IBD Motherhood Unplugged: Being an Ostomate through pregnancy and beyond

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Receiving a Total Colectomy as a mom of two

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

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

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

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

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

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

Pregnancy after a Proctocolectomy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Advice for fellow ostomates about pregnancy

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

IBD Motherhood Unplugged: I have IBD and underwent IVF

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: I have Crohn’s and COVID

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

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

Discovering I was exposed

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

Here’s how my COVID has played out:

Friday, December 31st—headache, brain fog

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

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

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

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

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

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

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

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

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

Managing Crohn’s Through COVID

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

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

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

Mom Life with COVID

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

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

Breastfeeding with COVID

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

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

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

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

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

FAQ on COVID-19: Breastfeeding safety for mothers

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

Recommendations Moving Forward

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

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

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

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

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

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

Dealing with the words chronic and incurable

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

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

Feeling helpless through the struggles

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

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

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

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

Healing with food

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

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

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

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

Forming connections and offering hope

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

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

How to purchase “Invisible Illness”

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

Connect with Heather

Facebook

Instagram

LinkedIn: Heather Hausenblas

Email: hhausen@ju.edu

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

Website: www.heatherhausenblas.com  

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

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.

Photo cred: Alisha Gilkey

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!

Photo cred: Alisha Gilkey

“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.

Photo cred: Alisha Gilkey

“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.

Photo cred: Alisha Gilkey

“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.”

Photo cred: Alisha Gilkey

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.

Mom, Model, and Ostomate: Seeing Life Through the Lens of IBD

When she’s not on the runway during Fashion Week or gracing magazines, Keyla is doing all she can to be an advocate for IBD. She was diagnosed with ulcerative colitis eight years ago, but this year, she found out she has Crohn’s disease.

“As a child, I always had intense stomach aches, and difficulty going to the restroom. Sometimes I’d even pass out. Doctors always told me it was constipation. It wasn’t until I was at work one day and passed out that my boss convinced me that I needed additional medical attention.”

At that point, Keyla was having 8-10 bloody bowel movements a day. Prior to ulcerative colitis, she was diagnosed with celiac disease and went on a strict gluten free diet. But unfortunately, the symptoms persisted. She got a second opinion and that’s when she was diagnosed with IBD. Keyla recalls that in the beginning moments of her patient journey she struggled to grasp that chronic illness meant her disease was a “lifelong partner” and that IBD would change her life in unimaginable ways.

The journey to an ileostomy

Fast forward two years after her IBD diagnosis and Keyla rushed to the hospital after noticing unexplained bleeding. Turns out she was hemorrhaging from her uterus and was told she had uterine cancer.

“After having a partial hysterectomy and no longer being able to have children, I’m not sure if it was the stress from everything happening but my UC was never able to be controlled after that. From failed medications like Methotrexate and Remicade to looking like Quasimodo from eye swelling caused by Entyvio and having less hair than a toddler from being on Humira. My body and I had enough. My clinical team and I decided it was time to evict my colon.”

In September 2018, Keyla began her 2-phase j-pouch procedure. Unfortunately, the surgeon discovered her colon was much more diseased than he had thought. Keyla’s colon had become fused to her stomach, resulting in part of her stomach to be removed as well.

“For 2 months I felt amazing with my ostomy and was excited for my reversal in December 2018. But shortly after, I began developing chronic pouchitis, could not gain weight, required IV fluids regularly, with a failed midline and then needed a central line. We decided to disconnect my j-pouch and create my end ileostomy in September 2020.”

All was well until January 2021 when Keyla started bleeding from her ileostomy. It was at this point she was diagnosed with Crohn’s disease and started Stelara. After a few hospital stays and some improvement with her symptoms, she began to experience an increase in rectal pain, urgency, and discomfort, so Keyla needed yet another surgery.

October 27th (less than one month ago!) she had her j-pouch removed with a proctectomy and officially made her stoma permanent. She’s recovering from this surgery as we speak.

How Modeling Came into Play

After reading that challenging medical history, you may wonder how Keyla finds the time to focus on a profession. Modeling is something Keyla always wanted to do when she was younger, but she was too embarrassed to tell anyone. She sort of stumbled into it. Keyla had done a fun photoshoot with a friend and those photos were shown to another friend who works in the fashion industry. Before she knew it, Keyla was a published model!

