Tag: IBD

Serving as the Glue to Keep My Care Together: Advice from an IBD mom

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For as long as Danielle Fries can remember, Crohn’s disease has been part of her story. Even though she was officially diagnosed with IBD at age 13, she had stomach issues since infancy. Over the last 16 years, she has tried medications, diet adjustments, holistic treatment options, and therapy to reach a happy balance and remission. This week she shares her experience of flaring during pregnancy and how she managed to bring her baby girl into this world and take care of herself at the same time.

When I found out I was expecting, my GI health was stable. I was only taking Lialda and my most recent colonoscopy showed minimal signs of disease, which left me feeling confident. After my first OB appointment, I was referred to MFM (maternal and fetal medicine) for a consult solely because I had Crohn’s and the pregnancy is considered high risk when you have IBD. The MFM specialist took my history, let me ask more than enough questions, and ultimately decided I was on track for a healthy pregnancy. We parted ways feeling confident that my disease was under control and I should return in the third trimester for one more consult to confirm all was well.

My Crohn’s disease had different plans

I struggled early on with morning sickness but something about those stomach pains felt different. As a Crohn’s patient for more than a decade, it can be easy to tell when something is off. By 12 weeks, it was very evident that these symptoms – cramping, nausea, burning, bleeding, the works – were more than just morning sickness. I was on my way to a full-blown flare and my little one growing inside me was stuck for the ride.

My first feeling was fear. I was terrified enough about becoming a mom, but now that my Crohn’s complicated the pregnancy, my mind started racing. Would the baby be able to grow properly? Would the baby end up with complications? Would I make my baby sick? Will my baby end up with Crohn’s like me? The anxiety and unknown of the situation felt beyond overwhelming and I knew I needed to find the right support system to make me feel somewhat in control of all the chaos.

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29 weeks pregnant with baby Nora

Turning to my most trusted fellow IBD warrior, my mom

My mom was my first source of reason. She could understand and relate to what I was going through more than anyone since she too has Crohn’s. She got diagnosed while pregnant and flaring with me! While her Crohn’s has never been as severe as mine, it really helped to find someone who related to the fears and uncertainty I was experiencing and made it through with a positive outcome.

I was extremely fortunate to find a group of specialists to help bring some answers and clarity to my journey. The entire pregnancy I was in close contact with both my OB and the MFM. The MFM was honest in her lack of understanding of how Crohn’s disease can fully affect the pregnancy and referred me to a GI she trusted. My new GI doctor became my confidant, my champion, my source of calm in the pregnancy. She specialized in the intersection of women’s health and Crohn’s disease, with a specific interest in pregnant women. Finding a GI doctor who I trusted to lead me with a care plan for both my Crohn’s and my baby’s development was the greatest sense of relief I felt since the day I found out I was expecting.

Struggles in the Second Trimester

As I entered the second trimester, I struggled to gain weight and it became apparent that my baby was suffering from intrauterine growth restriction (IUGR). My doctor’s visits became more frequent, the tests (non-stress tests, growth ultrasounds, blood flow ultrasounds) increased and I found myself at the doctor 3-5 times a week. As the visits and tests increase, so did my constant questions, fears, and uncertainties. Never ever be afraid to ask questions – you are the one on the journey and deserve to understand what is going on!

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Final date night at 37.5 weeks

I quickly learned that while I was lucky enough to have three doctors in my court supporting myself and my baby, I still had to be my own advocate. Each doctor had their own niche of where they could help, and I had to serve as the glue to keep my care as one seamless plan. I trusted all the doctors, but wish they could have just had a conference call titled “What the heck to do with Danielle Fries and baby?” rather than leave me playing telephone in the middle. But I learned to be the squeaky wheel to advocate for my health and my baby’s health and not fall through the cracks.

An early induction

After many weeks of testing, deliberation, questions, and my baby’s decreasing growth, my doctors and I decided as a team that an early induction was the best course of action. The OB and MFM felt confident that my baby would grow better on the outside than on the inside and the GI doctor wanted to be able to get my health back in control. I trusted my doctors and asked way too many questions, but felt more confident with a plan of action.

