Navigating new mask guidelines: What the IBD community needs to know

With mask mandates ending for most states across the country and the CDC once again changing its guidance about masking, it’s a cause for concern for many who are immunocompromised or considered higher risk for Covid-19. As an immunocompromised mom of three kids under age 5, I feel a bit uneasy about the shift in measures, even though I had Covid-19 in January. I contacted my GI this week to ask her opinion on the mask mandates lifting and navigating this time as an IBD mom. She didn’t hesitate for a second and told me to keep masking—not only for myself but because of my kids. She herself hasn’t stopped masking in public and doesn’t plan to anytime soon.

I polled my followers on Twitter and Instagram by asking: “Do you still wear a mask in public, indoor spaces?” Nearly 500 people responded. On Instagram, 69% responded “yes” to still wearing masks and 31% responded “no”. On Twitter, 88% responded “yes” and 12% responded “no”.

This led me to dig a bit deeper and hear what several top gastroenterologists who specialize in inflammatory bowel disease had to say on this controversial and politicized issue.

Dr. Aline Charabaty, MD, Assistant Clinical Director of the GI Division at Johns Hopkins School of Medicine, and the Director of the Inflammatory Bowel Diseases Center at Johns Hopkins-Sibley Memorial Hospital, offered several fantastic analogies for the IBD community. The one that really hit home to me was talking about family planning and remission in Crohn’s and ulcerative colitis. If you are flaring and want to start a family, the rule of thumb is to be off steroids for at least six months to ensure disease activity is calm. We JUST got through the rampant spike in omicron cases last month. In her opinion, going maskless this soon after that highly contagious variant is premature. She believes we need to wait longer to make sure we are out of the woods and that conditions need to be more stable for a longer period of time. Until then, she recommends those who are more susceptible in the IBD community continue to mask as an extra safety net.

“We are not out of the pandemic. Sure, there are less deaths and fewer severe cases, but people are still getting sick. We saw this happen when we let our guard down and delta hit…then omicron. When you are driving, you wear a seatbelt, follow the speed limit, try not to tailgate, and follow the rules of the road. These are all precautions to drive safely to your destination and avoid an accident. You don’t just do one thing to prevent a car accident. With Covid, we got the vaccines, we’re wearing masks, we’re limiting exposure to large crowds, and measuring risk versus benefit for each of our decisions. It’s not a pick and choose situation of how to keep ourselves and others out of harm’s way.”

Dr. Charabaty went on to say why get sick with something when we really don’t know the long-term effects. We already see Covid can cause a higher risk of depression, heart disease, and autoimmune issues.

“Wearing a mask is such a simple measure. If it adds a benefit, I don’t see why people are saying no to this. This virus can really change your body. Why not add another layer of protection to prevent illness? There are no downsides to wearing a mask, so why not wear it? When you are out and about there are people with weakened immune systems, cancer patients, organ transplant recipients, people on multiple IBD medications…why put these people at risk of infection? The more Covid is transmitted, the higher the risk of mutation, which will cause yet another spike. Each variant has been a result of people letting their guard down to soon with their decision making.”

Dr. Neilanjan Nandi, MD, FACP, Associate Professor of Clinical Medicine, Gastroenterology, Penn Medicine, agrees that while case numbers going down is reassuring, that we are not out of the woods yet. To him, a mask is a sign of empathy for others.

“It’s not about us…whether it’s a caregiver or a family member or friend, this shouldn’t be looked at as an encroachment on our freedom, but rather about showing respect for those around us. The best thing we can do is mask up. Wearing a mask in public, indoor spaces is a smart move because you don’t know the immunization status or exposures of people you don’t know. If you are planning to see family or friends and know people’s vaccination status or if they’ve recently had Covid, you might feel more comfortable not wearing a mask.”

Pre-pandemic photo-May 2019 with Dr. Nandi at Digestive Disease Week in San Diego.

Dr. Nandi reiterated the fact that we’ve learned over the course of the last two years that most of our IBD medications don’t cause an increased risk and may even be protective. While this is reassuring, if you are on 20 mg of prednisone or higher, he highly recommends you mask up as you are more susceptible to illness.

Dr. Uma Mahadevan, MD, Professor of Medicine, and Director of the UCSF Colitis and Crohn’s Disease Center, says every region of the country is different and that your location should be taken into account.

“In the Bay Area we have a high vaccination rate and a low hospitalization rate. You also have to consider the patient’s personal risk and risk aversion.”

Here’s what Dr. Mahadevan tells her patients.

  1. Follow local guidelines for masking
  1. If you are vaccinated and boosted and are in a low-risk area with no mask mandate, its ok to not mask, particularly outdoors. Indoors in crowded shopping areas, etc., I would still consider masking. However, again, low risk patient in a low-risk region, it’s ok not to mask.
  2. For high-risk patients on steroids, double biologics, severely active disease, etc. I still recommend masking.

Dr. Miguel Regueiro, MD, Chair, Digestive Disease and Surgery Institute, Chair, Department of Gastroenterology, Hepatology & Nutrition, Cleveland Clinic, is hopeful we’re headed to what we see with influenza. While of course flu can still be serious and deadly, with enough people vaccinated and exposed to Covid, we can have herd immunity.

“We’re all learning as we go and there’s a lot of “grey” with nothing very “black or white.”  For now, I am recommending IBD patients continue to mask. For those who are immunocompromised, wear a mask in indoor spaces, especially crowded spaces such as airports. In outdoor spaces, it is less clear, but masks are probably a good idea when social distancing is not possible.”

Pre-pandemic photo-May 2019 with Dr. Regueiro at Digestive Disease Week in San Diego

Dr. Peter Higgins, MD, Ph.D., M.Sc., Director of the IBD Program at the University of Michigan, says if a person is unvaccinated, masks are a must. He encourages you to talk with your doctor about Evusheld, a monoclonal antibody against Covid-19 for immunocompromised people and those who cannot be vaccinated for medical reasons.

“If the county you live in is below 10 cases per 100,000 people (CDC is saying 200/100,000 for the non-immunosuppressed), then you can consider not wearing a mask. But admittedly, this is an arbitrary number and 200 cases for every 100,000 people seems too high for the immunocompromised population. Especially if you are around kids, the elderly, or those who have not been able to be vaccinated, showing solidarity and wearing a mask is highly recommended.”

He explained that eating indoors with good ventilation is OK, but that is it hard to prove unless you have a CO2 monitor that can show a consistent CO2 ppm (parts per million) < 650. To give you an idea, Las Vegas casinos have good ventilation systems in place to keep restaurants free of smoke and those measure between 400-450 ppm. Dr. Higgins still recommends people do a rapid test within 12 hours of gathering with friends and family. He adds that as we learn more about long Covid and new variants guidance may once again shift.

Dr. Harry J. Thomas, MD,Austin Gastroenterology in Texas, also recommends patient who are immunocompromised (especially those on anti-TNF’s, prednisone, and other immunosuppressants) to mask up.

“I empathize with people who are worried about being judged by others and I recommend that they share — if they feel comfortable — that they (or their family member) have a chronic disease that places them at higher risk. I do feel that abandoning masks right now is premature, especially here in Texas as well as in other parts of the country with lower vaccination rates. I’m not sure if/when there will be another spike, but we still have about 2,000 COVID deaths each day which is really tragic and indicates that the pandemic is far from over.

My personal take

Personally, my husband and I still wear masks in public, indoor spaces. Our children who are in preschool are one of the few who are still wearing masks at their school. While I understand each person has the right to make their own personal decision for themselves and for their families, it’s disheartening and honestly disappointing to see the lack of care for others who are not fortunate to have the luxury of being healthy. I can’t tell you when I’ll feel safe enough to go into a grocery store or the mall without a mask on, it’s going to take time and assurance from my care team that I’m not making a rash decision that could put myself, my family, or even strangers at risk. It’s complicated. I get it.

My daughter at preschool this week. Still masked up.

When you’ve lived with a chronic illness like Crohn’s disease for nearly 17 years and been on immunosuppressive drugs ever since, your perspective shifts. You quickly realize you are not invincible. You recognize and empathize with those who have health struggles and depend on the greater good to make sound decisions. It’s a small act of kindness for the sake of health and safety. Talk with your care team about navigating this new normal. Don’t base your judgements on social media, the news, or your political beliefs. This is an ever-evolving discussion. It’s been a long two years. We’re all tired. But that doesn’t mean apathy is the answer. You may not care, but you are making a statement to those who are vulnerable when you go maskless indoors.

It’s ok to be unsure. It’s normal not to want to be judged or feel your kids will be outcasts if they’re the only ones at school masking. It’s understandable to feel a bit lost about what is best. But if a mask makes you feel comfortable, safer, healthier, you do you. Know that the medical community and so many others stand in solidarity with you.

IBD Motherhood Unplugged: Being an Ostomate through pregnancy and beyond

Pregnancy and motherhood look differently for women who have an ostomy. And not just physically. But also, emotionally, and mentally. The path to motherhood is unique for those of us in the IBD community and we’re living at a time when more research about pregnancy and breastfeeding is right at our fingertips, all of which sets IBD moms and moms-to-be up for success.

Whether you’re on the brink of needing an ostomy and fearful of what this means for your future. Whether you’re a mom of a young girl and worry about whether your daughter will ever be able to be a mom. Whether you’re newly diagnosed and can’t imagine your damaged body bringing a life into this world. Whether you just took a pregnancy test after a bag change and can’t believe it’s positive and don’t know what to do next. These transparent and real-life patient stories will bring you hope and help empower you in coping, preparing yourself, and working with your care team, if carrying a baby is something you hope to do one day.

This week we hear from several ostomates—some who are moms, others who are pregnant right now, and two women who got pregnant after having a proctocolectomy (removal of rectum and colon).

Krista Deveau was diagnosed with ulcerative colitis as a child. After having two bowel resection surgeries and her ostomy surgery over the course of 10 years, she was worried about whether being a mom would ever be an option.

The reason for getting a temporary ileostomy and avoiding even more scar tissue, was because of I wanted to start a family with my husband in the years to come. To my surprise and my GI’s surprise, we got pregnant much easier than expected, truly a blessing because this isn’t always the outcome for everyone.” 

She’s now 24 weeks pregnant and expecting her first baby in June! Krista says this is the best she’s ever felt. Her symptoms have been silent aside from having phantom rectum/poop and passing mucus more frequently lately.

Krista is on a dual biologic treatment plan (Stelara and Entyvio) every 4 weeks. She plans to stop her Entyvio treatment at 32 weeks and resume her infusion in the hospital after she delivers. She’s still in the process for determining her game plan with Stelara. She also takes prenatal vitamins, vitamin D, and b12 shots. She expects she’ll need iron infusions before baby arrives.

