Struggling with the physical and emotional burden of fistulas

March 21, 2022March 21, 2022Leave a comment

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

March 14, 2022March 14, 2022Leave a comment

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

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

February 28, 2022February 28, 2022Leave a comment

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 20^th, 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

February 21, 2022February 21, 2022Leave a comment

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

IBD Motherhood Unplugged: I have IBD and underwent IVF

January 31, 2022January 31, 2022Leave a comment

IBD and motherhood can be beautiful, but it can also be extremely complex and complicated. Especially for those who deal with infertility on top of their Crohn’s disease or ulcerative colitis. As someone who did not have any struggles getting pregnant, I feel it’s extremely important to shed light on the fact that my story, my experience is just that—there are SO many other journeys that need to be shared and heard when it comes to infertility as it relates to IBD.

This week on Lights, Camera, Crohn’s we hear from several women with IBD who juggled their chronic illness while enduring In vitro fertilization (IVF).

Ashley Miller was diagnosed with Crohn’s disease in 2013 when she was 26 years old. As part of her family planning, she discussed her desire to be a mother with her OBGYN. Her doctor told her to give it a go for 6 months and if she didn’t get pregnant, they would start additional testing. Six months passed without a positive pregnancy test. Ashley followed up with her doctor and was diagnosed with bilateral hydrosalpinx (blocked fallopian tubes), because of her Crohn’s.

“Although this diagnosis was upsetting, I was happy to hear that the doctor found a cause for my infertility and that IVF would be a good option for me. I was so lucky to have success with my egg retrieval and subsequent embryo transfers.”

Ashley says IBD prepared her for infertility.

“I’m the type of person who does not like to dwell on issues, I like to take action right away. I am grateful that my IBD was in remission during this time, otherwise, I would not have been able to pursue IVF immediately. I needed clearance from my GI, maternal fetal medicine (MFM) physician, and the reproductive endocrinologist (RE) before starting IVF.”

Ashley is on Stelara and had bowel resection surgery in August 2021. She has a 3-year-old son and a 15-month-old daughter. She intentionally had her children close together thanks to IVF to capitalize on her IBD being in remission.

Jenn Carmichael was diagnosed with Crohn’s disease in 2006 when she was 21 years old. She got married in 2016 but was forced to wait to have kids because she was flaring. She manages her IBD with Stelara and azathioprine. Since her diagnosis she’s underwent an ileocolic resection, a revision, and several incision and drainage procedures (I&D) with setons for perirectal abscesses. Fast forward a few years and she was finally in remission.

Jenn and her husband started trying to conceive. After 6 months she followed up with her GI and consulted with a MFM doctor who specialized in IBD pregnancies.

“My MFM doctor was well versed on all the medications and complications of Crohn’s. He told me that due to my past surgeries if I were to get pregnant, I would need to have it confirmed via ultrasound right away. He explained that due to all the surgeries I’ve had in the abdominal region, that I was at a higher risk of having my fallopian tubes blocked and having an ectopic pregnancy. He also recommended I have a consultation with an RE since we had been trying with no success.”

Jenn underwent a full workup to investigate her hormone levels and had an ultrasound to look at her fallopian tubes. At this point, she was 36 years old. And while her tubes weren’t blocked, she had diminished ovarian reserve. She was told by her care team this was most likely a direct result of all the Crohn’s-related inflammation she had endured.

“Our infertility doctor recommended we start IVF right away. It was a difficult ovary stimulation that lasted much longer than normal (I was on stims for about 28 days vs. the normal 12 days). I wasn’t responding to the stim medications, but I was finally able to make it to the egg retrieval. Unfortunately, when I went in for my egg retrieval, I woke up to devastating news. They were not able to retrieve any eggs. I was heartbroken to say the least. We regrouped with our IVF doctor a week or so later and came up with a new plan.”

Jenn was put on a different medication protocol for the egg stimulation and was even told she should consider donor eggs. She started her second IVF cycle shortly after.

“Just as we started the stimulation phase of the cycle, I got sick with pneumonia and had to cancel the cycle. Then COVID hit about a month later, so all IVF cycles were canceled in my state for the time being. Around July 2020, we were able to try that IVF cycle again, but had to cancel once again due to no response to the stimulation medications.”

At this point Jenn told her RE that she would start to explore the egg donor option, but she wasn’t ready to give up with her own eggs just yet. She tried one last IVF cycle with yet another protocol. One egg was retrieved. The next morning her phone rang, and her heart dropped. Her doctor called to let them know the egg did not fertilize overnight and was abnormal.

Jenn once again re-grouped with her care team. Donor eggs were discussed. A specialized ultrasound showed her fallopian tubes were blocked. She left that appointment with information about an egg donor program, but she wanted to try another cycle with yet another protocol.