My trust in my care team paid off. Baby Nora was born teeny at 38 weeks and measured in at the 3rd percentile. She spent a few days in the NICU while she gained her strength and learned to breathe on her own. Now that teeny nugget is 6 months old and weighing in at the 90th percentile! I complain daily about how heavy she has gotten and that carrying my baby is more work than going to the gym, but I feel so fortunate. Every single roll (and trust me, they are endless) is a reminder that this girl and I were cared for by the best team of doctors who were by our side every step of the way and gave us both our health. Just after giving birth, I started a new treatment regimen of Stelara shots every 4 weeks and I finally feel like I have my Crohn’s disease back under control.

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Three lessons from one IBD mom to another

  1. Find doctors/care team you trust. You will be talking to them a lot and you need to feel comfortable asking anything.
  2. It is okay to be scared. The unknown is scary and add in the hormones, and it’s a recipe for more! But as much as you may be afraid, you can and will do it and your baby will be okay too!
  3. Be willing to adapt. Whether it’s your timeline for getting pregnant, your birth plan, your own treatment regimen, testing, doctors visit frequency, something is bound to change. I really did not want to be induced (I had heard horror stories of 4 days in labor), but ultimately all my doctors agreed that was the best option for me the baby. And things worked out fine (better than I ever expected!) DANIELLE

 

Cooking in Quarantine: Recipes we’ve found and loved

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Cooking during quarantine has taken mealtime and meal prep to a whole new level. Like many people, I constantly feel like I’m thinking about what I’m going to feed myself and my family and it feels like I spend the other time doing dishes. As an immunocompromised IBD mom of two little ones, I’ve used these past few months to be a bit more resourceful in the kitchen.

Prior to the pandemic, I wasn’t the most adventurous. I had my 10-15 “go-to” recipes and never really branched out. While these past few months have been physically, mentally, and emotionally taxing, I’ve found spending some time in the kitchen, while listening to music, is a sweet distraction amongst the unknown chaos going on outside our home.

Since March 12th (102 days!), we have had take-out four times. So, as you can imagine, I’ve had to get creative with my cooking!

NOTE: These recipes do not follow one specific IBD or autoimmune “diet”. I am always hesitant to talk food, as each and every person has unique dietary needs and is able to tolerate food groups differently. If there was one way of eating that was a magic bullet for IBD, we’d all be following it. The best advice I can give when it comes to diet, is to keep a food journal and see what your individual triggers are.

Here are my favorite recipes I’ve found online since quarantine, that have been a hit in the Hayden household:

  1. Slow Cooker Chili. I’ve tried four different recipes these last few months and this one was our favorite. Since my kids are 3-years-old and 17 months, I did not add the hot sauce.
  2. Crispy Chicken. This is SO delicious, but heavy on the calorie count. (Worth it in my opinion!) Made for great leftovers, too. The pasta is to die for.
  3. Slow Cooker Greek Chicken Gyros with Homemade Tzatziki. You guys. As a Greek girl, I more than approved. The tzatziki sauce was fantastic.
  4. Slow Cooker Chicken and Rice. Super simple recipe. I make this with crescent rolls and green beans. Bonus: Makes the house smell great.
  5. One-pot Sausage and Peppers Pasta. Yummy meal, hits all the food groups, with minimal dishes. That’s a win! IMG-3692
  6. Crockpot Pulled Pork. So simple and so tasty. We pair up the meat with Hawaiian rolls and Bread and Butter pickles.
  1. Salsa Fresca Chicken Bake Recipe. I’ve always been a fan of making casserole-type dishes where you put everything together, put the dish in the oven, and that’s it!
  1. Slow Cooker Shredded Chicken Tacos + Mexican Rice Casserole. We’re big fans of Mexican food. These paired up great together along with all the toppings (tomatoes, cheese, sour cream, avocado, lettuce).
  1. Crispy Breaded Pork Chops. + Warm Cinnamon Apples. I’m usually not a huge fan of pork chops, but this meal is good. I usually make green beans for the side. IMG-2680
  1. Ground Beef Taco Casserole. Like I said above, we’re all about Mexican food. My husband loved this one.
  1. Mediterranean Rice Bowls. I found this recipe last year in a Women’s Day magazine and it has been one of our absolute favorites as of late. You can make this with lamb or beef, we’ve only done beef so far. I also buy mini pita breads to go with this. If you don’t have cucumber or don’t like it, I’ve made this with green bell peppers as well. I couldn’t find the recipe online—so I’ll share it here.

