My five year old has Crohn’s and was tested for COVID-19: A Mother’s story

Imagine your 14-month-old baby being diagnosed with Crohn’s disease. That was the reality for Anna and Jon Richt of Georgia. Fast forward a few years and their daughter, Jadyn, is now five years old and thriving with IBD. This past week though, the Richt family had quite a scare. E06A1215Jadyn woke up with a fever and a slight cough. Given the craziness of the times we live in right now, they immediately called the COVID-19 hotline. Once the person on the other line heard about Jadyn’s health history and the fact she is immunocompromised, they agreed, Jadyn needed to be seen. In urgent care, Jadyn was tested for the flu, strep throat, and COVID-19. The Richt’s were told they would have a test result in five days, it’s been more than a week now, and still no result.

Prior to all the discussion on social distancing and sheltering in place, Anna and Joe had traveled domestically. Family members who had been staying in their home had recently traveled internationally. Anna says, “The strep test came back positive, which gave us a sense of relief. But it didn’t cancel the possibility of COVID-19. We have been watching her closely, ready to sound the alarm at any sign of health deterioration. Thankfully, she is feeling much better and I believe she is bouncing back to her normal self.”

What’s it like to raise a daughter with IBD from such a young age? Jadyn has a G-tube, and Anna is passionate about spreading awareness about feeding tubes to educate others. E06A1193I’ll allow Anna to take you back to the beginning, so you can have a better grasp of their ongoing journey and how it’s brought them to where they are today.

Seeing blood when my baby was six months old

I started seeing blood in Jadyn’s stool when she was around six weeks old and immediately called her pediatrician. He chalked it up to a couple of things, mostly related to breastfeeding issues and didn’t seem too concerned. When she was eight months old, my husband’s job moved us far away from family and her symptoms worsened. Her new pediatrician was concerned about her weight loss and sent us to the hospital for further testing.

A colonoscopy showed lesions all throughout her GI tract. Crohn’s disease was mentioned but the gastroenterologist was hesitant to diagnose it because of Jadyn’s young age. I did exactly what they say not to do and Googled Crohn’s Disease. The symptoms were spot on: “Bloody stools, persistent diarrhea, vomiting, loss of appetite, weight loss.” I’m not sure I’ve ever told anyone this, but deep down, I knew.

Dealing with the diagnosis

The diagnosis eventually came when Jadyn was 14 months old. fullsizeoutput_38f9The first couple years were nothing short of a dog fight. I remember sitting in my sister’s living room after an appointment when all of the sudden the doctor’s number popped up on my phone. She was calling to say that Jadyn’s lab results didn’t look good and we needed to head to the hospital right away.

My sister and I sat there in disbelief and cried. I remember her saying through her tears, “I feel like you are under attack.” We were. But we fought back. There have been countless doctors’ appointments, feeding tubes, eating therapies, procedures, you name it. She has been a trooper through it all and I am so happy to report that her current medication is working. Thankfully, she is a normal 5-year-old for the most part, which I don’t take for granted.

What has the journey been like for me as her mother?

It’s by far the hardest thing I’ve ever faced in my life. At the beginning I assumed it was something we could easily get under control and move on. I now know it is a marathon race, not a sprint. Watching my child suffer, and not being able to fix the problem despite my best effort made me feel like I was failing her. IMG_6044

It’s been lonely at times. Don’t get me wrong, we have the most amazing family and friends. They have supported us unconditionally every step of the way. But because she was diagnosed so young, we’ve never met another child her age with Crohn’s. I couldn’t call one of my mom friends and ask, “What anti-TNF drug worked for your child?” or “How are you potty training your two-year-old who is flaring?” Instead, we’ve pioneered this head-on, and I’ve completely relied on my faith to get me through. People often say how strong I am, but honestly, I believe it’s God’s strength in me that they see. When I look back on these past five years, I know without a doubt He has carried us. I can honestly say I am proud of the mother I have become due to this disease. I am brave and empathetic. I’ve developed grit and survive on grace.

What I want to say to parents of children with IBD

Take care of yourself. I always think of the airplane safety guide. Secure your oxygen mask before helping others. You cannot fully care for your child if you don’t take care of yourself first. Some days that may mean a 30-minute workout and drinking plenty of water. Other days it’s meeting with a counselor to address the emotional toll the disease has taken.

Let others help. They really want to. Use that time to step away and catch your breath.

See your child for who they are. Your child is more than their disease. They are uniquely designed for a specific purpose.

You can do this. I firmly believe that you were handpicked by God to be your child’s mother.  Continue to advocate and cheer them on. Take it one day at a time.