As of now, she plans to do a vaginal birth. Due to not having perianal disease and already having significant scar tissue and adhesions from previous surgeries, her care team determined this plan with her. Like any IBD mom-to-be, she worries about the ever-present threat of a postpartum flare, having to be hospitalized and be away from her baby, and possibly passing her disease onto offspring.

Katie Cuozzo was diagnosed with Crohn’s disease when she was 5 years old. She’s had concerns about not being able to get pregnant for as long as she can remember. Now, she’s 34-years-old and a mom of three girls. Her oldest daughter was 18 months old when she received her ostomy, so she’s been pregnant with and without a bag.

“The only difference that I noticed between pregnancy with an ostomy versus without was how to dress. As my stomach was getting bigger, it was a little harder to disguise my bag. I would mostly wear baggy clothing. With my first pregnancy, I was able to deliver vaginally, I had c-sections with my younger two.”

Katie’s perianal disease got significantly worse after delivering her firstborn. Originally, she was planning to have a temporary colostomy, but her symptoms didn’t improve so she decided to get a total colectomy. Despite her IBD causing her so many issues, Katie was able to conceive on her own without any problems.

She remained on her medications during all three pregnancies. She took Cimzia during her first pregnancy and Stelara during her other two pregnancies. Katie also continued to take her prenatal vitamin, vitamin D, vitamin b12, and calcium supplements. She also breastfed all her children.

“As I was planning for ostomy surgery, my surgeon told me that if he did a total proctectomy- removal of my rectum, my chance of fertility would decrease significantly. I made the choice to keep my rectum in place until I was done trying for more kids. I am now at a place in my life where I am beyond blessed with my three daughters and am ready to have my final surgery to remove my rectum, knowing that I will likely never be able to have more kids.”

Katie says she was amazed at how great she felt while pregnant. It was the first time in a while she was having regular, normal bowel movements and was able to eat anything and everything without having abdominal pains and needing to run to the bathroom.

Katie Nichol was diagnosed with ulcerative colitis in 2018 when she was 30 years old. She went through an emergency subtotal colectomy surgery in October 2019 to remove her diseased large bowel/colon and an ileostomy was created.

I was told that I would keep my rectal stump to further my chances of being able to have children in the future, but my doctors told me to seriously think about having my family before my next operation, either a total proctectomy or j pouch surgery. Personally, I never thought I would ever be able to get pregnant after surgery as it was such a big life change and a lot of trauma had happened in my abdomen with surgery.”

Katie and her husband had been trying to conceive since before her IBD diagnosis. She didn’t know anyone in real life with a stoma. It made her anxious as she was unsure how her body would respond if she got pregnant and how it would affect her stoma, intestines, and overall health.

“After receiving my ileostomy, I felt so much healthier, happier, and started to think that my body would be able to conceive and start our family. My IBD team and surgeon kept saying at appointments post op that if I wanted a family I would need to start trying in the next couple of years before my next operation.”

Katie says her surgeon wanted to ‘preserve her pipes’ and advised her that a vaginal birth may cause some damage from pushing. Her care team warned her about the possibility of her rectal stump or stoma having the chance to prolapse, so she went ahead and scheduled a c-section.

 “One surprise I used to get was when the baby was lying to my stoma side (right hand side) it would sometimes look like I had a hernia around my stoma sight, but the baby was underneath my stoma, this freaked me out a good few times, but it was amazing to see the baby move and my stoma still standing strong on my stomach.” 

Katie took prenatal vitamins, iron, and was on a rectal foam for her rectal stump while she was pregnant. Since her stoma surgery, she is no longer on medication. Now she takes suppositories for her rectal stump before bed.

Receiving a Total Colectomy as a mom of two

Kimberly Hooks was diagnosed with ulcerative colitis in 2011. She was 28 years old. Her oldest daughter, Briana, was five years old when Kimberly received her IBD diagnosis. After nine years she was able to reach remission and became pregnant with her second child. Kimberly had a three-stage J-pouch procedure between the fall and spring of 2020. She was an IBD mom of two while all of this was going down.

“I honestly did not want to accept that I had to have three surgeries. I was utterly devastated when I found out that I had to have a total colectomy. My surgeries were scheduled during the height of the pandemic in 2020. Mentally, I could not wrap my head around the fact that I would not be there for my family, especially during this critical time in our lives. I felt hopeless; I felt defeated as a mother and wife.”

Kimberly’s colectomy was unexpected. She did not have time to process anything.

“We often put ourselves last; however, I was not given a choice in this case. The reality was I had two more surgeries to undergo, and I understood that I have a family that loves and supports me. I realized this was my time to ensure that I did what I had to do to heal, recover, and finally be the best mom and wife I could be.”

The experience impacted Kimberly and her family in the most positive way. Her husband and daughters rose to the occasion day after day to offer love and support and saw Kimberly as their hero. She was discharged from the hospital after getting her ostomy on Mother’s Day and her daughters made her signs and gave her flowers.

“All the while, it was me who had to accept that living with an ostomy is something to be proud of. At first, mentally, it was a hard pill to swallow, but after awhile I realized that my ostomy bag saved my life; I will be forever thankful!”

Pregnancy after a Proctocolectomy

Kayla Lewis was diagnosed with Crohn’s disease at age 10. When she was 24, Katie had surgery and received her ileostomy. She says that’s the first-time fertility and her future as a mother crossed her mind. Then, in 2017 she became incredibly sick. She tried what she thought was a temporary ostomy for six months. Then in a follow up scope her GI perforated her bowel.

“When I woke up, I was informed that my entire colon was scar tissue so much that the camera could barely go into the bowel before perforating it. At that point, I was told my options were to leave the colon and rectum or schedule to have both removed, but either way, the ostomy was suddenly permanent. I did not want to resort to that initial surgery till I knew I had exercised all other options available to me including meds, treatments, and diet. Being that surgery was my only hope at gaining life back, I never fully questioned how it would affect my fertility. I did briefly ask the surgeon if I can still have kids one day. He responded with a simple ‘yes’ and I left it at that.”

Even though Kayla says she still would have continued with her proctocolectomy regardless, she wishes she would have thought to ask more questions. Thanks to her ostomy, Kayla has been in remission for 5 years. She felt like family planning could be on her own terms.

“Being 12 weeks pregnant with an ostomy has been much smoother than I had envisioned for myself. I work as a nurse in an operating room, so feeling nauseous and vomiting was my biggest concern early on. I have a small body frame, so maybe once the bump starts to show, I will experience stoma changes. Hopefully, nothing more than just cutting the wafer a bit smaller or larger.”

Currently, Kayla takes Imuran and Allopurinol daily and injects Stelara every 8 weeks. She also takes a prenatal vitamin.

“I was always told that when the time comes for me to become a mom, it would have to be via c-section and not vaginally. I knew this well before my ostomy, because I was warned how difficult it could be for me to heal from tearing as well as could trigger a flare. After my proctocolectomy, I knew without a doubt, I would need to schedule a c-section to play it safe.”

Lori Plung was diagnosed with Crohn’s Colitis in 1980. She was 16 years old. Two years after her diagnosis her disease became severe. As she reflects, she remembers being very worried about ever being healthy enough to be a mom.

“My mom was told by my GI at the time that he didn’t have a good feeling about me being able to have children. This was not shared with me at the time, and this was well before surgery was mentioned to us.”

In 1988, Lori had a proctocolectomy. She remembers lying in the hospital bed before her surgery and a local IBD mom and her toddler coming to visit and show her all that’s possible with an ostomy.

“I believe what was missing, was a conversation with my doctors about how my anatomy would change after surgery and the possibility of scar tissue building up near my ovaries, fallopian tubes, and uterus. Therefore, making it harder to conceive. When it was time for us to try for a family, we couldn’t conceive on our own. In the back of my mind, I knew my insides were shifted around and I had a strong suspicion that mechanically things were not working correctly. We tried for about 6 months and started investigating fertility options. We didn’t wait the full year as often recommended because I was feeling well —and as we know with IBD, when the disease is under control, It’s the optimal time to be pregnant.”

Lori went through many fertility treatments and said no one blamed her proctocolectomy as the culprit. She ended up having scar tissue on one of her fallopian tubes. She got pregnant with her first child through IUI (Intrauterine insemination) and her second through IVF.

She remembers telling her husband she didn’t want their kids to have memories of growing up with a “sick mom.” She had three more IBD-related surgeries, numerous hospital stays, and says her energy was drained, but she prided herself on her inner strength and determination to always push through no matter what.

Lori says if she could talk to her former self, she would tell herself not to feel guilty about needing to stay home and do quiet activities because she was having a hard Crohn’s day.

“Not to be hard on myself when we sat and watched Barney (my daughter Dani’s favorite) or Teletubbies (my son Jesse’s favorite) because I was too exhausted to move. Not to feel guilty when everything fell on my husband, especially through each surgery and recovery. It’s ok to ask for help and not feel guilty.”

Lori’s kids are now 23 and 26. She still can’t believe she’s been able to be a mom and be there every step of the way as her kids thrived through each stage and season of life.

Advice for fellow ostomates about pregnancy

  • If you have an ostomy, you can have a baby. Don’t let your ostomy hold you back. Work with your care team to know when the right time is and if there would be any issues with getting pregnant.
  • The body has a way of coping no matter what. Your past trauma prepares you to handle the unknown and celebrate every win—big or small, along the way.
  • Keep the faith. You may run into roadblocks but exhaust all options before you throw in the towel. Miracles happen every day, stay hopeful.
  • Find a care team well-versed on IBD. A medical team who understands your complexities and who is supportive will make your experience with pregnancy and an ostomy a positive one. Have all hands-on deck and connect with your IBD team, surgeon, ostomy nurse, and Maternal Fetal Medicine (MFM) group. It will give you a sense of security as you embark on this wonderful and exciting adventure. Your ostomy nurse will be a huge resource—as your belly grows, so will your stoma.
  • Be mindful of ultrasound gel. Be prepared at OB-GYN and MFM appointments by bringing extra bags and wafers. Try and make sure your ostomy is empty prior to ultrasounds and then fold it up or hold it up to keep it out of the way. Ultrasound gel can make the adhesive come off. Many of the IBD moms I spoke to said they change their bag after every ultrasound to make sure all the gel is off their stomachs, so the new bag can stick on properly.
  • Stoma size and output. Don’t be alarmed if the size of your stoma changes as your baby bump grows. Stomas go back to their pre-pregnancy size after babies are born. For some, output can get thicker, and you can have more gas, but that’s likely due to being able to tolerate more fruits and veggies. As your belly grows, your bag may dangle rather than being tucked away and become a bit uncomfortable.
  • Remember everyone’s journey is unique. While each of these amazing women are sharing positive pregnancy experiences, don’t forget all the roadblocks, flares, and health issues they had to overcome to get to this point.
  • Ostomies gave you life and enable you to bring life into this world. For many IBD moms it’s surreal to experience your body go from attacking itself to nurturing and creating a life. Pregnancy provides a renewed love and appreciation for all that our bodies are capable of, despite our IBD.
  • Connect with other ostomates over social media and through support groups. Don’t hesitate to reach out to women who are living your same reality on social media. We’re all a family. Peer to peer support is amazing, reach out to fellow IBD moms. Here are the Instagram handles for the women featured in this article. Give them a follow!
    • Krista Deveau–@my.gut.instinct
    • Katie Cuozzo–@kati_cuoz
    • Katie Nichol–@bagtolife_
    • Kimberly Hooks–@kimberlymhooks
    • Kayla Lewis–@kaylallewis_
    • Lori Plung–@loriplung

Putting Specialty Pharmacies on Blast (cough, Accredo)

Ah, specialty pharmacies. Just hearing those two words probably makes you feel a certain way. I’ve been coordinating my Humira through mail-order shipments since July 2008. Nearly 14 years now. Since that time, I’ve dealt with several different pharmacies. Each job change or insurance shift has resulted in a specialty pharmacy update. Lucky for me, each transition has been seamless. Except for now. My husband’s company switched specialty pharmacy providers at the start of 2022. I went from using Alliance RX Walgreens to Accredo Express Scripts.

