As the weeks of war go by in Ukraine, our IBD patient advocate extraordinaire, Elena Skotskova, continues to do all she can to ensure those with Crohn’s disease and ulcerative colitis are feeling supported in the face of the unknown. Elena and I have become pen pals of sorts over email. A world away. Our worlds so different. But our understanding of what it’s like to live with IBD very much the same. Here’s Elena’s latest update sent April 13th, 2022. She remains about 30 minutes outside of Kyiv at her mother in law’s home.
Dear Natalie! Now we are engaged in the distribution of humanitarian aid, which came to us from Dr. Falk (a German pharmaceutical company). I want to share with you the information about helping Ukrainian patients with IBD. Ever since we received the medicine from Dr. Falk we did a great job: 1. We sent medicines to 12 hospitals in different cities of Ukraine, where patients with IBD are treated; 2. We have collected more than 400 applications from patients who currently do not have the opportunity to go to their doctor. 3. We have sent more than 200 packages of medicines to patients throughout Ukraine who do not have access to a doctor 4. There are still about 200 parcels left to send, and I think we can do it before the end of the week.
We have received a large number of letters of thanks from patients who have received medications. We tried to ensure that all patients had enough treatment for at least two months. Earlier we received two parcels from our Greek friends, which were sent via Poland. Everything that was in those parcels (medical food, colostomy bags, medicines, etc.) we distributed to patients and hospitals.
On Monday, April 11, we got a big package from Estonia with colostomy bags and stoma care products. We also send colostomy bags to patients who need it.
I have a lot of work now, and I am constantly in touch with patients. We have a lot of requests from patients from different parts of Ukraine. Particular pain is the regions that are occupied by Russia. It is impossible to deliver medicines there, it is impossible to help patients. I hope that someday they will be able to get out through humanitarian corridors, and then they will receive medical assistance.
This is Galina, our volunteer, a doctor who herself sent more than 300 packages of medicines to patients. She lives in Lviv, where humanitarian aid comes from Europe. This charming lady herself takes heavy boxes, sorts them, forms packages, and sends them out to patients. She does this at night 🙂 And during the day she treats people. I am very grateful to her, she is an irreplaceable person in our team.
I also wanted to share information with you we set up on our “Full Life” site that gives people around the world the ability to make donations using credit cards. You can do it from the link https://www.gofulllife.com.ua/donate/ Scroll down and click the: “Help the project” (Допомогти проекту) button. Once there, you will be directed to choose a currency. (USD or EUR, depending on which currency the credit card supports) and write the sum.
The money raised will be used to buy medical nutrition for children with IBD and to buy medicine for IBD patients who have lost their jobs and incomes.
My husband and I are going to go to Kyiv on Saturday (April 16). We need to meet the humanitarian cargo from Lviv. And also, I need to deal with colostomy bags that came from Estonia and send them to patients.
Many people are already returning to Kyiv, I hope that my hairdresser will also come back and cut my hair 🙂 During the war, it is a great happiness for us just to get a haircut or get medicine. We have such small military joys.
On the last day of 8th grade most kids are anxiously awaiting summer and moving onto high school, but for Candace Monacelli, that wasn’t the case. Instead, June 7th, 2007, she was diagnosed with Crohn’s disease at age 14.
As you can imagine, a lot has transpired since that monumental day. Candace now works as a morning meteorologist and reporter in Grand Rapids at WXMI-TV. She’s been at her current station for five years and has worked in the TV business for seven. This week she shares how Crohn’s has impacted her life but didn’t rob her of her hopes and dreams of working in TV news.
When it comes to going after your dreams and following your career aspirations, I see a lot of Candace in myself. We recently connected on Instagram and realized the parallels of our experience. Despite my Crohn’s diagnosis, I went on to work in TV news 3 months after finding out I had Crohn’s. I worked on morning shows for 7 years, she’s a morning meteorologist. We both do/did what we could to be the bubbly/happy on-air morning gals, while facing major battles and pain internally. We both encountered serious hospitalizations and bounced back to be on camera shortly thereafter. Being on steroids is hard enough…going on camera while on steroids and being judged by keyboard warriors and unkind strangers is a whole different story.
A walk down memory lane
“My family and I had never heard of Crohn’s disease before and knew nothing about it or what my life would look like moving forward. I was sick for months prior to my diagnosis. My parents and I learned along the way, but my mom was my right-hand lady at every doctor’s appointment trying to figure out my illness. My parents were just so happy to have a name and a cause to me being so sick, they just described it as my stomach not being normal and we would figure this all out together. Then, I was put on steroids which resulted in weight gain and being bullied.”
Aside from hurtful words from her peers and juggling life as a teen with doctor appointments and colonoscopies, Candace says her disease at the time was well-managed with 6mp. When she moved onto college, she dealt with the challenge of wanting to live life like a typical student. By the time she was ready to enter the real world she not only graduated from college but also onto biologics (Humira).
Life in the TV spotlight
While in high school Candace discovered she loved public speaking and visited a local television station—she was hooked. Since she was already a decade into her patient journey, she didn’t second guess going after her dream of working in TV news as a meteorologist and reporter.
“Everyone thinks of Crohn’s as a pooping disease and while it is so much more than that, it is still a factor of the disease. The hardest part of my job is the limited time or access to a bathroom. Either I am covering something in the field with no restroom nearby or I have two minutes during a commercial break to hurry to the bathroom and be ready to go on air again. There’s been some interesting behind the scenes moments, but luckily, I am open with my crew and choose to be lighthearted about the bathroom aspect.”
Over the years, Candace has learned how to read her body and know when she can’t push through or make it on air.
“When the light goes on, it’s showtime. No matter how I am feeling… there’s been many days where I feel terrible but must put on a smile because I look perfectly healthy and it’s my job to come off that way. Being in the public eye with IBD can be pretty taxing some days.”
Juggling surgeries, abscesses, and fistulas
Up until this story—Candace has not spoken openly about her struggles with abscesses and fistulas. As a public facing person, discussing this private and often taboo topic is something that takes a lot of guts to be open about.
“Abscesses and fistulas make you feel so broken and constantly worried that if someone finds out the truth, they will instantly think you are the dirtiest person on this Earth. My palms are sweating, and I feel like I could puke, knowing strangers will now know this about me. But I am sharing in hopes to help that one person that is feeling just as alone as I do somedays.”
Even after five surgeries, Candace still has problems with abscesses and fistulas and somedays are better than others with numerous new challenges in her life.
“Sitting for a long time is now my own personal Olympic sport because it’s painful some days. I used to consider myself a runner, but that is now off the table for me, and my bathroom breaks are different. It’s been a scary learning curve trying to figure out how to handle something so foreign, that is now very much a part of every aspect of my daily life.”
Candace joined specific Facebook groups for her condition, as she desperately searched for others going through the same reality. More than anything else her family and friends are really what get her through.
“Every single person close to me has helped me know I am not alone and helps me get through difficult days, whether it’s a simple ‘how are you feeling?’… or crying with me on the bathroom floor.”
Going back on air after surgery
The first surgery to treat her abscesses and fistulas was an emergency and was unexpected. Candace was back on air four days after being discharged from the hospital.
“It sounds just as crazy as it was, but I am a stubborn Italian and never let Crohn’s win, so I somehow went back to work. My parents and boyfriend (now husband) weren’t happy with me, but I insisted on returning to the job I love. I remember having to practice getting in the car and making sure I could handle driving around my neighborhood the day before, since I leave for work at 2 in the morning.”