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Jadyn and her little sister

“And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6

You can follow Anna by checking out her blog: Grit to Grace

Anna’s Instagram: @grit.to.grace

Real talk from an immune compromised 30-something during the COVID-19 pandemic

You can think of this as a Public Service Announcement for the immune compromised. Like many of my peers in the chronic illness community, I may appear healthy on the exterior, but the biologic medication I depend on to manage my Crohn’s disease, knocks out my immune system. In my family alone, so many face the same reality:

-my 30-year-old cousin whose had two heart transplants and a kidney transplant

-my cousin’s 2.5-year-old son battling Leukemia

-my cousin’s wife who has Crohn’s and is on Remicade

-my cousin who lives with Ehlers-Danlos Syndrome among other chronic conditions

I’ve been part of the immune-compromised population since I was 24 years old. Over the past 12 years, never did I dream of the reality we’re currently living in. When I first heard about Coronavirus, I wasn’t all that alarmed. As the conversations and situation continues to become more serious, I’m getting more anxious and concerned.

Here are the latest recommendations shared by The Lancet as this relates to the IBD population. I found these guidelines helpful in drowning out the noise of all the information being thrown our way.

Potential risk factors for infection

  • Patients with IBD on immunosuppressive agents
  • Patients with active IBD and malnutrition
  • Elderly people with IBD
  • IBD patients who frequent medical clinics
  • IBD patients with underlying health conditions, such as hypertension and diabetes
  • Patients with IBD who are pregnant

Medication for patients with IBD

  • Continue current treatment if your disease is stable, and contact your doctor for suitable medicine if you’re flaring.
  • Use mesalamine as prescribed, this should not increase the risk of infection.
  • Corticosteroid use can be continued, but be cautious of side effects.
  • A new prescription of immunosuppressant or an increase in dosage is not recommended in epidemic areas.
  • Use of biologics, such as the anti-TNF’s infliximab (Remicade) and adalimumab (Humira) should be continued.
  • If Remicade infusion is not accessible, switching to a Humira injection is encouraged.
  • Vedolizumab (ENTYVIO) can be continued due to the specificity of the drug for the intestine.
  • Ustenkinumab (Stelara) can be continued, but starting this requires infusion center visits and is not encouraged.
  • Enteral nutrition might be used if biologics are not accessible.
  • Tofacitinib (Xeljanz) should not be newly prescribed unless there are no other alternatives.

Surgery and endoscopy

  • Postpone elective surgery and endoscopy. (I’ve heard of many  centers and hospitals delaying until June at this point.)
  • Screening for COVID-19 (completed blood count, IgM or IgG, nucleic acid detection, and chest CT needed before emergency surgery.

Patients with IBD and fever

  • Contact your GI about visiting an outpatient clinic. Consult with your physician about possibly suspending the use of immunosuppressant and biologic agents and follow appropriate guidance if COVID-19 can’t be ruled out.

While the unknown is scary—as a chronic illness community we need to recognize how well-equipped we are mentally and emotionally to live life during these uncertain and uneasy times. According to the National Health Council, 133 million Americans live with incurable or chronic diseases, many of which are treated with medications that make us susceptible to illness.

It can be unnerving to see peers downplay the severity of the situation and making light of the fact they have nothing to worry about. If you have a friend or family member who’s immune compromised or a loved one over age 60, you have reason to be empathetic. Chances are you know many people who fall in these categories. Going against the recommendation and living your life like nothing is going on right now, puts people like me and so many others in jeopardy. It’s irresponsible and says a great deal about your character. CCFA social distance

To those of us in the high-risk category, this quarantining and social distancing is more than an inconvenience or a change in our plans. We know that if we happen to come down with COVID-19, our bodies may not be able to fight it.

The healthy are getting a glimpse into what it feels like to live with a disease that can blindside you and flip your world upside down at any moment. After years of juggling all the variables and the what-ifs, we know how to protect ourselves. We know living in fear takes away from our joy. Thanksgiving2019

Rather than feel like we’re less than, we can continue to choose to see the beauty of what is right in front of us within our homes, with those who matter most.

Rather than feel like we’re goners, we can follow our care team’s recommendations, pay attention to facts over fake news, and stay on our medication. It’s believed the threat of untreated IBD is a bigger concern right now, and if you flare and need steroids, your immune system will take even more of a hit. If you are flaring and have a fever, physicians are now ruling COVID-19 out first.

Rather than waiting for the worst, we can be proactive and use the tools in our arsenal to stay as healthy as possible and use trusted resources to guide our decision making. Wash your hands even more than you’re used to, spend time outside in your yard, never share food or drink, change your clothes if you’ve left the house.

Rather than glue ourselves to the TV or scroll through our phones, we can take time for ourselves and make a point to make self-care a priority. Put your phone in another room, turn up the tunes and have a dance party with your kids. You’ll be amazed at what a stress reliever that is! Read a good book. Organize your closet. Try out a new recipe or bake something yummy.

Rather than cower in the corner, we can continue to advocate and be a voice for the voiceless in our community to educate and inform the rest of the population about what it means to be immune compromised by connecting over social media, Facetime, Marco Polo, emailing and texting.