“Around the same time, I started to experience pain in my lower right abdominal area. I was admitted to the hospital and was diagnosed with bilateral tubo-ovarian abscesses. The one on the right started to tunnel (create a fistula) towards my sigmoid colon. I was brought to the OR shortly after not knowing if I was going to wake up with one or both fallopian tubes, either ovary or my sigmoid colon. Luckily, I have an amazing colorectal surgeon who’s been part of my team since I was diagnosed with Crohn’s. They did have to remove both fallopian tubes and my right ovary, but my left ovary and sigmoid colon were spared.”

The surgery took a toll on Jenn. Losing both her fallopian tubes, she knew without IVF, she would never be able to get pregnant on her own. During that time, she did a lot of thinking and research about IVF, Crohn’s, and what their future looked like. She also met with a social worker who specialized in infertility to help work through everything she was feeling.

“Once I was healed from surgery and mentally ready, my husband and I decided to pursue IVF using donor eggs. We worked with an egg donor agency to find an egg donor that we liked. After going through the process with all the administrative/legal paperwork and having our donor medically worked up, our donor was able to start the IVF cycle for egg retrieval. The egg retrieval was successful, and we had our first embryo transfer in August 2021. Our first transfer was successful, and I am currently 25 weeks pregnant expecting our first child, our sweet baby boy in May 2022.”

Christina LaDue was diagnosed with Crohn’s disease in 2010 when she was 20. She had a bowel resection at age 23 to remove a fistula and her mom had the foresight to ask that an OB/GYN surgeon be present to ensure there was no damage to her reproductive organs.

“The OB/GYN noted that the inflammation in my pelvis was so great that he could not make a determination about my fertility at that time. When I shared the post-op reports with my PCP, he indicated that because of the noted inflammation I should only wait 6 months (as opposed to the one year that you’re supposed to wait) before pursuing assistance. After getting married and trying for six months I sought a referral to a RE who ran tests and concluded that my tubes were blocked due to scarring from my abdominal surgeries. She had us go right to IVF (as opposed to IUI first).”

Christina started her first round of IVF in November 2018. None of the fertilized embryos made it. She did another round in February 2019 and did a fresh transfer on Day 3, which was also unsuccessful. She did her first frozen embryo transfer (FET) in April 2019 and her son was born in December 2019. When he was 18 months old, she returned to the RE and did another FET in November 2020, which was unsuccessful. With one embryo left, they did an FET in February 2021 and recently welcomed a son to the world in October.

“The most triggering for me is during the initial routine testing via ultrasound my RE found fluid in my abdomen. This was extremely upsetting to me having undergone multiple treatments for recurrent abscesses because of a fistula. I freaked out and paged my GI who ordered a stat MRI. The MRI showed I have endometriosis and hydrosphix (fluid in my tubes) but nothing was wrong with my Crohn’s disease. That said, I was a huge emotional mess waiting for the MRI results and I thought for sure I was rocking another fistula.”

Christina recently started Inflectra (a biosimilar), she was previously on Remicade from September 2013-October 2021.

Megan Picucci was diagnosed with Crohn’s disease in April 2017 when she was 30 years old. After being cleared by her GI and MFM she started trying and got pregnant. Unfortunately, shortly after finding out the news she started bleeding and had an ectopic pregnancy.

“Once I finally got my period in February 2020, I had an hysterosalpingogram (HSG) to check if my tubes were being blocked. It was inconclusive. Luckily, because of my prior abdominal surgery with my IBD and the ectopic pregnancy, I could switch right to IVF. All the bloodwork, shots, etc. was rough but I felt like my Crohn’s journey helped prepare me. I was used to bloodwork, I was used to injections, I had a PICC line at one point, so I was used to mixing meds.”

The first round was promising for Megan and her husband. There were several embryos and her first FET stuck.

“I waited with bated breath. I was sure it was another ectopic for no reason other than I’m not lucky when it comes to health issues. Well, she (though we didn’t know that until delivery) stuck and though I had moments of panic of something bad happening, it didn’t.”

The emotional toll of IBD weighed heavily on her as she prepared to bring a life into this world. She is on Remicade and had emergency bowel resection surgery in April 2017 and the reconnection surgery in July 2017.

“I had a lot of… ‘should I being doing this?’ thoughts. Even though my IBD was under control prior to trying I also knew that could change at any moment. How could I raise a kid with a flare or surgeries and what if I pass my IBD on? But having a great support system made me confident I’d have help if those things occurre. Happy to say my daughter is now 11 months old.”

