This post was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.
I recently attended Digestive Disease Week (DDW) in San Diego, California as a patient advocate. The experience was much more than a conference—it opened my eyes to all the work being done on a global level to understand this disease, ease the burden on patients, and improve quality of life.
At DDW, I had the opportunity to sit down with Dr. Miguel Regueiro, Chair of the Department of Gastroenterology, Hepatology, and Nutrition and Vice Chair of the Digestive Disease and Surgery Institute at Cleveland Clinic, to discuss our respective points-of-view on clinician-patient communication. I share more about our conversation below, along with a video of part of our discussion. You can also find resources to guide your conversation with your own doctor here.
There’s something special about being a Crohn’s patient and witnessing firsthand all the research, advancement and dedication for inflammatory bowel disease (IBD). While the exact cause of Crohn’s disease is unknown, it is believed to be caused by an overreaction of the immune system. As a result, damaging, chronic inflammation can occur along the GI tract and lead to symptoms. Crohn’s isn’t contagious, and, as far as we know, it isn’t caused by anything a person has done or eaten.
During my time at DDW, Dr. Regueiro and I had a chance to discuss the importance of patients and their physicians creating an ongoing, healthy dialogue about everything the patient is going through physically, mentally, emotionally, and financially.
We talked about the importance of goal setting. In this age of personalized medicine, treatment plans are tailored uniquely to each person’s needs, which often go beyond the inflammation in our bodies or our latest symptoms.
“When I meet a patient initially, I sometimes ask ‘what are three things you want out of this visit? What are the three problems that you’ve had?’ Some of it may be related to their IBD, but a lot of it might be related to ‘I’m feeling depressed,’ or issues with sexual activity and intimacy. As a physician, and as a healthcare team, we not only want to treat your IBD, we want to treat the whole person,” said Dr. Regueiro.
One of the biggest stresses associated with IBD can be the unpredictability factor and the progressive nature of the disease. As patients, we never know what the next hour or the next day will bring. Symptoms might worsen or change altogether. Physicians want to hear about changes. Changes in our symptoms. Changes in something that may be related to our medication. And changes in our health beyond our digestive tracts that help our care teams treat us and not just our IBD. By recognizing these changes, your doctor can address them and make sure there’s not a bigger problem festering.
Crohn’s is a lifelong disease, it’s not just about thinking about tomorrow or the next few weeks, it’s really looking at the long-term. If you live with IBD, it’s important to be open about all your symptoms and meet routinely with your doctor to ensure active monitoring of your disease, regardless of symptom severity. Create a proactive treatment plan and set goals that are right for you.
The narrative you choose to share with your care team can truly shape the type of care you receive and your ability to improve your quality of life. Prepare for your next trip to the doctor by visiting CrohnsandColitis.com for tips on managing your appointments and working closely with your gastroenterologist.
Disclosure: This post was sponsored by AbbVie Inc., a biopharmaceutical company, and should not be construed to constitute medical advice. Personal opinions and thoughts are my own. I am not a medical professional and am not qualified to give medical advice. Please talk with your doctor about your individual medical situation.
While attending IBD Social Circle at Digestive Disease Week in San Diego, I listened to a panel with Dr. Neilanjan Nandi, MD, FACP and Dr. Aline Charabaty, MD about the patient and health care practitioner dynamic.
Switching physicians and entrusting someone new with your well-being is not easy. Trust your gut (for once!) and advocate for care that makes you feel like you have a voice. Think about how you feel leading up to an appointment, while you’re face to face with the physician and the emotions you may experience on that drive home. If anything makes you feel less than or not heard, connect with fellow patients in your area to see who makes up their care team. Do research about IBD specialists within drivable distance and take the steps you need to feel like you have your best ally against this disease.
Over the next month, I’ll be partnering with IBD Healthline. I am so excited to share my journey using the app and explain how you too can benefit from all its invaluable features.
I don’t know about you, but the more people I know with IBD, the stronger it makes me feel as I take on the disease.
and podcasts shared each week on everything from diagnosis to nutrition and self-care tips. The more educated we are about our illness, the better advocates we can be for our care.
