Rolling up sleeves for a hopeful future: Immunocompromised healthcare workers with IBD share their vaccine experiences

Since the start of the pandemic, healthcare workers have carried the heaviest burden. Especially those who are immunocompromised while working in harm’s way. This week on Lights, Camera, Crohn’s you’ll hear from three healthcare workers with IBD who are immunocompromised and have received their first vaccine. It’s my hope that by hearing from these warriors firsthand that you’ll gain a sense of comfort, understanding, and perspective while also understanding the importance of debunking medical misinformation. Our IBD community is delicate and requires more expertise than simply listening to a family member or friend who “read something on the internet” or someone who has a cousin with Crohn’s (or now COVID).

Wearing several hats—IBD Mom and Relief Charge RN in COVID Unit

When Shermel Edwards-Maddox of Houston was diagnosed with Crohn’s disease in 2007 at age 24, little did she know that she’d one day lead the charge in a medical unit in the thick of a pandemic, while having two kids and a husband at home, while being on a biologic.

“It has been both physically, mentally, and emotionally draining. I imagine that every healthcare worker has been afraid however being immunocompromised has added an extra layer of fear. The emotional and mental exhaustion comes from the constant worry of “what if today is the day I catch COVID”? Every time I step onto the nursing unit, I’m aware that I could contract the virus. It’s very reminiscent of IBD and the worry of whether a flare is starting.”

Like many other healthcare workers (and the general population for that matter!), she says the roll out of the vaccine provided her with a sense of relief, but also an understanding about the importance of educating the public about the importance of getting vaccinated. As a nurse, she has a solid understanding of how clinical trials work and knows that more than 70,000 people received the vaccine between the Pfizer and Moderna trials. She was especially excited to receive the vaccine after it was found to be 95% effective. Shermel feels blessed to receive “0.3ml of hope” in a syringe and says many in her shoes feel like they just received their “second wind” after months of being beyond exhausted.

“It was quite emotional. I shed several tears in the days leading up to the vaccine. Those tears were in amazement of how grateful I am to be getting a vaccine that could spare me from this horrible virus that takes the lives of so many. When it came time for getting the vaccine, I felt pure excitement!”

Shermel’s only side effect she experienced was a sore arm, which is expected with any type of vaccine.

The COVID vaccine allows Shermel to not only protect herself but her husband, children, patients, and the community. It makes her feel hopeful to know her daughter will get to see her kindergarten teacher’s face without a mask and that her son will be able to attend his school graduation, free of social distancing. 

From an Ostomy Reversal in March to working as a clinical researcher

Caroline Perry also happens to live in Houston and after battling Crohn’s since the age of eight in 2000, she had an elective ostomy reversal surgery March 4th just as the pandemic was unfolding in the States. She takes Entyvio AND Stelara and says that even though she’s on two biologics, her physician had explained to her that both drugs have a relatively good safety profile. While she wasn’t overly nervous about contracting the virus more than the next person, she has been nervous about how her body would react to it.

As a clinical researcher, her boss, happens to be her gastroenterologist. Having her care team readily available and working alongside people she knows and trusts on both a personal and professional level has helped her cope through the pandemic immensely.

Prior to receiving the vaccine in December (2020), Caroline admits she had some initial concerns and brought them up to her doctor, which is what she recommends everyone does.

“Many people are getting all their information from the internet or by word of mouth and are neglecting to listen to our experts—some even mistrusting them. My doctor gave me lots of evidence on why she believes the vaccine is safe and debunked a lot of my fears, which I found out were fairly common questions or misconceptions regarding the vaccine. I got the information I needed to make an informed decision, and once I had all the information, I was no longer worried about getting the vaccine! I am much more concerned about getting COVID than any potential side effect of its vaccine.”

Caroline says she was so excited to receive the vaccine, not only for herself, but for all the healthcare workers that were in the room with her.

“Sitting in that chair, it hit me. I was really experiencing a significant piece of history and I will never forget the feeling of palpable relief in that room. As healthcare workers, we have heard nothing but bad news for so long, and the vaccine is a beacon and glimmer of hope, at the end of a very long tunnel.”

Due to the pandemic, Caroline and her fiancé canceled their wedding for the time being, but finally feel like they can breathe a sigh of relief. Her fiancé won’t be eligible to receive the vaccine until the last round is available, so until then, she says they will continue to practice COVID precautions and keep up to date with the latest data surrounding the vaccine.

After receiving the vaccine, Caroline still received her Entyvio that afternoon! Her only side effect, like Shermel, a sore arm. As of now, she’s working on COVID research in addition to her usual IBD research. Caroline says this past week was her first time working in the COVID ICU for a new clinical trial, and she felt a lot safer thanks to having the first vaccine.

Juggling Women’s Health while being a mom of 3

Janice Eisleben, a Women’s Health Nurse Practitioner in St. Louis, was diagnosed with Crohn’s in October 2017 while pregnant with her third child. She was initially on Humira, but started Stelara a year ago. Janice happens to work at the OB office I go to, so I know her personally and have experienced her amazing care through my own pregnancies. We connected immediately once we both discovered years ago that we were IBD moms on biologics.

She recalls how scary the onset of the pandemic was, between the limited information and the looming unknown. As a patient with IBD, on a biologic, she wasn’t sure what that ultimately meant for her well-being. When she found out the vaccine was going to start being available to healthcare workers, Janice says she was elated.

“I feel like the vaccine finally offers some level of comfort to healthcare workers who have literally been giving everything they have to take care of patients. And this is not limited to nurses and doctors! The hospital cannot run without the respiratory therapists, housekeepers, and maintenance staff—these people are truly the unsung heroes of this pandemic.”

Janice said she did not have concerns or worries about the vaccine because she had been following the clinical trials from the early stages. She says the energy she felt just standing in line to receive her vaccine was something she’ll always remember and that everyone there was beyond ready to take this next step.

“It was incredibly emotional. I honestly teared up when I received the email inviting me to schedule my appointment. I was so excited that the night before I had trouble sleeping—kind of like a kiddo who can’t sleep the night before Santa comes. This vaccine means so much for us. It means that maybe sooner than later I will feel more comfortable with my kids going back to school and participating in activities. It means that we have less worry about me bringing this virus home from work to our household, and less worry about me getting a severe case of this virus.”