Candace remembers waking up that day, knowing what she just went through, and what it felt like to go back on camera in front of thousands of people who had no clue what she was enduring.
“I remember talking to myself on the ride to work thinking “what are you doing Candace you are a mess.” That first day back was mentally very hard to smile and pretend I felt like a million dollars when I did not. No one wants to watch the “sick” meteorologist on air so I couldn’t be that girl. Behind the scenes was an interesting hot mess as I had to put a blanket down to lay on the floor to work or just take a break since I couldn’t sit – I had to lay down at work for a month or more after each surgery.”
Candace learned her lesson and she didn’t rush her recovery after more recent surgeries.
“I found that allowing myself to heal and rest is not letting Crohn’s win but doing what is best and needed for myself in that moment. The stubborn Italian in me still struggles with giving myself time and grace, so it’s a work in progress.”
Being an open book with viewers and the community
Candace’s viewers know she has Crohn’s disease. She decided to openly share her experience with IBD to spread awareness and help make a difference.
“If I can share my story and experiences to reach one person and make them not feel so alone, then it’s one thousand percent worth it to me. I’ve also covered and shared numerous stories of IBD warriors within my community and get media coverage for all the Crohn’s and Colitis foundation events every year. The more awareness the better and I am blessed with a perfect platform to help make that possible.”
Advice for fellow IBD warriors
Candace has this advice for anyone worried about their futures—whether it’s a parent with a child who has IBD, or someone diagnosed at an early age.
“Where there is a will, there’s a way. Everyone has a cross to carry in life and our cross just happens to be IBD. In a weird, twisted way, this disease makes you strong enough to conquer whatever you put your mind to. We see people with IBD be professional sports players and movie stars, to everyone in between, including little old me… every IBD warrior can do whatever they dream to be one day. We are warriors fighting a battle every day, whether it’s big or small. Even when you yourself or someone you care for is sick or having a tough day, we need to know better days will happen again – just like the weather it can’t always rain forever…. You will feel better one day.”
I asked Candace what she would tell her younger self if she could go back to when she was diagnosed in eighth grade. Here’s what she said:
“IBD will challenge you more than you can ever imagine but will also make you into the strong person you love. The life God gave you is tough, but it’s nothing he knew you couldn’t handle. It’s a battle you won’t ever lose. One day you will get everything you prayed for, even through everything Crohn’s throws your way.”
Candace is in remission in terms of her colon, but her rectum is still problematic and causing active disease. She gets Remicade infusions and avoids eating too much dairy, spicy foods, and salads. Candace drinks one cup of mushroom coffee most days and eats a mostly plant-based/Mediterranean diet.
Finding love with IBD
Candace met her husband on Match while working in her current TV market. She says they fell in love fast, and the rest is history!
“We moved in together, he proposed, and we had to postpone our wedding because of COVID. Now, we’re finally married and have a new house and a puppy. Life is good! My husband is the most loving and caring man helping me through all things Crohn’s. He is a saint straight from the heavens being right there by my side through everything. He has even spent one of his birthdays with me in the hospital for a surgery. He pushes me when I’m in a hole and feeling sorry for myself to help me realize my worth and remember that Crohn’s doesn’t completely define me.”
For those of us who live in the United States it’s been devastating to watch the news coverage coming out of Ukraine since the war began there February 24th. I was lucky enough to connect with an IBD warrior, mom, and patient advocate named Elena Sotskova in the midst the chaos. She’s been working tirelessly for years to bridge the gap for patients and show all that’s possible in life while living with Crohn’s disease and ulcerative colitis. We’ve been emailing back and forth. I pray each day, multiple times, for her safety and check in often to make sure her and her family are unharmed. When I see her name pop up in my email inbox it always comes with a big sigh of relief.
Today’s update is something many of us in the patient community have wondered and worried about—whether those with IBD are having access to their medications and ostomy supplies. Here’s the latest from Elena.
Dear Natalie! Thank you for not forgetting about me, for your care and prayers. We are quiet now. The Russians have retreated from Kyiv and the region and are gathering their forces in the east. A big fight is expected there.
Kyiv and the Kyiv region are still life-threatening. A lot of mines and shells. Our people are working 24/7 to clear the area. We cannot return home to Kyiv yet. 😦 Thank God our house is not destroyed, and someday we will be able to return there. But many people are not lucky, they now have no house, no apartment. Very large destruction in Kyiv region.
A lot of people died, many tortured and raped. Even children. You must have heard or read about our Bucha. This is such a horror that it’s even scary to think about. When I think about how many people have already died because of this war, I cry. I don’t understand why the Lord punishes us, Ukraine, our people like that. What have we done wrong?
A few days ago, my friend’s husband died in the war. He wasn’t even 40 years old! And there are thousands of such people. Most of all we want peace, and we want the Russians to leave our land. Forever and ever.
I try to work hard so as not to think about the horrors of war. I work 15 hours a day, then I just fall down and sleep. So, it’s easier for me. We received a large shipment of drugs from Dr. Falk (a German pharmaceutical company), 2 tons. Happy doctors and patients who unload them. Getting the necessary medicine is happiness for us now. Now I am engaged in distributing medicines to hospitals, and to patients, all over Ukraine.
Each patient who comes to me for medicines is a separate story and a separate pain. Someday I will write about it. During the week I heard hundreds of different stories, and they are all sad. I’m glad I can help them a little.
And I am glad that European friends are actively helping the IBD community. Yesterday Japan wrote to me and offered to help. The whole world is with us!
Stay in touch with you! Hugging you, Elena from Ukraine
When Stacey Collins was diagnosed with ulcerative colitis in 2012 at age 21, she couldn’t drink water without becoming violently ill. She remembers asking her GI immediately after diagnosis, “What can I eat?” out of desperation and sheer exhaustion. His response? “Whatever you want. Since you are anemic, you should eat more red meat and drink some dark beer. Enjoy college. You’re young. Live your life. Diet has no effect on these diseases.”
Ding. Ding. Ding. That monumental conversation in Stacey’s patient journey transformed her career direction and inspired her to focus on the relationship diet has with IBD.
“I didn’t feel like he heard me. I knew how food felt in my body, and it certainly didn’t feel like it was inconsequential. This led me to seek out [what I had no idea was] misinformation and too many self-directed elimination diets, but this resulted in an ever-evolving interest in nutrition, and eventually, I enrolled in graduate school and became an IBD Dietitian.”
Stacey knows all-too-well how common food restriction is thanks to the anxiety that often accompanies the hard moments of life with IBD. She’s been on a mission to search for how we can eat MORE and live more fully with these diseases. But mostly, she wants to be a resource she never had. Stacey is passionate about making multidisciplinary resources (especially IBD Dietitians) more accessible to patients.
Prevalence of disordered eating in the IBD community
“Avoidant Restrictive Food Intake Disorder Prevalent Among Patients with Inflammatory Bowel Disease” is a cross-sectional study that surveyed 161 participants with IBD, 14% met the criteria for a very specific type of eating disorder that is emerging from the research to be more commonly to be correlated with IBD: avoidant-restrictive food intake disorder, which is essentially when patients begin to associate food with GI symptoms and omit foods because of symptoms or fear of symptoms (these patients were also found to be at risk for malnutrition). Interestingly, 74% of these participants were found to be avoiding foods even in the absence of GI symptoms. It’s important to note that this screening tool hasn’t been validated in research especially for patients with IBD, but there are studies underway that are using screening tools tailored to the IBD patient community.