The first shipment went well, but my second month was a mess. I’ve ordered Humira monthly—163 times to be exact. This was the FIRST TIME I didn’t have my medication on time and had to do my injection late. This week on Lights, Camera, Crohn’s a look at the literal and proverbial headache countless chronic illness patients are forced to deal with month after month and my advice as a veteran Crohn’s patient for all specialty pharmacies moving forward.

Here’s how it all played out (This ordeal gave me a pounding headache)

I ordered my Humira over the phone like I always do, and I was told it would ship to me on Thursday, February 3 and arrive on my doorstep February 4. That day came and went. Radio silence. Crickets. No communication about a delay due to winter weather. Mind you, the roads were cleared, and the snow had stopped the day prior.

I called Express Scripts on Saturday, February 5th and spoke with 2 call representatives, or as they call themselves “patient care advocate representatives” …insert laugh. Both representatives were incredibly dismissive and told me conflicting information. The first told me the shipment went out FedEx on the 3rd…but that she didn’t have a tracking number. She insisted on giving me the number for FedEx so I could track down the shipment or go to a facility to pick it up. Um, no. I refused and told her she should be able to track it down for me and that this was not my responsibility. She told me I could talk with a pharmacist about my concerns about my temperature-controlled medication being out in the elements during the Midwest winter for five days.

She puts me on hold for 10-minute stretches, and finally after 3 times, I ask to speak to a manager. She tells me she has a manager on the line and that she’ll connect me through, but I end up on hold, again. Finally, she returns and tells me the supervisor can’t receive her call, so I tell her to just call me back directly.

While this is going on, I have another call going through on my husband’s phone in hopes of getting through to someone. That representative was even MORE dismissive. Did not apologize. Acted like I had an attitude and told me there was nothing she could do.

When the “Resolution Team Leader” called me back directly she informed me that shipments go through UPS, not FedEx. Wow. Good to know. Glad I didn’t waste more of my time trying to get through to a FedEx facility on a Saturday. She told me that unfortunately the soonest medication was able to be shipped to St. Louis through their Memphis UPS facility (I learned that’s where my Humira comes from) would be Monday, but most likely Tuesday (Feb. 8).

Here’s why this is so problematic

IBD patients and chronic illness “customers” of specialty pharmacies are on scheduled medications, in my case, a biologic. This isn’t something that you can just delay because ‘oh well, it’s sunny and 45 degrees, it will come in a few days’. Lucky for me, I’m in remission with my Crohn’s disease. What if I was flaring? What if this was a loading dose of the medication that I needed to receive? What if I was traveling and had planned to pack my injection with me? What if I had been off my medication to deliver a baby and needed to start it back up? What if I were pregnant and couldn’t chance missing a dose? There are so many complicated scenarios. This isn’t a pair of leggings I ordered off Amazon that can wait a few days. This is medication that controls a debilitating and unpredictable disease.

Here’s how Express Scripts and pharmacies can do better

Basic business etiquette with customers (aka your patients). Don’t belittle, diminish, or act like you could give two shits about the other person on the line. We are chronically ill people who are juggling a million balls in the air at once to function like the rest of society while managing our health. The last thing we want to do is waste our precious energy going back and forth on the phone and having to stress about getting the medication we depend on to function.

  • If there is inclement weather or a reason for medicine to be delayed, you should be sending text and email alerts. I was told by the Resolution Team Lead that I was only partially opted in for these—mind you, this was my second re-fill of medication with Express Scripts. The first time a patient sets up an order this should be discussed with a patient over the phone.
  • I’ve been receiving specialty pharmacy medication in the mail since 2008. This isn’t my first rodeo, but this is the first time I’ve ever had medication delayed. Mind you, I’ve lived in Minnesota, Wisconsin, Illinois, and Missouri this entire time and encountered snowstorms and blizzards each winter without delivery issues. The snow stopped here on a Thursday…but my medicine can’t come until a Tuesday through UPS? Mind-blowing.
  • Since I was not notified on this delay, I spent all day checking my front porch, anxiously awaiting the delivery so it wouldn’t sit out and freeze on my doorstep. If I wouldn’t have proactively followed up the day after my medication was to arrive, I would have had no way of knowing when my shipment was going to arrive or what happened.
  • The onus of this should not be on the patient. We’re paying THOUSANDS of dollars for medications. The burden of this should be on the specialty pharmacy who has the job of coordinating prescriptions and making sure they are shipped.
  • Talk with patient advocates from all disease areas to help you learn how to best communicate and coordinate care. This blog is free advice. If you want invaluable insight like this moving forward, be prepared to compensate patients to share their viewpoints that you wouldn’t otherwise have. Give us a seat at the table to inform you of the shortfalls and the wins so you know where the improvements can be made and where you are successful.
  • Be kind and understanding when doing these phone calls. Think about the patient who is person on the receiving end who is calling about medication with a laundry list of side effects. It adds salt into the wound when your experience coordinating medication shipments is so negative and unempathetic. We are not just numbers.
  • As patients our hands are tied. We must go through the specialty pharmacy allocated to us through our insurance. You have that going for you. Now you literally have one job… to do yours.
“Sincerely” want to help, yet never reached out as they claimed they would over tweets and direct message. That “empathy” is clearly all for show.

I tapped into the IBD community on Instagram and was blown away by the number of direct messages and comments from those who have struggled to get their critical medication through specialty pharmacies. This is unacceptable and eye-opening. Here are *some* of the stories.

“I will never use Express Scripts for my Humira, again. When I started it, I couldn’t walk or stand or do anything really because of my ankylosing spondylitis. They had the audacity to tell me I can expect my first shipment of medication in 1-2 months because there’s a lot of “processing involved.” They were acting like they were making the drug themselves. It had nothing to do with pre-certification. Everything was already processed and approved through insurance. Luckily, I was able to get my injections from a local specialty pharmacy the same day I called.”

“The number of issues I’ve had over the years with specialty pharmacies is ridiculous. My GI has an unlimited expiration/refills for my prescriptions, yet every year we must “renew” and it’s never at the start of the year. It’s always some random time when my shipment doesn’t go out as scheduled and the only reason, I find out is because I call and question the delay. They’re NEVER proactive. One of my most frustrating situations was a delayed delivery. It was supposed to arrive via UPS per tracking. The driver never showed. I called repeatedly and no one could tell me where the driver was. Eventually the next day I learned the driver left it in the truck and brought it back to the warehouse where I was told by the pharmacy to go and pick it up myself. Mind you it had already exceeded refrigeration time so there was no way it was safe for me to use. I then spent the next two days trying to get a new shipment processed.”

“From personal experience with Express Scripts and their specialty pharmacy Accredo, my Stelara is delayed every time. It’s gotten to the point that if they are going to make me late on it, I make them do same day delivery. They can make this happen if it’s not a holiday. Insist the medication gets delivered and don’t back down, demand for a private courier service.”

“I have to use CVS Specialty Pharmacy for Humira, they are absolute trash. I confirmed twice that my Humira would ship, and then it never arrived. I called and they took my insurance information, again, and told me it would take three days to process before I could re-order my medication. I waited and called again and then they told me my insurance had been denied. I was on the phone for six hours trying to figure out what was wrong. They finally re-shipped the medication only for it to be delayed by UPS and 8 injectable pens got too warm and had to be discarded…so I had to start again with another shipment! By the time I got the package, my dose was a week late.”

“I recently switched from my hospital’s special pharmacy to CVS Specialty Pharmacy due to my insurance changing and I didn’t get my Humira until 10 days after I was due for my injection. It was such a frustrating process and anxiety provoking.”

Express Scripts issue with Humira. I spent 30 minutes trying to work out a $1,000 billing error on their part. After a half hour, they told me that they couldn’t fix billing issue the same day and that I would need to call back the following day and have the same conversation all over again.”

Optium RX makes me cry at least once a year. Every year I try and beat the pre-authorization loopholes to get my medication on time and there’s always something new. Having to push my medication schedule is so defeating.”

“It’s a mess trying to work with a specialty pharmacy. I have never had a pleasant, easy experience with them. I’ve had four medications (IV and self-administered) sent to Accredo within Express Scripts over the last nine years. To this day, I have to spend at least an hour on the phone so they can run the co-pay assistance information…so for a bit, my co-pay was $2,000!”

“I have been on biologics for about a decade, and I think I could write a book about specialty pharmacy debacles. The latest being that as I was checking out on the phone, the rep commented on my insurance because it had my husband’s company (a popular brand). Thing is, he left the company 18 months ago and at that time I contact the pharmacy with my new insurance, went through the run around of changing insurance getting pre-authorizations, etc. They had been charging the old insurance the entire time. They attempted billing me $18,000 which I am still fighting. I’ve spent over 50 hours on the phone dealing with this and had many sleepless nights.”

“I went without my biologic for nine months because my insurance company through John Hopkins Hospital said I required prior authorization, when in fact I had prior authorization for the 277 refills that my prescription had. I had to advocate for myself to both my GI and primary care physician and they sent 378 pages of my medical records along with a 3-page email about my medication for it to be approved. To this day, I still have issues processing my orders.”

“At the end of the year, I received an email from Express Scripts that said Remicade would no longer be covered, and I would need to switch to the biosimilar, Inflectra. I called to confirm this, and no one could help me. I spent 8 hours over the next two weeks trying to determine if this was really the case. I had to call Blue Cross Blue Shield who then said I should speak to Express Scripts…who then transferred me to the Specialty Pharmacy, Accredo. I was then told by Accredo that I should talk to Blue Cross. It was the most frustrating thing. All I wanted to do was confirm if Remicade was not going to be covered and if it wasn’t what the cost of the biosimilar was going to be for me. Finally, a pharmacist assistant at the infusion center was able to help me.”