She says she can completely understand why someone would be skeptical of the vaccine, but she encourages everyone to avoid the “Google trap” and to please contact your physicians/care providers to discuss it further. For anyone with IBD, Janice advises you to specifically contact your gastroenterologist. If there is anyone those of us with Crohn’s and ulcerative colitis should trust, it should be our GI!

Janice’s only side effect was also a sore arm, though she does anticipate more symptoms (low grade fever, aches, fatigue) after the second dose, because this was well documented in the trials.

Helpful Resources to Educate Yourself About IBD + COVID Vaccine

About IBD: Podcast Interview with Dr. David Rubin: A Key Opinion Leader in IBD Helps Patients Understand What to Expect with Vaccination

Crohn’s and Colitis Foundation: COVID-19 Vaccines: What IBD Patients & Caregivers Need to Know

Halloween Happenings and IBD: Advice from GI’s and parents of pediatrics

Halloween is extra scary this year for all the wrong reasons. It’s especially challenging for children with IBD who are immunocompromised. This week on Lights, Camera, Crohn’s I share input and advice from several gastroenterologists about everything from trick-or-treating to flu season, along with the game plan four IBD families have in place for the holiday. Much like anything with this pandemic, we’re trying to do the best we can to live, while also staying safe.

As an IBD mom myself, I’m still conflicted about how best to celebrate Halloween with my kids this year. We have their costumes, and the house is decorated festively, but I’m extremely hesitant to allow my 3.5-year-old son to get candy from strangers in the middle of a pandemic. Our game plan is to hang out with my sister-in-law’s family as we do every year. I’ve been inspired by how fellow IBD families are creatively adapting and making adjustments to celebrate. I think you will be, too.

Nicole’s daughter Addy is 15 and has Crohn’s disease. She’s on Humira. Nicole said her family already had a little “pow wow” to discuss Halloween and how it was going to be this year. They’ve decided to celebrate over the span of two days by doing the following:

  • Making Halloween Gingerbread houses
  • Decorating Halloween Cookies
  • Having a glow in the dark scavenger hunt (The lights in the house will be out, the kids will have glow sticks/flashlights and they will have to use clues to find their bags of Halloween décor. With the bags of décor, each child will create a mini haunted house in their bedroom and go “trick or treating” to the different bedrooms and experience their siblings’ haunted house.
  • On Halloween night Nicole is going to make a Halloween-themed dinner
  • The family will watch Blair Witch Project

Nicole says being immunocompromised through COVID has been incredibly challenging for her daughter. She says they are trying to balance everything so that Addy doesn’t fully resent her disease.

“She sees that her friends are hanging out together, not social distancing, and not getting sick. We have had many moments filled with tears and frustration and we are doing the best we can to try and offer social interactions in the safest ways. But, she is a teen…and the efforts are hardly enough. Halloween this year is something my kids are all excited about, but it’s the day-to-day stuff that is most challenging through the pandemic.”

Ebony’s 14-year-old son, Jamar, is on Remicade infusions to manage his Crohn’s disease. Jamar was diagnosed with IBD when he was nine. He’s now a freshman in high school and attending school daily in-person for half a day with the hopes of making the basketball team.

“Even though Jamar is attending school, we decided as a family that we are not going to do anything for Halloween this year. We also plan to celebrate the holidays at home, to keep on the safe side. Since he was diagnosed with IBD and expressed sadness that he didn’t understand why he had to have this illness, I’ve explained to him that we’ll get through this together and that I’ll always support him—and that hasn’t changed through this pandemic,” said Ebony.

Paulina’s nine-year-old son, Grayson, also has Crohn’s. He’s on Pentasa, Entocort, and Omeprazole to manage it. She says her family plans to dress up in costumes as usual. Grayson is going to be Bowser from Super Mario Brothers. They have tickets for a drive through Halloween event at the community center by their home in California. Paulina says even though they have to stay in the car this year, Grayson and his sister are still excited to see all the decorations and participate in the scavenger hunt.

“We also plan on faux trick or treating, where we still go out and walk around our neighborhood and enjoy spotting cool decorations, BUT I will bring a bag of goodies and little prizes. For every few houses we walk by, they’ll get a surprise goodie put into their bag. Grayson will be able to go through his “loot” once we’re back home. I’m sure we’ll watch Nightmare Before Christmas (it’s a family favorite). Halloween falls on a Saturday and on a full moon…how could we possibly miss the nightly walk?”

Paulina says Grayson often feels frustrated when the topic of “being immunocompromised” comes up, but that he understands they are being overly cautious for his own health and that of others.

Cindy’s 10-year-old daughter, Jean, has Crohn’s disease and is on weekly Humira injections. She says Jean is in that interesting phase of childhood where she still kind of wants to go trick-or-treating, but also feels like she’s outgrowing it or too cool for that. This year, Jean is going to attend a small outdoor get-together on Halloween night with four classmates. It’s important to note—Jean has been attending 5th grade—in-person, five days a week since August.

“The kids will make s’mores and pizza and watch a spooky kid movie on an outdoor screen. Because she and her friends are in the same classroom “pod” and she spends more waking hours with these classmates than she does in our own home, we are accepting of her celebrating with them.”

Cindy says Jean’s friends and their families have been extremely accommodating to her immunocompromised status throughout the pandemic.

“When she has visited their homes or on limited occasions shared a carpool, these families have been careful to pursue a combination of exclusive outdoor time, mask-wearing, windows down on car rides, pre-packaged or restaurant carry-out snacks and meals, and having freshly cleaned bathrooms dedicated for guests’ use. Other parents proactively talk through risk mitigation and I couldn’t appreciate them more for their thoughtfulness. Immunocompromised or not, we all share similar concerns during COVID.”

Cindy went on to say she thinks Jean will trick-or-treat with her five-year-old brother at a few of their next door neighbors’ houses. They live in Indianapolis and trick-or-treating is “not recommended” by the county health department there, but she expects many of her neighbors will still be handing out candy.

