Tag: IBD and motherhood

Turning Over a New Leaf: The Lifestyle Changes This Single IBD Mom Made to Manage her Crohn’s

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**Disclaimer: This article is in no way meant to offer medical advice or guidance. Medication to treat and manage IBD is NOT a failure. Please understand this is one person’s experience and journey. Prior to going off medication, consult with your gastroenterologist and care team.**

She was diagnosed with Crohn’s disease in 1991 at 19 years old. As a veteran patient and IBD mom of two teenagers, Kelli Young says the COVID-19 pandemic, along with turning 50, inspired her to dig deeper into her health journey and look beyond the “cookie cutter” approach to treating IBD. After multiple surgeries and decades of biologics and other medications, she was determined to try a different approach.

Much like many of us in the IBD community, we often choose to hide our disease from others. Kelli says 15 years of that strategy often left her feeling misunderstood. Once she started sharing and opening herself up to support, her world changed for the better. Anytime someone is sympathetic and says, “you poor thing,” Kelli reminds them that Crohn’s disease molded her in the person she is today and that everyone has problems, hers just happens to be IBD.

“Having lived more than half my life as an IBD patient, I knew I didn’t want to live the second half of my life the way I did the first half.”

Taking a closer look into food sensitivities

It’s no surprise the importance of diet has become a larger part of treating IBD in recent years, but there’s still a lot of gray area.

“Diet is often the one thing that the medical profession overlooks or provides the same generic diet to everyone, assuming everyone is the same. Diet is the #1 factor that affects your health in every way imaginable. Your energy, sleep, weight, sex drive, bowel movements, heart rate, and mood, just to name a few.”

Prior to changing her diet, Kelli connected with her longtime friend of more than 20 years, Dr. Sean Branham, a chiropractor who specializes in functional medicine. Dr. Branham ordered the Oxford Food Sensitivity Test. The test measures inflammation in the body on a cellular level. Food sensitivities are unique to each person, so it’s impossible to determine what your sensitivities are without getting tested. Reactions can also be delayed or be dose dependent.

Kelli says, “The Oxford Food Sensitivity Test looks at all types of white blood cells (Neutrophils, Lymphocytes, Monocytes and Eosinophils) and measures release of all pro-inflammatory chemicals like Cytokines, Histamines, Prostaglandins and Leukotrienes. Certain groups of foods are pro-inflammatory to humans because we may not contain all the enzymes to thoroughly break them down (like dairy). Other foods are pro-inflammatory because of their processing, like many different forms of sugar. Some are inflammatory due to genetic modification like gluten. Some healthy foods can create inflammation once digestive damage has been done and these partially digested foods leak across the digestive barrier and trigger an immune response.”

Customizing diet with Food Sensitivity results

Kelli’s tests results showed mushrooms, cashews, trout, mangos, green peas, coconut, among other foods, triggered an immune reaction. Once Kelli had her Food Sensitivity results in hand, her and Dr. Branham started to customize her diet.

“We first started by removing the bigger classes of pro-inflammatory foods like; dairy, sugar, gluten and soy and then assessed specific foods that were causing a problem for me individually.”

Along with removing these food groups from her diet, Kelli did a whole-body digestive cleanse that involved a specific diet with supplements, a shake, and a cream to rid the body the body of toxins, decrease inflammation, and cleanse the liver and digestive tract.

“Testing revealed that there were more than just digestive issues going on. I also had a blood sugar regulation problem, Estrogen dominance, nutrient deficiencies, a need for: digestive enzymes, immune support, and microbiome support. Once I completed the cleanse, we customized a supplement regimen specific to me based on my test results. We started with what Dr. Branham considered the most important things first and then as we corrected those issues, we moved on and tackled the next issue and so on.”

Celebrating a “new way of life”

As a single mom of a 19-year-old and a 16-year-old who have supported her through her IBD journey every step of the way, Kelli calls these lifestyle changes her “new way of life”.

“When my son was between the ages of 8-12 years old, he was showing IBD symptoms, but he didn’t have IBD, he was experiencing empathic pains. He watched me, a single mother, battle with the daily struggles. I tried to hide it, but he saw right through me. Today he is 16, growing, thriving, and enjoying his healthy mother. My daughter, 19, the age at which I was diagnosed, is thriving as well. I am now able to truly be present in both of their lives.”