“Assessing for Eating Disorders: A Primer for Gastroenterologists” found that close to 1 in 4 people with IBD develop an eating disorder. There seems to be a bi-directional relationship between GI symptoms and eating disorders because of the “starvation brain” that comes from eating disorders, were maladaptive disorders happen from a prolonged period of restriction, really highlighting the need for better malnutrition screening and working with mental health professionals and IBD dietitians to collaborate with GI doctors.
I conducted a poll on Instagram asking the IBD community: “Do you have a complicated relationship with food?”…89% of people who responded said yes.
“Eating disorders and disordered eating are a bit different. Disordered eating isn’t a diagnosis; it’s on the spectrum between normal eating and an eating disorder.”
The damaging effects of malnutrition
Malnutrition has been shown repeatedly in research to lead to poor clinical outcomes, poorer prognosis, poorer response to therapy and, therefore, a decreased quality of life, so it’s important that this be avoided if possible.
Stacey explains, “A state of active inflammation/disease will demand more energy of the body, so restriction is so often not the answer to control inflammation. This review of the literature from 2020 cited research that malnutrition in hospitalized patients with IBD may be as high as 85%. A retrospective nationwide study in 2008 highlighted the prevalence in hospitalized patients with IBD with non-IBD patients who were hospitalized with benign disease and found it to be much higher (6.1% and 7.2% versus 1.8%; statistically significant).”
Malnutrition can be a complicated diagnosis to land on, because it takes several factors into account, but in IBD it results from:
Decreased oral intake common in active IBD
Maldigestion, malabsorption, enteric loss of nutrients, rapid transit
increased energy needs with inflammation or infection, adverse effects of medical therapy
Stacey’s advice for the IBD community regarding nutrition
General ideas to keep in mind for how someone with disordered eating behaviors might start to shift their relationship with food.
If you’re struggling with feeling a loss of control around certain foods, try to assess your hunger level before you experience that dizzying feeling of ravenous consumption.
“If your hunger is often 8-10 on a scale of 1-10, try supporting your body by finding snacks that feel good in your body to have throughout the day, or eating more at your meals when you are able to eat. Work to avoid skipping meals, especially if you have active disease.”
Instead of a lack/fear/restriction mindset, you can begin to switch this to a mindset of abundance by simply making notes (in the app on your phone) of foods that feel good and healing in your body. Jot down restaurants that are accommodating to dietary requests or have especially great bathrooms.
“It takes time but training your body and mind to seek out foods that feel good can make a difference in your stress levels. The notes app has been especially helpful for me when I’ve been too tired to remember which foods I like, or when I’m quick to skip a meal to go to bed. If you find that this is a really challenging exercise after a couple of attempts, don’t hesitate to reach out to a dietitian for support!”
Lastly, try not to moralize foods: good vs bad; clean vs dirty. These are often labels given to foods by society and not by science. Instead, work to tune into the experience of eating and how food feels in your body.
“Food is so much more than calories in/calories out; it’s cultural, social, celebratory, mundane, and even socioeconomic. The joy of eating is important to life, and when we start to moralize foods, this often creates rules around food that are unsustainable for life’s variability. Work to instead shift the focus to overall food patterns vs hyper-focusing on labeling ingredients.”
The red flags caregivers can watch out for
Stacey says frequently skipping social events, eliminating entire food groups, and talking a lot about food can be signs of disordered eating.
“A lot of these behaviors are praised by society as “oh they’re so disciplined!” and can be tricky to spot sometimes. Simply asking your loved one, “What sounds good?” and if they’re really struggling over time to answer this question, then reaching out to a dietitian for support. For caregivers, I cannot stress enough the importance of avoiding any body comments, good or bad. Steroids are hard; we get puffy. We lose weight when we aren’t doing well, and often this is when people are quick to validate us externally.”
Bodies are dynamic, and all bodies are always changing, and sometimes ours with IBD changes more dramatically compared to a lot of other bodies without IBD. Instead, affirm your loved-one by simply spending time with them, or telling them what you value about their personality.
Three surgeries, multiple medications, and a j-pouch later
Since her diagnosis, Stacey has been on Remicade, multiple mesalamines, steroids, Inflectra (biosimilar), Entyvio, Uceris, Xeljanz, Imuran, Stelara, and Humira.
On my 10th colonoscopy in the height of the COVID-19 pandemic, she was told she needed to start thinking about surgery.
“I always thought surgery was a last-ditch effort and worst-case scenario, and I struggled to accept this reality, but then I thought, “if there’s ANY chance that life on the other side of surgery is better than it is right now…I can do it.”
In 2021 Stacey had three surgeries and she’s now 7 months post-op from her takedown surgery. She is grateful for the surgeries and thrilled to be finding a new quality of life. Having a J-pouch has changed her relationship with food.
“Initially, I was worried about my limited diet since foods can take time to add back in, and I had to intentionally approach this transition with so much tenderness and compassion. “It takes as long as it takes,” is a post-it note that’s on my mirror to remind me that if I can’t tolerate a whole salad today, my body is still learning, and it takes time! As time lapses, I continue to learn that I really can trust my body, and she’s happiest when I keep her well-fed and hydrated. J-pouch life has granted me much more liberation around food than I was ever able to experience with UC, and I’m grateful for that.”
Since IBD is a GI disease and everyone needs nutrition to survive, EVERYONE has an opinion. So many misconceptions about food/diet in IBD are rooted in the stigma of the disease itself (people trying to avoid meds or surgeries at all costs; people trying to control GI symptoms).
Most common food-related misconceptions:
food needs to be eliminated to control inflammation
low fiber diets are needed for everyone with IBD
dairy and gluten should be avoided at all costs
Getting help and treatment for disordered eating
Since food restriction is anxiety-driven, it can be difficult to self-heal from disordered eating (since anxiety isn’t a choice). Stacey highly recommends a multidisciplinary approach from the support of GI-psych or a counselor with a registered dietitian who specializes in IBD.
Stacey is a virtual IBD RD. She recently announced an exciting collaboration called “Romanwell” (Instagram: @weareromanwell) with fellow IBD RD, Brittany Roman-Green, who is a well-respected patient mentor. Romanwell is a virtual IBD nutrition private practice and an amazing new resource for our community.
“We both genuinely love helping people through their IBD journey. We both know what it’s like to need support learning to trust our bodies as we navigate all the nutrition noise, and we’d like to think that lends well to helping us approach patients from a place of empathy.”
Click here to read Part 1: The Humanitarian Disaster in Ukraine and What this Means for Those with IBD
Elena Sotskova is a financier who has lived with ulcerative colitis for 21 years, her friend, Artem, works in IT and has Crohn’s disease. Elena and Artem teamed up with several other IBD patients in 2018 to launch Full Life, an organization created to show those living with Crohn’s and ulcerative colitis are not alone in their struggles. They launched a website that features helpful articles for patients, they conduct “patient schools,” and connect with doctors in different regions of the country to offer additional guidance and support for patients.
“The biggest problem in Ukraine, is that we do not have treatment programs for patients with IBD. We do not have insurance to cover medicine, and all patients buy medicines at their own expense. As people across the world living with IBD know, these medications come with a hefty price tag, making it impossible for people to afford proper treatment. This forces many Ukrainian patients to refuse treatment and eventually become incapacitated. This was an issue before the war and even more so now,” explain Elena.