Jade Fiedler was diagnosed with Crohn’s disease in 2012 at age 22. Jade is on Humira and had an ileocolic resection in July 2015. Her and her husband tried for a baby for one year, but around 7-8 months in she felt something wasn’t right.

“We saw an OB who specialized in RE. We took an aggressive route for treatment. I had an HSG (right tube was blocked and could not flush), Hysteroscopy (which found polyps) and an ultrasound which found a heart shaped uterus. We immediately jumped into 3 back-to-back IUI cycles due to those findings and my husband’s sperm sample being mostly normal with a tiny morphology issue. After those failed, we did a laparoscopy which found more polyps in my uterus (endometriosis), and they found the tube was blocked and covered in scar tissue due to Crohn’s surgery in 2015.”

Jade then had two more failed IUIs but didn’t stop there.

“I advocated for insurance coverage at work, and they covered our first cycle of IVF three months later. We got two genetically normal embryos and one was transferred on October 4th. I am currently 19 weeks pregnant!!!”

She is happy to share what she sent to her employer for a reference if you need it.

Jade says living with IBD and going through IVF is “terrifying” since you must be in remission with your Crohn’s to even try IVF.

“I was going through an emotional toll of finding out that not only are we not able to get pregnant right now, but there’s a very good chance we never will, and most signs point to me as the problem. It’s all encompassing and overwhelming.”

Much like IBD, Infertility is a full-time job.

“Balancing appointments and results and medications and insurance coverage and time off work — all while trying to stay NOT stressed to cause a flare. It’s an added issue when you have scar tissue and scars, which creates more of a puzzle for doctors. It’s really hard to have two diagnoses that are totally out of your control and leave you hating your own body.”

Even though Jade is due with a baby boy in June she still experiences a gamut of emotions. Everything from joy and anxiety to guilt, happiness, and fear. Her and her husband are leaning into their faith and praying their son will continue to grow at a healthy rate and arrive safely.

Katie Ferriss was diagnosed with Crohn’s disease in 2012 when she was 26 years old. After six months with no luck and a series of tests, she learned her right fallopian tube was a hydrosalpinx (Dilated fallopian tube). Unfortunately, the tube needed to be removed, which put her at another disadvantage for getting pregnant.

“We moved forward with 3 medicated IUIs back-to-back-to-back since I had a dominant follicle on the left side each time. Unfortunately, all the IUIs failed. Our next step was IVF. I was so hopeful; I just knew this would work for us. My first retrieval only yielded 4 eggs, 3 of which were mature, 2 fertilized, and 1 made it to the blastocyst stage. We tried a fresh transfer, but ultimately did not end with a pregnancy.”

Katie and her husband were devastated. They had gone through IVF and had nothing to show for it—not even additional embryos to try again. Through the process, Katie learned she was a ‘poor responder’ to medication and had poor egg quality, which is common with autoimmune disease.

“After a couple of months, we moved forward with another retrieval. This time our RE changed to a much more aggressive protocol with higher doses of stims right out of the gate. I responded much better overall and produced several more mature follicles.

During our second retrieval, the RE was able to retrieve 10 eggs with 9 being mature, and at the end we were able to freeze 2 high grade embryos. We thought we would be able to move right into a frozen transfer cycle, but Crohn’s had other plans for us.”

Because of the massive amounts of infertility medication and the unbelievable stress levels, her body almost forced her to rest—she had a Crohn’s flare.

“My GI was adamant I stop fertility treatments until my Crohn’s was in remission. I would do a colonoscopy in 6 months to learn where I was at. Again, completely devastated that our plans for a baby were put on hold due to my body not cooperating. My GI doctor started me on a different medication, Cimzia, that was very pregnancy friendly as it does not cross through the placenta to the baby if I was finally able to get pregnant. Thankfully 6 months later during my follow-up colonoscopy, my Crohn’s had been put in remission, and I was able to be put back in fertility treatments.”

Katie and her husband were hopeful that the stars were finally aligning for their family. But shortly thereafter they had a failed transfer. They only had one frozen embryo left.

“My RE then tried another test called an Endometrial Receptivity Analysis (ERA) to make sure we were transferring at the optimal time. That test led to another discovery that we were transferring too soon, and I needed 24 more hours of progesterone. We started another transfer cycle using a different medication protocol and transfer timing and found out 10 days later it worked. I went on to have a very uneventful pregnancy, and our miracle baby was born 9 months later in March 2019.”

Katie now manages her Crohn’s with Stelara. She developed a stricture and had bowel resection surgery in August 2020. She credits the surgery as giving her life-changing relief. Her and her husband now have two children—their biological son is two. They are in the process of adopting their 3-year-old daughter from foster care.

COVID and IVF

On top of these challenges, going through infertility and oftentimes being immunocompromised from IBD medications through the pandemic has added extra challenges for everyone involved.