Ingredients:

1 lemon

2 tbsp. olive oil (divided)

2 cloves of garlic (I only use one clove)

4 cups of cooked long-grain rice

1 tsp ground cumin

½ tsp ground coriander

1 pint of cherry tomatoes halved

½ a seedless cucumber, cut into ¼ in. pieces

¼ cup of fresh mint

Crumbled feta, for serving

(I tweaked the directions a bit, so I’ll share how I make this)

  1. Make rice according to the box (will take 25 min. so start this first)
  2. Chop the tomatoes, cucumbers, garlic, and mint and put to the side.
  3. Finely grate zest of lemon, then cut lemon in half. Heat 1 tbsp. of olive oil in a large nonstick skillet on medium-high. Add beef and cook, breaking up with a spoon, until browned. (Once browned, discard fat). Add garlic and ¼ tsp of salt and pepper and cook, stirring 1 minute, toss with lemon zest. Transfer beef to a bowl and squeeze juice of 1 lemon half on top.
  4. Once rice is done cooking add it to the bowl with the beef and season with cumin, coriander, and ¼ tsp of salt and pepper.
  5. Squeeze juice from the remaining lemon half into a medium bowl. Toss with chopped tomatoes, cucumbers, and ¼ tsp of salt and pepper. Fold in the mint.
  6. Add the mixture to the beef and rice and top with crumbled feta. ENJOY! IMG-3693

Bonus recipe: While we were visiting the Lake of the Ozarks recently, I created a salad that is simple and delicious:

Butter lettuce

Chopped apples (I use Honeycrisp)

Chopped strawberries

Chopped grapes

Feta Cheese

Pecans (or whatever nut you’d like to add)

Honey Mustard dressing

Four IBD Physicians Talk COVID: What You Need to Know

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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.”

 

You are not a burden if you have IBD

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When I was 21, in the matter of one week I received an IBD diagnosis and had my heart broken. My boyfriend from college who had previously treated me like a queen, never visited me in the hospital and broke up with me the day I returned home.

I’ll always remember walking into my parent’s bedroom and telling my mom about the break-up. My body frail. My arms battered with bright purple bruises up and down. The weight of a lifelong disease and 22 pills a day hitting me head-on with every emotion possible. My mom’s response, “Well, you’re not perfect in his eyes anymore.”

From that point forward, I worried about the invisible Scarlet Letter of my illness and how it would impact my love life.

Would a man ever be able to love me, for all of me? Crohn’s and all?

You are not a burden.

The recent advice column shared in the New York Times entitled, “Is it Ok to Dump Him Because of His Medical Condition,” plays into every fear and every worry IBD patients grapple with. While Crohn’s and ulcerative colitis can happen at any age, people are more frequently diagnosed between the ages of 15 and 35. Finding out you have a chronic disease with no cure in those youthful years of life—often prior to finding a life partner or starting a career path, is incredibly overwhelming. The fear of the future and what is to come with your hopes and dreams is nearly debilitating at times.

So, it’s pretty freaking ironic when the author of “The Ethicist” who considers “readers’ ethical quandaries” responds back to this question about breaking up with someone because they have Crohn’s by saying:

“Committing to this person may be committing to a life as a caregiver”… and… “You don’t owe it to anyone to accept that burden.”

You are not a burden.

not a burden2Referring to people with any chronic illness or disabilities in this way is not only hurtful, but extremely ableist. You can’t assume everyone with IBD is going to need a caregiver in a partner. If the author had any idea about how Crohn’s manifests, he would know that the disease is a rollercoaster…oftentimes years of being able to manage, followed by hardships, setbacks, and flares and back again.

As a 36-year-old married woman and mom of two, I have referred to my husband as a caregiver, but he’s more so my source of support and someone who sees me for much more than my disease. He would never think of me as a burden. He would never have considered breaking up with me because life could get complicated with my disease. He sees my disease as a part of who I am, but recognizes I am so much more. not a burden 3

You are not a burden.