“My specialty pharmacy was late with my FIRST maintenance dose of Humira by 3 weeks. The pharmacy said they could only find the prior authorization for the loading doses and not the doses after. Then, my doctor sent me the copy of what they sent the first time, and my maintenance doses were clearly part of the prior auth. The pharmacy argued with me that my doctor didn’t fill it out correctly. They finally sent it, but accidentally sent it FedEx ground in July…and had to re-send it.”

“When I first switched to Humira, Express Scripts, said it wasn’t on their preferred list unless there was a good reason. I told the call rep I had gone into anaphylaxis. She said that I was going to need an actual reason or something serious. I told her I was going to need to speak with her manager because last I checked…not being able to breathe was serious.”

“My workplace changed insurance carriers and promised me that coverage would remain the same through Cigna and Caremark, with the specialty pharmacy being Accredo. Suddenly, I got a call that the Entyvio I take every 4 weeks is not covered at that frequency and also not covered at the Family Health Center where I’ve always received it. Naturally, I raised hell. Had to submit a new pre-certification which took almost 28 days to get approved, switched to a new private infusion center and abandoned my tried-and-true site, and spent more than 8 hours on the phone to do one simple thing: be able to receive the medicine I’ve taken for years. It’s unreal how insurance and specialty pharmacies just make decisions without considering the inconvenience and stress it puts on patients.”

“Specialty pharmacies are just an additional hurdle between a patient and their medicine. It’s like you’re playing a game of telephone and more players are added to the circle and increasing the odds of a miscommunication. When a problem arises you now have to make sure you smooth it out with health insurance, your doctor’s office, and your pharmacy. Oftentimes you don’t know where the problem arises in the first place because of all the finger pointing. I haven’t had a Remicade infusion since December 16th…even though I’m due every 4 weeks.”

“I had a specialty pharmacy send me my Stelara injections without ANY cold packs. Just in a cardboard box. I had not refilled it in 4 months because I was on Entyvio at the time so luckily, I wasn’t going to use it, but it was a mess. The company was so accusatory when I asked to return it until I told them there were no cold packs…shut them up real quick.”

“I called Accredo weeks ago to make sure my medication was going to arrive because my GI sent in a renewed script. I followed up daily the week I wanted to place the order, but they kept saying it was in processing and delayed. My prior authorization goes to 2024, my doctor did everything he could, yet Accredo still couldn’t tell me what the hold up was. I’m 33 weeks pregnant and I really don’t want to mess up the timing of my doses. Person after person says they have it handled, but it’s never the case. I feel like they just give the runaround to get you off the phone. It’s unbelievable how much time gets spent dealing with this. It feels like phone call roulette. It gives me serious anxiety every month.”

“When the new year started my specialty pharmacy would not accept my new Humira Savings Card. It took 10 phone calls and all parties, and it ended with an hour and a half call trying to get $5,000 reimbursed. The provider laughed when I asked then I had him call AbbVie and within 10 minutes the guy did a complete 180 and I was reimbursed. It’s scary to think what would happen if a patient didn’t fight back or speak up.”

“Your post about Express Scripts is triggering. My daughter, age 25, was diagnosed with UC at age 17. She is on our insurance a few more months. Express Scripts became our new online pharmacy a year ago. They’ve been horrific to deal with. She’s only on basic medications—mesalamine, Canasa suppositories and enemas. I dread the thought of what it might be like with them for more complex medications.”

…and there were SO many more messages that I received. Are you seeing a pattern here? This is ridiculous. It’s heartbreaking, frustrating, and sad. The incompetence and lack of care is comical. DO BETTER. I spoke with five different call reps/managers at Accredo and each time it was like I was calling for the first time. Take notes when you’re talking to patients/customers, so you don’t sound clueless on the other line and waste everyone’s time. You can at least pretend to care.

Advice for handling specialty pharmacy issues

Document, document, document! If you are having trouble with your specialty pharmacy, you should document each call and issue. Take note of the date, time, and describe what went down. Then, send a log of all the issues you’ve had to your employer and whoever oversees insurance so that they are aware. If HR gets enough complaints, they’ll look into a new pharmacy for employees.

Advocate for yourself and don’t back down. Be a thorn in their side. Tell them like it is and always ask to escalate the issue and speak to a manager. Get your GI involved and have them go to bat for you, too.

Check with your GI if you’re in a pinch. Oftentimes GI offices carry a couple of injections. You may be able to go and pick one up at the office if you need one. Always worth an ask if you’re in a tough position and don’t know when your medicine is going to arrive.

Contact the pharmaceutical company who makes your drug. One of my IBD friends manages a large practice in Boston. She advised me to contact the AbbVie Ambassador, which is a program available to patients for situations like this. They can overnight you a Humira pen to bridge the gap while companies like Express Scripts figure out their mess.

“The AbbVie ambassador program is a lifesaver for many of our patients when the specialty pharmacies fail! It is soooo frustrating. We see it all the time in our patients, and I’ve experienced it personally, too.”

Utilize social media. Having an issue with your specialty pharmacy? Head to social media (Twitter is best for this) and tag them publicly with your complaint.

How to find a dream team of specialists to take on IBD

Living with an unpredictable and often debilitating chronic illness like IBD can be overwhelming. Being confident in the care team who leads the charge in managing your disease is incredibly important. Life with IBD is a marathon, not a sprint. The variables and challenges change with each year. You need a team of doctors who listen, advocate for you, see you as more than just a number, and guide you with personalized care.

This week on Lights, Camera, Crohn’s, we look at the steps you can take to ensure you’re in good hands and feel comfortable with the specialists in your arsenal. Much like a support system, having a care team of medical professionals who genuinely care for the IBD community makes all the difference in how you’re able to cope and make the best decisions for your health through all the peaks, valleys, and lows.

When you meet your GI by chance

Since I was diagnosed with Crohn’s disease in July 2005, I’ve had two chance encounters in the hospital with gastroenterologists (GIs) who ended up being my doctors for years after our initial meetings. The first time—when I was diagnosed in my hometown (Chicago suburbs), I hit it off immediately with the GI who was given my case. He ended up being my doctor for a decade.

Prior to moving to St. Louis in 2014, I was hospitalized with a bowel obstruction. My GI was 5 hours away, so I had to rely on a stranger to guide my care locally. The GI who looked after me in the hospital had a wonderful bedside manner and as much as I didn’t want to switch medical providers, I knew I would need to find a GI in Missouri. That GI looked after me for about three years, until I had my third bowel obstruction in 15 months, even after switching to weekly Humira injections.

At that point, one of his partners called my hospital room and spoke to the fact that I kept having hospitalizations for the same issue, but no changes were being made. He ordered an MRE (Magnetic resonance enterography) to find the underlying cause of the issue and see if bowel resection surgery was on the table. When the results came through, this doctor CALLED my hospital room, and casually told me I needed at least 10 inches of my small intestine removed. My actual GI never followed up. Never reached out. Never followed up with me after my surgery that ended up involving the removal of 18 inches of my small intestine, my appendix, and my Meckel’s diverticulum.

I knew after that surgery it was time for me to advocate for my care and get a different GI. I desperately needed to make a change. While it’s not easy to break-up with a doctor and it can be hard to navigate the medical provider landscape in a new city, I knew it was necessary. You must stop worrying about hurting someone else’s feelings and put your health—both physical and mental, first.

How I switched to a different GI

Whether you’ve recently moved to a new state or know in your heart it’s time to make a change. It’s important you feel empowered as you switch your specialists. When I had my post-op appointment with the colorectal surgeon, I asked him which GIs he would recommend. He gave me two names. I then reached out to my local Crohn’s and Colitis Chapter and while they couldn’t give me names of specific providers, they connected me with fellow patients who could offer up advice. I went to lunch with a few ladies with IBD and I was given the same name. That GI has been my doctor ever since (November 2015).

Since that time, I’ve been in deep remission. My GI is extremely proactive and aggressive with her approach. She leaves no stones unturned. She calls me directly if I write her and the nurses a question on the Patient Portal. I’ve had three healthy pregnancies and three healthy babies. She’s helped me navigate so much of the unknown and listens to my questions. She knows I’m a patient advocate who follows the research and stays on top of my health and rather than talk down to me, she takes what I have to say into consideration, always.

Discovering what matters most to you

Everyone has a different preference when it comes to the personality and approach of their doctors. Some prefer a gentle bedside manner. Others want no fluff and a direct, business-like approach. Some like a little mix of both. Think about what matters most to you. I’m a bit of a softie and bedside manner matters a lot to me.

Try and think of it this way—at your worst, when you’re hospitalized, what kind of doctor do you want leading the charge, walking into your hospital room, and guiding your care? If your GI is intimidating, lacks empathy, and is cold, it could add insult to injury and make your already dreadful experience that much worse. On the flipside, having a straight shooter who tells you like it is and doesn’t sugarcoat what’s going on can also be beneficial. Envision who you want by your bedside as you fight a flare and go from there.

There are GIs who do not specialize in IBD, so when you are seeking a new one, try and make sure their focus and expertise is Crohn’s disease/ulcerative colitis.

Navigating Medical PTSD with new care providers

Medical PTSD is real. Oftentimes due to the nature of IBD we are put into vulnerable positions because of where our disease presents. You may be asked at a research hospital if medical students can watch. You may feel uncomfortable or uneasy starting fresh with someone new. This is all normal and justified. Each time you have to re-tell your medical history you are forced to re-live your trauma. A friend of mine in the IBD community recently told me that her therapist advises her to write out your medical history.

This way you simply hand over a document to your care team that lays out your full story without any key details missing and without having to talk about memories and experiences that can be harmful to your mental health and well-being. Along with bringing a printout version, it can be helpful to upload the document to the Patient Portal. This takes the pressure off you to give a high-level explanation of your IBD journey and allows you to focus on the right now. The right now being the questions you have presently and what issues you want to tackle. Say goodbye to the elevator speech that tends not to include the nitty gritty.

Do your homework prior to the appointment by writing down your questions ahead of time. You can either have pen and paper handy to write down notes, ask the doctor if you can voice record the appointment so you have the details, or type the notes right into your phone.

Building your dream team

With IBD we all know a care team is made up of more than gastroenterologist. It can be helpful to ask your GI who they recommend within their hospital system so that all the records are readily available. By following up with a recommendation from your GI, you know the other specialist is someone they respect and someone who they would have effective means of communication with.