“Every procedure, appointment, surgery, getting sad news, even “getting knocked up” was alone. Alone in a cold room, where you are undressed in front of strangers and probed and in pain. I did it all alone. I found a strength in myself that I never knew existed and for that, I have changed. In some ways I am stronger; in others I am damaged. Trauma and infertility go hand in hand. This is something I will have to work through, which I will, but this chapter of my life will never be just a dull memory,” said Jade.

Advice for IBD mamas in waiting from those who have lived it

Allow yourself time to grieve your infertility diagnosis and find support with friends and family. Try to stay positive and keep your “end goal” of having a baby in mind.
Be patient, sometimes your expectations of procedures and embryo transfers may change due to situations out of your control.
Stay hopeful. It may seem like there is no end in sight at times, but always have hope.
You are strong and will get through this.
This is true for any woman struggling to get pregnant: it sucks. Just acknowledging how painful it is to want something so badly and feel like it is unobtainable. It’s OK to feel those big feelings.
Use your knowledge, expertise, and experience as an IBD patient to your advantage. You know how to navigate medical coverage and insurance, don’t hesitate to advocate for yourself. You’re in a much better place to deal with all this medical stuff than someone who does not have a chronic illness.
The IVF process is long. The first appointment for the first positive pregnancy test took 10 months. And the second time, from the time we resumed working with our RE to the positive pregnancy test took 5 months.
Trust your medical team. And if you don’t trust your medical team, it’s OK to find a different doctor or a different clinic. There are no guarantees in IVF and it’s hard for folks, especially after going through all the treatment to have a failed cycle or failed transfer.
Give yourself grace you did nothing to cause your IBD and you also did nothing to cause your infertility. However, it is also ok to be mad, have low moments, and be sad. All those emotions are valid, allow to yourself to have them.
Get the colonoscopy and upper endoscopy done before you start actively trying. Make sure you have records shared for BOTH clinics. Don’t let people pressure you into taking medication for fertility that may offset or flare up your IBD. Don’t forget to remind your providers every time – they may forget.
Find support groups. There are more women than you think going through this. My Facebook community that is an IVF/IUI due date group for women who were due winter/spring of 2021 was the best community I could ask for.
Talk about it. if you feel comfortable. Share your story, share your pain, more people go through this than we realize.
You are more capable than you think. You are stronger than you will ever know. This is going to suck and it’s going to challenge your mental health, friendships, relationship with your husband, your connection to family, you work life, etc. it’s going to change you in ways you could ever imagine and it’s going to rip your heart out of your chest because you can’t know this pain unless you’ve lived it. But I promise you will come out stronger and you will be changed in the most incredible ways. Hang in there.
I can see your fear and it’s big. But I can see your courage and it’s bigger.
Don’t give up hope. You are so much stronger than you give yourself credit for; IVF is incredibly difficult, but you CAN DO IT!!
Do your own research. Find your tribe – IBD and IVF warriors are incredible and there are plenty of us out there in both camps. Get a therapist. Get a support group. Read books. Bake. Find your coping skills and don’t give up. You’re a badass. Having IBD is hard. Going through infertility is hard. But you can do hard things.

IBD Motherhood Unplugged: My dog had IBD

January 24, 2022January 24, 2022Leave a comment

Many of us in the chronic illness community rely on our four-legged friends for comfort, support, and unconditional love. Animals are members of the family. February marks two years since my dog, Hamilton James, crossed the rainbow bridge, and the void and pain of his loss remains. As I write this, I’m facing the bookcases in my family room—an entire shelf is dedicated to him, and I wouldn’t have it any other way.

My dear friend and former college roommate, Lindsay, and her husband, Kevin, ironically had a dog with IBD. Yes, that is possible. This week on Light’s Camera, Crohn’s, we look at how IBD presents in animals and learn firsthand how my friends went above and beyond to bestow the same love, patience, and affection that they had been lucky enough to experience from their Foster Brown.

Love at first sight

One day Lindsay was perusing social media and came across a post on Facebook. The post featured a photo of a darling dog in Chicago and stated he had been re-homed five times and was only five months old. In that moment, Lindsay’s life changed. She knew she had to rescue that dog. And she did. One of my favorite traits about Lindsay is her sense of humor and genuine empathy for others. She decided to name him Foster Brown as a cheeky reference to his past. His gotcha day was January 5, 2012.

From that moment on, “Fost” and Lindsay became inseparable. Her love for Foster always reminded me so much how of I felt about my Hami. They were both Chihuahua-Terrier rescue pups who were with us before we met our husbands and before we had our children. They were part of our past and were with us through all of life’s major milestones. Heartbreaks, career changes, moves, marriage, pregnancy, motherhood, you name it.