Therefore, one of the main tasks of Full Life is to collaborate with public authorities, such as Ministry of Health, and advocate for rights of patients while working diligently on programs for affordable and accessible treatment.
“We had made such progress for the IBD patient community prior to the war. But I’m afraid now the war has set us back and we have to start all over again.”
The inspiration behind Full Life
Elena tells me she was inspired to create Full Life because after living with ulcerative colitis for more than two decades she’s learned coping skills and how to manage her disease. She thinks about her younger self and the pediatric patients who feel isolated, panicked, and depressed in their journeys.
“My task as a mentor is to lead by example and show that you can live a full, enriched life with this disease. I love communicating with young patients and helping them see all that’s still possible for them to enjoy and achieve.”
Full Life also provides psychological and mentoring assistance to IBD patients in Ukraine.
“Prior to the war and now—the main issue is continuation of treatment. We only have one way to get treatment covered and that is through participating in clinical trials. We have about 11,000 patients with IBD in Ukraine and one third of those patients participate in clinical trials so they can treat their disease. Because of the war, many clinical trials and centers for these programs came to a halt.”
Of all the biologic drugs to manage IBD utilized across the world, the only one available in Ukraine outside of a clinical trial is Entyvio.
How the war impacted Takeda (maker of Entyvio in Ukraine)
“Unfortunately, because of the war, Takeda pharmaceutical’s company was forced to close its warehouse in Kyiv, and patients who took Entyvio are left without treatment. I am in touch with Takeda representatives, and they promised to resolve the issue of access to treatment soon.”
I also reached out to Takeda here in the United States and was told by their media relations department that they are continuing to evaluate the situation closely and are making every effort to protect their colleagues in Ukraine along with continuing to supply patients in Ukraine and elsewhere in the region with their much-needed treatments. I went on to ask how that is possible with so many people fleeing their homes and becoming refugees.
“We know that many patients are displaced, and this is an extremely difficult time for patients, their loved ones, health care providers, and countless others. Access to medications can be an issue. We are working hard as a company to offer medications to those in need through the appropriate providers of care. We also want to make sure that patients have access to direct support. Since the conflict started, we have worked with stakeholders in the country to ensure the supply chain resumes. Those under the Patient Assistant Program for IBD treatment have received their medication in Ukraine. We have also set up a web page for displaced patients with relevant contact information per therapeutic area. We encourage patients and providers in Ukraine to reach us at https://takeda-help.com.ua/#/,” said Megan Ostower, Global External Communications, Takeda.
The challenge of logistics when it comes to drug access and delivery
Most patients from Ukraine rely on mesalamine (Salofalk, Pentasa, and Asacol). Elena has been on mesalamine since she was diagnosed.
“It’s not cheap for me, but it’s the only way I can lead a normal life and keep my illness under control. Before the war, patients had access to mesalamine at local pharmacies or they could order it abroad. Now, most pharmacies in Ukraine are shut down and there’s a huge problem with logistics. It is impossible to deliver drugs from Europe. So now, it’s nearly impossible for us to even get mesalamine.”
“We are constantly in touch with Poland, Estonia, Italy, and Spain. Every country wants to help support Ukrainian patients. But Full Life does not have an account in foreign currency, only in UAH (Ukrainian currency). We never anticipated our country and people would be attacked and that there would be a war.”
I reached out to Bella Haaf is Deputy Director of the EFCCA.
She said, “Please be aware that the situation is very difficult out there. We are trying to support the patients associations as much as possible, but we are unfortunately faced with a lot of red tape. As a patient association, it is not legal for us to purchase IBD medication and ship it to our colleagues, which would be a simple solution. So, in the meantime, we are talking to the ministry levels, NGOs (non governmental associations), physicians, and pharmaceutical representatives. Unfortunately, we have experienced little progress. We had hoped to do a private collection of IBD medicines, but again this is legally not possible.”
Elena’s advice for IBD patients in Ukraine and refugees
Elena hopes all Ukrainian IBD patients fleeing the country bring their medical documents (even just a photo on your phone to prove diagnosis).
“To do this, patients need to state their diagnosis when they cross the border and advise medical professionals they need continuous treatment. If you couldn’t bring your medical documents, try and remember what doctors in Ukraine diagnosed you and prescribe your medicine. If there are problems with getting treatment in EU countries, contact Full Life and we will work to solve your issue through local patient agencies.”
For now, each day of destruction and heartbreak leaves the people of Ukraine feeling helpless, especially those with a chronic illness that requires daily management and care.
“I think now neither I nor other Ukrainian patients will be able to write a happy story. We all have the worst period of our lives right now, as our country is in war. We are now very upset and depressed. But we are glad that our American friends remember us and are worried.”
The pharmacy crisis
“What will happen next, I do not know. There are no pharmacies in the village where we live and work. The logistics from Kyiv are very difficult. No delivery companies work.” Today (March 31) Elena’s husband is headed to Kyiv to try and get her medication, which of course comes with many dangers and risks. I will share an update once one is available.
Elena tells me only about 30 percent of pharmacies remain open in Kyiv right now and that there is a “catastrophic shortage of pharmacists left” since so many fled the country.
“Now in those pharmacies that work, there are huge queues, and almost no drugs, because they cannot deliver for various reasons. If I stop taking my drug, I’m afraid it will soon be exacerbated disease. You know how stress affects our disease. This war has caused terrible stress and so many patients have it worse. There are areas in Ukraine where there is no medicine, no food, no water. For example, in Mariupol, we don’t even know if people are alive there. So many have died each day from shelling hunger, and disease. Who could have imagined this in our time?”
Using plastic bags as ostomy bags
Sadly, Elena says many of the patients she’s connected with through Full Life are no longer in touch.
“I don’t know if they are alive. For ostomy patients, they are left without their necessary means for hygiene. Some of my peers have been gluing small plastic bags around their stomas. I am currently talking with patients and taking note of all their needs. There is a doctor in Lviv who treats patients with IBD and that is where we are having all IBD humanitarian aid sent. The Patients’ Association in Poland is actively helping coordinate the delivery of medicines and hygiene products from Europe to Ukraine as well.”
Elena says she is constantly in contact with European Associations, and they all promise to help.
“I try to be in touch with our patients, I try to support them somehow, but it is difficult. The prospects are unclear, it is unclear when this war will end.”
Regardless, Elena works tirelessly to be a pillar of support for others, even as she worries about her own wellbeing. I feel fortunate to have connected with Elena in recent weeks. Her updates and perspective are a reminder of how far IBD treatment still needs to be come in other parts of the world and of the extreme challenges so many people with chronic health conditions are facing in this war.
“As for our progress in receiving humanitarian aid, we are currently waiting on a small package from Greece. The first of two. The second parcel should arrive later. Dr Falk (a pharma company) also donated Budenofalk and Salofalk to us. And on Friday (4/1), a German non-governmental organization plans to send more of these medicines to Ukraine.Our Ministry of Health sent a letter to the Polish Ministry of Health with a list of drugs that Ukrainian patients with IBD need. We are waiting for a reaction from the Polish side.”
The Full Life organization is a member of the Charitable Society “Patients of Ukraine” and they collect help for all patients and can be of support. Click here to see Facebook posts.