“I also intend to hand out candy from our driveway, so long as trick or treaters or their parents are wearing face masks. This follows our family’s general approach on life during COVID: we are more concerned about “shared air” than we are about surfaces. We believe (and science indicates) surface infection can be largely addressed through handwashing. Because trick or treating can occur in outdoor spaces, we feel somewhat comfortable with that – balanced with the fact that while we are extremely concerned about COVID and have taken all precautions since March – we strive for an ounce of normalcy. There are enough parts of Jean’s life that are not typical due to living with Crohn’s Disease – whenever we can control any part of her life feeling “normal” we make every effort to do so. This was the case before COVID and will remain so afterward.”

Cindy says she reminds her daughter they are doing everything they can to protect her health, while also doing their best to ensure Jean can pursue all the parts of her life that bring her joy. It’s not an easy tightrope to walk, and as an adult with IBD, my hat truly goes off to parents trying to navigate these unforeseen times for their children.

What Gastroenterologists are recommending for Halloween and beyond

Dr Miguel Regueiro, M.D., Chair, Department of Gastroenterology, Hepatology, and Nutrition, at the Cleveland Clinic says he thinks it’s important for people to “live” and be with family and friends. He has a few tips and tricks (or treats!). (His joke, I can’t take credit!)

“For outside events or walking the neighborhood, this is probably the safest as we are learning that open air events are the least likely for transmission of COVID. At the same time, I would still practice wearing masks, social distancing, and practicing good handwashing. Avoid personal contact, shaking hands, hugging, etc.”

For those distributing candy, Dr. Regueiro says it would be prudent to wear gloves (nitrile gloves or similar) to avoid directly touching the candy. Out of abundance of caution, he said it would be reasonable to also wear gloves to unwrap the candy.

“Regarding trick or treating in malls or confined spaces, this would be less optimal than open air. Masks, social distancing, and hand hygiene is a must. Parties or gatherings in houses should follow the guidance of local health advice. Some parts of the country may have a much lower rate of COVID. Overall, though, I would avoid close gatherings in enclosed spaces, which means avoiding these parties, especially if immunocompromised.”

Dr. Regueiro wants to mention that the IBD Secure Registry is finding that IBD patients on immunosuppressive agents/biologics are NOT at increased risk of contracting COVID. He says while this news can be comforting, it may also be that those with IBD on these types of medications have been extra cautious.

“Everyone should get the flu shot. Getting influenza may mimic symptoms of COVID, and influenza is also a very serious virus. We think getting influenza and COVID could be even more dangerous. Getting plenty of sleep, staying well hydrated, eating healthy, and exercising are also important for the immune system and health. Don’t let yourself get run down.”

Dr. Anil Balani, M.D., Director, Inflammatory Bowel Disease Program for Capital Health Center for Digestive Health in New Jersey does not recommend indoor Halloween parties either, even if kids and parents are wearing masks (whether it’s part of the costume or a regular mask).

“With indoor settings it is hard to control the ventilation settings which could potentially increase the risk of airborne transmission, and furthermore many kids may find it difficult to breath indoors with a mask on.”

Dr. Balani says trick or treating, if it’s limited to outside, is probably ok. Although kids should wear masks when doing so.

“Children can trick or treat with their parents or siblings instead of a group of large friends, unless they are with a small group of friends that are in their “pods,” or groups of friends whose parents have been very careful with all COVID related precautions the entire time. Parents of immune compromised kids can also pick up the treats for the kids.”

Along with maintaining proper handwashing and social distancing precautions, Dr. Balani advises everyone to get the flu shot, unless there are medical contradictions. He recommends taking a healthy dose of vitamins including Vitamin C and zinc and continue to stay on top of all your IBD medical care to keep your disease managed and under control the best you can.

“The SECURE-IBD registry has shown us that people who are in the midst of an IBD flare are at high risk for complications from COVID should they contract the virus. On the other hand, if one is in remission, they are likely to have a better outcome from the virus, regardless of which IBD medical therapy they are on.”

When it comes to celebrating Halloween with his own family Dr. Balani and his wife have a few tricks up their sleeves. Instead of typical door to door trick or treating, they plan to set up an outdoor movie night with Halloween-themed movies, have an outdoor candy/treat hung similar to an Easter egg hunt with family and/or a close knit group of friends, host an outdoor pumpkin carving party, and have a backyard costume/glow dance party.

And don’t feel like you need to throw out your kids’ Halloween candy! Studies suggest that the SARS-COV2 virus may not be infectious on surfaces for too long. If there are doubts or concerns, Dr. Balani recommends leaving the candy out for a few days to allow any virus particles to die. Parents can also open the wrappers for their kids.

Dr. Maria Oliva-Hemker, M.D., Director, Division of Pediatric Gastroenterology, Hepatology, and Nutrition at Johns Hopkins suggests for families to look for other creative ways of celebrating Halloween this year, regardless of whether a child has IBD or not.

She recommends:

  • Virtual costume parties
  • Halloween movie or craft night
  • Making special Halloween-themed treats at home
  • Outdoor costume parades where physical distancing is possible
  • Checking to see if the local zoo or other outdoor venues in the area are sponsoring a safe, community event, following social distance guidelines.

“Those who hand out treats on Halloween will hopefully wear face coverings and model safe behaviors. If you are trick or treating, consider going to a smaller number of homes compared to past years,” said Dr. Oliva-Hemker.

Prior to making Halloween plans, Dr. Oliva-Hemker says families should be aware of the levels of COVID cases in their communities, as well as where their family members are coming from.

“For example, if they are coming in, or coming from a hot zone, they may want to consider holding a virtual event or be absolutely sure that they follow known guidelines for safety (masks, handwashing, physical distancing).”

She also says she can’t stress enough that this virus can be controlled in our society—other countries have been able to get a handle on things by people following public health guidelines.

“The virus does not know your political, religious or other affiliation—as a physician my hope is that our country pays more attention to what reputable scientists and public health experts are telling us. Taking care of this virus will also get the country back on track economically.”

Handling Halloween When You’re an Immunocompromised Parent

Mom (and dad!) guilt throughout this pandemic has reared its ugly head a few times especially if you live with a chronic illness and are immunocompromised. The last thing I want is for my kids to miss out on fun and experiences because of my health condition.