When Kelli and her husband divorced, her children were only 8 and 5 years old. As an IBD mom it made an already challenging time that much more complicated. She never dreamed she’d be at this place in her life health-wise.

“Back then I wondered how I was going to give myself my own shots, how I was going to care for two small children 50% of the time when I was always sick. Being a single mother with IBD forced me to take a good hard look at my life, not only for me, but for the sake of my children. My motto used to be “expect the unexpected” and “no expectations.” Today, I no longer worry about the future bad days or wonder if I’m going to be around to be a grandmother someday. Yes, it’s difficult at times to follow such a structured lifestyle, but it’s even more difficult living a life being chronically ill.”

Going off all meds

Kelli has been off all IBD medication since May 2021. She says her GI of 30 years is reluctantly supporting her decision to go this route on her patient journey. Kelli had a colonoscopy in June 2022, and after the scope in recovery he said, “Well Kelli, your new way of life is working. I’ve never seen your scope results look this good.”

While this lifestyle may seem “extreme” to some or difficult to follow, Kelli says she was sick and tired of being sick and tired.

“The definition of “remission” varies depending on who you ask. I am celebrating three years of a “disease free” diagnosis. The Crohn’s will ALWAYS be very much part of my life, but now, the only time I have a “bad day” is when I cheat on my new way of life, eating something I shouldn’t be eating, not getting enough sleep, not exercising, and not managing my stress.”   

14 years of injections: What I’ve learned as a mom with Crohn’s

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This blog article is sponsored by Portal Instruments. All opinions and experiences shared are my own.

I’ll always remember how I felt the moment I was told I needed to go on a biologic drug to try and manage and control my Crohn’s disease. It was Fourth of July weekend 2008. My gastroenterologist walked into my hospital room and told me it was time to “break out the big guns,” meaning starting to get medication through an infusion or through a self-injection. I was a morning news anchor at the time in Wisconsin, three years into my patient journey. I knew without a doubt, for privacy reasons, and keeping my chronic health issue under the radar, that doing an injection in the comfort of my apartment was the best choice. As I watched the fireworks reflect off the hospital room window with my mom, tears flowed down my face. I didn’t know how on God’s green Earth I was ever going to be able to give myself an injection for the rest of my life.

I was never a huge fan of needles prior to my diagnosis. Once you have Inflammatory Bowel Disease, needles unfortunately are all part of it. While we may get desensitized, patients would give anything to be able to treat their disease without needles. When I started on my biologic, my mom and I went to my gastroenterologist office and a nurse told me I needed to do four, painful injections in my thighs because at the time I didn’t have enough fat on my stomach. I was shaking like a leaf. I had no idea what to expect, I was about to inflict pain on myself, the injector felt so foreign in my sweaty palms, and I was scared about not only how much it was going to hurt, but also the long-term side effects the medication could cause to my body. 

I did the first injection and it felt like liquid fire burning through my skin. I couldn’t believe I had to sit there and do three more, back…to back…to back. The experience was traumatizing. When I finally did all four, my mom and I walked into the hallway and I embraced her, crying because of my reality, and knowing that in two weeks I would need to inject two more needles into my thighs for the final loading dose. Since July 2008, I’ve done a self-injection every other Monday and for a short time weekly, while I was flaring. That’s more than 2,600 shots. 

Dreading “shot day”

The first few years I would absolutely dread my “shot day” and deal with the looming dread each week. Early on I would get emotional during the process and feel bad for myself. I was only 25 years old. It made me feel like I was a sickly person. My peers couldn’t relate. It was isolating and overwhelming. Every time I open my fridge, the box of injections is staring back at me as a constant reminder of what’s to come. 

Doing my injections as an IBD mom

Fast forward to present day, I’m now a 38-year-old mom of three. Luckily, the formula for the medication was changed in 2018, making the drug virtually “pain-free”, but there are times I still feel the needle. Even though I have my medication process down to a science, I still wish I didn’t have to do it and I usually wait until Monday nights to do it. The timing is moreso out of habit, because when I was a morning news anchor there was no way I was going to deal with an injection at 2 a.m. I started a tradition of doing my injection while watching the Bachelor/Bachelorette, and that’s carried over now that I have three young children, often waiting until after their bedtimes. Each time after I’m done with my shot, I text my mom to let her know how it went. She’s a nurse and has been my greatest support with my IBD since the day I was diagnosed.