Stay tuned to Lights, Camera, Crohn’s for continued updates and keep Ukraine and its incredible people close in thought and prayer. Thank you to Elena for her openness and willingness to email me back and forth as she lives through these extreme challenges. We’ve built a friendship from afar and I’m grateful she’s sharing the IBD patient experience through war so the rest of us can have this unique understanding and perspective.
As she fears for her life each day and every night in her homeland of Ukraine, ElenaSotskova thinks back to when her body started going to war against ulcerative colitis. She was 21 years old. Now, as a 47-year-old IBD mom, she shares firsthand experience of what it’s like to live in absolute chaos and devastation while trying to manage a chronic illness like IBD. Every morning Elena and her family wake up at 6 a.m. to the sound of explosions and gunfire. Oftentimes the internet and electricity go in and out, with repair workers constantly having to restore power.
Before we get into the utter heartbreak and unthinkable sadness, here’s some background. This isn’t the first time Elena has had to run from her home to try and reach safety. Shortly after her ulcerative colitis diagnosis, she fled with her 3-month-old daughter to Kyiv from Crimea, to avoid an abusive husband. At the time, she had the equivalent of 25 U.S. dollars in her pocket. Prior to becoming a mom, Elena worked for one of the largest banks in Ukraine, so she was confident she’d be able to land back on her feet in no time and support herself and her daughter. The stress of the divorce and being forced to start anew exacerbated her IBD.
“My condition was worsened by constant diarrhea, bleeding, low hemoglobin, and as a result, constant fatigue. I tried not to pay attention to it as I needed to work and make money for myself and the baby. My ulcerative colitis limited what I could do and where I could go. I used to be unable to go for walks unless I know where the restrooms were. I always had spare clothes with me and wet wipes, in case I did not make it in time.”
Since then, Elena has managed her ulcerative colitis with Mesalamine, in large doses (6-8 grams per day).
“In Ukraine at that time there was no biological therapy, and even clinical studies of such therapy did not take place. All that was available to patients were hormones and mesalamine. In addition, in Ukraine there is no compulsory insurance medicine (until now), there are no state programs for the treatment of patients with ulcerative colitis and Crohn’s disease, so I and other patients must buy drugs with our own money. And they are, as you know, not cheap. Compared to the level of income in Ukraine, it is expensive.”
How love found its way
Elena says she was working to buy her medicine. It felt like a vicious, never-ending cycle. But Elena’s luck in the love department took an amazing turn.
“I was lucky, I met a wonderful man, named Leonid who has a son. Leonid later became my second husband. I immediately told him about my illness. He accepted me, my IBD, and my child. He wouldn’t turn away from me or be ashamed when I had an accident at an event or in a public place. He helped me and supported me. And as a result, I stopped being nervous about my ulcerative colitis. I stopped worrying, and after I became calmer, the disease slowly began to subside.”
Leonid also started to take care of all the costs associated with her IBD treatments. Elena credits him for reviving her medically and emotionally, allowing her to reach remission after chasing after it for years. She was able to travel comfortably away from home and see the world through a different lens.
Prior to the war with Russia, Elena had big plans for herself. She aspired to begin her MBA and travel to English-speaking countries.
When the explosions hit
“All plans collapsed at 4 a.m. on February 24, 2022. We woke up to the explosions, saw the message “The Russians are bombing Kyiv, the war has begun.” That was more than a month ago, but it seems like we’ve been living in this nightmare for ages.”
Elena’s daughter, Alina, had recently arrived in Poland to study, but she happened to be home in Ukraine with family when the war started. Prior to this happening her travel plans were to fly back on February 27th. Of course, that all changed.
“She was supposed to fly back to Warsaw on Sunday, but war broke out on Thursday. Immediately, air traffic over Ukraine stopped. And hell began. Kyiv was bombed from the very beginning, we sat in the bathroom during the air raid, went down to the basement or went to the shelter. We did not turn on the lights in the apartment and taped the windows with duct tape so that they would not be knocked out by the explosions. We walked the dog for 5-10 minutes, near the house, so that if the shelling started, we could quickly hide. We live in Kyiv on the 7th floor, and most of all I was afraid that a bomb would hit our house, and we would either be overwhelmed or burned in a fire.”
Elena says for days on end she sat with her husband and daughter in their apartment. Alina would constantly cry. They learned that evacuation trains were leaving Kyiv for western Ukraine. At this point, they decided to send Alina back to Poland.
Nights spent at the railway station
“The most terrible were the three days that Alina and I spent in the basement of the railway station in Kyiv. There is a curfew, you cannot go outside in the evening, in addition, it was dangerous to go outside, because they are constantly shelling. My daughter and I got to the train station and decided to wait here until she could take the train to safety. My husband and son stayed home with the dog.”
The trains to leave Ukraine were like something out of a horror movie. Instead of a train car fitting the usual four people, they were packed with 20-plus people. People were ready to stand for an entire day just to leave Kyiv.
“Alina could not get on the train that was going to Warsaw, and we stayed overnight at the station. At night, the air alarm did not cease, explosions were heard, we went to the shelter (basement) of the station, which for three days turned into a home for us. We tried to sleep on the floor, it was warm, but the main thing was that it was safe. Finally, on the second day, we managed to put Alina on the train to Lviv. She left, and I was standing on the platform crying and praying that the train on the way would not be shelled, and my daughter would reach Lviv intact.”
Elena had to stay alone at the train station for an additional night because of the curfew in Kyiv. She was afraid her IBD would start acting up from the overwhelming stress and worry and terrified she was going to be killed.
“My gut understood me, it “behaved quietly”, and did not give me cause for concern. During the 21 years of illness, I learned to negotiate with him. On the fourth day, when the curfew was lifted, I was finally able to return home, wash myself and clean myself up. And my daughter had already reached Poland and was safe. We thought that somehow, we could adapt to this situation. We had food, water, gas, electricity, and Internet. We thought that we could somehow live in Kyiv. But this turned out to be unrealistic, as soon as dusk came, the city was pierced by an air alarm, it turned on several times during the night.”
Deciding to leave Kyiv
Bombing began each morning between 3 and 4. Elena and her family stayed in their clothes and didn’t sleep. She would take her dog and lock herself in the bathroom while her husband and son were standing in the hallway where there were no windows.
“Then a cruise missile hit a television tower, close to our house. It was afternoon, her son had just gone out to the store for bread, and there was an explosion, a crash, a fire. People who were nearby were killed. My husband said that we needed to leave Kyiv, it was extremely dangerous.”
So that’s what they did. They left for Elena’s mother-in-law’s house who lives in a village outside of Kyiv. There are no military or infrastructure facilities there, so they are hopeful it will not be bombed. As you are reading this, Elena is still there.
“In the village it is calmer, the battles are 30-40 kilometers (20-30 miles) away, we constantly hear artillery shots, gunfire, explosions, and flying missiles. But there is no air raid alarm, which was so exhausting in Kyiv. It’s still impossible to sleep normally. We are afraid that we will be occupied, and we are not where there are active battles.”
Running out of IBD medicine
But, Elena now faces another major issue. She will run out of her IBD medication this week and there is no way to buy it or receive it. Since the war started, she’s heard from countless other patients in the same bind. Doctors have fled, there’s no place to safely receive treatment, and for those who are now refugees or without jobs, they struggle to afford their medications. Elena knew she had to do something.