Dr. Harry Thomas, M.D., Austin Gastroenterology, says, “For parents with IBD, taking children trick-or-treating outdoors – while maintaining social distance, wearing face coverings, using hand sanitizer, and avoiding large gatherings – is, in my opinion, a reasonable option, provided they are not on steroids. However, I would recommend avoiding indoor gatherings, especially without masks, given the rising case numbers in many areas now.”

Along with receiving the flu shot, Dr. Thomas recommends IBD parents to talk with their IBD provider about the two pneumococcal (pneumonia) vaccines, Pneumovax and Prevnar 13.

Navigating the upcoming holiday season in November and December

Halloween is just the tip of the iceberg when it comes to the holiday season. There’s no doubt this will be an extremely hard time for us all.

“This is normally a time to celebrate with friends and family. But with the COVID pandemic, unfortunately things cannot be the same. This will be especially difficult for those of us living in the cooler climates where the tendency is to go indoors. For any potential indoor gatherings, it would be ideal to limit the number of people to allow safe social distancing. I would encourage families that are planning on staying together multiple days to consider getting tested for COVID before getting together,” said Dr. Balani. 

Four IBD Physicians Talk COVID: What You Need to Know

Since the words “quarantine”, “self-distancing”, and “COVID-19” became a regular part of our vocabulary three months ago, there have been many fears, and a lot of gray areas for everyone, especially chronic illness patients on immunosuppressive therapies. I had a chance to connect with well-respected and prominent physician voices in the IBD community to get to the bottom of what we need to be doing right now, and how to best handle the days and months ahead.

One of the most common questions—who is at most risk in the IBD population for getting COVID-19? You may be surprised at the findings and discourse.

“We have been reassured that with the exception of steroids, patients with IBD are not at increased risk for bad outcomes with COVID. The risks are similar to the rest of the population,” explained Dr. David Rubin, MD, Professor and Chief of GI, The University of Chicago Medicine. “Older age, co-morbid conditions like obesity, diabetes or other medical problems, and smoking cigarettes put patients at increased risk.” COVIDarticle

Every study and case series has demonstrated NO increased risk for infection, COVID, or bad outcomes with biological therapies. This includes the work of the international registry (COVIDIBD.org and now published in Gastroenterology), the mixed immune patients of all kinds reported from NYU in the New England Journal of Medicine, and other series from Italy and China.

“We have good data now that IBD patients, even those on immunosuppressive therapies are not at increased risk of COVID. However, getting sick with COVID might mean holding off IBD meds, which could potentially trigger a flare,” said Dr. Aline Charabaty, MD, Associate Professor of Medicine, Clinical Director of the GI Division, Director of the Center for IBD, John Hopkins School of Medicine at Sibley Memorial Hospital in Washington D.C.

Don’t let your guard down

Dr. Charabaty advises everyone to continue to exercise common sense and be cautious for the upcoming months, otherwise we are at a risk of a second wave of COVID-19.

“Follow responsible physical distancing: avoid unnecessary travel, work from home if possible, and minimize outings in crowded places. Continue to wear a mask, wash hands/use disinfectant, in other words continue to follow COVID-19 precautions when out, or if you have to go to work.  The risk of exposure depends on the incidence of COVID-19 in an area, but also feeling overconfident in an area of low incidence can lead to unnecessary exposure,” she added. coronavirus-4937226_1280

Dr. Peter Higgins, MD, PhD, M.Sc., Director of IBD program, University of Michigan, recommends patients on steroids continue to stay home and avoid outside contact, but for patients not on steroids, the outdoors with a mask, away from crowds, can be therapeutic.

“The hard part is knowing when there will be crowds of people, and avoiding dense gatherings,” Dr. Higgins said. “Having open space and good airflow seems to be protective. Being in close quarters, especially with folks who are breathing hard (exercise, singing) seems to increase risk.”

Small Gatherings with friends and family (less than 10 people)

Dr Charabaty recommends the following:

  • Before gathering with family, make sure no one has had recent symptoms or exposure to someone who has tested positive.
  • When indoors with family staying 6 feet apart isn’t always feasible, wash your hands frequently and wear a mask if sitting close.
  • The idea is to share fun family moments, but remain cautious and protect yourself and loved ones.

“I would limit the number for gathering based on how much space you are entertaining in. Certainly, the more people there are, the more limited the physical space per individual there is to share,” said Dr. Neilanjan Nandi, MD, FACP, Associate Professor of Clinical Medicine, Penn Presbyterian Medical Center. “With that in mind, I would ask people to not invite more people than they can physically safely distance themselves from. If we’re too close, we spread the virus. If we have distance, then we decrease the odds.”

Luckily, the summer months are perfect for outdoor festivities and gatherings with friends and family. Being indoors in close quarters is taking a calculated risk. It’s hard to know if everyone at a gathering is uninfected without a lot more testing or strict quarantine from every visitor beforehand.

Outdoor patio seating, should you, or shouldn’t you?

The waters get a bit murky here. The consensus is to get takeout and find a picnic spot far from others or to eat at home.

Dr. Charabaty says she tells patients and her family to avoid or limit outdoor dining. She explains, “It’s difficult for people handling and serving food to follow hand washing and social distancing when service is busy. I see many restaurant workers wearing gloves, and touching many different services, which gives a false sense of security. It’s not the cooked food that is an issue, it’s more the handling of the plates, glasses, and silverware.” Outdoor dining

Be mindful of how far tables are spaced out and call ahead to see what measures the restaurant is taking before you go.

Health pundits have pointed out that bathrooms are a point of contact for any infection to be transmitted. This is something to keep in mind, especially for those of us with IBD, who may need to frequent the bathroom more than most. “Hand dryers may aerosolize, and toilet flushes can create microscopic fecal plumes,” says Dr. Nandi. “Notably, coronavirus is present in stool at magnitudes lower than respiratory droplets, so their impact on developing clinically relevant disease is unknown. It is restaurant goers who are coughing and sneezing and then using the bathroom that may cause more concern. If you need to use the bathroom while out, use paper towels and close the toilet lid when flushing.”