Here are some helpful resources to check out:

Crohn’s and Colitis Foundation

Coronavirus and IBD Reporting Registry

International Organization for the Study of Inflammatory Bowel Disease

Coronavirus Resource and Planning for IBD Patients (Blog written by IBD advocate Jessica Caron)

Coronavirus Resources for People with IBD (Blog/Podcast created by IBD Advocate Amber Tresca)

USA Today article: The best thing everyday Americans can do to fight coronavirus? #StayHome, save lives

From remission to flaring in one week: What 2015 taught me about life with Crohn’s

I woke up from my colonoscopy five years ago and was told “You’re in remission”. Tears of happiness streamed down my cheeks. I was in disbelief. Was I dreaming?! It took a decade for me to hear those words, and one week to be robbed of the title.

One week later, I was hospitalized with a small bowel obstruction. The first of three that would happen that next year. So many of us in the chronic illness and IBD community specifically, are constantly chasing after “remission”. But what does remission really mean?

Remission is different for every person, much like IBD manifests differently in everybody. When I heard the word remission five years ago, it felt magical and exciting.

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Celebratory post-colonoscopy cheesecake after finding out I was in remission Feb. 2015.

Hell, my mom and boyfriend (now husband) and I went out and celebrated with a big meal at The Cheesecake Factory. When I flared days later, I started feeling skeptical of the term and came to realize how fleeting and elusive remission can be. I laid in the hospital bed, devastated and dumbfounded by what had just transpired.

It took three bowel obstruction and 18 inches of my small intestine to ultimately be removed in August 2015, for me to reach surgical remission. While surgery is not a cure, my bowel resection provided me with a new beginning. As I approach my five year “remission” anniversary this August,

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Hospitalized a week later with a bowel obstruction.

I remain on edge. I’ve been blessed to be on cruise control with my illness these past few years. My GI has me well-managed on my biologic and vitamins, I know how to read my body when it speaks to me through symptoms, and when I suspect something is going awry, my care team and I nip the disease activity in the bud.

To me, remission is waking up each morning with the expectation that I’m going to feel well and be able to take on the day as planned. Remission is having more ‘feel good’ days than painful ones. Remission is being confident to attend social outings, travel, and do all the things I set my heart out to do, without feeling suffocated by the fear of the ‘what ifs” of a flare. Remission is being able to focus on the part of me that is so much more than my disease. remission blog

Remission tends to the be the “goal” when it comes to IBD, but it’s not always feasible. It’s easy to see posts on social media and feel like you’re failing because your body is failing you, repeatedly. It took me a decade of living with Crohn’s and surgery to be in remission.

While I’m a compliant patient, I don’t take much credit for my remission. I know how at the drop of a hat I could be rushing to the ER, unable to breathe from my abdominal pain. I remember all the flares that blindsided me and I know my body can decide to flip the switch at any given moment. I feel lucky most the time—while my Crohn’s could be worse, it could be better, too. Remission doesn’t mean that symptoms are non-existent, moreso that the majority of the time I feel well with some not so great days sprinkled in the mix. While in this state of remission, I remind myself not to take this time for granted, not to become complacent, and to stay vigilant on managing my symptoms and overall well-being.

Rather than focusing on the big “R” word that’s loaded beyond belief and placing so much emphasis on it, let’s focus on feeling the best we can each day, communicating openly with our physicians, friends, and family, and taking this uphill battle one step and one day at a time.

From IVF to surrogacy: This IBD mom’s resilient journey

IBD and surrogacy. Those are loaded words. Both evoke emotions and opinions for unique reasons. For Jessie Magaro, 34 of Atlanta, the decision came after the unfathomable struggles she had with her Crohn’s during pregnancy and after. To provide you with the backstory, Jessie was diagnosed with Crohn’s and endometriosis when she was 15. She underwent an elective surgery her senior year of high school for her Crohn’s that put her into surgical remission for 15 years. IMG_7818

Jessie got married in 2016. While she was loving every second of newlywed life, she started feeling endometriosis pains. Less than a year after tying the knot, her doctor discovered her fallopian tubes were blocked. It was unclear if the blockage was due solely to endometriosis, or if it was a result of scar tissue from her bowel resection. Either way, IVF seemed to be the only option to get pregnant, and her fallopian tubes would need to be removed for that to be successful. In November 2017, Jessie underwent the surgery. When she woke up, she thought she would be stripped of the ability to conceive a baby naturally. But, her surgeon told her they were able to save and repair one of her tubes.

Jessie ended up getting pregnant right away, but unfortunately had an ectopic pregnancy that ended up severely rupturing her fallopian tube. During emergency surgery to remove the remaining tube, it was determined her endometriosis was severe and IVF needed to happen sooner than later. I had the chance to interview Jessie about her harrowing experience to bring a baby into this world, while living with IBD and endometriosis. IMG_7820

NH: How did IVF impact your IBD?

JM: “The moment we started IVF, I felt a shift in my body. A storm was brewing, and I could feel it. My completely dormant Crohn’s appeared to be waking up, but I didn’t want to believe it. I battled through the IVF process while experiencing my first flare in a decade in a half. The Reproductive Endocrinologist and GI were miffed. No one could say if this was an isolated reaction to the hormones, or if I was truly experiencing an active flare. After a lot of back and forth, and hard conversations with medical professionals and our families, we decided to proceed with implanting an embryo. The thought process was that most women tend to do better in pregnancy with Crohn’s, if they had been in remission prior. The hope was that this “flare” was an isolated incident from the IVF drugs/hormones, and that everything would calm down once I was pregnant. It was a risk, but one we decided we were willing to take. After a short round of prednisone, the flare subsided, and we proceeded with the transfer.”