To the 25-year-old single girl with ulcerative colitis reading this. To the parent of the child with IBD worried about whether their little one will ever find love as an adult. To the guy being talked about in the NYT article who most likely was broken up with—believe this:

You will meet people who turn a cheek once they find out you have IBD or suddenly show disinterest. It sucks in the moment. It feels like you’re getting punched in the gut. But use that pain to recognize that type of person isn’t meant to be your person. Take that heartbreak and use it to your advantage. Set you bar high. Settle for no one. Use your disease to shed light on people’s true colors. Who is going to be there when the going gets tough? Who lifts you up when you’re too weak to stand on your own? Who sees strength in your vulnerability with your health and the way you take on life? your are not a burden5

You are not a burden.

I’ve had Crohn’s for 15 years (next month!). Last night I needed to take a pain pill to quiet the gnawing pain in my abdomen. This morning I had to make a fast dash to the bathroom multiple times in front of my husband and in-laws while my kids needed tending to. I apologized for needing to go to the bathroom so many times. Even as a veteran patient who’s four years into marriage with a man who loves me unconditionally, the words of that damn article rang out in my mind. I felt the guilt and wonder creep in….am I a burden?!

No matter how long you have IBD, no matter how well you have it managed, there are still moments where you feel less than your peers. There are still moments you can’t keep up. There are still moments if you wonder whether you are enough.

Just remind yourself…and I promise to do the same…YOU ARE NOT A BURDEN. And shame on you New York Times…as a journalist, I expect more. And so do your readers.

Activism is a marathon: How to sustain momentum, while keeping IBD in check

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Our current reality and the actions, decisions, and efforts we are making are a marathon and not a sprint. Much like life with chronic illness, anti-racism is something that will be an uphill battle day in and day out. You don’t receive an IBD diagnosis and educate yourself and manage your disease for two weeks and think the work is done. You are forced to evolve, learn, see the world through a different lens, while adapting to a new normal.

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Created by @Ericiaa_ on Instagram

The racism that is a part of this country is not going to be eradicated by two weeks of social media posts and protests. But, each genuine and heartfelt decision from here on out has the power to make a huge change. By speaking up and not standing down. By recognizing your own privilege. By standing arm in arm with your peers who have suffered in silence for far too long.

Dealing with the overwhelming fatigue

Fatigue is heavy when you battle Crohn’s and ulcerative colitis, regardless of the current climate in the world. When you couple months of COVID-19 with visibly seeing the divide in our country and all the work that needs to be done, it’s overwhelming. Don’t burn yourself out, don’t feel like you aren’t able to keep up, don’t compare yourself to others.

In recent weeks, I’ve seen countless IBD patients apologizing for sharing their health struggles. I’ve seen people in hospital beds saying sorry for needing support as they head into surgery, start a biologic, or come to terms with their diagnosis. I’ve heard from people feeling guilty for needing a break from social media because the stress and worry is a trigger for their illness.

Chronic illness doesn’t take a break. Chronic illness thrives in conditions when we stop managing it and don’t make our health a priority. Chronic illness doesn’t care if there’s a pandemic going on around the world or a Black Lives Matter protest in your city that you want to be a part of.IMG-2685

It’s ok if you need to focus on you and your IBD. It’s uncomfortable seeing how divisive this world can be and the hurt so many of our friends and family face just for the color of their skin. If you’re like me, it’s made me question and rethink how I’ve navigated race all my life. I have black friends from high school that I just started having race conversations with NOW. I am 36.

Eddie

Friends since 2000. Just talked about race this week.

I have black peers in the IBD community who bring tears to my eyes with their pleas for support and great admiration for them using their voices and platforms to make a change and a paint a clearer picture for the rest of us.

I’ve started changing what I choose to watch on Netflix. We’ve watched “Dear White People” and “13th” after putting our kids to bed this week. We tuned in for the Sesame Street Town Hall on CNN about racism, even though our children are young. It’s never too early to start the important conversations with your family. I’ve started researching books with black protagonists for my kids that also discuss racism, after looking through their bookcase and realizing we only have two books with black characters.

Here are some recommendations I’ve received:

“A Boy Like You”

“Love”

“The Skin You Live In”

“The Day You Begin”

“The Snowy Day”

“Good Morning Superman”

Netflix cartoon: “Motown Magic”

Don’t burn yourself out

At the same time, we all, including myself, have a lot of work to do. This momentum, this energy, and this dedication is going to be challenging to sustain. We don’t want to burn out. We can’t put our IBD on the back burner. It’s up to us to realize when we need time to focus on our health and when we can use our voice and our heart to make a difference.