Navigating everything from medical appointments to hair cuts

“I understand people wanting to go to hair salon; if you need to , and no one in your house can cut or color your hair, call ahead to make an appointment to minimize wait and exposure, and pick a day and time that are not busy,” said Dr. Charabaty. “If your visit to the physician is routine, you can discuss with your physician how soon you need to be seen. If it’s a sick appointment or a follow-up that you already needed to delay, then again, wear your mask, remove it only when needed; and wash your hands often.”

Before You Go: Ask medical offices and salons what precautions they are taking:

  • Does the office call patients ahead of time to check if they have symptoms suspicious of COVID?
  • What measures are being taken in waiting rooms?
  • Is everyone required to wear a mask?
  • Ideally you want to see lots of free, no-questions-asked testing in your local community/county to monitor COVID rates
  • A low level of new cases (less than 3 per week) in your local county
  • Lots of serious precautions taken, including possibly outdoor haircuts (common during 1918 flu pandemic), fans to increase airflow, and glove, gown, mask, and face shields on stylist/dentist/eye doctor to protect them as well as you. Recent exposures in Missouri reinforce this.

The future of telehealth

“I expect telehealth will continue- our estimate is that about 30-40% of routine visits may be virtual which is great, but this needs some careful reflection,” explained Dr. Rubin. “We need some thoughts and plans for better home monitoring and some additional guardrails to know when in person visits are needed and when providers or patients should request them. We don’t want to make mistakes and let patients slip through the cracks of virtual visits without physical examinations and adequate disease and therapy monitoring.”

The return to work

Ways to minimize exposure in the workplace and the questions to ask:

  • What measures is your employer taking to ensure responsible physical distancing?
  • Are employees required to wear a mask?
  • If working outside the home, leave clothes and shoes in the garage or the basement. Strip down and scrub down right when you get home.
  • If spouse has symptoms or if they’ve traveled to a high-risk area, they should quarantine.
  • Ask your boss if you can continue to work from home or increase the frequency of doing so to limit your exposure. Provide a note from your GI to Human Resources that explains why you are immunocompromised.
  • Monitor yourself or your spouse closely for fever, symptoms (including both respiratory and GI symptoms) and if possible, pulse oximetry to measure blood oxygen levels (a decrease is worrisome).

Dr. Higgins explains there are “high and low” risks work environments. High risk involves a crowded open space office full of cubicles, working in an ER/ICU/healthcare, assembly line/meatpacking plant, air travel, frequent contact with large numbers of people (bus driver). Lower risk jobs involve outdoor work, low density office spaces with closed doors/good airflow, and solo car travel. photo-1531493731235-b5c309dca387

“When it comes to spouse related travel, I would have them again speak with their employer about the necessity and yield of the trip. Much of what we can do currently can be done via teleconferencing,” said Dr. Nandi. “While the personal touch is always preferred, today’s times do necessitate that we be conservative and protect ourselves and our families. If travel is necessary, the spouse testing upon return is a good idea. If not possible, then conservatively a self-quarantine would be recommended. Of course, this presents marked strain on the functionality of any family. this emphasizes the need for greater and better testing capability.”

Remain cautious, don’t get too comfortable

Even with states re-opening, it’s on us to remain cautious and minimize unnecessary exposure while being able to provide for our families. We all have cabin fever going on, but we are all responsible to prevent a second wave of COVID by avoiding being complaisant.

“While it is reassuring to know that in general our patients with IBD do as well as the general population (or possibly better), it is prudent to continue our caution until we get to an R0 of <1.0 (meaning one infected person infects less than one additional person) by ongoing efforts to flatten the curve and/or a vaccine,” says Dr. Rubin. coronavirus-line-art-5019475_1280

This too shall pass

“It is sad and frustrating that this pandemic has occurred in our society, but I view it as a unique opportunity to get better connected: first with one’s self ; second with our immediate family and friends and third, with our natural environment,” said Dr. Nandi. “In my opinion, our Western society’s luxuries can often prevent us from enjoying the simplest pleasures in life. Thus, I take this time as an opportunity to spend quality time with my family, read more books, try new recipes, and workout more regularly. Because, I know in time, this too shall pass – and the opportunity that it presents will disappear as well.”

 

Crohn’s and COVID: Hear one IBD mom’s experience battling both

Imagine having a fever for 31 days along with debilitating fatigue, a scratchy throat, cough, and trouble breathing. That was the case for Jessica I., age 34, of St. Louis. She is a COVID survivor, a Crohn’s warrior on immunosuppressant medications, a wife, a mom to two little ones, and an attorney.

Hindsight is 20-20 and of course we know a bit more about COVID-19 now than we did when quarantine and chaos ensued in mid-March, but let me take you back to how this all went down for Jessica and her family. DSC00747

Her daughters, age 4 and 19 months go to the same preschool and daycare. Their last day was March 11th. Jessica received an email from the director of the school saying a record number of teachers and students were out with the flu and strep. Except later it was determined the sickness going around the school was COVID-19. Two teachers landed in the ICU and multiple kids and parents tested positive in her older daughter’s class.

How the symptoms presented

“The first change was extreme fatigue and a scratchy throat, almost like cotton balls were stuck in my throat. Two days later I started with a low-grade fever. I felt pretty lousy for three days—fever, chills, and aches,” says Jessica. “I had one day where I felt better (March 26), but the following day I felt worse than before with a much higher fever and I had a dry cough. I felt constriction in my chest with every breath I took.”

Jessica’s husband was proactive and had ordered the family a pulse ox back in February, so she was able to monitor her oxygenation throughout her illness. She never dipped below 92, but the chills, painful aches, headaches, and fever from 99-101 stayed with her for over a month.

Still not 100%

“Though I no longer have a fever, I still have good days and bad days. I still have chills, aches, and extreme fatigue. It’s way more manageable, but I’m definitely not 100%,” says Jessica. “Luckily, I did not have the smell and taste issues, but because I felt so awful, I’ve lost 25 pounds.” 20190921_161434

Jessica is grateful her Crohn’s disease has not caused her problems in recent weeks. Diagnosed at age 12, IBD has been a part of her life for as long as she can remember.