NH: You now have a beautiful, healthy 13-month-old daughter to show for it. What was your pregnancy like?

JM: “My pregnancy was a terrifying whirlwind of trying to manage an awful flare while keeping the baby safe. IMG_7821I developed a new manifestation of the disease I never had before: Perianal Crohn’s. Not a pleasant situation and one that is very difficult to treat/manage while pregnant. Things got so bad at one point, I had to have surgery to drain an abscess and place a seton to help a fistula heal. No one wants to have surgery pregnant. It was one of the scariest moments of my life. The first trimester was spent hoping and praying the baby would make it with all the turmoil going on in my abdomen. The second trimester was spent hoping and praying we could keep her in there long enough to be viable outside of the womb. The third trimester was spent in an unbearable amount of pain fighting the urge to take the prescribed pain pills and being so scared about how the increased biologics, steroids and other new drugs being introduced into my system might affect her.”

NH: You must have been going through so many emotional struggles at this time, on top of all the physical.

JM: “The level of anguish and guilt I felt was unimaginable. I already felt like I was failing at my motherly duty to protect her and keep her safe. By 32 weeks it was clear I was rapidly deteriorating, and we had exhausted all treatment possibilities deemed “safe” while pregnant. I desperately needed more aggressive treatment, and that couldn’t happen until she was out. IMG_7823With the newly manifested, aggressive, perianal disease, a vaginal birth was out of the question. I held on until 36 weeks and on New Year’s Eve of 2018 we welcomed our baby girl. We were so incredibly relieved she was ok, and the focus quickly shifted to how not ok mom was.”

NH: As a fellow IBD mom, we all know how challenging the postpartum time is, along with chronic illness. How did you navigate that?

JM: “The first five months of her life were spent in and out of the hospital non-stop. At one point we were traveling down to the Mayo Clinic in Jacksonville for weeks at a time (without her) for testing and treatment. Leaving her the first few months was by far the hardest, most gut-wrenching thing I’ve ever experienced. I would sit in the hotel bathtub staring at the IV in my arm sobbing. The physical and emotional pain was unbearable. I remember agonizing over the decision to start the new meds, or continue breastfeeding her, and the doctor saying to me “you NEED these meds, Jessie. You HAVE to get better. She needs you to get better more than she needs you to breastfeed her right now …” cue the waterfall of tears again.”

NH: You started to turn the corner when your daughter was six months old. Tell us about that.

JM: “The pain had begun to subside enough for me to take care of her without help, I could finally leave the house and I was starting to feel a little more like myself again. I was, and still am a year later, in an active flare, but we’re making progress. IMG_7824After talking  to many medical professionals, we decided it was not safe for me to carry another child. We still don’t know if it was the IVF drugs/hormones that caused the flare going into pregnancy, or if hormones in general and my Crohn’s disease just don’t mix, but we’re not willing to put myself, or another baby at risk like that again.”

NH: I can only imagine what a difficult and complicated decision this has been for you and your husband.

JM: “This was not a decision that was made easily or lightly. As we go through the motions of finding a surrogate to carry baby number two, my days are filled with a roller coaster of emotions. We know we want another child, but at what price? I can’t take care of my family if I am unwell. If carrying another child myself leads me to be unwell again … is it worth it? Or, do I trust someone else, a safer vessel, to carry a precious sibling for our daughter. We’ve chosen to pursue a safer vessel. I am so unbelievably grateful that surrogacy is an option for us and will allow us to continue growing our family while keeping me safe.”

This story is not meant to scare anyone with IBD who is looking to start a family. Make sure you are in complete, clinical remission before you conceive, and know it is completely possible to have a happy, healthy pregnancy with IBD.

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

 

 

Loved one or friend have IBD? Read this before the holidays

The holiday season is upon us and with that comes family gatherings, social outings, and more food than anyone can handle. As someone who was diagnosed with Crohn’s disease more than 14 years ago, the holidays can still be complicated and stressful at times.

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Christmas 2013 with my family

If you’re reading this—and you have a family member or a friend with IBD, you’re in the right place. Chances are you may struggle with how to be supportive, knowing what to say, and how to navigate IBD. I’m here to help so that this truly can be the best time of the year, for everyone involved.