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Created by The Chronically Honest, on Instagram

If you’re feeling more symptomatic from the stress of these eye-opening and challenging days, give yourself permission to take a break from social media and the news. Your health and well-being come first, and you don’t need to feel guilty for that. If you are desperately wanting to participate in protests but worry because you’re immunocompromised and in danger of getting COVID-19, that’s understandable. Your work and your effort can be done safely at home.

You can be an ally. You can be a friend. You can be a patient. That priority list can be fluid and ever-changing. Take care of others, but always remember to take care of yourself.

IBD does not just look like me

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Like most people, the events of the past week have left me feeling upset, angry, frustrated, helpless, and at a loss for words. As a white woman I recognize my privilege and the need for change. I recognize that I can’t begin to imagine what it’s like to walk in the shoes of a black man, woman, or child.

As an IBD advocate I understand that Crohn’s disease and ulcerative colitis do not discriminate. These diseases don’t care what color, race, ethnicity, or gender you are. Oftentimes though, the lists for blogs, advocates to check out, interviews, or accolades, tend to feature people like me. When I scroll through these lists and see all white advocates it makes me uncomfortable. IBD looks like meWhen I’m part of a photo grid holding up a sign alongside fellow advocates…and it’s a bunch of white girls, it makes me feel out of touch.

Over the years, I’ve heard from black patients who are friends of mine, who have dealt with delayed diagnoses because of mistrust from physicians. I’ve heard of black patients being looked at as opioid-seekers, despite rarely going to the ER for their symptoms. IMG_8619

I want to make sure you know and are familiar with some ROCKSTAR female advocates who do a phenomenal job of being a voice for not only the IBD community, but the black community. Here are their names and their Instagram handles.

Brooke Abbott                @crazycreolemama and @IBDmoms

Shawn Bethea                 @shawnbethea_ and @crohnsandstuff

Gaylyn Henderson         @gutlessandglamorous and @gaylyn14

Myisha King                     @gameofcrohnsandchronicillness

Sonya Goins                     @sonya_goins

Melodie Blackwell          @melodienblackwell

Shermel Maddox            @shermel2

Chelsey Leanne               @chelseyleannibd

We’ve all had people in our lives try and understand what it’s like to live with IBD when they don’t have it. Through my nearly 15 years with Crohn’s, I’ve experienced the instant connection that occurs when you meet someone online or in person who understands your reality. ShawnThere’s a level of empathy and understanding that makes you feel like you are home.

In this instance, I’m not going to try and act like I fully grasp or understand what it’s like to be black with IBD. It’s important for our community to have role models who look like themselves to connect with, learn from, and admire. Especially the newly diagnosed and pediatric patients. IMG-2348

IBD is not black and white. IBD is all of us. Holding hands through this. Lifting one another up. Doing better at loving and accepting others. Making an effort to be anti-racism each and every day. Teaching our children to see the world and others with a different understanding. This is on us. We must be better.

IBD does not just look like me.

From one IBD mom to another…here are some resources to check out:

Children’s books to support conversations on race

Your Kids Aren’t Too Young to Talk About Race: Resource Roundup

Anti-racism Resources for White People

An Anti-racist Reading list (for adults)

Anti-Racism Activism Resources, Education, Stories, Books, and More

Wondering how you can make a meaningful impact? Tune in for a Facebook Live Tuesday, June 2 at 6 pm CT on the CrohnsandStuff Facebook page.

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5 Ways to Make Money At Home In The COVID-19 Era

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The way we work looks a lot differently these days than months prior. Chances are the COVID-19 pandemic has forced you to work from home, put your job on hold, or be out on the frontlines. Whatever the case may be, there are ways to adapt to these challenging times to help make ends meet. This week—a guest post from Annelise Bretthauer, a certified Financial Planner who also has Crohn’s disease. IMG_0834She offers up some invaluable advice about freelancing and educating yourself about opportunities that are right at your fingertips.

The gig economy has opened up opportunities to make money in a variety of new ways but many of these jobs are not conducive to our IBD community nor COVID-19. Although, driving for Uber or making grocery runs for Instacart offers great flexibility with work hours, it doesn’t meet our IBD needs and puts our immunocompromised community at risk. Thinking about what was available yesterday can blind us from what is available today and what might be available tomorrow. With every struggle and every hurdle comes a silver lining. We just need to know where to look.