She had two bad flares during her second pregnancy and most recently an eight-month flare last year. When her Remicade infusion was due this month, her GI was adamant she stay on schedule since she no longer had a fever. Jessica was terrified about getting a biologic on the heels of having COVID-19, so she chose to extend her medication schedule by one week. Her worries were justified.

“In 2006, I got my Remicade when I had mono (hadn’t known at the time) and got encephalitis and had to be in a UK hospital in the ICU for a month. I lost my ability to talk. I almost died. My GI doctor knows of this history, but insisted that I needed my Remicade because of my history of getting flares the last few years.”

Despite her apprehension, Jessica trusted her long-time physician’s recommendations and stayed on her Remicade and Imuran.

Balancing motherhood while fighting COVID-19

The first 12 days, Jessica isolated herself from her family in her master bedroom. Her husband worked a full-time job from home, while taking care of both girls on his own. Once Jessica’s fever persisted after two weeks, they decided as a family to have her come out of isolation because the burden was nearly impossible for her husband to continue to take on. Igielnik-8

“We knew almost for sure that my children were asymptomatic and gave me COVID-19. The next two weeks anytime I was out of my room I wore a mask and gloves. I didn’t make any food. This was so hard because I was still extremely sick and was just supervising play and TV watching for my girls. To this day, my husband and I are still sleeping in different rooms and not hugging and I’m not going anywhere near his food.”

Jessica’s husband is an avid news consumer and was following everything that was happening in China. He started to stockpile food and wipes back in January. Friends thought he was overreacting. His grandparents are Holocaust survivors. Jessica credits his “alertness” to that.

What Jessica wants people to know

Even though Jessica was able to fight the illness without being hospitalized, she says if we weren’t in the middle of a pandemic, she would have gone to the hospital in “normal” times.

“Mild COVID isn’t mild COVID. What I had was considered mild and I was so sick for so long…and I’m still not feeling completely better. I think people would change their mind about the severity of this if they knew someone who had COVID-19 or they themselves experienced it.”

To this day, Jessica still has chest pain and backaches. Her care team believe she has inflammation in her lungs because she was sick for so long.

 

 

My family calls me “Sergeant COVID”: Navigating life while being high-risk, as the world reopens

I’m preparing to feel like the bad guy in the months ahead. My family has already jokingly called me “Sergeant COVID”.  As an IBD mom who is immunocompromised, the decisions I make as the world starts to reopen may step on some toes. I’ve always been one to struggle with confrontation and take it upon myself to be a people-pleaser, which isn’t always a good thing. But this. This is different. I know there will be times I need to speak up and say no.

While out on a walk with my family in our neighborhood this week, we approached a house with two moms sitting side by side, a play date was going down.

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Daily walks and getting fresh air help to keep us sane!

Several kids ran around the yard. An SUV parked next to the two moms with their thermoses. I turned to my husband when I spotted them and said, “well there’s a playdate.” He laughed and said, “Are you not going to allow Reid and Sophia to see anyone for a year?”

Well, that’s a good question my friends. Who knows what these next few months will bring, and as someone who is immunocompromised from my biologic medication, that may need to be the reality if things don’t make a drastic turnaround for the better as far as number of cases and deaths.

I want to be together with my friends and family as much as the next person

I also understand the risk associated with getting together with people who have not taken social distancing and quarantine as strictly as my family has. I haven’t stayed in my house and neighborhood since March 12th and only ventured to the grocery store and for bloodwork once, to throw those efforts out the window. I haven’t cooked every meal for my family and refrained from ordering take out for nothing.

baking

Trying lots of new recipes has been a great distraction.

The moment I let my guard down before I feel comfortable, the moment I put myself or my family at risk.

As someone who’s worried about sickness from germs and flare-ups for years, I see this pandemic through a different lens than many. Anyone in the IBD community who is on immunosuppressive medication has a different perspective. I’m already anxious about having to justify my decisions to stay home as life slowly starts getting back to a new normal for everyone. But until I feel safe, we’ll be taking all the precautions.

I wonder just as much as the next person in the chronic illness community how to navigate these difficult conversations with well-meaning and otherwise “healthy” friends and family. When I hear about people getting together indoors, going for walks with people outside their nuclear family, having people over for BBQs, even being essential workers (which I know can’t be helped)—I know the date I’ll see those friends and family just gets pushed further away.

When things calm down, the first people my kids and I will see indoors, will be my parents, who have practiced strict social distancing and haven’t ventured out for anything but groceries. If they were out and about and seeing others, that wouldn’t be the case.

We all need to do what we feel comfortable with and worry less about hurting someone’s feelings or getting a little backlash for our decisions. Luckily, my husband Bobby has been extremely understanding and supportive and backs me up on how I feel. IMG-1529

The best thing we can do is over-communicate. Talk openly about life as someone who is immunocompromised and what recommendations and parameters around social distancing your care team has shared with you. By talking about what your doctor has told you, it validates your worries and fears.

It’s ok to feel disappointed and frustrated. Not everyone has been or will take social distancing and quarantining as seriously as you do. Focus on what you can control—and that is your actions and that of your families. You are doing all that you can to stay safe, and that’s what matters. I’ve had moments where I was physically shaking and so overwhelmed by emotions throughout these past few weeks—because of the actions of others. You see it on social media—the families getting together with several people for Easter, and birthdays, and Mother’s Day. People taking trips on airplanes. Social distancing block parties where people are all standing super close to one another. It’s truly mind-boggling and hard not be judgmental from my vantage point. If you need to cut down on social media or cut ties temporarily with those who you believe are acting irresponsibility, do what you need to do for your mental health and well-being.

We had originally planned to drop off my mother-in-law’s Mother’s Day gifts on the front porch and stay in our car, but my in-laws set up patio furniture on opposite sides of their large patio and we were able to hang out outside 20+ feet apart to exchange presents. It was nice to finally see one another from afar vs. through a window.