Here are my top 10 tips for making that possible:

  1. Start the conversation. Stop making IBD the elephant in the room. It can be more hurtful if you only see family or friends a couple times a year and if no one asks how you are feeling. Three words—is all it takes— “How’s your Crohn’s?” Ask questions and genuinely listen to our answers. Your empathy means more than you know. This puts the onus on the person with IBD, and allows us to disclose what we’re comfortable sharing, while knowing that you care. When people don’t ask, it seems as if they don’t care. I find this to be especially true as a patient advocate and blogger. So much of my presence and identity is talking about my life with Crohn’s, that when people don’t ask, it hurts more now than it used to. With the growing online social media discussion, I’m sure many people in our community can relate to this.
  1. Leave the neighborhood watch party for criminals in the streets. Chances are Aunt Joan came across a diet “cure” for Crohn’s while perusing through Facebook last month. Insert eye roll. Don’t question the food we put on our plates or ask if that’s going to “hurt our stomachs”. element5-digital-XQ5QWR8eZ5I-unsplashWe know our bodies, we know our triggers, and we are the ones who are ultimately going to have to pay if symptoms arise. Comments like “Oh, I didn’t think you could eat that?” or “Isn’t that going to land you in the bathroom?” are completely unnecessary. Focus on passing that side dish of mashed potatoes rather than giving us the side eye at the dinner table.
  1. Be flexible. The unpredictability of IBD—whether it’s feeling too fatigued to shower, lying in pain on the couch or holed up in a bathroom when you’re supposed to be getting ready or making a side dish, can cause us to be late for social gatherings. If a family member is tardy to the party or needs to leave earlier than expected, please don’t give them grief. Chances are they had to muster up a great deal of strength to get out of bed, get dressed, and put on their happy face, even if they are struggling on the inside. Practice grace and patience and remember how easy it is for us to mask pain with a smile.
  1. Don’t be offended if we bring our own food or don’t eat much. Oftentimes if we’re symptomatic or in the middle of a flare we are nauseous and eating feels too risky. It’s nothing against the way you make the family favorites. Trust we would eat everything if we could. kelsey-chance-ZrhtQyGFG6s-unsplashBringing “safe” foods or eating ahead of time at home provides comfort and allows us to enjoy more of the party. Please don’t take offense if we eat very little, or nothing at all.
  1. Please don’t make us feel like a spectacle. Chances are while at a social gathering, we’re going to need to break away to use the bathroom. If we need to go upstairs to use your bathroom, please don’t be offended or draw attention to us when we leave the table or return. We’re not trying to be rude; we’re already embarrassed and don’t want to deal with the anxiety of hogging the bathroom or smelling up the house as people socialize.
  1. We have doctors. Thanks to social media and Google, many seem to think they have the background of a MD. Please don’t try and teach us about a way we can “heal with food” that worked for your neighbor. Please don’t downplay or compare IBD to a stomach bug your toddler had. mona-masoumi-6dgpbvuAEpA-unsplashPlease trust we know the side effects of the medications we are on; we know the risks of the surgery we may have to get; we know it all. Please don’t tell us to start taking a supplement you found online. Yes, we’ve heard of: CBD oil, turmeric, probiotics, the list goes on. Please don’t question the safety of our biologic. Our disease is our reality. Unless you live it, it’s not yours.
  1. While IBD is invisible, oftentimes it’s not. If a loved one is on steroids, trust me they are incredibly self-conscious about their appearance. The temporary chipmunk cheeks (are not cute), the acne that makes you feel like a teenager (is nothing to kid about), the sudden influx in weight (is nothing to comment on). The same goes for someone who looks like they’ve dropped a lot of weight. When you have IBD, weight fluctuations happen all the time. It’s not a good thing. It’s because we’re malabsorbing nutrients or in the thick of a flare. If you notice these outward differences in us, please keep the thoughts to yourself unless you know we are purposefully trying to lose or gain weight. Don’t pressure us to be in photos if we seem hesitant. Know that we are aware of the changes and struggle with them daily.
  1. Don’t push the booze. brooke-lark-HjWzkqW1dgI-unsplashJust as with food, everyone with IBD responds differently to alcohol. We understand a glass of wine here or a beer there at a celebration may not seem like a big deal, but one drink can be enough to cause us extreme abdominal pain. Feel free to ask us, but if we decline the offer please don’t pester us, ask us if we’re pregnant, or try and make us succumb to peer pressure. We’d much rather be sober and present at the party without pain.
  1. Use us as a resource. Have a family member, friend, or co-worker of yours recently diagnosed with IBD? Let us know! Use us as a sounding board. I always love having the opportunity to use my patient journey and experience to bring hope and inspiration to others. Connect us with people in your life who we can support and help. The IBD family is incredibly welcoming and uplifting. By sharing this mutual connection, you can possibly change someone’s patient journey for the better.
  1. You play an integral role in our overall well-being. You bring us normalcy. You have the ability to distract us from our isolating illness.
    famparty3

    With my (now) husband, New Years Day 2014. I was very sick at this family party. You would never know it by looking at this photo.

    If someone close to you has IBD and they aren’t opening up or wanting to talk about it, don’t push them. We all handle the disease differently, and chances are in time, when the moments right, they will take down their walls. In the meantime, make it known you are present and there to offer support and encouragement every step of the way—and leave it at that. The simple act of knowing who we can count on and trust makes all the difference. Thank you for walking alongside us on this unpredictable and challenging journey and for seeing us as so much more than our disease. For that we are eternally thankful.