The world will never truly be the same after COVID-19 and with that will come new opportunities. New opportunities for even more flexible work that is better suited to our IBD community. Opportunities our IBD community is uniquely prepared for.

We already know how to work from home productively. We already know how to manage hard times and keep going. We already know how to overcome daily challenges and find ways to keep our mental state healthy. We’ve been strengthening our creativity and time management muscles for years. We are strong and have developed a comfort with being vulnerable that allows us to show up in non-traditional ways that our peers cannot. To quote Brené Brown, we are masters at “being in the arena.” IMG_2273

We are wildly adaptable and we’ve already learned to find a community online and make deep connections without ever sitting face to face.

All of these things put our IBD community at the top of the talent pool when it comes to the new jobs that will be created (or established jobs that will evolve) through this crisis. Keep your eye out and your ears open. This list of 5 creative and flexible IBD friendly ways to make money at home is just the beginning!

#1: For The Typing Expert:

Write Transcripts for Audio Files

This job is ideal for those who already spends much of their day on the computer and can type quickly without error. You can make $0.25 – $2.50 per audio/video minute, which translates to ~$15-$25 per hour.

Here are a couple places to go to get started:

#2: For The Person Who Is Happy To Invest In More Education To Make A Bit More Money:

Become A Remote Tax Preparer

This job is ideal for someone who is detail oriented and thinks they could get behind making tax preparation fun and engaging. Once you complete the education (there are some costs associated with doing this) and become certified for tax preparation, you could make up to $100 per hour.

Here are a couple places to go to get started:

#3: For The Computer Wiz:

Get paid to test others websites for usability and content.

This job is ideal for those who can’t stand when a website is hard to navigate and has lots of ideas for how they could make it better. There is quite a range in pay per test (~$5-$90) but it iron’s out to an average pay of around ~$20 per hour.

Here are a couple places to go to get started:

#4: For The Person Who Loves Crossing All The T’s & Dotting All The I’s:

Become an Online Remote Notary (available in in 23 states)

This job is ideal for someone who is detail oriented and enjoys the process of making sure everything is done correctly. Although each state differs in what you are legally allowed to charge for notary services, in most states the maximum is $25 per notarization.

Here is where to go to get started:

#5: For The Early Riser or Night Owl Who Prefers Working Odd Hours:

Teach English Online

This job is ideal for someone who likes to be up early or stays up late. That is because many of the jobs are teaching English to foreigners in different time zones. Please note, many sites require a bachelor’s degree and a TEFL teaching certificate. The pay does vary significantly but most sites pay between $10-$26 per hour.

Here are a couple places to go to get started:

  • Magic Ears (need TEFL teaching certification + bachelor’s degree)
  • VIPKid (Platform offers TEFL certification but you will need a bachelor’s degree)
  • ET Teach Online (need TEFL teaching certification + bachelor’s degree)
  • Cambly (no experience needed)

If none of the options above speak to you or you aren’t sure where to start, check out Chronically Capable. Chronically Capable is a job site designed only for those with chronic illness. You can browse for jobs that have already been pre-screened by their team – pretty awesome huh!? IMG_7756

From one IBD warrior to another, don’t ever lose sight of your worth. Your skills and your adaptability will rise to the top of the talent pool. We can’t pour from an empty cup, so remind yourself that self-care is other’s care.

If you’ve ever been curious about how others make, save and spend their money, feel free to check out Annelise’s podcast, This American Wallet. She interviews different people from different walks of life about money. Available for a listen on Apple podcasts, Spotify, Stitcher or Google Podcasts.  

Disclaimer: This article is for informational purposes only and is not to be taken as advice of any kind. All pay estimates were made in best efforts given the informational available via each company website.

 

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

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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.

SymptomsUlcerativeColitis

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.

Seeing the beauty through the struggle: IBD mom welcomes third child amidst COVID-19 pandemic

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Welcoming a baby into the world brings so many emotions to the surface. For IBD mom, Suzy Burnett, of Madison, Wisconsin, it’s been a rollercoaster. She had her third baby, Guy Richard, February 29th. IMG_0146Right before COVID-19 started wreaking havoc in the States. Before Guy was born, Suzy’s biggest fear was a postpartum flare. After the birth of her second oldest daughter, Alice, she had the worst Crohn’s flare of her life and was hospitalized.