To the person nervous to open up in a relationship and disclose they have this disease…
To the person worried about passing this dreadful disease onto their children…
Now, nearly 14 years later—her and I have come a LONG way. She’s on Remicade. I’m on Humira. We are both mothers. We are both wives. Alisa didn’t allow her disease to stop her from following her personal or professional dreams. In 2013, she left corporate America and founded 
I multi-task everything, stay on top of my biologic infusions, rest when possible and, plan my diet loosely around a mix of SCD and low gluten eating. Getting help is difficult, but I feel lucky to have a supportive husband and local family network. My travel schedule wears me down– but thankfully most of my disease symptoms are well controlled.
Babywearing helps me effectively multi-task and meet my all children’s needs at the same time. It also helps address postpartum depression, by syncing mother and baby, and raising oxytocin levels. I believe babywearing is a necessity that should be taught to every single expecting parent and caregiver!
As a bonus, a variety of baby carriers can be adjusted to accommodate an ostomy or j-pouch.
As a mom of a 2-year-old and an almost 4 month old, I’m in the thick of motherhood right now. While it’s an amazing season of life, it definitely has its challenges. A toddler, a baby, and a chronic illness. Ah, I’m exhausted just reading that myself! While it’s far from easy—I’ve found some ways to help embrace the ups and downs and everything in between.
No one wants to be hospitalized or deal with pain. Give yourself the best chance for having feel good days and make your disease management a priority. If you feel symptoms presenting and you’re concerned, alert your GI immediately. Be proactive, nip each flare in the bud as best you can.
Yes, I know. Self care. We hear it all the time. It’s something that’s constantly talked about, that seems unattainable. But try and do something each day for yourself, whether it’s taking a shower, eating a meal sitting down, going for a walk outdoors with your little one and keeping your phone on silent, reading a book before bed, you name it. Try and find the moments in your day when you can unplug and relax. Practice yoga and meditate during nap time instead of doing the dishes or laundry. You owe it to yourself!
You were given this role and this family because you were meant to have it and you were destined to live this life.
Find the people who lift you up. Trust in the bonds you create with those who are there for you because they want to be out of the goodness in their heart, not as an obligation. Hold on closely to the relationships that spark joy and don’t extinguish your flame. Lean on those who are willing to give you their hand to lift you up, even when you don’t ask for it.
Meet Emily. This past February she received her chronic illness diagnosis. Even though she’s brand new to IBD life, she’s taking all the pain and all the setbacks in stride.
Her mom was able to reach out to fellow parents on Facebook about a pen pal program.
From a parenting perspective, the pen pal group has introduced Michelle to other mamas going through the same fears and experiences. The connections have brought her peace of mind as she navigates these new waters with her daughter.
making new friends? Friends who understand and continually cheer you on, no matter how far they are. My hope is that Emily will make life long connections and that these letters will serve as a constant reminder that she is never alone.”
studies suggest it may start with a bacterial imbalance in the gut, and several studies have shown that people with IBD were less likely to have been breastfed as infants. Furthermore, a study in Denmark showed that breastfed babies developed certain types of healthy bacteria in their digestive tract, which non-breastfed babies were lacking. A healthy amount of beneficial gut bacteria can promote a healthy immune system which fends off different diseases.
It wasn’t easy, but I’m so glad I stuck with it. We lasted 16-months until he self-weaned and he has a very healthy immune system so far, despite the cesarean and me being on Humira. Best of all? I didn’t have a postpartum flare, which my doctor attributed to the combination of staying on my medications, following my diet plan and breastfeeding.
as possible, especially in the first 24 hours, and provide plenty of skin-to-skin. After a c-section, the last thing I wanted to do was constantly get in and out of bed to pick up a newborn. Instead, I just spent my days with my son nestled on my chest so we could both sleep, heal, bond and get my milk flowing.
Cut yourself some slack. Becoming a mother is stressful, but if you are feeling overwhelmed, talk to someone. Postpartum depression and anxiety are very real and as a mother with chronic illness, you may be more prone to those feelings. Seek out help from your spouse/partner, enlist nearby family/friends for support, and keep in close contact with your doctor to manage your symptoms.
When you’re in the thick of a flare and when feel good days feel far from ever being a possibility, try and remember how fleeting these moments are.
today he’s a rumbustious, adorable, little ball of energy. Sure, we age, too—but we also mature mentally when it comes to our illness. What felt like the biggest obstacle and scare of our life, evolves into something that is a part of who we are, an identity that while not ideal, helps to define us.
But I can promise you, that as life goes on and as the years since that moment of diagnosis get further and further in the rear view mirror, you will find a comfort in this identity.
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