Sometimes my 5-year-old and 3-year-old watch me do my injection and each time they are intrigued. I’m sure my 11-month-old will be the same once he starts to gain an understanding of what I’m doing. It makes me sad that they often witness me doing my injection, but they are also my greatest motivation to be strong and smile through it. Watching me doing injections has made my kids incredibly brave at the pediatrician when it’s time for them to get their immunizations. Because I have little ones, I have to be mindful of disposing of my medication properly and keeping the Sharps disposal container out of harm’s way. We keep Sharps Containers up high in a cubby hole in our laundry room and I dispose of the injector pen immediately. 

As an IBD mom, my greatest fear is passing along my Crohn’s to my children. While the risk is low, it’s there. I hope and pray my children won’t ever need to receive a biologic medication whether it’s through self-injection or infusion. For me, there’s no end in sight, I’m expected to be on my medication (if it remains therapeutic) for the rest of my life. Thinking of my babies having to deal with needles and being forced to inflict pain on them would be difficult for me and only add to the guilt.

The future holds so much promise when it comes to drug delivery without a needle. My hope is that in the years to come, other people won’t have to succumb to the same anxiety, pain, and worry I’ve had to deal with for more than a decade.

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

IBD Motherhood Unplugged: Fully Vaccinated and Pregnant with COVID

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It’s safe to say IBD mom, Amanda Pennewell, is grateful she’s days away from welcoming baby number four into the world. Despite being fully vaccinated, she came down with COVID when she was 34 weeks pregnant. Amanda was diagnosed with Crohn’s disease 20 years ago when she was only 8 years old.

Amanda is no stranger to being on a biologic during pregnancy. She was on Humira with her twins and over the course of the last two years she was on Stelara with her second pregnancy and her current one. It’s one thing to be an immunocompromised pregnant woman, I can attest from personal experience, it’s extremely worrisome when living through a pandemic and worrying about your IBD and the possibility of COVID turning your life and that of your unborn child upside down.

Coming Down with COVID

One second Amanda’s oldest daughter, Brooklyn, was at a friend’s birthday party being her energetic, sweet, self and when they arrived home, she laid down on the couch and said she was freezing. Brooklyn had a low-grade fever. A few days prior her 17-month-old, Caroline, also had a fever.

“I didn’t think anything of it until a friend from school called to tell me her son tested positive for COVID after being seen for a low-grade fever that lasted six hours or so. My husband went to get some at home rapid tests from Walgreens. It was late, and I was supposed to have him help me with my Stelara injection that night. I figured I needed to wait until I could contact my GI doctor to inject if it was positive. It was.”

Amanda was in a state of shock. Her and her husband had both been fully vaccinated for months. At the same time, given the nature of mom life, once her daughter tested positive, she felt it was inevitable she would, too.

Navigating a biologic, pregnancy, and COVID

When Amanda’s GI heard she had COVID, she recommended she delay her Stelara injection for the time being to see how she did during the quarantine period. Amanda’s initial symptoms were a sore throat and a headache.

“I kept in touch daily with my GI doctor and her nurse via phone and email. They were very worried about me—especially because I was about 34 weeks pregnant. I ended up waiting two weeks after my daughter and I tested positive before I did my Stelara injection. I had been symptom-free for a week at that point, and they knew I would be okay to inject then.”

Along with herself and her daughter, Amanda’s husband and dad also tested positive. But Amanda says out of everyone in their inner circle, she felt the worst.

“My symptom list continued to grow each day. The first day the sore throat and headache were my only symptoms. I then developed a cough and muscle soreness and pain. I took about four-six baths/showers each day and took Tylenol to remain functional. I had extreme fatigue and ordered a pulse oximeter to monitor my oxygen level. I had a low-grade fever. I also lost my smell and started to lose my taste. My OB doctor had called me and said I was eligible for a monoclonal antibody infusion, and they would recommend it for me since I also have Crohn’s disease.”