Trust word of mouth—but also trust your gut. If a medical provider feels dismissive, rushed, or like they aren’t listening to you, move on to the next. You are in the driver’s seat to build your team. Depending on where you live—I know it can be tricky and complicated to find accessible care and leading IBDologists. It may mean you have to drive a couple of hours every few months to receive the type of care your IBD demands. Ideally, your GI will be local so that when a flare up requires hospitalization you can go to the hospital and know who will lead your care. But not everyone is afforded that luxury. While I was finding my GI in St. Louis, I would contact my GI in the Chicago suburbs and keep him aware of what was happening. He provided me advice every step of the way and I’ll always remember how he called me from his cell phone the night before my bowel resection and assured me the surgery would be a “fresh start”. He was right.

While IBD is often out of our control, building your care team and finding specialists who do all they can to help improve your quality of life, understand your individual disease process, and constantly look to do more than status-quo, will give you the confidence you need when symptoms start to go awry or when you need to make major medical decisions about medication, surgery, and beyond.

The Patient Experience: Living with IBD and additional chronic illnesses

Imagine having a laundry list of medical conditions, along with your IBD. For many, it’s a stark reality. In a poll I recently conducted on Instagram, 64% of our patient community responded that they live with multiple chronic illnesses. This week—we hear from several women about what it’s like to juggle IBD and more.

As someone with Crohn’s disease I learned a lot by interviewing others and hearing about their personal struggles and triumphs as they face the unknown. Whether it’s trying to pinpoint which symptoms pertain to which illness a person is living with to coordinating a care team and living through a nearly 2-year pandemic that has shed light on how the world perceives our community—it’s heavy. It can be discouraging and it’s a lot. At the same time, finally getting answers gives some people hope and a feeling of relief.

As Brooke Abbott so eloquently puts it—it can be a domino effect. She started experiencing IBD symptoms when she was 18, she was diagnosed with ulcerative colitis in 2008 at age 24. Brooke also has IBS-D, Psoriasis, Ankylosing Spondylitis, trigeminal neuralgia, erythema nodosum, and asthma. Being a mom of color with multiple conditions in a world where patients are also “othered” has not been an easy journey. Finding a care team was a challenge for Brooke. She experienced unconscious bias, sexism, and racism when she was newly diagnosed. Not to mention irregular healthcare coverage.

“It reminds me of babysitting multiple children. The one screaming and crying got my initial attention. Once they were settled, I’d move on to the next child that needed my immediate attention. It’s a balancing act and I try to be as flexible with myself and give myself as much grace as possible. A breakthrough flare of one can ignite the flare of the another. Being diagnosed wasn’t the gut punch. It’s the days when my life is paused to cater to another illness after I just finished catering to another.”

Natasha Weinstein was diagnosed with Crohn’s disease in 2004 when she was only 11. Since then, she’s been diagnosed with IBS, Fibromyalgia, Arthritis, Migraines, Asthma, Carpal Tunnel syndrome, Tarsal Tunnel syndrome, Dermatagraphism, Vertigo, Ehlers Danlos Syndrome, Endometriosis, Pelvic Floor Dysfunction, Depression, Anxiety, OCD, and multiple vitamin deficiencies. She says juggling all these health conditions feels like a full-time job that she can never escape.

“It feels like my body is constantly falling apart. I feel like I live at the doctor, but I am grateful to be where I am today. I have an incredible job, a supportive family and understanding friends. My medically complex health has taught me resilience and strength, despite the frustrating and emotionally breaking days. Being chronically ill gives you a unique perspective on life. Add in MULTIPLE conditions and it’s a whole new ball game.”

Rocio Castrillon has been living with Crohn’s disease for 18 years. She also has Anemia, Asthma, Cataracts, Fibromyalgia, Glaucoma, Hypothyroidism, Uterine Fibroids, and Uveitis.

“Having multiple conditions is complicated particularly if one affects the other. I have learned to manage my conditions as best as possible, but my greatest fear is the flare of one of them at any given time, so I feel like I’m always waiting for something to happen. It’s extremely challenging to manage multiple providers, conditions, and medications. And they are all invisible illnesses. So, no one can “see” what I’m going through even though I may be suffering tremendously. That’s one of the hardest things for me…living a life full of chronic disease(s) in silence.”

Sarah Holleman was diagnosed with Crohn’s disease and Antiphospholipid Antibody Syndrome (APS) in 2018. It is also called Lupus Anticoagulant, but you don’t have to have Lupus to get it (although many people with Lupus get APS). Sarah went from being a healthy 28-year-old to having two chronic illnesses and seeing four specialists on a regular basis.

“It is utterly exhausting. Dealing with insurance, waiting rooms and doctors’ appointments is all-consuming. I had a healthy baby boy in May 2021, but going through a pregnancy with two chronic illnesses was challenging. My GI monitored my IBD symptoms, which fortunately stayed in remission. For APS, I had to switch from my oral medications to twice daily self-injections until the last few weeks when it went to three times a day.”

Trying to find balance

Laura Steiner was diagnosed with ulcerative colitis in 2012, she also has IBS, Asthma, hidradenitis suppurativa, IBS, and a few other inflammatory skin conditions.

“It can be confusing and frustrating balancing all of the different symptoms and having all doctors on board with everything. It also sometimes limits the available treatment options because for example, Inflectra that I am on for my UC is also used to treat HS, but since I’m already on it there is not much more the dermatologist can offer me for relief. UC is the only condition that tends to really interfere with work, so that is my #1 priority to manage, the rest I can deal with and manage.”

Meredith Ditty was diagnosed with Crohn’s disease at age 20 in 2011, she later found out she also has Primary Schlerosing Cholangitis (PSC), a liver disease that people with IBD develop. She also has Anemia, Gilbert’s Syndrome, Psoriasis, and Ovarian Cysts.

“I was so young, other people were living a normal life and I was stuck dealing with all of this. Thankfully, I had a great support system and had emotional, physical, and financial help, to get me where I am today.”

Emily Adams has Crohn’s disease and Lupus. She became symptomatic with both in 2020 at 26 years old. Her IBD has been flaring since July 2020. As you can imagine, being diagnosed during the pandemic made the process extra stressful and worrisome. Emily has been hospitalized five times in the last two years without visitors.

“Before I was diagnosed with Crohn’s and Lupus, I was very healthy. I was training to run my third half marathon and I was in my third year of teaching 5th grade science. Since getting sick I have had to stop working and I’m now on disability and I had to move in with my sister, as living alone was too difficult for me. My life went from complete independence to needing my family every day for help. Honestly, getting sick has made me more patient, empathetic, and kind. I’ve had a lot of time to think and reflect because my life is a lot slower these days. I appreciate the small things because now the small things are the big things.”

Alyssa Pinkham was diagnosed with Crohn’s disease in 2020 and was recently diagnosed with Gastroparesis and GERD. She’s dealt with anxiety issues and learning disabilities for more than a decade. She often struggles with knowing which condition is causing her abdominal pain. Alyssa credits coming to the realization that she was experiencing additional health issues to the friends she’s made through the online chronic illness community.

“It is difficult to navigate multiple chronic illnesses of the digestive system. They oftentimes have overlapping symptoms and if one condition is doing poorly, usually the others are doing poorly as well. It is also difficult having multiple gastroenterologists for the different conditions. In my case, they are on opposite sides of the state. It’s a challenge for the gastroenterologists to communicate their specific treatment plans with one another and with me so that they can provide an effective treatment plan that will put my Crohn’s and gastroparesis in remission. The lack of communication is frustrating and exacerbates my anxiety. When my anxiety isn’t being controlled it sets off my Crohn’s and gastroparesis conditions, which leads to more anxiety. It’s a vicious cycle.”

Katie Schimmelpfennig was diagnosed with Crohn’s disease in 2011, she was 21. Then, in 2015, she was diagnosed with nodular scleritis, an inflammatory condition that impacts the white outer coating of the eye. If left untreated, it can cause vision loss.

“It’s hard having two chronic health conditions and continues to be a challenge. I started therapy about a year ago. I wish I started sooner. Talking with someone has helped me. I struggle with feeling like my body is broken. I feel like I’m letting myself (and others) down because I’m sick more times than not. The book, “This Too Shall Last: Finding Grace When Suffering Lingers” by K. J. Ramsey was helpful to me. She writes about how our culture treats suffering like a problem to fix and the shame that comes with that all through a Christian point of view. It brought me comfort, understanding, and even some more acceptance for what I’m living right now. I would highly recommend checking it out.”

Feeling unsupported through the pandemic

Ableism existed long before the pandemic, but it seems that unfortunate mentality and attitude has been exacerbated since the start of these unsettling times.

Rocio explained, “While there have been many accommodations that have been made during the pandemic for the general public (i.e., curbside pickup, free delivery, etc.) I wish this had been the option for us long ago. Working from home is yet another dynamic that has allowed everyone to have the flexibility that many of us with chronic diseases need on a daily basis. It has become acceptable and more of a norm now, yet any previous requests for similar accommodations for us have always been denied or frowned upon. I’ve truly seen who supports and cares about others and who is selfish and out for themselves.”

Mo Lynn was diagnosed with Crohn’s disease in October 2019, when she was 23 years old. She also has Polycystic ovarian syndrome (PCOS), endometriosis, and non-alcoholic fatty liver disease (NAFLD).

“The world, the workplace, and the US health care system are not built for people like me. Throughout the pandemic, it’s been made clear to me that a lot of people find the deaths of people like me with chronic illnesses or disabilities as inevitable and meaningless. Never mind the value I bring to my family, my friends, and society. There will always be people who think that the lives of the chronically ill /disabled are meaningless.”

Katie says, “I choose to believe that most people are good and kind, doing the best they know how to do at the time. But it’s hard, really hard–especially for the chronically ill right now. I don’t want covid. I don’t want mild covid. I don’t want severe covid. I don’t want to give covid to someone else. I don’t want long covid. I know what it’s like to be sick for days, months, and years. When I personally know people who are choosing not to get vaccinated, it hurts. It makes me feel like they don’t care about me. When I see people not wearing a mask, or their nose hanging out, it makes me feel like they don’t care about me or the health of their community. So, my perspective on the world around me: we need to do better. We need to be better.”

Brooke says looking through social media at peoples’ selfishness and carelessness has made her sad and frustrated with the evolution of humanity.

We talk a lot about community and inclusivity on our platforms, but when it’s time to perform action to ensure that all are safe and healthy, we fail to do so if it feels inconvenient for us. Watching people fail their neighbors by simply wearing a mask, stopping the spread of this highly contagious virus is just heartbreaking. It’s also frustrating to watch people waste their health by risking it for a party, or a concert or a bar night.”