Lindsay even found out Foster’s entire genetic make-up. Here was the breakdown:

62.5% Chihuahua

12.5% Miniature Pinscher

25% Breed Group(s): Terrier, Sporting, Sighthound

According to Fetch by WebMD, there is no one cause of IBD in dogs and the condition is not clearly understood by veterinarians. “IBD is a condition in which your dog’s intestine or digestive tract becomes inflamed consistently. The continuing inflammation damages the lining of their digestive tract in a way that prevents food from being properly digested. It can also lead to other health problems if nutrients are not absorbed as they should be.”

It’s suspected that IBD may be the body’s response to underlying conditions. Causes may include: genetic markers, food allergies, parasites, bacteria, or a weak immune system.

Certain dog breeds have a greater likelihood for getting IBD:

Weimaraner
Basenji
Soft-coated wheaten terriers
Irish setters
Yorkshire terriers
Rottweiler
German shepherd
Norweigian lundehund
Border collie
Boxer

IBD symptoms in canines

As a pet owner, you may wonder how IBD presents. According to AnimalBiome, dogs with IBD often deal with the following symptoms:

Chronic intermittent vomiting
Diarrhea
Loss of appetite
Picky eater or “not wanting to eat what they used to eat”
Nausea
Frequent lip licking
Increase in drooling especially when they’re presented with food, but they don’t eat it
Burping, extended neck
Heartburn, acid reflux
Flatulence
Gut grumbling, rumbly in the tummy
Bloating

When Foster’s health took a turn

Foster had always been healthy and energetic prior to these issues… aside from a few dental problems here and there which is common for small dogs. He used to be able to run 5 miles alongside Lindsay! Much like IBD symptoms in humans, Foster’s symptoms were gradual. Everything started going downhill the summer of 2020. His veterinarian noticed abnormalities in his blood work before symptoms began. Foster’s symptoms included weight loss, extreme hunger, restlessness, pica, and loose stools.

“During the last three months of his life, he started having rectal prolapses which typically resulted in a trip to the emergency room. There was once or twice that I was able to reverse the prolapse by putting sugar on it per vet recommendation.”

After several panels of labs and tracking medication, food, and triggers, Lindsey’s vet diagnosed Foster with IBD with lymphangectasia after he underwent an x-ray and ultrasound.

“I could tell that he wasn’t feeling well when he had loose and inconsistent stools. The other behavioral symptoms were trickier to identify because there had been so many changes- several moves (2016, 2017, 2020) and two babies (October 2019, July 2021). Looking back, it’s easier to tell that he was very sick. He was much pushier with seeking out food (hunger) and I didn’t realize until after he passed that I NEVER swept the floor- he ate everything that hit the floor including dust, hair, dirt (pica). I was very cognizant, however, that his need for affection changed. During his last couple years, he wasn’t nearly as cuddly and stopped sleeping under the covers.”

Treating IBD in Dogs

Foster had a morning and night pill box. Yes, you read that correctly. His vet was constantly adjusting his medications to reduce his symptoms and to attempt to stay ahead of other health-related problems. Much like we struggle to gain access to medication through specialty pharmacies, the same is the case with canines. In true IBD fashion, Lindsay would go through Walgreens, 1-800-PetMeds, a specialty online pharmacy, and the vet office to ensure Foster’s disease management was possible.

Some of his medications required refrigerator storage and another pill needed to be frozen because it upset his stomach otherwise. There was also a powder that was sprinkled on Foster’s food once daily. He ate a prescription low-fat food to avoid flare ups and it broke their hearts to deny him tasty treats like cheese and whipped cream that he was accustomed to.

The importance of caregiving for IBD carries over to canines, even moreso than adults since animals are completely reliant on their owners to ensure their health, safety, and well-being. Since each dog and their case of IBD is unique, it can be a game of trial-and-error to find the right treatment plan.

“My husband, Kevin, was diligent in administering his medications twice daily, while I focused on tracking symptoms, communicating with our vet, and ensuring that Foster’s medications were stocked and placed in his pill box. My dad (a former paramedic) administered his weekly b12 injections; he also took Foster to the doctor/ER when I was tied up with my young children. Luckily, my parents were living with us during Foster’s final months and they both were critical in managing his wellbeing and health- helping with the kids so I could take Fost to appointments, pick up medications, administer medications, etc. Foster and I were beyond lucky to have lots of wonderful support.”

The final days

In the last months of Foster’s life, there were nights that he had to stay in the bathroom for “the time being” … don’t worry, he had a comfortable dog bed. He would cry and cry and cry because he wanted to come to bed, but it wouldn’t have been sanitary with the issues he was having.