Iron Deficient Anemia: What IBD patients need to look out for

I’ll never forget what it felt like to faint on the teacher’s desk in front of the entire class in fourth grade. As you can imagine, it was quite the spectacle. From a young age, I dealt with dizzy fainting spells. If I was outside at a carnival or festival and it was too hot, I would black out. To this day, if my showers are too hot and I haven’t eaten, my vision can go blurry and a loud “shhhh” sound blasts in my ears. I always have to be extra careful not to stand up abruptly. I was the girl in high school who carried glucose tabs when I got too weak.

Little did the doctors and I know in fourth grade that down the road when I turned 21 I would be diagnosed with Crohn’s disease. To this day I wonder if my anemia from a young age was a sign of what was to come. Upon my diagnosis, my hemoglobin plummeted to seven. To give you an idea, most people can’t function and are in dire need of a blood transfusion at that point. The general rule of thumb when it comes to hemoglobin is 13 and above for men and 12 and above for women. IBD patients fall into the same expectation as “normal” people when it comes to these ranges. For as long as I can remember, I’ve celebrated being in the double digits—a 10 is often hard for me to come by.

For those who don’t know what anemia is, it’s marked by a deficiency of red blood cells which means you have less blood to carry oxygen to the rest of your body. When you have a low hemoglobin you often feel extreme fatigue, weakness, experience chest pain or shortness of breath, have a fast heartbeat, headache, dizziness and lightheadedness. FullSizeRenderFor many of us in the IBD community, we deal with what is called Iron Deficient Anemia or IDA. With Crohn’s and ulcerative colitis, long-term irritation and inflammation in our intestines can interfere with our body’s ability to use and absorb iron properly. IDA is considered an extraintestinal manifestation of IBD.

I’ve teetered back and forth with IDA for as long as I can remember. And the same can be said for much of our community. According to the Crohn’s and Colitis Foundation, 1 in 3 people with Crohn’s disease or ulcerative colitis has anemia.

Causes for IDA:

  • Low iron
    • Inflammation in your intestines can interfere with your body’s ability to use or absorb iron.
    • Blood loss from intestinal bleeding—oftentimes you can be bleeding in your stool, and not be able to see it.
    • Poor absorption of vitamins and minerals, like vitamin B12 or folic acid.
    • Medication

Treatments for boosting your hemoglobin and Iron Levels:

  • Iron supplements—I’ve taken oral iron for years. I currently take a prescription prenatal vitamin with iron, calcium, folic acid and vitamin D, daily.
  • IV iron for those with active IBD, or for those who cannot tolerate oral iron.
  • Get your IBD under control with the right medication
  • Blood transfusions in severe cases.

It’s important you communicate how you are feeling with your gastroenterologist, so they know if you are struggling. All it takes is a simple blood test ordered by your doctor. The test would need to include a typical CBC along with an iron panel.

I recently traveled to Houston and participated in a videotaped round-table discussion on this topic with two physicians and a nurse practitioner. 281628.04.pngI provided the patient perspective. It was a great opportunity, but also taught me a lot about the prevalence of IDA with the IBD community, and the importance about being proactive and getting yourself the boost you need so you can feel your best each day. As a mom of two little ones, my anemia along with my Crohn’s can be a heavy burden to bear. That’s why I do my best to stay on top of managing my illness and taking all the supplements necessary to try and combat my malabsorption problems. I hope this article inspires you to do the same and realize you are never alone in your struggles.

A close-knit family: The story behind this Crohn’s blanket

There’s nothing quite like a grandmother’s love. They have a way of bringing comfort, peace, support, faith, and love to family, among many other incredible traits. IMG-2601When seven-year-old Penny was diagnosed with Crohn’s in January 2017, her grandmother, Mary, started knitting her a purple blanket. She chose the color purple because it’s not only Penny’s favorite color, but also the color that represents Inflammatory Bowel Disease (IBD).

“Penny has always had a special little gauze blanket, but I wanted to make something for her that would hopefully comfort her on days when she does not feel well,” said Mary Otto. “It’s the same idea as prayer shawl people make for those who are ill. As I knit, I pray for Penny.”

Other times, Mary says she prays for her family, for others battling Crohn’s, for those with other illnesses and diseases, and for people in general. As of now, the blanket is 44” wide and 42” long. Mary jokes she isn’t a consistent knitter and that she has a long way to go before the blanket is “adult size”. Penny currently stands 3’9”. IMG-2600

The passion project has been a special hobby between Penny and Mary. It’s Mary’s hope that in the future Penny will look back fondly on the memories and that each time she is snuggled up under the blanket she feels not only its warmth, but the warmth of her love now and always.

“I hope when Penny isn’t feeling well or in the hospital that she will find physical comfort in it (due to its weight), but also emotional and spiritual comfort because of the love and prayers that were part of its creation,” said Mary.

Every time Penny sees the blanket, her face lights up and she asks when it will be done. It’s a labor of love for Mary, every stitch made with purpose. As a grandparent, she says it’s heartbreaking to see a grandchild take on a disease like Crohn’s.