“Sometimes I still can’t believe I’m living my dream despite having health issues. I had the honor to walk at London Fashion Week this year and have been published in magazines out of the US, UK, and Canada.”

SURREAL Lifestyle Magazine and 4 Seasons Magazine have been her favorite features thus far because the publications have allowed her to speak about her IBD advocacy work. Modeling serves as the perfect platform for spreading awareness to others about ostomies and life with Crohn’s. 

“I always try to take the time for myself and make sure I am doing the things my mental health needs to stay focused and feel well. I also try to own those feelings. If I’m symptomatic, I try to accept it and openly communicate my struggles with others.”

Keyla says having an ileostomy can make modeling a bit more complicated, especially if she has to wear form fitting or tight clothing. If that’s the case, she ends up having to empty her bag more times than she really needs to. She’s grateful her modeling gigs have followed strict COVID guidelines, which helps her feel more at ease during these uncertain times.

When a project allows, she especially enjoys getting to show her ostomy in photos or on the runway. She chalks that up as her biggest career win of all!

A model mother

Keyla’s main focus whether she’s modeling or fighting a flare in the hospital is her family. She has an 11-year-old son who inspires and motivates her to push through the difficult days.

“IBD has made motherhood challenging. Without chronic illness motherhood can be difficult as it is, adding health issues on top of it makes it more complicated. I constantly question whether I’m making the right choices. But I also tell myself all I can do is try and hope that I’m being a good role model for him.”

It pains her to see how her son gets anxious about her IBD and healthcare. He’s been by her side every step of the way since she was diagnosed after he was born. Despite the highs and lows, Keyla feels her son is stronger because of her illness and has an innate sense of empathy and understanding for others.

If her IBD has taught her anything it’s that good days give us happiness and bad days give us experience. Modeling has enabled Keyla to be comfortable in her own skin and live the life she imagined long before Crohn’s was ever a part of who she was.

Connect with Keyla:

Instagram: Keyla.ic

Twitter: @keyla.ic

My thoughts on a colonoscopy pill prep as a first timer

‘Hello darkness, my old friend. I’ve come to talk with you again’. Ahh, the dreaded annual, routine, colonoscopy. I got a little spoiled because my last scope was July 2019. I decided to hold off in the thick of the pandemic out of safety concerns and did a fecal calprotectin test instead. Then, I got pregnant…so I had quite the enjoyable hiatus.

This time around, I decided to try SUTAB, a 24-pill prep + Magnesium citrate, rather than my typical Miralax-Dulcolax-Magnesium citrate. Without insurance and utilizing the patient savings card that’s online, SUTAB can be costly. I went here and printed out a coupon, I was able to get it from the CVS Pharmacy in Target for $50. While it’s more expensive than most preps, to me, it was worth the try.

Thoughts on doing a pill prep

So, this entire experience was a bit complicated for me. The night before my scope, I was miserable from the Magnesium citrate and the initial 12 pills. First off, I’ve come to learn that most GI’s do not make you take magnesium citrate on top of the typical prep. I’m just one of the lucky ones. Magnesium Citrate has always made me vomit, even if I take Zofran before. Prior to this prep, I always did the lemon flavor. I switched to the cherry flavor this time, GAME CHANGER. I had no problem getting it down…but it only stayed down for about an hour or so.

I threw up an unbelievable amount multiple times and never had a bowel movement. After not eating a solid meal for three days I was anxious and worried that I wouldn’t be cleaned out enough and that I was going through this hell for nothing. Sadly, Reid and Sophia witnessed it all go down and it broke my heart that they had to see me so sick and weak on the bathroom floor.

I relied on many members of the IBD community and medical professionals on social media to help guide me through the unknown. I took a Zofran and went to bed. I never woke to use the bathroom. I set my alarm for 3 a.m., took another Zofran, did NOT take the second 10 ounces of Magnesium citrate, and timed the remaining 12 pills every 3 minutes (rather than taking them back-to-back). I found that tip on Twitter and it made a huge difference! I decided not to take the second bottle of Magnesium citrate because in the medical instructions from the SUTAB box it says *not* to take any additional laxatives.

My scope was scheduled for 8:30 in the morning. I finished the pill prep at 4 a.m. and between then and 6:45 a.m. when we got on the road to hospital, I got completely cleaned out. I didn’t get nauseas, and everything fell into place. Now, I credit this with the fact I barely had anything in my body, which makes the prep much easier in my opinion.