“This was absolutely heartbreaking and sparked high levels of sadness and anxiety for me as well. After several emergency visits for problems that had no medical solution, I decided that Foster would never spend another night in the bathroom. On his final night, he slept in our bed thanks to some old towels and the creative use of one of my son’s diapers.”

Advice for fellow fur mamas/dads whose dogs have health issues

In addition to caring for Foster and her two children, Lindsay is a practicing clinical psychologist in Indiana. She offers the following advice for caregivers of pets with chronic health conditions:

Check out Lap of Love. It’s a wonderful resource for navigating and coping with a pet’s chronic health problems. It has tools to evaluate quality of life and supportive information that helped prepare Lindsay for the loss of her fur baby.
- “I wish I would have recognized that the level of disruption to our family’s routine was related to the severity of Foster’s medical condition. Lap of Love was so helpful in finally recognizing that his suffering had become too much for him to bear and for us to stand witness. We didn’t fully recognize how sick he was until he was gone. You just get into this routine of caring for them and doing whatever it takes and almost forget that keeping them here might be prolonging their suffering. It’s hard because they can’t tell you with concrete words.”
Be open and specific about the support you need. It is immensely emotional and stressful to care for a chronically sick pet and have their life in your hands, be sure to lean on others and openly communicate during the difficult moments.
Be honest with yourself about your pet’s quality of life. Lindsay and her husband were grateful Foster didn’t go during an emergency. On his last morning, they were able to stop for a tasty meal that would surely have triggered a flareup. Even though he was only 11 pounds, Foster scarfed up every bit of his warm Egg McMuffin.
Discuss the financial aspect of your pet’s care with your vet. Since medical bills add up quickly. Most people don’t have insurance for their pets and even when they do, reimbursement is often spotty. Be open and check in as needed so you can work collaboratively with your vet to create a treatment plan that fits your financial situation.

Foster passed away peacefully in a fleecy blanket while being loved on and hearing what a good boy he was and how lucky Lindsay and Kevin were to have him.

“I hated to hold his life in my hands, but I would never take back the amazing years Foster and I had together. It was just me and Foster before I met my husband and had kids and I could never thank him enough for his unwavering love and friendship. You’re a good boy, Foster, and momma misses you more than you could ever know.”

Foster Brown August 4, 2011-November 2, 2021

The Patient Experience: Living with IBD and additional chronic illnesses

January 17, 2022April 19, 20231 Comment

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

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

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

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

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

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

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

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

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

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

Trying to find balance

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

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

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

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

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

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

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

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

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

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

Feeling unsupported through the pandemic

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

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

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

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

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

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

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

Rapid Fire Chronic Illness Tips

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

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

IBD Motherhood Unplugged: I have Crohn’s and COVID

January 10, 2022January 10, 2022Leave a comment

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

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

Discovering I was exposed

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

Here’s how my COVID has played out:

Friday, December 31^st—headache, brain fog

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

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

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

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

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

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

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

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

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

Managing Crohn’s Through COVID

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

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

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

Mom Life with COVID

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

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

Breastfeeding with COVID

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

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

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

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

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

FAQ on COVID-19: Breastfeeding safety for mothers

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

Recommendations Moving Forward

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

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

Paying It Forward with IBD

December 20, 2021December 20, 2021Leave a comment

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

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

Staying connected through the pandemic

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

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

A call to help

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

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

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

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

Passing along the appreciation

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

“Dear Natalie,

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

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

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

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

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

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

IBD Motherhood Unplugged: My daughter was diagnosed with Crohn’s as a newborn

November 29, 2021November 29, 20211 Comment

Less than one percent of the world’s population has it. I’m talking about Infantile VEO-IBD, or “Very Early Onset” IBD. What’s that you may wonder? It’s a rare and often fatal subset of Crohn’s disease that impacts children ages two and under. This week we hear from a mom whose daughter Riley was diagnosed with Infantile VEO-IBD as a newborn, she’s now 18 months. During her first year of life, Riley spent 27 weeks in the hospital. Jana Gilkey opens up candidly about what it’s like to be this type of IBD mom, what she wants others to know about her daughter’s patient journey, and how you can best support families with medically complex children.

Clinical characteristics of Infantile IBD are different from those of an adolescent or adult-onset case with features that are more aggressive & rapidly progressive. There is no known treatment plan and no known cure. Much of the treatment and therapies available are considered research and trial based and are not currently approved by the FDA due to the young age of those diagnosed.

Jana says she could tell something was off from the moment Riley was born. At first as an exclusively pumping mama, she thought her daughter had a dairy intolerance, so she cut every common allergen from her diet.