“I began to write to the European Crohn’s and Colitis Association, manufacturers of drugs, everyone who I could, to find out how to help our patients. Poland and Estonia immediately responded. They understand if Ukraine does not resist, the war will go on, to Poland, and the Baltic countries may also suffer. Now we are in constant contact with our European colleagues and are waiting for humanitarian assistance from them. Packages from Greece are supposed to arrive any day now.”
While Elena’s ulcerative colitis is under control now, she’s been forced to reduce her daily medication dose by half to try and keep medication in her body for as long as she can. She’s starting to feel that reminiscent pain we all know too well when our intestines are making themselves known. The pain, bloating, and diarrhea have been more consistent for her, but she doesn’t feel she’s flaring yet.
“I’m very scared that if I go into a flare, there will be no one and no place to treat me. I am afraid that this war will drag on for a long time, and then it is impossible to predict the condition of either mine or our other Ukrainian patients.”
Her friend was able to find her mesalamine in Kyiv. She bought the medication, but it’s been a week now and the package has not arrived to Elena’s new address. Tomorrow (March 31), Elena’s husband will venture back to Kyiv to try and get Elena the medicine she relies on.
She tells me she no longer cries or has emotions and that every day feels like déjà vu. Sometimes she feels like a robot in an out of body experience. Elena says the Ukrainian people are steadfast, strong, and remain hopeful they will be victorious in the end.
Tomorrow on Lights, Camera, Crohn’s you’ll learn about Elena’s inspiring patient advocacy prior to the Russian invasion, how she co-founded an IBD organization to support the patient community, and how she’s working day and night right now to help the approximate 11,000 Ukrainians who live with IBD and are struggling to manage a disease while living through a war.
Did you know that at least one third of patients with Crohn’s disease experience a fistula during their patient journey? For those who don’t know, this complication happens when an abnormal passage develops between the bowel and nearby organs, such as the bladder, vagina, rectum, or skin. Fistulizing disease is complicated and unfortunately remains somewhat of a taboo topic of discussion.
This week on Lights, Camera, Crohn’s we hear from 36-year-old Lisa Mason who transparently shares her experience living with multiple abscesses and fistulas through the years. Diagnosed with ulcerative colitis at only 5 years old, and later diagnosed with Crohn’s disease, she has more than three decades of experience facing IBD head on. Lisa is passionate about showing others this topic is not off limits and something that needs to be discussed more often. My hope is this article will serve as a resource to educate, comfort, and inspire.
Dealing with IBD as a pediatric patient
“By the time I was 10, my only option was to have surgery to remove my entire large intestine. Having my colon removed entailed three surgeries, four hospital stays, a temporary ileostomy, doing school from the hospital, and re-learning how to use the bathroom after the ileostomy was reversed. I thought my disease was gone, but it turns out having your colon removed is NOT a cure.”
For nearly 20 years Lisa felt she functioned as a healthy person who went to the bathroom 10-15 times a day. She had pain and abdominal discomfort off and on and was used to getting up to use the bathroom three times during the night. She attributed all this to the fact she didn’t have a colon. Then, in 2013, her symptoms took a turn for the worse.
“I noticed a “bump” near my vagina. Soon there was a second bump. I started with my primary care doctor who diagnosed it as a Bartholin cyst. I went to an OBGYN, who said they couldn’t do anything. After a second OBGYN opinion, I was prescribed antibiotics, which didn’t do anything.”
Lisa met with eight doctors to try and find someone to help her. Lisa saw a GI doctor who ordered an MRI but couldn’t see a direct tunnel to her GI tract and told her the issue was not IBD-related. For almost four years she had pus and blood constantly draining from the new “holes” by her vagina and no matter how hard she tried, she couldn’t find a medical professional to diagnose her correctly.
“Between 2013 and 2016, I had these abscesses/fistulas with no diagnosis. I was very fortunate that the abscesses made their way to the surface of my skin.”
“In sickness and in health”
Lisa got married in August 2016 and the week after her wedding, her fistula “blew up” to a huge abscess.
“Finally, a new OBGYN doctor suggested I see a surgeon who specializes in OBGYN oncology. I had three abscesses removed through surgery. Within one week of the surgery, the abscesses came back. The surgeon said, “this has to be IBD-related.”
So, Lisa went to a new colorectal surgeon. Between 2016 and 2018, she continued to have abscesses and drainage and would take antibiotics as needed.
“Luckily, they mostly drained on their own. When they couldn’t drain, I would be at home in excruciating pain for a few days until they made their way to the surface of my skin. During this time, both my GI doctor and Colon and Rectal Specialist (CRS) thought “things aren’t bad enough” to start biologics. Surgery wasn’t really an option since the fistulas were so close to my vagina. And since they continued to drain, the risk of infection was lower.”
The battle to get started on a biologic
In late 2018, Lisa’s GI doctor began the steps to get her started on Remicade. After doing all the medical testing for the insurance company, her GI decided her symptoms weren’t significant enough to start biologics. A year later, the fistula grew to an abscess the size of a large marble, again.
“For about four days, I couldn’t move without being in a lot of pain. The GI doctor and insurance finally agreed it was time to start Remicade.”
In August 2020, Lisa developed an entirely new fistula (this time the fistula was on her butt cheek). After several rounds of Flagyl and Cipro, the infection wouldn’t subside. All the antibiotics caused a C. diff infection, creating even more challenging symptoms.
“Finally, when the fistula moved closer to the skin’s surface, my CRS opened the fistula during an office visit so it would drain. I am lucky that I avoided surgery to install a seton.”
When antibiotics don’t get the job done, the next step is often seton surgery. A seton is a procedure that involves a thin rubber surgical-grade drain that goes through the fistula tract so that the cord creates a loop that joins up outside the fistula. The hope is to prevent the formation of an abscess.
At this point the game plan was to start Humira, which failed her as well.
Onto the next…biologic
Lisa then started Stelara in October 2021 and so far, it is doing the trick.
“My latest fistula has never been better! It still gets a little inflamed, and I still wear gauze every day, but it has come a long way! My other fistulas are not active. I still have one fistula that is a direct open tunnel that stool leaks out of. That fistula will always be there, but it is not irritated or inflamed. I am still working with my doctor on symptom remission. I am currently on Budesonide to help with my symptoms, and that’s working. I hope to wean off Budesonide in the next month or so.”
As Lisa comes to grips with these struggles, she says past medical trauma haunts her. Every doctor’s appointment and every procedure takes her to an unhappy place. She brings her husband or her mom to every appointment and seeks help from a therapist, but still has a tough time coping.
As a scientist, Lisa has used her career expertise to improve her communication with her care team. She has a system for tracking her symptoms, sharing the trends, and writing down her questions.
“Advocating for yourself to your doctors takes practice. Over the years, I’ve learned to track all my symptoms from number of bowel movements, diet, menstrual cycle, stress levels, etc. I created a system that works for me. Before I go to the doctor, I write down a timeline showing trends in my symptoms. I write down all the details to show the big picture. I think this has helped me communicate more effectively with my doctors and has helped create a treatment plan that works for me.
For ideas on how to communicate with your doctor to better advocate for yourself, the Crohn’s and Colitis Foundation has a great resource page on “Partnering with Your Doctor.”
Worries and wants for the future
Despite having IBD for as long as she can remember, as she tries different biologics and forges ahead Lisa says she’s “re-learning” what it means to have a chronic illness.