Amanda took a few days to think it over and discussed the infusion with her GI, who recommended she receive it as well. After getting the 30-minute antibody infusion, Amanda felt worse. Her fever spiked and she was shaking. Luckily, by the evening she turned the corner and started feeling significantly better.

Advice for Fellow IBD Moms

COVID caused Amanda to miss one of her high-risk ultrasounds, but she was able to get a scan at 36 weeks. She’s grateful baby girl is looking great and measuring right on target despite all she’s been through during this pregnancy.

“My advice to fellow pregnant IBD moms would be to stay in close contact with all of your doctors, even if you think they can’t help you. I normally just try to keep my primary and my GI doctor informed when I’m sick with something, but since I had to cancel my OB appointment, they knew I was exposed and then knew, I was positive. They were the ones able to set up the infusion for me. Had I not called, I wouldn’t have known about the infusion and that it was available for me. I don’t want to think about what could’ve happened if I hadn’t had that option.”

Amanda is hopeful her daughter will come into the world with solid antibodies given that she was pregnant with her when she received her second Pfizer vaccine, plus the fact she had COVID and received the monoclonal antibody infusion.

Connect with Amanda on Instagram: @thepennegram

Participating in PIANO: Why I choose to be a part of research while pregnant and beyond

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As an IBD mom I see it as a responsibility and an opportunity to participate in research studies while I am pregnant and as my children grow. I’m currently 20 weeks pregnant (tomorrow!) with my third baby and this time around I’m enrolled in the Pregnancy in Inflammatory Bowel Disease and Neonatal Outcomes (PIANO) study. The project was conceived, lead, and executed by Dr. Uma Mahadevan, Professor of Medicine at the University of California San Francisco in 2007.

Since the project launched, more than 1,800 women have participated in the registry. Of that number, over 900 stayed on biologics throughout their pregnancies. I’m thrilled to be a part of this initiative. If my pregnancies and children can provide clarity for a future generation of IBD moms, the extra effort on my part is more than worth it. Thanks to women before me who have been on a biologic and been a part of research while pregnant, I have peace of mind knowing that staying on my Humira is best for me and for baby.

Without studies that indicate how babies in utero respond to medication exposures we would be in the dark about what is best for mom and baby not only during pregnancy, but with breastfeeding.

“There is so much misinformation about pregnancy and IBD including being told not to conceive at all or to stop medication. This is incorrect and dangerous. PIANO was started to provide reliable data for women with IBD considering pregnancy so they and their providers can make an informed choice for themselves and their babies,” said Dr. Mahadevan. “Every pregnant woman with IBD has benefited from the generosity of PIANO moms who contributed their outcomes, good or bad, to the pool of knowledge we have. Every PIANO mom who contributes benefits not herself, but future mothers with IBD. It is an invaluable and precious gift.”

What PIANO measures

There are four main areas the PIANO study looks at:

  1. Whether the level of biologic drug transferred across the placenta to the infant by the time of birth predicts the risk of infection or other adverse outcomes
  2. Whether the achievement of developmental milestones is affected by medication exposure
  3. Whether the rates of birth defects, adverse pregnancy outcomes and complications of labor and delivery are affected by IBD medications
  4. Whether second trimester drug levels can be used to adjust drug and minimize transfer across the placenta to the baby

Since I am just now reaching the halfway point of my pregnancy, I have only had to fill out questionnaires. You are required to do so during each trimester, at the end of your pregnancy, and then at 4, 9, and 12 months post-delivery. Along with that, you can provide follow up until your child is 18, once a year. During this trimester I will also provide blood work and a fecal calprotectin. On delivery day, bloodwork will be taken from me, my baby, and my umbilical cord. Depending on my son’s blood work at delivery, I may be asked for more when he’s 3 and 6 months. If at any time I am not comfortable with him getting his blood drawn, I can always opt out. The cord blood is similar to the baby blood at birth so that is adequate. I can also choose to stop the annual questionnaire at any time.

If a woman receives the COVID-19 vaccine during pregnancy, the PIANO study is also measuring the antibody levels found in the cord blood (on the day of birth) to confirm that the benefit transfers to the baby. Breastmilk will also be measured for the transfer of protective antibody against COVID.