“We saw our first pediatric gastroenterologist when Riley was one month old. As a mom, my intuition was screaming at me that something was terribly wrong. We saw a few different pediatric gastroenterologists and by month two of life, her symptoms had only progressed. By the time she was 3 months old, she was not stable enough to stay home and had completely stopped eating by mouth. What little we could get her to eat, she was unable to keep down. She was diagnosed with failure to thrive and rapidly declining on all accounts.”

Riley was hospitalized for the next three months. Every day brought new symptoms and complications. She had been evaluated for every condition and received her first PICC Line in which she received continuous TPN & Lipids due to not tolerating any kind of substance in her stomach. Riley also received a series of blood, iron, and albumin transfusions.

Receiving the Infantile VEO-IBD diagnosis

An upper and lower endoscopy revealed lesions throughout Riley’s entire GI Tract. Bingo.

“I began to scour the internet on anything and everything I could find on Infantile VEO-IBD. There was a white board in our hospital room. I wrote down everything I could find on that board. I drew myself diagrams and made notes on doctors to try and connect with. I recorded nearly every second of my daughter’s day those 3 months of our first hospital stay. I ordered books and searched and listened to every podcast I could find on children diagnosed with autoimmune diseases in the first few months of life. I fell asleep most nights watching YouTube videos on nearly every kind topic you can imagine regarding genetics, the immune system, how the body processes monosaccharides, how the brain communicates to the GI tract, and everything else in between I could find to better understand, educate, and advocate for my daughter.”

Like anyone with IBD can relate to—the unpredictability and uniqueness of each person’s experience with IBD makes a diagnosis extremely challenging to cope with.

“While all of my research and studies have been vital to my education and understanding, the very best education (and support) we have received has been from those who also walked a similar journey battling Infantile VEO-IBD.”

How it feels to watch your baby fight a chronic illness

The way Jana describes what it’s like to be a mom watching your child fight an uphill battle against their health had me crying. She explains her experience and perspective so beautifully, yet it’s heart-wrenching to read.

“Most of the time it feels like frantically trying to catch little fireflies that show a glimmer of themselves and then seem to disappear just before jarring them all up. Impossible to fix and yet, aren’t good moms supposed to fix things for their babies? It feels like trying to catch water in the cup of your hands. It just keeps slipping through, no matter how tightly you squeeze. To me, watching my daughter endure such chronic pain and struggle, feels like a constant dance between surrender and war.”

You can feel the pain and the love in her words.

“When Riley was first diagnosed. I was ready to fight, on a mission to find a cure, fly her anywhere, climb the highest mountain, swim to the bottom of the ocean to find that one special pearl that could bring her healing. I believed (and still believe) that the healing remedy for her is out there. However, I have since come to terms that the journey we are on is not a sprint. It is a marathon. I surrender to the things which I cannot control or change. But I will never stop fighting for better. I am willing to run this marathon for the rest of my life so that, Lord willing, my daughter or maybe even those that come after her don’t have to.”

How IBD has “given” to Jana’s family more than it’s taken

Jana says Riley’s disease has changed everything about her outlook on health and her overall perspective on life in general.

“I believe it has given to our family more than it has taken. Riley’s battle with Crohn’s Disease may have robbed us of nearly all of her first year of life on what “could have been.’’ However, it has given us as a family the opportunity to choose what is and what can be. We have been given the opportunity to choose joy during uncertainty and at times chaos.”

Through the pain and tears Jana has realized that we do not own our health but steward it.

She says, “health is not ours to claim but to honor and look after. While it may at times feel as if I have somehow failed my daughter’s health, this is not true. I have honored it with all it has brought. It was never within my control to begin with. I believe the same is true for others within the chronic illness world. There is a lot of room for grace here.”

A life-threatening setback

Riley recently was unable to absorb any nutrients in her GI tract. She started refusing to take anything by mouth and was provided nutrients intravenously through a catheter in her chest the first 10 months after her initial Infantile VEO-IBD diagnosis. The hope—once the right combination of medications was found to wrangle Riley’s disease under control that a gastrostomy tube (g-tube) could be placed.

“One of the many risks of living life with a central line can be infection of the blood. Riley was at high risk for infections due to the medications she was receiving for treatment in addition to being immunocompromised. Unfortunately, Riley developed a blood infection on three different occasions and one put her body in a state of shock.”

Jana says thanks to the grace of God, Riley recovered and does not have any known organ damage at this time. The last four months she’s been home and started to tolerate food in her GI tract. She’s completely weaned from being fed through her veins!

“While we are still searching and longing to find remission for her, she is able to finally have a little more freedom to be the toddler she is. We still have some hard days, but we do feel hopeful we are on the path to remission and will soon see her body heal. Each day that she feels better, we see more of her personality. It is so fun to finally get to know her and see her able to explore more of her world!”