Constantly keep your finger on the pulse of research. There are so many physicians in the IBD community truthfully working around the clock to bring patients like us the latest and newest information about COVID-19 as it relates to Crohn’s and ulcerative colitis. Educate yourself on factual, research-based information. Follow top GI doctors on Twitter. Stay in touch with your care team and don’t hesitate to ask questions. Tune in for Facebook Lives and Twitter Chats from IBD Social Circle, IBD Moms, and many other great groups.

Lean on the patient community. Prior to the pandemic, life with a chronic illness already made us feel a bit like outsiders. IMG-1409Now more than ever, we’re being labeled as the “sickly”, the “disposable”, the “weak”, the list goes on. COVID-19 is not JUST about the elderly and immunocompromised, this is about everyone. As patients we have a unique perspective and understanding about the struggles we face daily and what it’s like to go through this challenging time. Connect with fellow patients online who get your reality, your emotion, and the whirlwind of going up against this invisible bogeyman. To refrain from social media, you can download awesome free apps like Gali Health and IBD Healthline, with helpful articles, community conversations, and chats by patients, for patients.

Your FOMO is nothing new. Chances are throughout your patient journey you’ve had to miss out on plans or cancel last minute. Will it be hard when the whole family or your group of friends are getting together, and you tell them you won’t be joining for the big “post-quarantine” reunion? YES. Of course. At the same time, you’ll probably feel comforted not having to worry if so and so is asymptomatic and waiting on pins and needles for two weeks to see if you’re in the clear.

I look so forward to the day when my family and I can reunite with those we love and miss dearly. I just ask that people have understanding, patience, and empathy for those like myself, who will be very fearful to return to life as we used to know it…if that will ever be. Maybe put on the kid gloves and imagine walking in our shoes before you say something that you can never take back.

Revolutionizing the patient experience through crowdsourcing: Use your journey to make a difference

This blog post is sponsored. All thoughts and opinions are my own.

Coping with chronic illness is complicated. When it comes to IBD, no two people have the same experience, but there are often many parallels and overlaps. Crowdsourcing is now being used to understand how to best treat chronic conditions, such as Crohn’s disease and ulcerative colitis. By empowering patients from all around the world to share information on a large scale and leveraging the power of advanced artificial intelligence to analyze and organize that data, StuffThatWorks is revolutionizing how medical research is done.

Chances are you’ve heard of the popular app, Waze, which allows people to build maps and share data with other drivers to bypass traffic. It’s an app my husband and I use all the time! One of the members of the Waze founding team, Yael Elish, started thinking about how crowdsourcing could be used to understand how to best treat chronic conditions. Yael’s daughter started to struggle with a chronic health condition and wasn’t responding well to treatment. Her illness was taking a heavy toll on the entire family. Yael Elish and daughters_1

“It seems like almost everyone dealing with an ongoing medical condition dedicates endless hours researching, speaking with others, and scanning groups in search of something that can help us feel, and live better. We want to know if there are treatments that will work better, if our side effects are unusual, or if diet or lifestyle changes could make a difference. We look for people like ourselves and seek to learn what works (and doesn’t) for them,” said Elish, Founder, CEO, StuffThatWorks.

When it comes to managing chronic illness, it’s much like trying to find the needle in the haystack—the one treatment that will work best for us. The power lies with patients. We are the people who have tried various treatments and know what’s worked best. Crowdsourcing puts patients in the driver seat. Large amounts of information can be gathered from millions of people worldwide.

“I want people to feel empowered – and validated. To realize that their point of view and experience is not only legitimate but is extremely valuable to helping the world understand illness and treatment effectiveness,” said Elish. “I want StuffThatWorks to be a place where patients can share their collective voice and be heard by the medical community.  Where patients themselves are able to impact and drive the research that is being done about their condition and play an active role in finding solutions that will help everyone with their condition feel better.”

StuffThatWorks Currently Serves 85 Condition Communities

As of now, more than 125,000 people are contributing members within 85 condition communities. Over 6.5 million points of data have been shared! One of the biggest communities (fibromyalgia) has over 15,000 members. PCOS has 12,000.

StuffThatWorks is looking to grow the IBD community.

Right now, there are three communities, IBD in general, ulcerative colitis, and Crohn’s. Of these three, Crohn’s is the biggest with 729 members who have reported their experience with 270 treatments. The ulcerative colitis community has 409 members and 155 treatments in the database.

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Take the UC survey: https://stuff.co/s/5sSltbnK

On average, Crohn’s community members report they have tried 6.2 different treatments, and 37% describe their Crohn’s as “severe.” By sharing treatment experiences, our community members can use data to help one another figure out which treatments are best for different subgroups of people.

“The power of this database is that it can reduce the years of searching for the right treatment or combination of treatments. Our platform lets people explore how different treatments work effectively together, and we’re able to analyze everything from surgery and medications to alternative treatments, changes in diet, stress reduction and more,” said Elish.

COVID-19 response

StuffThatWorks is in a unique and powerful place to help advance the research on COVID and understand how it impacts people with different chronic conditions. Who is more at risk? Does the virus present differently in people with certain conditions? Do certain treatments work better/worse for them?

“We are currently prioritizing COVID-19 research by inviting everyone with a chronic condition to contribute to the research by answering questions about their experiences related to the coronavirus pandemic, even if they do not have the virus. We are also inviting all current StuffThatWorks members to fill out the coronavirus questionnaire and contribute to this new research,” said Elish. “We’ve also set up a dedicated coronavirus discussion forum, where doctors are answering questions and providing important information about the latest research.”

In a time when many people are feeling anxious and alone—discussion boards are helping to bridge the communication gap and allow for people to connect with one another. StuffThatWorks community members are seeking support about decisions: Should I cancel my doctor’s appointment? How much am I at risk if I am taking immunosuppressants? How can I help my partner understand my anxiety about coronavirus?

The world is suddenly realizing that crowdsourcing is the holy grail of how to gather health care data on a large scale. The real-time nature of it is particularly important, and the ability to get data from such a vast number of diverse sources.

Crowdsourcing research is limitless: The hope for the IBD community

You’ve heard the adage “strength in numbers”. Once large numbers of people with IBD sign up and become members on this free platform, everyone from the newly diagnosed to veteran patients can find something new and continue to evolve and learn about their patient journey.