“The hardest part is knowing that it’s possible I may not get to be a mom. I may not be able to have a baby because of possible scar tissues blocking fallopian tubes, having active Crohn’s, higher risks of miscarrying, a low AMH score (a fertility test that measures a woman’s ovarian reserve), past medical trauma, and my age. And if I can have a baby, I don’t know if I should. My body has been through so much already physically and mentally. Should I have a baby if I am going to be sick off and on my entire life? The thought of passing this disease on to my child is heart wrenching.”
While IBD has put a halt on Lisa’s family plans it hasn’t stopped her from completing seven half marathons and raising more than $30,000 for the Crohn’s and Colitis Foundation through Team Challenge!
“Besides meeting other people with similar issues, I learned to talk about this disease openly. For most of my life, I would only talk about IBD on a “need-to-know” basis. I am forever grateful for Team Challenge, but in all my experiences with the IBD community, fistulas are commonly experienced by patients, but aren’t talked about enough.”
For anyone struggling with fistulas or IBD, Lisa recommends connecting with others who may going through the same thing.
“With social media, we have more opportunities than ever before to connect with people with similar struggles. I also recommend connecting with IBD non-profits. For me, The Crohn’s and Colitis Foundation (CCF) has been an extremely valuable resource. Between Team Challenge, Take Steps, support groups, and educational seminars and resources, there is something for all patients and caregivers. Currently, I am serving on the Patient Advisory Taskforce for CCF, and it gives me hope for future treatments and a cure someday.”
When you are struggling with your IBD, be sure to rely on your support system, like your family, and know that things will get better. Look for the little things that bring you joy even when you are feeling sick. My go-to list includes sitting outside, spending time with my family and my pets, and writing down a gratitude list.
Despite the unexpected setbacks and flares through the years, Lisa is grateful for the full life she has been able to live. She has an amazing husband, a supportive family, a career she loves, and has had opportunities to camp, hike, and travel abroad multiple times. She’s even been to Africa on multiple occasions. Ironically, her husband had to have half of his colon removed from Hodgkin’s Lymphoma (he’s healthy now!), so between the two of them, they don’t have a full large intestine. Lisa says they take ‘No Colon, Still Rollin’ very seriously!
Lisa advises people to lean on their support system and know that things will get better. When she’s feeling unwell, she tries to do activities that bring her joy such as sitting outside, spending time with her family and pets, and writing a gratitude list.
Connect with Lisa
Lisa is part of a private Facebook group “Abscess/Fistula Support for Women” which she finds to be extremely helpful.
When you think about IBD and motherhood, you may instantly imagine a woman who has dealt with her disease for years before getting pregnant. But that’s not always the case. This week on Light’s, Camera, Crohn’s we hear from IBD mom, Angela Knott. She was diagnosed with ulcerative colitis when she was 17 weeks pregnant with her second child in December 2020. While a circumstance like this is rare, it is possible and complicated.
Between navigating the pandemic and a chronic illness, this diagnosis rocked her world. Angela was living in Australia (away from all family and friends) because her husband is a U.S. Navy pilot. They were on orders for a pilot exchange program in Adelaide, South Australia. Angela and her family now live in Texas.
She reflects on her journey as a woman and mother with ulcerative colitis and how it felt to receive a chronic illness diagnosis while trying to bring a baby safely into this world. Prior to being diagnosed with IBD, Angela was in perfect health. She never had a cavity or even broke a bone. She grew up being extremely active and is in excellent shape. Her first pregnancy in 2018 was flawless and uneventful. She carried her daughter to term and had no issues. But everything started to change when she was 15 weeks pregnant with her son.
“During this time, I experienced severe fatigue, anemia, stomach pain, stomach cramps, and weight loss (I lost 15 pounds over two weeks). After a few days of symptoms, I went to my doctor, and I told him all about my symptoms and how I was concerned something might be off with my pregnancy. He told me I was lactose intolerant and that I needed to limit my dairy intake. I did this for three days and then I went back to the doctor because my symptoms were getting worse.”
Angela was then tested for salmonella poisoning and two days later, the test result was negative. By this time, she had already lost 10 pounds and she was becoming scared that something was wrong with her baby. She got a second opinion and was told she likely had irritable bowel syndrome (IBS). That doctor wrote a referral for a gastroenterologist.
“That same evening, I ended up in the hospital due to my symptoms worsening and I was scared my baby’s health was declining since I was so ill. I was told to immediately go to the Women and Children’s Hospital to have the baby monitored (in Australia, this is a hospital for pregnant women, children, teens, and babies). I was more concerned about my baby’s health rather than my own which, is why I went to a hospital that assisted pregnant women.”
While at the hospital, Angela’s baby was monitored and doing well. She was given IV fluids to help with dehydration and she started to feel better. She went home and rested, again being told she likely had IBS.
“Shortly after getting home, I started vomiting and this continued for the next two hours. After speaking with my husband, we decided I needed to go to the ER because something was seriously wrong, and I needed treatment.”
Seeking emergency care during Covid
Due to Covid restrictions in December 2020, Angela’s husband had to drop her off at the emergency room and could not go in, only adding to an already stressful and worrisome situation.
“After reviewing my blood work and hearing about my symptoms, a gastroenterologist at the hospital stated I may have colon cancer, ulcerative colitis, or Crohn’s disease. I knew what IBS was, but I had never heard of UC or Crohn’s before. On top of being told I may have an autoimmune disease or cancer, he told me I needed to have an endoscopy to check for potential inflammation in my colon and that this procedure could result in me miscarrying since I was going to be put under. I had never been so scared in my life.”
Angela underwent the endoscopy in the morning and sure enough, she was diagnosed with ulcerative colitis. She was close to having a toxic mega colon.
“It was a blessing that I went to the ER when I did because if I had waited a day longer, my colon would have become toxic, and my organs would have potentially shut down thus impacting my baby’s life. Later that afternoon, I met with another gastroenterologist, and he gave a thorough explanation of UC and my treatment options. He explained to me I would need Remicade infusions every 6 weeks throughout my pregnancy until I was 36 weeks pregnant. Within the next hour, I received the Remicade infusion.”
She stayed in the hospital for one week and was released on December 23, 2020. Angela received another infusion on Christmas Eve and stayed on a special diet for the next week. Within two weeks, her symptoms had drastically decreased, and miraculously remission seemed to be on the horizon.
“When I started the biologic, I was extremely nervous about how it would affect my baby’s health as well as mine. I was told it was safe for pregnancy, but it was scary knowing that my baby would be exposed to an immunosuppressant drug. I was very cautious during my first pregnancy as well as the first few months of Henry’s pregnancy, so it went against everything I had prepared for and wanted. On the flip side, I also was concerned about how malnourished I was from being so sick. I didn’t want to cause any more issues to my body or cause something to go wrong with my pregnancy.”
Initiating Remicade while pregnant
When Angela was 28 weeks pregnant remission became a distant thought, as her body was rejecting the infusion and she started flaring, again. She had a flexible sigmoidoscopy which showed she had severe amounts of inflammation in my colon.
“At 30 weeks pregnant, my bloodwork showed that my colon was nearing toxic levels and that I needed to have my baby early to ensure my organs didn’t shut down. A few days later, I was admitted to the hospital and my baby, and I were monitored for a week. I was given fluids and steroids to assist with the inflammation (a steroid shot was also given to me for my baby’s lungs). At this point, I had to switch OBs and delivery hospitals since I was admitted to a hospital that dealt with high-risk patients. This was the best decision possible since I was given an amazing team of doctors and specialists.”