Treating and managing Infantile VEO-IBD

In her 18 months of life, Riley has been on a laundry list of medications and treatments and endured countless procedures and surgeries.

Medications/Treatments

Proton Pump Inhibitors

Liquid, Topical, & Inhaled Corticosteroids

Biologics

Chemotherapy Trails

Glycopeptide Antibiotics

Additional Daily Dietary Supplements

TPN & Lipids

Surgeries:

Multiple Invasive & Non-Invasive Diagnostic Tests and Scopes

Gastronomy Tube Placement

Catheter Placements & Removals

Riley becomes a big sis

This past August Riley became a big sister to Josephine. Since Riley’s health has not been stable enough to travel or be around people because of the pandemic, Jana is FINALLY able to travel back home for the holidays with her family of four. Many of their loved ones met both daughters for the first time this past week at Thanksgiving. Jana says while the lows of Crohn’s disease have been really low, it makes the highs feel that much higher. As she juggles life with a medically challenged child and a healthy child alongside her husband, she’s trying her best to enjoy being a “mom” instead of solely a caretaker.

“While it is very busy, I will say, that in a way my second born has helped us all to take a breather as a family. It’s helped to remind me that I am their mother still and more than a caretaker to both of them. Up until recently, our life has been about keeping Riley here with us. Thankfully, she is in a much better place, and I can also focus on raising her and her baby sister together! This would all be so much more tough without our wonderful support system we have. My husband is unbelievably helpful in addition to my own mother who has been with us every step of the way in this journey.”

Jana says having tangible support is a huge stress relief. By tangible she means, physical help with chores around the house like doing dishes, the laundry, and even having family members learn how to manage a g-tube so her and her husband can take a nap every now and then.

“None of it is how I envisioned our life going and it sure isn’t perfect, but I would not trade either of my girls for one second. I believe every child comes to the world at the time they are destined to come. I know they are meant to be here at the time they are and together.”

How IBD has impacted motherhood from a parent perspective

Jana says she no longer looks forward to the expectations she may have had for her children. Instead, she looks forward to watching whatever they choose to paint the canvas in front of them.

“It’s actually so much more exciting to not have expectations, just enjoying what I can from each day with them, and on the edge of my seat to cheer them on in whatever they do. They are God’s children, and it is a great honor and challenge for me to be able to steward them well. I trust He will fight for them and will always be with them even when I can’t.”

The journey over the past 18 months has helped Jana gain a better understanding of fellow moms as well.

“What may be best for one family may not be best for the next and that is something to celebrate really – not be judgmental or weary of. Moms have way too much on their backs to place any judgement. The children we have been given were given to each of us as individuals for a reason and no one else. There is no longer room for guilt or judgement here, just grace and support.”

Best ways to support families with medically complex children

When loved ones and friends go through health hardships, we often want to help in some way. But unbeknownst to us some of the ways we approach the conversations can be off-putting without even realizing it. Jana says knowing so many people (many whom they have never met) are praying for Riley, interested in her journey, and supporting them, has been incredibly overwhelming.

“I met so many truly inspiring families and individuals over the last year and a half since Riley’s diagnosis. Sometimes, it can be exhausting to share our story, as there is so much to explain. But, each time I share, I am reminded that we are not alone in this. That is really a huge encouragement when times have felt isolating.”

Jana has come to realize that when it comes to health and those walking through a medical journey, that what we may know or what they choose to share about their story is often just the tip of the iceberg to what they are going through.

“Offer grace, not judgement. Offer time, not advice. People genuinely mean it when they say, “Let me know how I can help.” These questions are well meaning but they put the ball in the court of the person who may be enduring rather than the one seeking to support. It’s often difficult to understand what your own needs may be when in seasons of crisis.”

Instead seek to understand. While it feels natural to ask questions like, “Are you/they feeling better?, “How was your day?”, or “What can I do to help?” These types of questions can feel broad and difficult to answer in the world of chronic illness.

Jana recommends asking questions to seek understanding. She says asking the right questions can be helpful for those we want to support.

Here are some examples:

Can you tell me about your day today?
I spent some time researching the diagnosis you shared with me, and I have a few questions…would you mind if I asked you so I can better understand what it looks like for you?
I would like to know more about what the days look like for you. Would you like to share?
How does your daughter’s diagnosis and patient journey affect you?

Want to do something spontaneous, without asking? Go for it. Deliver a meal, write a letter, offer your time in a way that does not require a friend who may be in crisis to ask things of you. Pain can often feel like a burden and be very isolating. Having someone ask to better understand and invite themselves into our pain helps to lift that burden – just knowing someone else sees.

lights camera crohn's

an unobstructed view

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