If you would have asked me my thoughts on SUTAB vs. my typical go-to, Miralax + Dulcolax + Magnesium citrate the eve of the scope, I would have told you I would never do a pill prep, again. But once I took the Zofran, didn’t take the Magnesium citrate, and timed out the pills, only having to chase with pure water was amazing and very simple. All you have to do is drink 16 ounces of water with the 12 pills, and then an additional 32 ounces of water spaced out after. You can have more water if you want it.

My mom was laughing because she was watching me do multiple loads of laundry, make my son’s school lunch, pump milk for my 4-month-old, shower and get dressed…all on 4 hours of sleep, while in the middle of colonoscopy prep. As an IBD mom, I felt empowered in that moment of all I was capable of doing in the midst of what previously had been a nightmare.

Unfortunately, what is generally the “easy” part of the process—the hospital portion and the actual scope was very emotional and painful for me. My GI had ordered my usual routine labs to be drawn through my IV (to try and save me a trip) but I was so dehydrated from the prep and breastfeeding that the nurses could not get any blood. It took sticking me 8 different times. I felt like a human pin cushion. The IV was placed in a very tiny vein in my hand and the Propofol burned SO badly going in that I almost couldn’t handle it.

I kept asking for my husband Bobby to be allowed in recovery and felt like no one was listening to me. The nurse was gruff and kept poking me, even after I told her I would just go to a lab this week once I was hydrated. The blood pressure cuff even bruised my arm. I cried a lot of tears and the experience brought me back to a traumatic 2008 hospitalization for an abscess in my small intestine that involved 8 tries to get an IV.

My recommendation—do NOT allow labs to be drawn after you are done prepping for a scope. Save yourself the pain and the prodding. I overhead the nurses talking (outside the curtain) of my “room” saying they refuse to ever do this again to a patient and that we should all just go to labs to get bloodwork, rather than trying to get it done when we’re all terribly dehydrated. I had so many band-aids and gauze all over both my hands and arms, the nurses even sent me home with more gauze and band-aids in case I bled in the car. Fun times.

The best news

Luckily, the heaviness of this entire ordeal lifted a bit when my GI walked into the recovery room and said, “your small bowel and colon could not be more gorgeous. It was so pretty in there!” Best compliment you can give a gal with IBD!

She said even my anastomosis site (where my large and small intestine were reattached in 2015) …looked perfect. She explained how ulcers develop and indicate lack of blood flow. No ulcers, mucosal healing, and no biopsies needed. I feel incredibly fortunate that I have been lucky enough to hold onto my remission that came about because of my bowel resection surgery in August 2015.

I understand that “remission” is a complicated term in the IBD world. It doesn’t mean symptom-free, it doesn’t mean a cure…to me, it means I have many more days that I feel well than when I don’t. It means my Crohn’s disease doesn’t have to dictate or rule my life and that I’m able to be present for my family and for myself. It’s knowing that remission can go away in the blink of an eye. It’s happened to me before, and I know it will happen again. But for now, I’ll take a deep breath and enjoy this reprieve from the havoc I know my disease is capable of causing and continue to do all I can to stay well by staying on my biologic, keeping tabs on my lab work, and checking in with my GI whenever I feel like something may be starting to go awry. Remission is not something to be taken for granted. I often get asked what I do to “stay” in remission, I honestly don’t feel like I deserve much of the credit other than being a compliant patient and being very in-tune to how my body speaks to me through symptoms.

Moments that helped me get through

When my kids kept bringing me play food to help me feel better when they realized I couldn’t eat “real food” all week.

How my mom flew in from Chicago to help with the kids and to be an added support (like she does for every scope, procedure, and hospitalization).

When my husband, Bobby, came home late from work and rather than sitting at the kitchen table to eat, I caught him standing at the sink with his dinner plate and back turned so he wouldn’t be eating in front of me.

Knowing I was going to have a breakfast date with Bobby at our favorite spot and keeping my eye on the prize after going so many days without eating solid food.

Using my frozen breastmilk stash the day before and day-of the procedure to ease the burden of having to use energy and my body to feed Connor.

Reading all the comments on Instagram and hearing from friends and family near and far over text message and through phone calls really helped lift my spirits and conquer this as an exclusively breastfeeding mama.