The Findings Thus Far

In a presentation this past fall, Dr. Mahadevan shared findings from PIANO.

“We looked at pregnancy, birth and developmental outcomes in the infants at one year, based on exposure to drug, and found no increase in negative outcomes and no reduction in developmental milestones. Biologic‑exposed infants did have some statistically increased improvement in developmental milestones compared to the unexposed group. Overall, what this study suggests is that women with inflammatory bowel disease should continue their biologics and thiopurines throughout pregnancy to maintain remission, given no evidence of harm, and evidence that  disease activity can increase miscarriage.”

The study also found that disease activity can increase preterm labor and birth, all the more reason for women to stay on their medication and not try and go med-free while pregnant.

Looking to the Future

Currently, there is no end date for the study. As long as there is funding, the project will continue. Dr. Mahadevan says with all the new medications coming down the pipeline there is a need for safety data. She says, “The infrastructure of PIANO allows us to study new medications as they come to market, even before they are approved for IBD.”

To participate in the study women must have IBD and live in the United States. Interested in learning more or getting enrolled? Email PIANO@ucsf.edu or call 415-885-3734.

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

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

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

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

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

Navigating health issues brought on by my IBD

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

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

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

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

Seeing the beauty through the struggle

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

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

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

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

 

 

Motherhood and IBD: The parallels and what I’ve learned

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Let me tell you how small a bathroom feels when you’re on the toilet, your crawling baby is at your feet going after the garbage can and your toddler is pulling at the toilet paper. This has been the scene of my life, multiple times a day, over the past year. Sophia turns one tomorrow (Jan 14!). mom3I feel like we blinked and her first year passed by. That being said, having a baby and a two-year-old, while being a stay-at-home mom and freelancer, who happens to have Crohn’s disease, has its challenges.

Each day, while often exhausting, has been an incredible blessing. I remember being pregnant and wondering how motherhood in general, along with IBD would be. I remember when Reid was born in 2017 and learning to adjust to parenthood and having a family. I remember being pregnant with Sophia, wondering how I would have any capacity energy-wise to take on being home with two little ones, but I did it. Somehow you find a way to get by, to exist, to adjust to your new normal.

Much like navigating chronic illness, with motherhood, you have moments where you feel you’ve found your groove, and then suddenly something happens to prove otherwise. But, that’s the beauty of it. The hard times are temporary and then the beautiful, fill- your-heart with overwhelming joy and happy tears in your eyes moments happen when you least expect it. mom2

Parenthood isn’t all sunshine and rainbows. Some moments really suck. Some moments are incredibly frustrating and overwhelming. Some moments you wonder how you’re going to get through. I think there’s this expectation and this fake persona (thanks to social media) that makes us all think we need to do more, be more, and love every moment of parenting, when we all know that’s not the case. Raising little people isn’t for the faint of the heart, but it’s one of the greatest gifts we can be given.

Through motherhood I’ve learned the importance of health—physically, mentally, emotionally, and spiritually.

Through motherhood I’ve learned how imperative it is to rely on your support system. There’s no sense in trying to do this alone.

momof2blog2Through motherhood I’ve learned to soak everything in, because you blink, and another year or milestone goes by.

Through motherhood I’ve learned the importance of listening to my body, resting when necessary, and saying “no” to plans that don’t fill my cup.

The thing is—when you live with a chronic disease like Crohn’s, you learn all these “lessons” long before you become a parent. But, the actual meaning shifts, when you have more to think about than just yourself.

One year ago, today, I went to bed a mom of one and the very next day I woke up, had a c-section and my heart doubled in size and we became a family of four. The addition of Sophia to our family has been an incredible blessing. I don’t know how I ever lived without her. It’s amazing how families adjust to their new dynamic and change in such beautiful ways as they continue to grow.

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Photo credit: Alexandria Mooney Photography

Whether you want to be a mom someday, are currently trying to have a baby, are pregnant, or a mom of one or several kids, let’s all practice a little more grace and less judgement. The only shoes we’ve all walked in are our own. No matter how people choose to present themselves, everyone has bad days, everybody has their own set of struggles and worries, and chances are, we can all relate.