“No one wants to see their loved one suffer. I don’t like the helpless feeling when there is nothing I can do to make the situation better. I worry about Penny. I’m also concerned about her parents and brothers, because an illness like this affects the whole family.”

IMG-2918At the same time, Mary says she’s impressed by Penny and how she is taking all the baggage that comes with Crohn’s in stride at such a young age: the daily medications, the infusions, the lifestyle changes.

“Penny demonstrates so much strength, she is my little hero!” A hero who will one day hold on tightly to that blanket and not only feel the love it exudes but be reminded that she’s never alone in her struggle.

While Penny was dealt a difficult hand of cards when it comes to her health, there’s no denying she hit the jackpot when it comes to her family.

Flaring during pregnancy and after: Addy’s story and advice for IBD moms

Flare ups during pregnancy and after, starting a biologic while breastfeeding, and wondering whether one baby is enough—all experiences and concerns that have weighed heavily on 30-year-old Addy Irvine of Minneapolis. Addy was diagnosed with ulcerative colitis in May 2015. Addy and William 1 yearAddy’s son, William, is now 13 months old. This week—she shares a guest post about her journey to bring him into this world and the challenges and victories she’s experienced as a new mom with IBD. I’ll let her take it away.

Children were always a part of my plan. My husband and I knew we wanted to have children and were ready to start trying after I completed my Master’s degree. While my colitis had not been officially determined to be in remission, I was on Asacol and had not experienced symptoms for some time when my IUD was removed. After 8 months of “letting the universe decide” when to have a baby, we found out I was pregnant! Yay!

My first trimester was filled with the usual discomforts. Second trimester, you know, the one where you’re supposed to enjoy pregnancy and start feeling better? Not for me. I went through the worst flare of my life. It was easily the most miserable I’ve ever been, both physically and mentally. I had to stay home from work multiple days a week and was unable to help at home. I don’t know how I could have made it through without my husband’s support. 15 weeks

My doctors put me on oral Uceris, and when that wasn’t enough, they also put me on the rectal foam. The Uceris made things bearable, but I knew I wasn’t doing well.

I wasn’t gaining any weight despite my ever-growing belly. My friends and colleagues started noticing that I was losing weight. At first, it was in the chipper way people comment on weight loss. After a while people started to ask about it in a concerned voice.

I’d tell myself, “At least my baby is doing okay!”

By 3rd trimester, I could function normally most of the time. At my 36-week growth ultrasound, it was determined that my son had intrauterine growth restriction, and they talked to me about the possibility of induction between 37 and 39 weeks of gestation. 33 weeksAfter my second-high blood pressure reading that week, a nurse advised me to come into labor and delivery. When I arrived, I was diagnosed with gestational hypertension and started the induction process the next morning at 37 weeks.

Five days of induction later (really), my beautiful baby boy, William, arrived at 5 pounds 1.5 ounces. He was small, but healthy! After he was born, my UC got so much better until he was 2 months old when I had another flare. Suddenly I needed to care for my newborn in addition to taking care of myself. It seemed an insurmountable task. With frequent bathroom trips and intense fatigue, the newborn phase was made even tougher.

Holding on to the hope of breastfeeding

Breastfeeding was something I was really hoping for as part of my journey into motherhood. Newborn WilliamWhen William was born, I was thrilled, and so fortunate, to have a successful early breastfeeding relationship with him. When I started flaring again, breastfeeding became a significant challenge. I’d be with William during a late-night feeding, get a few minutes in, then have to wake my husband to keep William safe while I quickly ran to the bathroom. Obviously, this made William more than a little upset to start eating only to be pulled away. I also became increasingly worried that he wasn’t getting the nutrition he needed from me because I wasn’t absorbing nutrients the way I needed to. I upped my supplements and kept close tabs on his weight but continued breastfeeding. At this point, I knew I needed to do something different with my medications. What I was doing clearly wasn’t working.

I started to research biologics and met with my doctor to discuss my options. He recommended Entyvio, and my insurance approved it. I worried William would be harmed by breastfeeding while I was on a biologic. Would he be more susceptible to illness because of it? Would my supply be affected? My doctors reassured me that it was safe to be on Entyvio and continue breastfeeding, but I knew the research is limited. After seeking information and support from other moms who have breastfed on biologics, I decided to take the risk, start the biologic, and continue breastfeeding.

“Healthy mom, healthy baby” is the way I decided to frame it.

From flaring to remission

After 3 infusions, I started to feel significantly better, and I am now in clinical remission for the first time since being diagnosed. I finished my breastfeeding journey about a month ago. My supply wasn’t affected by starting the biologic, and my son has had absolutely no ill effects. He gets sick less than I do! Most importantly, I can engage with and care for him so much better than I could while I was ill. Family photo

This journey has made me think twice about having more children. Pregnancy and childbirth were really, hard on my body because of my UC and other complications I experienced after delivery and I’m not sure I want to risk my health again. Sometimes I wish that I were like “normal” people who approach pregnancy without having to think about all of this. I remind myself that this is MY normal, and that’s okay. And it’s okay to have one child if we decide to do that. I keep repeating this: healthy mom, healthy child(ren).