Long story short—Aside from checking with your GI and getting a prescription for SUTAB, I would recommend trying the pill prep and from a patient perspective remind you to do the following:

  • Have your GI provide you with a prescription of Zofran (if you don’t have one already).
  • Take Zofran 30 minutes prior to taking the pills.
  • Set a timer on your phone and take one pill every three minutes.
  • While the pills are large, they are no bigger than a Prenatal vitamin and are doable.
  • For my self-imposed liquid diet this is how I plan it out for a Friday morning scope:
    • Last solid meal Monday evening
    • Tuesday-Wednesday full liquids
    • Thursday-Friday am clear liquids…and don’t forget my favorite tip of all…GUMMY BEARS! They are considered clear liquids, just steer clear from the red and purple ones.

7 Tips for Keeping IBD at Bay on Big Days

Whether it’s a holiday like Halloween or a wedding weekend (both of which I experienced the past few days), it’s important to stay ahead of IBD symptoms and be proactive in how you approach the big moments and the big days in your life so you can enjoy them. The unpredictability of Crohn’s disease and ulcerative colitis can feel suffocating when you are hoping and praying your body doesn’t betray you on the big days.

Here’s how I mentally and physically prepare so I can stay ahead of my Crohn’s and be in the moment with family and friends.

Be extra cautious with what you drink and your diet. Caffeine and alcohol are triggers for me…and for many people with IBD. The day of my brother’s wedding I refrained from drinking coffee and alcohol so I didn’t have to worry about needing to run to the bathroom in my bridesmaid dress or have to think about how bloated I could get from the abdominal pain a few drinks can cause. My Crohn’s felt non-existent the entire day, thank you Jesus!

When I am traveling and away from home, I am extra mindful of what I eat and keep it on the safe side, especially if I’m going on a road trip with my family or flying the friendly skies. You know your triggers, try to steer clear from them as much as you can. If I am celebrating a holiday at home or at my parent’s house, I tend to be a little “riskier” because of the comfort level I have using the bathroom there, resting, etc.

Be choosy about your shapewear. I don’t know about you, but ever since my Crohn’s diagnosis I’ve never liked Spanx, belts, or anything restrictive around my waist. I rarely ever wear jeans with a button. For my brother’s wedding I wore Spanx that were biker shorts that went up to the bottom of my bra and it was a game changer, especially being 3 months postpartum! I didn’t have any stomach or bloating issues. Highly recommend the Spanx High-Waisted Power Short.

Pack pain medication and maintenance meds. Just because you’re away from home celebrating a holiday or a wedding, doesn’t mean it’s time to be flippant about managing your disease. When I’m packing, I always take more than I need when it comes to pain medication, even if I haven’t needed it or used it for months. Bring extra strength Tylenol and any prescription pain medication you may need along with your “typical” medication (if you take it). Be mindful of how long you are traveling and if you could face delays, etc. If you are flying, always keep medication on you, so it’s right where you need it and so you don’t chance anyone taking it out of your luggage.

With my Humira I look ahead when I have a big event and plan accordingly. For my wedding for instance, my injection was due two days after I tied the knot. My GI had me move up my dose to the day of the rehearsal dinner so I could have some extra coverage.

Try and get as much rest as possible. With IBD we all know fatigue is one of our most difficult symptoms to handle. Throw in travel and being out of your normal surroundings and life can really feel like an uphill battle. Allow for downtime and breaks throughout the day if you’re able so you can give your body time to adjust to the hustle and bustle.

Practice deep breathing and mindfulness. If you feel symptoms creeping in try and take deep breaths and ground yourself. Lay down and gently put one hand on your chest and your other hand on your belly. Feel your stomach slowly rise and be present in the moment. Close your eyes—remind yourself that pain is fleeting and go to your happy place. Diaphragmatic Breathing, also known as deep breathing or belly breathing, helps to manage stress.

Don’t suffer in silence. This is the hardest part of all. I always struggle articulating when I’m not feeling well on the “big” days. I never want to damper the mood or make people worry so I internalize my pain and put on a smile. As a mom of three little ones, especially on holidays like Halloween and Christmas I never want to allow my disease to take away from the special, memorable moments. But this can make the struggle even worse. I find quietly telling my husband or my mom that my “Crohn’s is acting up” that it takes some of the weight off my shoulders so they at least know why I may need help, may not be as talkative, or may not seem to be acting myself.