Rapid Fire Chronic Illness Tips

  • Having chronic illness equates to a lot of trial and error. From finding your care team to what works best to manage your health—be patient as you find what helps you get your disease(s) under control and recognize that what works for one person won’t necessarily work for you.
  • Seek therapy and don’t look back. When you are constantly at battle with your body and worrying about the what if, it can be overwhelming and all-consuming. Give yourself permission to take time to put your mental well-being first.
  • Keep your GI as the team lead or quarterback of your care. Let them guide the decision-making and set the stage for your care plan. Build your care team around your GI.
  • Rather than focusing on remission, focus on the thing that is ailing you the most and heal that. Once that is settled, move on to the next thing.
  • Try to let go of the guilt and shift your mindset about how your caregivers are sacrificing for you. Instead, think about their genuine care and concern for you despite your illness. They show up day after day because of their unconditional love for you.
  • See all your doctors in the same network so they’re able to share reports and test results easily. Making information accessible to your care team takes the burden off your shoulders to play telephone and relay information back and forth.
  • If you’re being dismissed or feeling unheard by your care team, remember you aren’t married to them. Find a new team. The time and effort are worth it. Ask for referrals.
  • If friendships and relationships feel toxic to you, let them go. Use your medical misfortunes to your advantage. You have an innate superpower to see peoples’ true colors—if they genuinely care, if it’s a relationship of convenience or actual care, and you see who shows up and who disappears to the background.

If you’re tired of being sick and tired, please know you are not alone in feeling this way. There will be days when managing multiple health conditions are extra tough. Anger, frustration, and sadness are all normal and justified. When you live with multiple health conditions—or even *just* IBD it’s like a daily game of Jenga. One wrong move, one decision, can inadvertently cause the tower to come crashing down. It’s a fragile balancing act that comes with its fair share of setbacks and challenges but also provides a unique perspective and appreciation for life and taking on each day without taking anything for granted.

IBD Motherhood Unplugged: I have Crohn’s and COVID

Well, after dodging the son of a bitch since March 2020 and doing all I could to stay well, I have COVID. My husband and I started with symptoms New Year’s Eve. Quite the way to welcome in 2022, let me tell ya. As an IBD mom of three little ones who is immunocompromised from my medication, I, like so many others have been worried about this since the moment the pandemic began. One of my greatest fears became my reality. My husband tested positive the day he was scheduled for his booster. I’m triple vaxxed (since late July!) and that still wasn’t enough to protect me. I do believe the vaccines lightened the load of the illness and I’m grateful we had them.

Like I do with all my blog articles and reporting, I prefer to be transparent and honest about my personal experience in hopes of helping others. I’ve been keeping track of my symptoms daily and monitoring how the illness has manifested in me since it began. In this article, I’ll also share how I was guided by my gastroenterologist and pediatrician in navigating this once my family was exposed and became positive. As of now, miraculously, all three of our children (ages 4 and under), have tested negative and appear healthy.

Discovering I was exposed

So many emotions ran through my mind. Fear. Dread. Anger. Frustration. Disbelief. Shame. Worry. I cried lots of tears. My youngest is not quite 6 months old. Like any parent, I have tried my best to shield him from all types of illness since he entered this world. More than myself I’ve been concerned about how his little body would handle COVID. My family of five was directly exposed for 44 hours straight. We all had the same exposure and the damage had been done. What was supposed to be a time to celebrate with loved ones over the holidays turned into a nightmare real fast. It’s been a waiting game. I’ve felt a lot of emotions since my symptoms creeped up the night we returned home.

Here’s how my COVID has played out:

Friday, December 31st—headache, brain fog

Saturday, January 1—headache, runny nose, fatigue, no appetite

Sunday, January 2—headache, runny nose in the morning only, a dry cough, a little difficulty breathing, no appetite

Monday, January 3—headache, runny nose in the morning only, bad cough with phlegm coming up, congestion, hoarse voice, no appetite

Tuesday, January 4—TESTED POSITIVE (no surprise there) Runny nose like a faucet in the morning only, migraine with auras, no appetite, bad cough with phlegm coming up, hoarse voice.

Wednesday, January 5—Runny nose in the morning only, headache, hoarse voice, same cough. Smell and taste lessened. All three kids tested negative through pediatrician.

Thursday, January 6—Less congested, subtle headache, hoarse voice, same cough, no appetite, fatigue, taste, and smell gone.

Friday, January 7—Can finally breathe through my nose, subtle headache, no taste or smell, no appetite, congestion.

Saturday, January 8—headache, no taste or smell, congestion.

Sunday, January 9—FINALLY no headache, feels like a head cold, no taste or smell. My voice is back to normal, feeling a lot more like myself.

Managing Crohn’s Through COVID

As someone who has lived with IBD for more than 16 years, feeling unwell and juggling unpredictable symptoms doesn’t feel like anything new. But, knowing how to keep the focus on managing my Crohn’s while having “normal people sickness” is often challenging, especially since COVID is so unique in how it presents differently in people and comes in waves. When my gastroenterologist learned I had tested positive she offered up the monoclonal antibody infusion or a 5-day course of Pfizer’s new over the counter pill, Paxlovid. Since I was unable to get tested until day five of symptoms and since my case was mild, I chose not to do either. Personally, the thought of sitting around all the germs in a hospital (even though I’m positive for COVID) didn’t sound appealing to me. There is just so much sickness going around right now. I felt more comfortable taking the illness on myself since it was not severe and have been taking Vitamin D, Vitamin C, Zinc, and my prescription prenatal and folic acid.

One big question many of us in the community have is what to do about biologic therapies when we test positive. I am on Humira, and my next injection is due today (January 10). I was exposed to COVID two days after doing my injection. My gastroenterologist told me I would be fine to stay on schedule since my symptoms were mild and since I did not have a fever. She went on to say that if I am not having pulmonary issues (which I’m not), that I should proceed with my scheduled injection.

Luckily, my Crohn’s felt non-existent the entire time I’ve been sick with COVID. It was almost like my body was solely focused on the upper respiratory issues. Oddly enough, and this may be TMI…but I always tell people in our community nothing is TMI… today (Sunday) I experienced a burning sensation in my abdomen for about 30 minutes, felt some nausea, and had several bathroom trips. It was almost as though the COVID was leaving my body, because the last 10 days I haven’t felt anything like this and now I feel a lot better.

Mom Life with COVID

What’s really made this entire ordeal torturous for me is having to do my typical stay-at-home mom life with a 4.5-year-old, almost 3-year-old, and 5-month-old, while having COVID and Crohn’s disease. Unfortunately, even though my husband was symptomatic and positive he had to work from home, so it’s been me in the trenches, wearing a mask from 6 a.m. til the kids go to bed, and not getting a moment to rest or recuperate.

What anyone with a family and COVID can attest to is how challenging quarantine is when you can’t have your village of support help you with the little ones or get any type of childcare break. Typically, Reid goes to preschool three days a week and Sophia goes twice a week. Even though their school days are short, and I’m used to having everyone home, I’ve grown accustomed to a little bit of downtime with the baby. Between Christmas break and our quarantine, our entire family has been home since December 20th. Even through I’ve been sick and on the struggle bus, my day-to-day actions have not been able to change at all. To say I’m running on E is an understatement. Don’t beat yourself up over screen time and not being able to entertain your kids, it’s survival mode at its finest. As an IBD mom, the fatigue that comes with our illness is nothing new, the only saving grace with COVID is knowing there should be an endpoint. While long COVID exists of course, I’m not sure I’d be able to even tell the difference since I already live with chronic illness.

Breastfeeding with COVID

Ladies, I thought breastfeeding through colonoscopy prep and not eating for the days leading up was intense. This has been a whole different level of effort. To protect the baby, our pediatrician recommended my husband and I wear masks in our house. People complain about wearing a mask to get groceries. Try wearing it in your own home, morning-noon-and-night for 10 days, nursing a baby while your nose is running like a faucet, you feel unwell, and fear you’re going to pass along COVID to your small baby because you’re in such close proximity. At times I’ve felt on the brink of having an anxiety attack because the mask and my breathing made me feel like I was gasping for air while trying to feed him.

That being said, I’ve never felt more grateful or fortunate to be breastfeeding my son. It does my heart good to know he’s getting my antibodies in real-time as my body fights COVID. While breastmilk of infected mothers does not contain COVID-19, it contains antibodies against it.

I found promising articles and research about the benefits of COVID-positive moms continue to breastfeed their children:

Can Mother’s Milk Help Fight COVID? New Evidence Suggests ‘Yes’

Liquid Gold: How Breast Milk Could Pass Along COVID-19 Immunity

FAQ on COVID-19: Breastfeeding safety for mothers

Luckily, thus far, my baby hasn’t shown any symptoms and continues to thrive beautifully as we gear up for him turning 6 months this week. I’ve prayed hard over him daily and I’m hopeful I’m nourishing him and providing him with the best protection possible by nursing him through this pandemic.

Recommendations Moving Forward

As I write this it’s 9 pm on Sunday night. I’m much more at ease and honestly since I’ve been sick since New Year’s Eve, the entire start of 2022 has been a blur. I’m sitting on the couch, fire going, taking a deep breath, and trying to relax. Now that hindsight is 20/20 here’s what I wish I did before and what my recommendations are:

  • Order rapid tests proactively: Part of the reason we were exposed initially was because my loved ones could only get their hands on one test (which was negative). We made the trip home only to find out two days later that my dad had been positive the entire time. I ordered four tests on 12/30 and they just arrived yesterday. Prior to all this, my kids and I had never been tested. It’s much smarter to have tests ready to go at home so you aren’t scrambling and forced to make a judgment call that could put you in the line of fire.
  • Get 3-ply surgical masks for little ones: My kids have worn cloth masks up until all this, but when they return to school later this month, I plan to send them in surgical masks for added protection. I don’t expect my little ones to wear N95s. Not only are surgical masks more convenient than constantly having to wash them, if they lose their masks or misplace them in the wash, I don’t have to run around trying to find a mask that’s clean and ready to go as we are rushing out the door.
  • Connect with your care team when symptoms start: If you have a chronic illness and especially if you’re on heavy duty medications (like biologics) I can’t stress enough how important it is to stay in open communication with your care team so they are aware of the situation and can guide you through it. COVID is nothing to mess around with. It’s not *just a cold*, trust me. I spoke with my GI and my pediatrician almost daily this week through the patient portals.
  • Don’t take unnecessary risks and let your guard down: We are all exhausted from this nightmare, and I get how we all want to enjoy life and not live in fear. But one risky decision—something as simple as going out to dinner or seeing family that you miss, can end up with a great deal of sickness that you’ll quickly realize wasn’t worth it. Get vaccinated, get boosted. We’ve lost two family friends this week alone who were unvaccinated and died of COVID. It’s beyond heartbreaking.
  • If you lose your taste and smell like me, I’ve been told the sooner you start smell training the better: My friend recommended I order four essential oil scents off Amazon—Clove, Lemon, Eucalyptus, and Rose. They arrive to me on Wednesday. I have also been told by multiple people to eat Hot Tamales Candy and spicy, potent foods to get taste buds reactivated and to drink celery juice. Smelling perfume, cologne, garlic, dish detergent, and candles several times a day for 20-second increments is also a way to help bring it back.
  • Chart your symptoms each day: It’s helpful to keep track of your symptoms each day in the “Notes” section of your phone, otherwise it’s hard to remember what you’ve dealt with. It takes out the guesswork when talking with your doctors and helps you see how you’re improving or getting worse.
  • Disposable everything: We’ve been using plastic Red Solo Cups and writing our names on them, paper plates, paper towels, you name it. Get the germs out of your house and avoid using shared hand towels, toothpaste, etc. with those you live with.