Coming of age with IBD: The 20s and the 30s and how they differ

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The new year and new decade have almost everyone reflecting on the last 10 years of their life, looking back at then and now, and anxiously excited to see what the next 10 years will bring. Framing life into decades is interesting, especially when it comes to chronic illness. I wasn’t diagnosed with Crohn’s until age 21, so I can’t speak to what it’s like to live with IBD as a child or a teen. What I can speak to is what it’s like to live with a chronic illness in your 20s and in your 30s and how your lifestyle, your expectations for yourself and for others, shifts as you age. natalie20s2

In my opinion, each decade with IBD presents its own unique set of challenges. Of course, each and everyone of us has a different looking “timeline” as our lives play out, but for the most part, certain aspects of “coming to age” happen at one time or another, depending on what’s important to you. Here’s what my 20s and 30s has looked like:

The 20s:

Said goodbye to being a child and truly became an adult.

Fulfilled education goals, navigated professional life, followed career aspirations.

Dated and found love.

Enjoyed a fun social life with friends.

Moved out at age 22 and lived on my own in Minnesota, Wisconsin, and Illinois.

Adopted my dog, Hamilton.

The 30s:

Got into a groove professionally, felt more confident in my skills and what I’m meant to do.

Moved to Missouri to follow love and got married. engagement

Got pregnant and had two babies.

Fewer social hang outs and more family time.

This may just look like a list, but when you live with IBD these life changing milestones and moments have different meaning and carry different weight. When I was diagnosed at age 21, it was before I landed my first TV job. I had just graduated college and spent years interning for free, worked four nights a week on the college TV station…for free, only to be blindsided with a disease that made me wonder if all my hard work was for nothing. At 21 I wasn’t sure if I would ever find a man willing to stick by my side through the ups and downs of chronic illness or if I was worthy of a long-term relationship. At 21, I moved eight hours away from all friends and family, three months after being diagnosed, while on 22 pills a day, to follow my dream of being a journalist. There was great responsibility in living on my own, taking my medications and being a compliant patient, while the rest of my peers’ greatest worry was what going out shirt they were going to wear to the bar that night. natalie20s

During my 20s I put more emphasis on what others thought of me and just wanted to fit in. I didn’t want my disease to hold me back in any way.

Now that I’m 36, and can look back on what it was like to live with Crohn’s throughout my 20’s and now well into my 30s, I must say…while life with this disease is never “easy”, it becomes a lot easier to live with as you get older. Here’s why.

I followed my dreams of being a journalist and worked successfully full-time for more than a decade in TV stations and PR agencies, despite my diagnosis.

I found a man who loves me for me and didn’t think twice of being my partner even though I had Crohn’s. I met Bobby one month before turning 30. Dating him, marrying him, and building a family with him has brought a great sense of comfort and stability into my life. When I flare or I’m having a rough day, I rely heavily on him to be my rock and lift my spirits.

blog2Fatigue from motherhood when you have a chronic illness can be mind-numbing and debilitating, but seeing your body create a life and then bring a baby into this world makes you feel a renewed sense of love for a body that you’ve been at odds with for years. IBD and motherhood has it’s worries and challenges, but at the end of the day, your children will be the greatest light in your life, and the most magical motivators of strength. There’s almost too much going on to worry about your own well-being, which is both a blessing and a curse!

natalieblog2Gone are the days of going out at 11 pm, now I rarely go out and when I do, I’m usually home before 10. There’s no pressure to stay out until bar close or take a shot. My friends are all grown women, many of them are moms, our priorities have shifted. Adult conversation over brunch or a glass of wine and some sushi or tapas is refreshing and rejuvenating. I openly communicate about my disease when asked and don’t shy away from the conversation like I once did.

blogarticleIf you’re reading this and you’re newly diagnosed, a teenager, a 20-something, trust me when I say that balancing life—all your obligations, your network of support, your job and what you’re meant to do with your life will find it’s way. Don’t beat yourself up by creating a timeline or a vision board that sets you up for failure. Don’t try and keep up with the Jones’. Don’t compare where you are in life to your peers. Because there is no comparison. When you have IBD you are being unfair to yourself if you try and be just like everyone else, because you’re not. And that’s ok. Use your experience as a patient to give you patience within yourself. Everyone faces struggles, everyone faces setbacks, but someday I promise you’ll look back and those very same struggles will be the reason you are strong, focused, driven, empathetic, and living the life you were meant to live.