Angela and her son were monitored closely. Four medical teams were on board to do all they could to ensure a healthy delivery—NICU, colorectal team, OB, and gastroenterology.
Her miracle baby, Henry, arrived 8 weeks early via an elective c-section April 1, 2021. Angela had a classical c-section (vertical incision on her abdomen) because after she delivered the colorectal team had to check her colon for inflammation.
Luckily, the inflammation was “only” considered mild to moderate. Angela’s bloodwork the day before had showed her colon was near toxic levels. She had been prepped for a possible ostomy. Fortunately, she still has her colon.
How Henry was after birth
Angela’s son was born extremely healthy and came out breathing on his own. He spent the first six weeks in the NICU to assist with growing and feeding and remained in the hospital for an additional week.
“I received another Remicade infusion a few hours after delivering as well as an additional infusion a few days later. Within 24 hours of delivering Henry, I felt like my old self again (pre-UC diagnosis) and I was almost immediately in remission. It was determined my UC was most likely dormant for years and my pregnancy triggered it. Additionally, my initial pregnancy flare started shortly after my second trimester and the Remicade failed when I started my third trimester. My medical team thinks my pregnancy hormones caused a lot of my issues.”
Postpartum as a newly diagnosed IBD mom
In the months following Henry’s birth, Angela was relieved to be feeling more like herself. The fear of a looming flare worried her as a stay-at-home mom. She ended up losing 30 pounds during her pregnancy and was recovering from a very painful c-section.
“Fortunately, I did receive counselling services throughout my pregnancy (after I was diagnosed) and postpartum which helped.”
Due to being on so many different medications and having a stressful birth, Angela had a low milk supply and therefore breastfed, pumped, and supplemented with formula the first few months.”
“I was grateful my baby and I are alive; every day I rejoice thinking of how far we have come, and I am extremely grateful he is healthy and happy. I now have a deep understanding of how short life is and I no longer stress about life’s minor hiccups. I constantly count my blessings and greatly appreciate my health which I took advantage of before my chronic condition. I am a mentally strong person now and I have amazing coping skills because of my diagnosis.”
Angela still receives Remicade infusions every 6 weeks and is extra mindful of her health. She works out a few times a week, eats healthy, watches her stress levels, and makes sleep and rest a priority.
“I am doing everything I can to stay in remission and have been flare-free for almost a year. Every three months, I see my gastroenterologist and have bloodwork taken to ensure my health is on track. Prior to staying home with my kids, I was a teacher and I plan to return to the classroom soon. I am blessed to know I have biologic options to help me stay in remission so I can be successful in the classroom.”
Despite only being diagnosed with ulcerative for 15 months, some days Angela feels like it has been years.
Here’s Angela’s advice for other women dealing with an IBD diagnosis prior to getting pregnant, while pregnant, or after delivering:
Seek out mental health assistance during challenging times and find a support group either locally or through social media to connect with others who live with IBD and understand your reality. Angela’s favorite Facebook group is: Ulcerative Colitis Support Group, which has 36,000 members.
Ask all the questions. Don’t hesitate to reach out to your care team whenever you’re unsure about something or want clarity. Do all you can do educate yourself on your condition.
Get a second opinion. Don’t feel bad about seeking care from multiple specialists to ensure you are making the best decisions for yourself.
If you’re a faithful person, lean heavily on prayer and trust that God will watch over you through the highs and the lows of your illness.
Communicate as best you can with family and friends. Angela is grateful for the love and support of her husband.
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.”
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.
Follow local guidelines for masking
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.
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.”
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.
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.
When Marquis Ellison met and began dating his wife, Tasheia, in 1999, they were juniors in high school. The couple tied the knot 13 years ago. One year into marriage, Marquis started to experience weight loss, fatigue, anemia, abdominal pain, stomach cramps, and loss of appetite. He dropped to 100 pounds! They were on an anniversary trip to Los Angeles when his symptoms started to become unbearable. After the trip, Marquis was diagnosed with Crohn’s disease. He was 26 years old.
“Upon being diagnosed, I felt a sigh of relief in knowing what the condition was and starting on the right medications. I owned it and decided to beat it by how I live, educate and inspire others.”
Tasheia has been by Marquis’ side every step of the way. Every colonoscopy. Every flare. Every doctor appointment. He thanks God every day for a wife who truly exemplifies what it means to be a partner in sickness and in health.
Focusing on faith and family
Marquis keeps busy as a husband, father, and personal trainer. He gives all the credit to God.
“Faith is the cornerstone of who I am and why I have the outlook I have with Crohn’s. If God wants to completely heal me, I know He can. But if not, I know He’ll give me the strength to endure and I’m at ease with that. There’s always a greater good for what we go through and if my journey living with Crohn’s disease can inspire and encourage others, all praise to the Most High!”
Since becoming a father three years ago, Marquis says his faith and his son are his “why” …why he’s so enthusiastic about doing all he can to take care of his body and controlling what he can.
“Being a dad is the greatest gift and blessing. Knowing this little person is your responsibility. I want my son to see that while I have IBD, I don’t let it stop me and set the example he can follow when faced with life’s unpredictability. My son witnessed me running the marathon cheering me on at mile 22 and the finish line. When we got back home, he wanted to wear my medal. I asked him if he wanted to run a marathon in which he replied, ‘yes’. That was a great feeling knowing I’ve inspired my son despite my condition.”
Shout out to IBD men
When you hear about people’s IBD journeys, it’s more common to hear from women, even though Crohn’s disease and ulcerative colitis impact genders equally. Marquis wants men to recognize they are not alone and to speak up and tell their stories.
“Your story matters. Your voice matters. Speaking about your health and opening up doesn’t make you any less of a man, it only enhances it.”
As a Black man, the lack of representation, and health disparities, span far and wide. Marquis wants you to know you are not alone in your struggles.
“Our voices matter. The more we advocate, the more we’ll show that Black and Brown communities are affected with IBD and should be represented more often. I’m proud to be an ambassador with Color of Crohn’s and Chronic Illness (COCCI), where we’re working to bridge the gap and lack of representation.”
Running for a reason
Marquis recently completed the New York City Marathon in November. He says it was the toughest and most victorious accomplishment he’s ever experienced. His race shirt read, “Mr. Crohn’s Fighter” to represent all IBD warriors and show that you can still do remarkable things, despite your disease. Life with IBD is a marathon, not a sprint. That mentality prepared Marquis for the race.
“Living with IBD is unpredictable. The unpredictability of a flare up or foods not agreeing with you always feels like something is looming. When running, you never know how the course or weather will be. You can train hills or in the rain, but you may still face adversity you didn’t prepare for. With running and with Crohn’s disease, it’s all about mindset and the ability to adapt and repeatedly overcome. Focus on your current reality and not on what hasn’t happened or what could happen.”
He’s currently training to run the New York City Half March 20th, 2022.
Focusing on what you can control
Marquis manages his IBD through fitness, nutrition, mindset, and by taking Cimzia, a monthly self-injection. He’s all about controlling what you can and not succumbing to your circumstances.
“Life is 20% of what happens to you and 80% of how you respond to it. I choose to focus on the 80% by controlling what I can. I always say, I have Crohn’s disease, it doesn’t have me. IBD may try and take me down, but it will never knock me out.”