and nonchalantly said “it’s not hemorrhoids, I think he has ulcerative colitis.” I had never heard of that before and was stunned. What exactly is that? What does this mean? A quick search of Google and my head was imploding. I had more questions than answers and my heart raced. The doctor was convinced that a course of sulfazaline would put him into remission and never mentioned diet, complications or anything else. Life went on for six months like usual. Until Jake started to bleed again.

Six years later

Since diagnosis, Jake has been hospitalized six times for a total of 60-plus days. As his mom, I have learned so much about IBD, diet, medications, extra manifestations of IBD, persistence, patience, gut feeling, anger, despair, love, faith and most of all, hope. image1 (12)

We have come a long way in six years. I clearly recall one day when my son was so ill and we were in the ER of our local Children’s Hospital. He was doubled over in pain and the doctors didn’t have a diagnosis for what was wrong. Jake looked me square in the eyes and said, “Mom, don’t you know I’m just trying to stay alive.” He was eight-years-old. I felt the wind leave me and held onto everything I had. The diagnosis? C.diff.  Another piece of the IBD puzzle I knew nothing about. That hospital stay left me emotionally broken.

How do you hold onto hope when everything feels like it’s falling apart?

When I look back on our journey, several things come to mind. For me, hope and faith have gone hand in hand. I believe there are better days coming and that there is a cure on the horizon. Like faith, I believe hope comes in a variety of ways. Just as the sun rises each day, I take that as a moment to work my three R’s: reflect, renew and readjust.

Reflection: I need to see how far we have come. Each day that my son makes it to school, is a small victory. Slept through the night? Another victory. There was a period of months that our lives were thrown upside down. My son started suffering seizures two years after his IBD diagnosis. While we are not in remission today, we are far from those frenzied ER days and even if we were to encounter that again, the knowledge we have gained will keep us steady as we navigate rough waters.

Renew: You must take care of yourself in whatever means possible. This journey doesn’t just affect the sick child, it effects the entire family unit. image0 (1)Therapy, exercise, massage, friends, a night away. The reason airlines tell you to put on your own air mask before helping your child is because if you aren’t stable, your child won’t be either. I have bad days. Labs that are horrible can throw me into despair. I go back to faith. In Hebrews 11.1 “Faith is the assurance of things hoped for, the conviction of things not seen.” I allow myself a day to be sad and angry and then I rise again. My son is a warrior and I will be too.

Readjust: I have joined countless Facebook groups on IBD, epilepsy, diet and other therapies. I need to make sure that what I get out of the group meets or exceeds my expectations. Early in our journey I was in a group that gave me anxiety every time I read a new post. I realized that that particular group wasn’t for me and I exited it and found others that fit our philosophies and experiences. I have had to adjust my expectations of friends (they mean well, don’t they?) and even have had to take a step back from some friendships that don’t nurture me. My goal is to get my son into remission and give him as normal a childhood as possible. Celebrating the “moments’ that happen in a day rather than waiting for the perfect day or the perfect lab report. Adjusting your attitude to celebrate individual moments brings everything into perspective.

IBD is a marathon, not a sprint hopephoto

Hope arises in new advances that are being researched every day in the cure and treatment of IBD. Hope is in the latest clinical trial that posted that includes children. Hope is watching my son with a fecal calprotectin of 2700 hit the ball to the outfield for a double.

Hope is in the simple things. As long as I have hope, I have the ability to change tomorrow for my son and for myself. We all do. You are not alone in this journey. I wish each and every IBD family peace, love, faith, and hope on their journeys.