Thrive with IBD: My latest podcast interview

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Her name is Natalie. She was diagnosed with IBD at age 21. She has a blog. It may sound like I’m talking about myself, but I’m talking about a friend I’ve connected with online! Natalie Kelley (@plentyandwellwithnat) and I started following one another on Instagram several months back and came to realize how similar our patient journeys have been. Screen Shot 2019-12-28 at 1.36.32 PMShe has ulcerative colitis and I have Crohn’s. She is 24 and I’m 36. But, our lookout on life and our interest in bringing comfort and serving as a positive voice for the community is the same.

Being diagnosed at age 21 is a difficult time in life. You’re at a crossroads from being a kid to a young adult. You’re navigating the next chapter of life and looking to start your career. We relate on how IBD stopped us both in our tracks in that pivotal moment and how far we’ve both come since.

Natalie launched her podcast, Thrive with IBD, in 2017. Her hope is to end the stigma around chronic illness and show that you’re never alone in your struggles or experiences. As a wellness blogger and a holistic health coach, Natalie works tirelessly to educate others about navigating life, love, and everything in between, while living with IBD. Today (December 30th) you can check out her latest episode. She interviewed yours truly. When she asked me to be on her show, I was so honored, as I’ve admired her work from afar for a while.

We talked about what dating, marriage and being a mom is like with IBD. I am the first IBD mom she had on the show! Interestingly, Natalie’s mom was diagnosed with Crohn’s at age 16. DSC03601So not only does she have her own personal patient experience, but she’s been a part of a family unit who’s dealt with the ups and downs her whole life. It was emotional for me as an IBD mom, to hear firsthand from a 20-something about what it was like to not only grow up with a mom who has Crohn’s, but later be diagnosed with IBD herself.

Click here to check out the episode.

With nearly 40,000 Instagram followers, Natalie has quite the following. What always amazes me is how present and genuine she is. She responds to comments both publicly and privately, her content is well thought out and impactful.

“Each day I get to wake up and get to use my story to help other women with IBD. I get to connect with chronic illness warriors around the world. I get to use the pain and grief I’ve endured to help heal others’ pain and grief, even if just a little bit.”

Screen Shot 2019-12-28 at 1.37.22 PMIf you’re looking to follow someone who is sure to lift your spirits and make you feel empowered, she’s your girl. When I chatted with her on the phone, I told her how much I look up to her for her advocacy work, despite being 12 years older!

As we gear up for 2020, the start of a new decade, and a new year, it’s our hope that you focus on self-love and embrace who you are, despite your IBD. As Natalie says, “There are ebbs and flows in this journey of mine and I’ve learned to take them as they come. I’ve learned to soak up every second of the good moments and give myself grace during the hard ones. I’ve learned to stand up for myself, be my biggest advocate and put myself first.”

Natalie and I both say that if we were given the option to get rid of our IBD diagnosis that we wouldn’t. We both feel we were put on this path for a reason and that our diseases have shaped us into who we are today. I hope that if you’re reading this, and you’re newly diagnosed, knowing that brings you comfort and peace of mind. IBD is not your identity, it’s a part of you, but it’s not all of you. Natalie and I can assure you of that.

 

Flaring during pregnancy and after: Addy’s story and advice for IBD moms

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Flare ups during pregnancy and after, starting a biologic while breastfeeding, and wondering whether one baby is enough—all experiences and concerns that have weighed heavily on 30-year-old Addy Irvine of Minneapolis. Addy was diagnosed with ulcerative colitis in May 2015. Addy and William 1 yearAddy’s son, William, is now 13 months old. This week—she shares a guest post about her journey to bring him into this world and the challenges and victories she’s experienced as a new mom with IBD. I’ll let her take it away.

Children were always a part of my plan. My husband and I knew we wanted to have children and were ready to start trying after I completed my Master’s degree. While my colitis had not been officially determined to be in remission, I was on Asacol and had not experienced symptoms for some time when my IUD was removed. After 8 months of “letting the universe decide” when to have a baby, we found out I was pregnant! Yay!