Holiday Reflections: Thoughts from an IBD mom as we bid farewell to 2021

Tis the season for reflecting on the year past and all we’ve experienced and endured—both the beautiful moments, the hardships, and even the mundane. As an IBD mom, 2021 was a big year for my family. We moved to our forever home in June when I was 35 weeks pregnant with our third child and welcomed Connor to our family in July. While there aren’t many milestones more amazing in life, they also come with their fair share of stress. I don’t know about you, but stress often triggers my Crohn’s. It goes without saying the holiday season alone can be complicated to navigate with chronic illness, especially in the middle of an ongoing pandemic.

My best advice—listen to your body. If you feel like you’re being stretched thin and your symptoms are trying to speak to you, take time to listen. While chronic illness is always inconvenient when it’s flaring, ignoring an issue that is presenting only delays the inevitable and could set you up for an even bigger setback. I hope this week between Christmas and the New Year that you take time for YOU. Breathe. Relax. Reset. It’s something I struggle with and hope to improve on in 2022, so I’m right there with you!

COVID Every Where You Turn

I don’t know about you, but the pandemic has been creeping closer to my doorstep with each day that passes. Close friends had Christmas plans canceled. IBD friends near and far are sick with COVID right now. My family on both sides have dealt with being exposed, also re-shaping how our holidays ended up this year. I hosted Christmas for the first time in my life! Only 10 people (including my fam of 5), but hey, you gotta start somewhere! And moving forward, I think I’m going to host the holiday from now on!

On a serious note, these are troubling times. Almost two years in and it feels like we’re in a dark, never-ending tunnel, with no light. But, just like life with IBD, try not to allow the looming darkness to dull the beauty that still resides around you. I found myself crying happy tears many times on Christmas day. Despite the ongoing burden and hardship of the pandemic, I felt incredible amounts of gratitude for my family and getting to be a mom to three children. Seeing Christmas through their eyes was beyond magical and feeling well the entire day was the cherry on top.

As much as we’re all “over” the pandemic, it’s not a time to throw caution to the wind as we gear up for 2022. Stay vigilant. Use your voice. Speak up if you’re not comfortable, rather than being a people-pleaser. Set boundaries and don’t feel like you need to explain yourself to anyone. Think about the risk vs. the benefits, just as you do when making decisions about your body with IBD. Have ongoing dialogue with your care team and the doctors who treat you rather than from acquaintances on social media who have no medical background whatsoever.

Spread Holiday Cheer, Not COVID

I’ll leave you with my family’s Christmas card and a thank you for following our journey, offering support, love, and prayers along the way. The IBD family is so special to me. I honestly don’t know how I went the first 10 years of my disease without connecting with our community. Since I started sharing my story and opening myself up for support, taking on Crohn’s feels a lot less overwhelming. You inspire me to write, to share, to collaborate, and to do all I can to make a difference. Once you’re a journalist, you’re always a journalist…and I find it so rewarding to be a trusted resource in our community for insight about diagnosis to career, to finding love, having babies, being a mom, you name it. Thank you for listening and for reading. Excited to see what 2022 has in store!

Paying It Forward with IBD

When you hear the term “pay it forward” you may envision someone in a drive thru line surprising the person behind them by covering their order. Those words have held a different meaning for me as a person with IBD. When I had bowel resection surgery, I’ll always remember how my husband’s cousin and wife surprised us and showed up to the hospital with coolers of food and drink for my immediate family. It was an act of kindness and generosity that meant so much. That was six years ago, and we still talk about it.

Fast forward to present day and a friend of mine locally who has battled Crohn’s disease for decades had surgery. He’s a husband, a father of four, a successful businessperson, and leads our local Crohn’s and Colitis chapter as President of the Board. Through the years my husband and I have connected with him and his wife at Foundation events.

Staying connected through the pandemic

He recently posted on Facebook that he would be having his 8th Crohn’s-related surgery. He’s taken on Crohn’s with resilience and grit since being diagnosed more than 21 years ago. Thanks to the pandemic, the last time we had seen him, and his wife, was at the Crohn’s and Colitis Foundation Gala in November 2019. Despite two years passing without seeing one another in person, there’s something special about the IBD community and the family feel it creates.

When you’re knocked down by a disease over and over again and you’ve had surgery, you’re able to relate to the struggle, while also understanding how beautifully amazing recovery can be when you get a fresh start. While surgery is not a cure, it affords many of us with the opportunity to stay ahead of our disease and take out the portion of our intestine that is diseased and causing us problems.

A call to help

After I saw the social media post giving friends and family a heads up of the surgery happening in two weeks I grabbed my day planner and marked my calendar so I could be reminded of when to reach out to my friend in the days ahead, to pray, and to start thinking of how I could help his family of six during this uncertain and challenging time.

I immediately thought about his sweet wife trying to steer the proverbial ship for the family for months on end. Four young mouths to feed. I texted them both and said I would be bringing over a homemade meal. My text may have seemed out of left field, but I wanted them to feel supported and help in a way that doesn’t seem like a big deal, but has a lasting impact. Rather than asking how you can help, if you can help, or that “you are there if they need anything,” just come right out and say what you are going to do.

We picked a day for me to stop by with a homemade dinner and when we saw one another and were able to chat for a few minutes in person it warmed my heart. I could tell the gesture was so appreciated and that it brightened their day as much as it did mine. We all know how monotonous recovery can be, so having someone stop by—even for a few minutes—helps break up the boredom.

Hanging out at the Crohn’s and Colitis Foundation Gala in 2019. As my friend endures his recovery and now another surgery on the horizon, it’s friendships like this that deserve extra thought and care.

Passing along the appreciation

Fast forward to this week and while I was feeding my baby, an email popped up on my phone from a friend of mine in the patient advocacy space. She wrote:

“Dear Natalie,

Thank you for your tireless dedication to the patient community that you serve. I am deeply grateful for the opportunity to work with you, and always appreciate your willingness to jump in and help my clients transform healthcare. Patient Authentic wouldn’t run without you! Please accept this gift as a small token of my appreciation for your commitment to making the world a better place and your support throughout this past year. Wishing you a wonderful holiday season and a joyful new year!”

This was such a sweet surprise and brought me back to this notion of “paying it forward” in the patient community and going out of your way to brighten someone’s day. When you live with chronic illness, and never know what the day will bring, it’s wonderful to have moments of reprieve where you feel thought about, appreciated, and seen for all that you endure and all that you go through.

Paying it forward to someone with IBD this holiday season and beyond

It’s not about the monetary value, but rather the effort and thought.

  • Send a card expressing how you are thinking or praying for someone, rooting them on, supporting them through the ups and downs their disease creates.
  • Offer to help watch the kids so they can have an hour to take a walk, run an errand, or just relax.
  • Ask if you can join them for a doctor appointment, to get lab work, go to an infusion, be there at their home when they do an injection—anything to be there as a source of support. I recognize with COVID you may not always be allowed, but it’s worth an ask. By doing a “ride-a-long” with a friend or family member, you’ll get a small taste of what their reality is like. It’s often the drive to and from appointments and procedures that makes our minds race and can get emotional.
  • A simple “tell me about how your Crohn’s has been?” or “how has Crohn’s been impacting your day to day?”…or “what is it like to live with Crohn’s?” means a lot…don’t waste your breath only asking “how are you?”…because most people with chronic illness take this as an opportunity to downplay their struggles or sugarcoat the reality. Dig deeper and ask empathic questions that show you really care.
  • Share content of fellow advocates on social media—whether it’s a blog, a podcast, a reel, a post on Instagram—being a patient advocate takes a lot of time and effort, it’s rewarding when you see your words and your work reach more people and even better when you learn how a story you wrote or a post you shared touched another person’s life and impacted them in a positive way.

Over the weekend a fellow IBD mom friend of mine was hospitalized from a flare and faced with the need to start a biologic. When she got home with her family last night, she sent me an email with an update and ended it by saying “thank you” for being a mentor/friend/support in her corner. It’s moments like this that validate why I do, what I do.

IBD Motherhood Unplugged: My son has Crohn’s and I published a book about our experience

Overwhelmed. Terrified. Unsure. When Heather Hausenblas’ son, Tommy, was diagnosed with Crohn’s disease December 6, 2018 at age 16, she didn’t even know what IBD stood for. She knew she had a lot to learn and was on a mission to get her son healthy. Fast forward three years and now she’s a published author on the topic.

“Invisible Illness” chronicles how it feels from a parent’s perspective when your teenage child is diagnosed with a chronic illness for which there is no cure. The book provides an inside look at a mother struggling to find her way forward and how she turned despair into hope not only for herself, but for her entire family.

Heather Hausenblas, PhD, is a mother of three boys, health psychology expert, and award-winning researcher. She says when her eldest son was diagnosed with Crohn’s, her personal and professional roles collided. Not only was she going to battle for her child, but she also began her mission to help those with chronic illness eliminate the overwhelm and (re)discover health.

Dealing with the words chronic and incurable

“I kept hearing there was no cure, no known cause, no one treatment, and no one symptom. No. No. No. No. He will always have it. It’s never going away,” writes Hausenblas in her book.

Chronic and incurable-these two words were exploding in Heather’s mind on repeat. Tommy went from being on the high school baseball team, with lots of friends, doing well in school, and being very active…to living with a complicated and often debilitating disease. Everything in their life came to an abrupt halt. She explains how the illusion of youthful invincibility began to fade. Something anyone in our community can relate to. Health is often taken for granted until it is robbed away from you.

Feeling helpless through the struggles

She writes, “I could hear the pain in Tommy’s voice. But I was helpless. To put his excruciating pain in perspective, one Crohn’s patient described it as, “I’ve given birth without an epidural twice in my life, and the pain of Crohn’s disease was far worse than that.” “Tommy’s physical agony was accompanied by the unending frustration involved in trying to diagnose this complex disease. His symptoms and complaints had been overlooked—even dismissed.”

When a child or parent is diagnosed with IBD it impacts not only the person with Crohn’s or ulcerative colitis, but each family member in a unique way. It’s often said that IBD is a “family” disease.

“Torture was seeing my child wasting away to a skeleton, dropping nearly twenty pounds on his already lean frame, constantly running to the bathroom, and having excruciating pain. Torture was watching him leave the house only to run back seconds later for the bathroom while his friends went to the party.”