Now, as her and her family face the COVID-19 pandemic, she has a new set of concerns. Will Guy be able to stay healthy until his immune system matures a bit? How will her daughters adjust to the new addition? Will she be able to stay well despite being immunocompromised? COVID-19 added a whole new slew of uphill battles that she or anyone else for that matter hasn’t been prepared to deal with. This week Suzy shares her perspective as an IBD mom, doing all she can to protect herself and her family in the face of this viral war.

As anyone who has ever had a baby, you know those first two weeks, involve several doctor appointments. Guy still had high bilirubin levels when we brought him home, so this meant we needed to make extra trips to his pediatrician. Sounds easy, right? There was so much involved this time around. Babies don’t have that immunity built up yet, so we had to use a special entrance, and go straight to our room to avoid any contact with the public. I couldn’t help but glance at the waiting room and see all the long faces adorned with facial masks. It was swimming with sick kiddos. I felt incredibly lucky at that moment as we escaped the chesty coughs, and furniture that had been saturated in illness.IMG_0147

One week went by, and things quickly changed to Zoom and FaceTime appointments. Not only did the baby’s appointments change…but mine did as well. Those of us with Crohn’s disease can’t always get by with a virtual chat about our symptoms. But here we are.

Navigating health issues brought on by my IBD

Many people with IBD develop extra-intestinal manifestations. IMG_0144Unfortunately, when I was put on prednisone last summer, I developed extremely high eye pressures. I was diagnosed as “Glaucoma suspect” at 40 years old, meaning I have some risk of the disease, but no proven damage (yet), so my eyes are monitored often.

I’m also dealing with an external hemorrhoid, thanks to excessive diarrhea, along with an anal fissure, all while caring for three children—one being a newborn.

For those of you who don’t know, an anal fissure is a small tear in the thin, moist tissue (mucosa) that lines the anus. I’m treating the fissure with topical lidocaine and a suppository three times per day. I’ve had my fair share of pain, but this ranks right up there with my non-sedated sigmoidoscopy and childbirth. It feels like broken glass, or razor blades back there. There’s a chance this has progressed to a fistula, and I may require surgery in the weeks to come.

Normally, I would be seen right away, but due to the current COVID-19 crisis, it’s been several phone calls back and forth with the nurses triaging my symptoms. I’m confident the hemorrhoid will go away, but if the fissure doesn’t, I might be facing surgery, and right now a trip to the hospital could be life threatening.

Seeing the beauty through the struggle

Amidst this horrific event that is crippling our world, there is an unexpected beauty that has surfaced. Our wonderful party of five has become closer than close. Yes, there are times when we all go a bit loony, but we’re embracing this time together. My kids are my world, my everything. I need to be the best version of myself, and a huge part of that now and forever is not letting my IBD win. Even when my disease has a strong hold on me, I never let my kids see the struggle.

If you’re reading this and you’re unsure about whether you’ll be able to handle your IBD and motherhood, I’m here to tell you it’s possible. IMG_0148As a woman and a mom of three who has battled Crohn’s since 2008, I believe if it’s your dream to have children, or a family, you should most definitely pursue that. Consult with your GI and OB doctors prior to getting pregnant, and make sure you’re in remission. Pregnancy can be challenging, but if you’re also flaring, it’s that much harder.

As we all experience the change in our day-to-day lives during the COVID-19 pandemic, whether you have IBD or not, there has been a return to simplicity. A back to basics mentality that is exponentially refreshing. Take a walk outside and breathe in and out. Right now, we’re forced to take our time, dig deep, and focus on our inner beings. Much like the experience of dealing with the diagnosis of IBD, it’s a time to peel back those layers and re-discover YOU.

Follow Suzy’s journey by checking out her blog: Crohnie Mommy 

 

 

The race for a cure: How clinical trials are taking on COVID-19

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Clinical trials are the guiding light when it comes to discovering life-saving medical breakthroughs. Now, more than ever, they are critical for ensuring treatments and vaccines to combat COVID-19 are safe and effective. IMG-9966 Citruslabs is currently offering research organizations their patient recruitment service and software free of charge for COVID-19 trials. Their goal is to make an impact by accelerating the research needed to find a vaccine and treatment for this condition sooner rather than later.