Use these times as a “teachable” moment. Before I started sharing my story publicly, you’d never hear me tell someone I barely knew I had Crohn’s disease. But now, I find it extremely helpful to drop that line whenever I can. You’ll find making others aware can bring about much needed support, understanding, and even intrigue. Telling others I have Crohn’s disease feels like a normal, casual part of conversation now for me. At my brother’s wedding my IBD came up several times in conversation—with the hair and make up people, to my cousins coming up to me and saying, “I have co-workers with Crohn’s, and I tell them all about your blog.”

While IBD is not our identity, it’s a large part of who we are and impacts many of the decisions we make each day that can influence everything from what we eat or drink at a party or social gathering to how we participate in milestones and festivities. Taking the guesswork out for others takes a bit of the pressure off and can make you feel less overwhelmed and more comfortable and at ease.

Inaugural Autoimmune Summit just what the patient ordered

This post is sponsored by the Autoimmune Association. All thoughts and opinions shared are my own.

An educated patient is an empowered patient. Over the weekend the Autoimmune Association presented its Inaugural Autoimmune Summit that aimed to do just that. The virtual two-day event featured 23 educational sessions and more than 50 autoimmune experts including physicians, nurses, policy experts, and of course, patient advocates.

The Summit covered a wide variety of important topics that impact patients and caregivers who live with autoimmune conditions. I had the opportunity to moderate a panel discussion about fertility, family planning, and pregnancy alongside Dr. Marla Dubinsky, Chief of Pediatric Gastroenterology at Mount Sinai and Co-Director of the Susan and Leonard Feinstein Inflammatory Bowel Disease Clinical Center and Mariah Leach, a mom of three who lives with Rheumatoid Arthritis and Founder of Mamas Facing Forward. As an IBD mom of three chidren myself, I’m extremely passionate about sharing guidance and support for fellow women on this subject.

During the discussion, Dr. Dubinsky touched on many aspects of the journey to motherhood and beyond with IBD, but one comment she made resonated with me. She said the greatest gift a woman can give their child, is to stay on their medication, and allow their baby to thrive in an uninflamed environment. As someone who needed and depended on my biologic with all three of my pregnancies that comforted me greatly and really struck a chord.

Other topics of discussion during the Summit included tips and tricks for managing multiple specialists to clinical trials, health equity, advocating on Capitol Hill, and complementary medicine.

A dream come true

Lilly Stairs, Vice Chair of the Board of the Autoimmune Association and Summit Lead, lives with Crohn’s disease and arthritis. As a patient advocate, she understands the vital importance of providing those who live with chronic health conditions to share their voice and articulate their needs and struggles.

“It has been a dream of mine and the Autoimmune Association’s to plan an event that unites community members from across autoimmune conditions. Our patient odysseys share deeply rooted similarities. By coming together, we can accelerate autoimmune education, awareness, advocacy, treatment, and someday, cures.”

Goals of the Summit

The goals for the Summit were three-fold. Organizers and presenters like myself hope you walked away feeling connected to people across the patient community, while learning tangible tips for managing your autoimmune conditions. Lastly, the hope is that attendees and Summit participants feel energized and excited about what the bright future holds for those living with autoimmune diseases.

Lilly went on to say, “Events like the Autoimmune Summit are essential engagements for patients and caregivers to participate in. These events provide tools to navigate life with chronic illness and empower patients with the knowledge they need to be “CEO, secretary, and treasurer of your care” as Hetlena Johnson, Lupus Patient Advocate so eloquently stated in the Managing Multiple Autoimmune Conditions panel.”

Events like this are a reminder that we are not alone in our journeys. Even though chronic illness can be extremely isolating, events like the Autoimmune Summit offer the opportunity for connection that often feels like much needed chicken soup for the soul. The camaraderie that is possible even though Zoom has a lasting impact on helping to lift the burden and self-doubt many patients face.

From the Speakers

Tina Aswani Omprakesh participated in a panel on complementary medicine and autoimmunity. As an ostomate who juggles Crohn’s disease, Gastroparesis, and IBS, she knows firsthand how imperative it is to take on illness with multiple approaches.

“This is an important subject that’s often not discussed in the autoimmune space. The reality is that many patients are thinking about exploring it but don’t know how to navigate it in a way that can help complement their existing therapies. These conversations are essential to proliferate both credible information and sources of complementary therapies so patients can truly live their best lives possible.”

Molly Schreiber lives with Type 1 Diabetes, Rheumatoid Arthritis, and POTS. During the Summit, she spoke about what it’s like to manage multiple autoimmune conditions.