As a mom with Crohn’s myself, reading Heather’s perspective as the parent watching her son endure pain and hardships struck a chord with me because when you’re a young patient and are diagnosed before becoming a parent yourself, you often don’t take the time to think about how your disease and struggles are impacting the people who love you most. Not out of disregard, but simply because you are dealing with so much internally and externally it can be difficult to think outside of yourself.

Healing with food

While Heather shares a great deal of insight about the importance of diet and nutrition as it relates to IBD throughout the book, she also talks about the challenges Crohn’s presents since each person tolerates food differently. She explains how it’s impossible to find a one-size-fits-all diet but advises patients to journal everything from what they eat to how often they go to the bathroom to try and tailor a personal diet that works for you. Discovering your own triggers and knowing which foods are risky or tend to cause pain is a huge step in managing your illness.

“After a few weeks of strictly following the SCD (Specific Carbohydrate) diet, Tommy said that gluten wasn’t his issue. He somehow knew. He knew his body. He now eats gluten when he wants…Tommy’s liberalization of the SCD highlights the practical concern of adhering to a very restrictive diet.”

“Invisible Illness” includes 30 pages of helpful inflammation-fighting recipes. Throughout the book Heather talks about how she “detoxed and decluttered” her home and the cathartic effect journaling had on her coping process then and now.

Now, as a sophomore at Clemson University studying engineering, Tommy is in remission and does not take medication. He manages his Crohn’s by eating a healthy diet made up of organic, whole food, has an active lifestyle, and says his Crohn’s disease does not define who he is.

Forming connections and offering hope

Heather hopes that by candidly sharing her family’s journey with IBD that she opens the door for connections between other parents and families living the same reality. She recommends fellow parents to get involved with local organizations, so you recognize from the get-go that you are not alone.

Her main goal with publishing “Invisible Illness” was to “to help others navigate through the storm of medical and health information to figure out the right wellness path.”

How to purchase “Invisible Illness”

You can get your hands on a book by ordering a copy on Amazon.

Connect with Heather

Facebook

Instagram

LinkedIn: Heather Hausenblas

Email: hhausen@ju.edu

Join Heather’s email list via her website to receive recipes, weekly health tips, much more.

Website: www.heatherhausenblas.com  

Working with IBD: Tips for a Successful Career

Work life balance takes on a whole new meaning when you have chronic illness. Molly Dunham-Friel can attest to that. Diagnosed in 2012 with ulcerative colitis, one year after receiving her undergraduate degree, Molly was forced to begin her professional career with unexpected titles she was just getting accustomed to—IBD and IBS. Molly remains just as ambitious and aspirational as she was prior to her diagnosis, but undoubtedly has experienced common roadblocks that come along with living with chronic health conditions.  While the career detours were not always welcome, the experiences Molly has had over the last nine years blossomed into finding what she is truly passionate about.

This week on Light’s Camera Crohn’s we take a close look at having IBD in the workplace, whether you work in an office or at home.

Quite the Go-Getter

While IBD is unpredictable, one constant in Molly’s life has always been her go-getter attitude. She tells me she’s been known to work multiple jobs since the age of 15.

“I am not very good at slowing down and I get frustrated when anything gets in my way, including being chronically ill. The one professional aspiration that I have always held is my drive to help people in need, the marginalized, the forgotten, the invisible, the ones who truly need my help.”

Since her ulcerative colitis and IBS diagnoses, Molly has worked full-time, while often holding additional part-time jobs. At one point she was working five jobs, simply to pay for her healthcare costs! Molly says life got more complicated and extremely overwhelming once she turned 26 and could no longer be on her parents’ medical insurance

“It was stressful and defeating because now I had added pressure to hold a job that provided me with affordable medical insurance to get the care I need as a chronic illness patient. IBD is extremely expensive to manage due to the medication, procedures, doctors’ visits, labs, you name it, it costs a lot. This felt heavy as a 26-year-old still learning how the world works and how I wanted to make the world a better place.”

Molly has had to leave jobs she enjoyed to go to companies with better benefits, which also came with less satisfaction.

“I have been stuck in jobs solely because I needed the cost controlling benefits the organization offered. I have had to say no or not apply to amazing jobs and organizations because the benefits would not cover my chronic illness needs enough where I could afford it. I feel like my health insurance needs as a chronic illness warrior trump my career aspirations, which feels suffocating and leaves me frustrated. I want to do what brings me joy and not just what brings me healthcare coverage.”

New purpose, new goals

After starting her blog, Better Bellies by Molly, beginning to volunteer with the Crohn’s & Colitis Foundation, and connecting with amazing warriors via social media. Molly realized her passion for helping to support the IBD community.

“My goal is to support, educate and empower chronic illness patients, particularly those living with IBD and IBS, so they don’t feel alone, like I did upon my diagnosis. I am also passionate about helping patients feel empowered to advocate for their health. I haven’t figured out how I will turn this into my career, but blogging and social media is a great start!”

Advice for those with chronic illness nervous about working

There is no sugar coating how hard and demanding it is to work full-time on top of the full-time job of managing chronic illness life. Here is Molly’s advice:

  • No job is worth your health. Put your health first whenever you can.
  • Know your rights. IBD and IBS are both conditions listed in the American Disability Act. If you are discriminated against due to your IBD or IBS, speak to someone you trust to fight for your rights. Depending on the organization, employees with disabilities can submit formal paperwork to receive reasonable accommodation, which is any modification or adjustment to a job. Like most things with chronic illness, there is a lot of paperwork involved, but reasonable accommodation is one mechanism to look into in addition to going to HR and asking what other accommodations your employer offers.
  • Who you work for matters. Having an empathetic and compassionate boss and supervisor makes working full-time while chronically ill more enjoyable.
  • Disclose what you wish to disclose when you wish to disclose it. I currently find disclosing my disability status/medical conditions helpful so that my leadership can support me, but it took me six years to get to this level of confidence speaking about my chronic illness life. Give yourself time and grace. I have not always been met with compassion and understanding so follow your intuition and share when you feel ready. I have only held two jobs in the last 10 years where my diagnosis was discussed prior to being hired and onboarded and one of those times it was because my diagnosis related directly to the work and the other was because my advocate work made its way onto my professional resume and after sharing my story online and growing comfortable talking about it.
  • The more flexibility the better! Ask about work life balance ahead of time. It is especially hard to work an 8:30-5 job which a chronic illness because work hours directly conflict with when doctors’ offices are open and operating. Most medical facilities outside of hospitals are not open for routine or diagnostic care on nights and weekends so the more flexibility your work will allow, the better.
  • Follow your passion, even if you must detour. I have had so many career detours due to my health insurance needs and flare-ups, but I have never stopped pursing my passion for helping others, even if that meant starting something of my own outside of my full-time work.
  • Working full time is hard, working fulltime while chronically ill is harder. Juggling work alongside appointments, sick leave, flexible scheduling, and economical health benefits can be overwhelming. These can be hard to find, but as chronic illness patients we are no stranger to doing hard things.

The new perception of working from home

The pandemic has helped companies, organizations, agencies, managers, supervisors, and senior leaders recognize that so much can be accomplished and in many instances that more can be accomplished, by working from home, teleworking more often, and commuting less. It’s not surprising that companies that have pivoted into a more flexible scheduling system will be more likely to retain top talent, including us chronic illness warriors!

“I wish it didn’t take a global pandemic to teach the world that we can work from anywhere, that we can be trusted as employees and that yes more flexibility might actually make us better employees. I think the perception of working from home has drastically shifted and is no longer viewed as an “easy way out” or something that will lead to employee’s “slacking off.” However, I have realized that while many companies and leaders have made this shift, not everyone has and that there is still much room for improvement.”

Working from home benefits patients with IBD and IBS by:

  • Being able to use our own bathrooms, with our preferred toilet paper and easy access. No longer fearing if the bathroom is occupied when the moment hits.
  • Not commuting lowers stress and gives us back the time it takes to travel back and forth each day.
  • Being able to work while feeling ill is easier when in the comfort of your own home, with your blankets, heating pad and supplies to help keep your body as comfortable as possible, while also getting work done. Many times, this would not be possible in an office setting.
  • Leaving the house can be anxiety producing for those with IBD and IBS due to the often very sudden need to use the restroom. Being able to work from home can diminish that fear.
  • Having access and privacy for administering medications throughout the workday is easier done at home.
  • Allowing flexibility to work around doctor appointments, infusions, lab work, procedures, you name it.

Breaching the subject with a boss or superior

Much like the stress surrounding when to tell a love interest about your health conditions, knowing when to the tell a boss you have IBD can be worrisome as well.

Here are Molly’s tips for approaching the subject:

  • Unless an emergency is forcing you to disclose your condition, I recommend sharing when you feel comfortable to do so.
  • Begin by asking if they know what your condition is “Have you ever heard of IBD? Do you know what IBD is?”
  • Based on their answer, follow-up with education and explaining how your condition impacts your life.
  • A good supervisor will ask you how they can support you. Be prepared to ask them for what you need which might be a flexible schedule or understanding that your illness is invisible, and you are in fact a motivated and loyal employee.
  • Sharing is not for everyone, but you might be surprised who else at work is dealing with a chronic illness, bosses included.

IBD Wins in the Working World

*Having bosses who support you personally and professionally lowers stress which supports optimizing mental and physical health.

*Finding ways to unwind—whether it’s exercising, taking Epsom salt baths, or going to therapy.

*Use each professional experience to help shed light on where your passions lie. You’re constantly learning what you like, what you don’t like, and each experience helps to inform the direction your career will take.

*Celebrate all the wins—large and small.

*Be mindful of how your employer handles a hospitalization, flare up, or surgery. It’s telling to see how your work family supports you or doesn’t in times of need. Your health should always be the top priority.

*While chronic illness may hijack where you thought you would be in your career, it may help dictate what you enjoy doing.

“As chronically ill workers we need to voice our needs and push for systems to change so that we can break down barriers, make working more accessible to the chronic illness community, and to obtain and retain talented chronic illness employees.”

Key Takeaways

  • It won’t be easy, but you can do it!
  • Feel empowered to stand up for yourself.
  • You deserve to be accommodated in the workplace and it is not a weakness to have a disability or need special needs.
  • Chronically ill people belong in the workforce.
  • You can still achieve your dreams after diagnosis, they might just look different.
  • Your career path might not go according to plan, and that is ok.
  • Follow your passion and heart whenever possible.
  • Working full time isn’t the answer for everyone.
  • Give yourself grace.
  • No job is worth your health.
  • If a job is making you sicker due to stress, toxic environment, or lack of flexibility, work towards changing that situation.
  • Your aspirations, dreams, goals, and plans will shift over time. Honor where you are and how far you have come!

Connect with Molly

Instagram: @betterbelliesbymolly

Facebook: Better Bellies by Molly

YouTube: Better Bellies by Molly