My first trimester was filled with the usual discomforts. Second trimester, you know, the one where you’re supposed to enjoy pregnancy and start feeling better? Not for me. I went through the worst flare of my life. It was easily the most miserable I’ve ever been, both physically and mentally. I had to stay home from work multiple days a week and was unable to help at home. I don’t know how I could have made it through without my husband’s support. 15 weeks

My doctors put me on oral Uceris, and when that wasn’t enough, they also put me on the rectal foam. The Uceris made things bearable, but I knew I wasn’t doing well.

I wasn’t gaining any weight despite my ever-growing belly. My friends and colleagues started noticing that I was losing weight. At first, it was in the chipper way people comment on weight loss. After a while people started to ask about it in a concerned voice.

I’d tell myself, “At least my baby is doing okay!”

By 3rd trimester, I could function normally most of the time. At my 36-week growth ultrasound, it was determined that my son had intrauterine growth restriction, and they talked to me about the possibility of induction between 37 and 39 weeks of gestation. 33 weeksAfter my second-high blood pressure reading that week, a nurse advised me to come into labor and delivery. When I arrived, I was diagnosed with gestational hypertension and started the induction process the next morning at 37 weeks.

Five days of induction later (really), my beautiful baby boy, William, arrived at 5 pounds 1.5 ounces. He was small, but healthy! After he was born, my UC got so much better until he was 2 months old when I had another flare. Suddenly I needed to care for my newborn in addition to taking care of myself. It seemed an insurmountable task. With frequent bathroom trips and intense fatigue, the newborn phase was made even tougher.

Holding on to the hope of breastfeeding

Breastfeeding was something I was really hoping for as part of my journey into motherhood. Newborn WilliamWhen William was born, I was thrilled, and so fortunate, to have a successful early breastfeeding relationship with him. When I started flaring again, breastfeeding became a significant challenge. I’d be with William during a late-night feeding, get a few minutes in, then have to wake my husband to keep William safe while I quickly ran to the bathroom. Obviously, this made William more than a little upset to start eating only to be pulled away. I also became increasingly worried that he wasn’t getting the nutrition he needed from me because I wasn’t absorbing nutrients the way I needed to. I upped my supplements and kept close tabs on his weight but continued breastfeeding. At this point, I knew I needed to do something different with my medications. What I was doing clearly wasn’t working.

I started to research biologics and met with my doctor to discuss my options. He recommended Entyvio, and my insurance approved it. I worried William would be harmed by breastfeeding while I was on a biologic. Would he be more susceptible to illness because of it? Would my supply be affected? My doctors reassured me that it was safe to be on Entyvio and continue breastfeeding, but I knew the research is limited. After seeking information and support from other moms who have breastfed on biologics, I decided to take the risk, start the biologic, and continue breastfeeding.

“Healthy mom, healthy baby” is the way I decided to frame it.

From flaring to remission

After 3 infusions, I started to feel significantly better, and I am now in clinical remission for the first time since being diagnosed. I finished my breastfeeding journey about a month ago. My supply wasn’t affected by starting the biologic, and my son has had absolutely no ill effects. He gets sick less than I do! Most importantly, I can engage with and care for him so much better than I could while I was ill. Family photo

This journey has made me think twice about having more children. Pregnancy and childbirth were really, hard on my body because of my UC and other complications I experienced after delivery and I’m not sure I want to risk my health again. Sometimes I wish that I were like “normal” people who approach pregnancy without having to think about all of this. I remind myself that this is MY normal, and that’s okay. And it’s okay to have one child if we decide to do that. I keep repeating this: healthy mom, healthy child(ren).

Reflecting on my journey, here are some lessons learned that I hope you take away:

  • Work closely with your GI doc and your Maternal Fetal Medicine team to make a plan BEFORE trying to have a baby (or even “letting the universe decide!)
  • Prioritize your own health, even when pregnant. Remember: healthy mom, healthy baby. This includes taking care of your mental health.
  • Connect to other moms who have CD or UC to learn from them
  • Flaring during pregnancy and postpartum is physically and mentally exhausting – lean on your support system heavily if you find yourself in that place
  • If breastfeeding is important to you, talk to your doctor about whether it’s safe to continue to do so while on a biologic – utilize the IBD Parenthood Project as a helpful resource.