Forecasting the weather and life with IBD: What this meteorologist has to say

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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.”

Connect with Candace

Instagram: @CandaceM_wx

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An update from Ukraine: Aid for the IBD community, heartbreak, and hope

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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

Now and Then: Advocating for Ukranian IBD patients through the war

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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.

During this pre-war protest, Artem’s sign read “No drugs = No future”

“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.

Elena with her daughter early on in her patient journey

“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.”

One of the first places Elena and her team turned to for assistance was the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA). She says they have promised humanitarian aid from Europe.

“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.

Follow Full Life on Facebook

Full Life’s Patient Group

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.

A letter to my 5-year-old son, from your mom with Crohn’s disease

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The week before my oldest son, Reid, was born I penned him a letter entitled, “A letter to my unborn son, from your mom with Crohn’s disease.” When I wrote that article, I was 38 weeks pregnant. As a first-time mom, living with Crohn’s disease, I had a mix of excitement, anxiety, and fear about taking the plunge into parenting. Tomorrow (March 29th) Reid turns five. Now as I reflect on my experience of living as an IBD mom for half a decade, I want to share what I’ve learned along the way with you and write him another letter to mark this milestone.

Dear Reid,

Where do I begin? Five years ago, you changed my life in the most beautiful, exciting, challenging, and everchanging way possible. You made me a mom. After more than 11 years of fighting Crohn’s disease and constantly feeling at war with my body, I was able to nurture you, help you grow full-term with a flawless pregnancy, and bring you safely into this world. I feel like I blinked, but I also feel like I’ve known you my whole life.

We’ve been through a lot together, little buddy. As a stay-at-home mom I’ve been by your side through everything. I’ve witnessed every moment of you growing up and I feel eternally grateful for that opportunity. Before you were born, I used to pray that I wouldn’t be hospitalized with a flare up until you could walk. I imagined you as a toddler walking into my hospital room. I feared what it would be like to spend countless days away from you, Facetiming with a smile through the tears or trying to recover from surgery with a little one depending on me at home.

But those fears never became realized. We’ve made it five years, flare up free, baby boy. That’s not to say I haven’t had painful days, procedures, and worries along the way. But you’ve been my greatest motivation since you came into this world. You’ve patiently sat day after day on the bathroom floor when mommy’s tummy wasn’t feeling well. You’ve comforted me on the couch when I don’t have the energy to go outside. You’ve cheered me on as I drank colonoscopy prep each year. You’ve handed me candy and told me it was medicine to make me feel better. You’ve attended countless doctor appointments and lab draws. You’ve snuggled me when you know I’m unwell. You’ve sat next to me with a toy pretending to do an injection alongside me on Monday nights, staring at my face to see if I was hurting. You’ve taken your own shots at the pediatrician like a champ because you’re so desensitized.

You constantly see me through a lens I’ve never been seen through before. I catch you watching my facial expressions. I know when you’re worried about me. I melt when you randomly ask me how my tummy is feeling and if I’m feeling happy, but also feel a sense of sadness that you even need to have that thought cross your mind. You are an empath with a heart of gold. While I wish you didn’t need to witness and experience these difficult moments and I try my best to shield you from my struggles, I know in my heart, and I’ve witnessed firsthand how my disease has shaped and continues to shape our family in positive ways.

As you gear up for kindergarten this fall, I will miss our days…even the long ones! You’ve been a constant in my life since the moment I held you for the first time. Your personality as a baby seemed quiet and shy, boy did you have me and everyone else fooled! You’re so silly, so smart, so thoughtful, so outgoing. You’ve given me a run for my money more times than I can count, but I love that you are so steadfast in knowing what you want and sharing that openly with me.

As an IBD mom I find myself looking at you, and at your sister and brother, on the daily wondering and worrying deep down if one day you’ll get my disease. Every night we say our same prayer, the same prayer I’ve said to you all your life, hugging and rocking back and forth.

“Dear God, keep my baby healthy, safe, and strong. Guide him and protect him. Let him continue to be a light for everyone he meets. I love you forever and ever and ever, I love you forever and ever. I love you forever and ever and ever, I love you forever and ever.”

When I pray for *healthy*, I mean no IBD…but you don’t know that yet. You are a picture of health in every sense of the word. Someday when you’re older you’ll know what I’ve been up against my entire adult life, but my hope is that it will inspire and empower you to be strong through the unpredictable peaks and valleys life will throw your way.

I still haven’t explained fully to you that I have Crohn’s disease. I’m not sure it’s necessary to even say “disease” to you. As you grow up, I’ll tell you more. But for now, I don’t want you to worry or wonder. I hope we get another five years hospital visit-free.

Thank you for showing me all that’s possible and for making me a mom. Five years of loving you, guiding you, and watching you thrive has been magical. When I was pregnant with you there was a Florida Georgia Line song called “H.O.L.Y.” that always made me cry thinking of you—because of the line, “you’re the healing hands where it used to hurt.” The other day I was driving home from the grocery store and that song came on the radio. I hadn’t heard it in years. Instant tears. Instant gratitude.

I love you, Reid Robert. I wish I could bottle up your laughter and littleness. I find myself really staring at you lately in awe that we’re at this point already. You are everything I ever dreamed of and more than I ever hoped for. Thank you for being the sweetest motivation and distraction and for being wise beyond your years. I am so so proud of you. I appreciate you reminding me without knowing it that I am so much more than my disease.

“Mama”

Struggling with the physical and emotional burden of fistulas

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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.

Instagram: @birdbrain82

Facebook: https://www.facebook.com/lisa.mason.1420

Twitter: @lisamason127

IBD Motherhood Unplugged: I was diagnosed with ulcerative colitis while pregnant

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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.

Connect with Angela on Instagram: @angiemknott

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

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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.

Focusing on what you can control: How this IBD Dad takes on Crohn’s

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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.”

Connect with Marquis:

Instagram: @mr_crohnsfighter09

IBD Motherhood Unplugged: Being an Ostomate through pregnancy and beyond

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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