Reflecting on my journey, here are some lessons learned that I hope you take away:

  • Work closely with your GI doc and your Maternal Fetal Medicine team to make a plan BEFORE trying to have a baby (or even “letting the universe decide!)
  • Prioritize your own health, even when pregnant. Remember: healthy mom, healthy baby. This includes taking care of your mental health.
  • Connect to other moms who have CD or UC to learn from them
  • Flaring during pregnancy and postpartum is physically and mentally exhausting – lean on your support system heavily if you find yourself in that place
  • If breastfeeding is important to you, talk to your doctor about whether it’s safe to continue to do so while on a biologic – utilize the IBD Parenthood Project as a helpful resource.

 

IBD on the College Campus: The Social Burden

Living with roommates. Having to use public bathrooms. Feeling fatigued and unable to keep up with the energy levels of your peers to study and socialize. While living with IBD while being a college student is difficult in the classroom, many may argue the struggles are even worse outside of academics. Socially, college is a time to explore, learn, and spread your wings. But, when you’re taking on an unpredictable and painful chronic illness, making plans to attend a house party on a Friday night becomes a bit more complicated.

Annie Tremain was diagnosed with Crohn’s disease her senior year of high school, so navigating the disease while starting college was a stressful whirlwind. IMG-1375She was nervous about the potential of being matched up with a roommate who wasn’t a good match.

“I felt so alone. I requested a single dorm room, felt like I was hiding because I didn’t want to use the shared bathrooms when others were around. I was adamantly opposed to a roommate because I didn’t want to have to talk to a stranger about what I was going through.”

Using a public bathroom can be adjustment for any college student, let alone someone battling IBD. Elizabeth Haney IMG-1374was diagnosed with ulcerative colitis less than one week before leaving to study abroad for three months. She says the fact the trip still happened and was so successful was a highlight of her college career. While back on campus in the States, she recalls how stressful it was prepping for colonoscopies.

“Prepping for a colonoscopy while you live in a house with three people but only have one bathroom was horrible. My mom would get me a hotel room for prep night when she could swing it financially.”

Rachel Wigell was only fourteen11886127_10153032256553321_8963053032556586310_o (1) when she became sick with IBD, so she barely had time to form a body image that didn’t include this disease. She says she was never somebody who was confident in her appearance, but having IBD didn’t help. From the prednisone “moon face” to issues with gas and continence, there have been lots of times where she felt too gross to be taken seriously.

“One trouble I had was plain old insecurity. Living in a dorm and sharing a bathroom with 20 other women isn’t fun when you’re having diarrhea multiple times a day. I was desperate to hide how “gross” I was from other women, which meant I didn’t have a support system.”

For Sydney Mouton, being immune compromised IMG_1080caused her to get sick all the time and the community bathrooms weren’t of much help.

“I was in the middle of my worst flare in college, so I had a lot of issues from medication side effects that were more difficult to deal with while in school and trying to have a social life.”

Couple the stress of the living situation with the fatigue that’s brought on from the disease and it can be incredibly challenging. So many students living with IBD have shared with me the difficulty of wanting to be “normal” and like everybody else but then having to deal with the extreme health consequences that generally result from a “fun” night out.

Sarah Kate struggled with handling the unknown of the disease, while trying to help her friends understand her situation.IMG-1376

“Not knowing when I am going to feel well and having to explain to friends and them not really understanding why I felt well yesterday and why I’m not well today.”

Tips for students to calm the social stress

Be candid with your friends and open about your situation. The more you communicate, the better educated those around you will be. If people show lack of compassion or disinterest, that tells you right off the bat that their friendship is not worth your time and effort. Seek out friends who have your back, genuinely. Rather than downplaying your struggles and pain, paint a clear picture to those around you so they can support you and understand the nature of your experiences.

Give yourself plenty of time to get to and from class and social outings. Scout out the best places to have a safe, quiet rest. Pad your course schedule and extracurriculars so you don’t burn yourself out. Try to schedule your classes no earlier than 9 a.m. so you’re able to get plenty of rest each night.

Check out dorms on campus with private bathrooms. During my college experience, I lived in a quad my freshman year and lived with two roommates my sophomore year. I always had a private bathroom. Seek our dorms with these options available. The privacy and comfort will be invaluable.

Weigh the pros and the cons of a night out. If alcohol doesn’t agree with you, don’t push yourself just to try and fit in. You can still go out and have a great time and limit the amount of alcohol you ingest. It’s more fun to be hanging out with others and being sober than it is to be back at the dorm or in the hospital because you put your health in jeopardy.

If you’re struggling, don’t hesitate to reach out to the college counseling center on campus. As isolated and alone as you may feel in the moment, always know there is support available for you both near and far.

Click here for IBD on the College Campus: Getting the Medical Logistics in Check

Click here for IBD on the College Campus: The Challenge of Academics