“Without clinical trials, there is no innovation in medicine. Since there is currently no cure or vaccination for COVID-19, it is essential to test potential treatment methods as soon as possible and to speed up the process so that we can slow this virus down and all move on with our lives. We know that patient recruitment is a big issue in the clinical trial industry. We want researchers to do what they do best: conduct research, see patients, and let others, like Citruslabs, worry about patient recruitment,” said Susanne Mitschke, CEO and Co-founder, Citruslabs.

Susanne

Susanne Mitschke, CEO & Co-fonder, Citruslabs

Right now, clinical trials are looking for people infected with coronavirus, as well as healthy individuals. Healthy people are the key group needed for vaccination trials. Currently, there are around 12 different potential treatment methods being tested—finding a cure for people who are already infected with COVID-19 and finding a vaccination that prevents people from getting the virus in the first place.

As you can imagine, aside from COVID-19 trials, the clinical trial world has come to a screeching halt. Patients are scared to come to screenings or continue with their study visits because of COVID-19.

The trials to treat infected COVID-19 patients are targeting the most severe cases and mostly treat ICU patients. Citruslabs isn’t working on those trials, as it’s hard for them to identify patients who are in the ICU. Their expertise lies more so with clinical trials for vaccines.

The race to discover a safe COVID-19 vaccine

Even though clinical trials for COVID-19 are accelerated right now, to ensure a vaccine works and is safe, still takes time. This is why it’s expected a vaccine for COVID-19 won’t be approved until at least March 2021. stay-home-save-lives-4983843_1280

To give you an idea of just how accelerated the race to get a COVID-19 vaccine is, on average clinical trials for vaccines take 10 years! First, research must be done “in vitro”, then, usually the vaccine is tested on animals and the last step is human clinical trials (three phases for FDA approval). Most companies then continue with a Phase 4 trial to collect “real-world evidence” and test the drug with tens of thousands of patients.

“The good news when it comes to COVID-19 is that researchers have investigated other Coronaviruses: SARS (from 2002) and MERS (from 2012). The current Coronavirus has 80-90% similarity to the SARS virus from 2002, which is also why doctors call the virus SARS-COV-2. When it comes to COVID-19, some trials focus on live but weakened virus forms. These have drawbacks because they can still make the host (the human being) sick! Newer approaches are looking at the genetic code of the virus, which seems in light of COVID-19, a safer approach,” explained Susanne.       corona-4983590_1920

COVID-19 Symptom Tracker

Citruslabs is collaborating with other research organizations to find the right patients for clinical trials. One of those companies is Lazarus, which created a symptom tracker to identify those who are likely to have COVID-19. Their software advises patients if they should stay at home (self-monitoring), visit their primary care physician, or even go straight to the hospital. You can find a link to their tracker here.

How to get involved and help

So, what can we do as the general population right now—other than STAY HOME to minimize the spread? Taking part in clinical trials can really save lives, now more than ever. If you are interested in taking part in a clinical trial to find a vaccine for COVID-19, head over to https://bit.ly/2wMS3Ja and fill in your information. A research team will be in touch with you about suitable trials in your area.

The backstory on Citruslabs

Founded in 2015—Citruslabs is the link between patients and research organizations. Their sole focus is to find the right candidates for the right clinical trials. Currently, 86% of clinical trials don’t meet their patient targets. Citruslabs is working tirelessly to change that. When clinical trials can’t be completed it puts researchers in limbo because they are not able to collect enough data to the safety and efficacy of new treatments. As a result, many drugs never make it to market.

As of today, Citruslabs has worked with more than 200 clinical studies and reached more than 3 million patients. But their work is just getting started. Over 50% of Americans are not aware of clinical trials. CitrusLabs

“We want to change this by providing transparent information about the importance of clinical trials, their benefits, but also their risks so that individuals can make an informed decision if they want to join a clinical trial or not,” said Susanne.

In the months to come, stay tuned to Lights, Camera, Crohn’s for more information about how Citruslabs is working to drive research related to Inflammatory Bowel Disease. For now, though—the focus remains on COVID-19 and doing all they can to rise to the challenge and make a difference.

Click here to learn more about how Citruslabs is fighting the fight against COVID-19.

This article was sponsored by Citruslabs. All thoughts and opinions shared are my own.