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Take the Crohn’s survey: https://stuff.co/s/bzqQR5xP

“I want people with IBD to feel empowered – that this community is THEIRS, not OURS – and that they can determine what it’s used for and how it can be most helpful. They can add new research questions, post personal discussions or experiences and ask others specifically what works and doesn’t for them,” said Elish.

As members of the IBD family, by joining this platform we immediately become part of a supportive community where we can talk with others just like us, either collectively, or one on one, about how we manage and handle the day-to-day with our IBD.

Driving Research through Patient Reported Outcomes

Patients like you and me have power to influence the research direction of the medical world. We are all a piece of the puzzle and play a critical role in helping with the future development of medications and treatments, and hopefully one day a cure.

So much medical research is done using small groups and funding for large-scale research is extremely hard to come by. The opportunities are endless with crowdsourcing, in terms of the research that can be collected and the solutions we as patients can only provide. LightsCameraCrohns-Blogpost_image

Whether it’s shortening the amount of time it takes to get an IBD diagnosis or helping people find optimal treatments quicker, by sharing our experiences we gain invaluable insight into improving our quality of life and managing our chronic illness. It’s truly a win-win for everyone involved.

Check out StuffThatWorks and sign up for free as a member. Take part in building a knowledge base aimed at figuring out which treatments work best. Your story. Your experience. It’s powerful and it all matters.

Growing through the grief of COVID-19: Love, A mom with daughters recently diagnosed with Crohn’s

Life was much different for Michelle Manasseh and her family of Orange County, California, one year ago. For starters, her daughters had not been diagnosed with IBD and we weren’t living in the middle of a global pandemic. This week, Michelle shares what it’s like being a parent of two kids newly diagnosed with Crohn’s Disease, while trying to navigate everything that is COVID-19.

It hasn’t even been nine months since Eve (age 11) and Ruthie (age 9), BOTH of our kids, were diagnosed with Crohn’s, and BOOM—COVID-19 happens! So yeah, let’s pile pandemic on top of chronic illness, on top of school being cancelled indefinitely, on top of no contact with any. other. human. soul. for. weeks. on. end. What do we call this? Grief. 5EEF5B29-5EB9-407F-9154-F708F04B5F38

There’s no other name for it. Our whole culture is grieving. One important lesson that the kids’ diagnosis has taught me is how to grieve. And I mean how to really grieve. Parents of kids with IBD know a thing or two about grief. We went through it when our kid was diagnosed, when the next kid was diagnosed, when the flare hit, when the medication changed, when the game plan failed. It comes in waves and it comes out of nowhere.

Our culture has taught us to numb and distract – don’t do it! Don’t miss the chance to be refined by the pandemic fire. Yeah, it’s uncomfortable, but we need to let ourselves feel emotions so we can come through this with true peace and wisdom. If we avoid the fire or pretend it isn’t there, we are doing ourselves – and our kids – a disservice. We need to teach them that grieving is normal and ok. It’s ok to cry. It’s ok to be angry. It’s ok to be sad. We need to remind them that we are all feeling the same things and we will get through it together.

We can’t fix this

Something I realized pretty quickly after my girls were diagnosed with Crohn’s Disease is that I couldn’t fix it. There wasn’t a single special diet, mix of herbs, supplements, exercise, tincture, oil, weed, seed, handstand, or flip that could fix it. And this was a painful truth to learn. As a parent, our natural instinct is to fix things for our kids. We’re stocked with band aids, kisses, and unsolicited advice.

Crohn’s is beyond my control. This has been very humbling for me. Likewise, COVID-19 is humbling our culture. I think it’s revealing a huge blind spot. With the rise of self-proclaimed health experts and medical misinformation circulating broadly across our connected culture, people have believed that they can fix all their own medical problems. Now that blindness is obvious. Just as IBD is not a stomach ache, COVID-19 is not a common cold. We can’t fix it. People are feeling helpless and turning to doctors in desperation. I hope a silver lining is that it invigorates the medical profession and brings to our culture a profound respect for doctors, nurses, and all healthcare workers.

Uncertainty illuminates

For the first time in several decades, the whole world is living under a bleak cloud of uncertainty because of COVID-19. A similar dark cloud rolled over our home last summer when Eve and Ruthie were diagnosed with Crohn’s. I learned that with great uncertainty comes deep discomfort. It forces us down tunnels of self-examination, to take stock of our lives and our purpose. It illuminates our utter dependence on God.

Crisis also has a way of illuminating our deep-seated motivations. Who are we seeing on TV and across social media lately? People with the purest motivations. Doctors. Actors reading sonnets and bedtime stories. Public officials creating guidelines to protect us. Musicians playing across balconies. This is a great teaching moment for our kids. Become a financial advisor to help people. Be a writer to reveal truth. An artist to bring joy. A doctor to bring healing. A musician to bring beauty. An actor to tell stories that need to be told.

What can we do?

Parents – we are navigating a global pandemic with immunosuppressed kids with chronic illness. Let’s be honest, we have massive fears. I had to bring Eve in for an MRI two weeks ago. In my mind, the machine was basically a plastic tube crawling with yellow spindly germs. Never mind a mask – why didn’t someone plastic wrap my child?!? IMG_8604

We are dealing with a heck of a lot, and none of us is perfect. I’m quite certain that my kids will never again ask to be home schooled. The main skill we’ve mastered so far is how to do a Zoom conference while driving to infusions! On Friday night I sipped wine while the girls smeared Nutella on crackers after eating only half of their dinner. Two days later I inadvertently put Eve’s daily Miralax in Ruthie’s water bottle. (Oh gosh, is she flaring!?!) I, for one, would relish a shirt that says “WORK IN PROGRESS” printed in bold neon letters.

No, we aren’t perfect, but we do have something to give. We have a unique perspective and experience. We can be a voice. More importantly, we can be an ear—for our kids and for others. Call a friend and listen. Tell people the good things you’re thinking about them. Tell them you love them. And very importantly, take the time to thank your kids’ teachers, doctors, and nurses for all they have done and continue to do—they are real life heroes.

 

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

UPDATE: Since this story was shared on March 30th, Jadyn’s COVID-19 test came back. After two weeks of waiting, the test came back positive.

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