“Anytime I can share my story, my hope is that attendees feel less alone in their battle with chronic illness. We may have different health conditions, but our fight is often the same—pain management, medical providers who listen, and affordable medications we can easily obtain.”

Alisha Bridges is a patient advocate who lives with Psoriasis. She participated in a breakout session geared towards dermatology. She says having the chance to speak at the Autoimmune Summit was an honor.

“I hope my story helped viewers to better understand the unique challenges of living with psoriasis as a woman of color especially in the clinical trials sphere. These conversations are imperative to elicit change for better care of patients of all backgrounds.”

Curtain Call

It’s our hope attendees discovered tips for managing autoimmune disease from patient advocates like myself who understand your reality, while also learning about the latest research and future treatments on the horizon.

Did you miss tuning into the first-ever Autoimmune Summit? No worries! All the presentations were recorded and will be shared in the weeks ahead. I’ll be sure to share the Fertility, Family Planning, and Pregnancy discussion I was a part of on my social media channels as soon as the video becomes available.

Thank you to all who tuned in, to all who participated, to the organizers, like Lilly, and the generous sponsors who made this happen. It’s amazing to see what’s possible when patients have a proverbial seat at the table alongside medical professionals and digital health companies. Our voices matter and time and time again we’re being heard loud and clear.

Follow the Autoimmune Association on social media

Instagram: @autoimmune_diseases

Twitter: @AutoimmuneAssoc

Facebook: Autoimmune Association

IBD Motherhood Unplugged: Scopes, Scans, and Breastfeeding

The date for my next scheduled colonoscopy is on my calendar. Even though my scope is one month away, I’ve already started the mental prep of what’s to come. When you’ve had too many colonoscopies to count you know what to expect…which is both a blessing and a curse. This time around I’m exclusively breastfeeding my 3-month-old son. So, like any IBD mom may wonder, how does that correlate when you’re taking prep that cleans out your system and are put out for the procedure?

I checked in with Dr. Aline Charabaty, Assistant Clinical Director of the Division of Gastroenterology at Johns Hopkins School of Medicine, and Clinical Director of the Inflammatory Bowel Disease Center at Johns Hopkins-Sibley Memorial Hospital, as well as my own gastroenterologist (GI) so I knew what to expect and so I could pass along the information to you.

Juggling Kids and Prep

I’m already anticipating the hustle and bustle that I’ll be dealing with as I guzzle down the disgusting concoctions with my 4-year-old and 2-year-old running around as I care for our newest addition. Luckily, my mom flies in for every single colonoscopy (even before I had kids!) to offer emotional and physical support. Now, she gives me a hand with my kids, and this allows my husband, Bobby, to take me to the procedure and celebrate with me after it’s over. Highly recommend you line up childcare when prepping for a colonoscopy so you can focus on yourself and not deal with the stress of mom life on top of it.

Snuggling with my son, Reid, while I did my prep in 2019.

Dr. Charabaty understands what a challenge this can be and has fantastic advice for IBD moms on prep and procedure days:

  • Tell yourself you are doing the right thing taking care of your health, to stay well for you and for your kids.
  • Explain to the kids why mommy is a bit tired today, why she is not sharing their food and why she is going to the bathroom a lot.
  • Enlist help!! Have someone you trust, and who the kids know well, to keep them company and look after them while you are prepping the day before and on the day of the procedure. You need a responsible adult who is fully awake and alert to be with the kids and keep them safe during these days.
  • If your child is old enough to understand, have them play an active and fun role in this prep, for example reminding you to drink fluid during the day from a special cup they chose for you.
  • Hug your children often in between trips to the bathroom, to keep you going.
  • Give yourself plenty of rest after the procedure so you can be fully present to your children the next day.
  • Skip co-sleeping the first night after the procedure, as you might not wake up as usual in the night.

In the days leading up to my scope, I put myself on a self-imposed liquid diet 3-4 days ahead of time to ease the prep. It’s hard enough when I’m not trying to nourish a little person, along with myself. Anyone who has breastfed a child knows how hungry it can make you. My GI told me that despite only having liquids I would not need to supplement with formula. At the same time, she suggested I drink Ensure Clear Protein, which will not affect the prep and will help it. To combat dehydration, she reminded me to drink plenty of water up until two hours before the procedure.

“Breastfeeding women lose an average of 25 ounces of fluid a day through their milk. During the colonoscopy prep, make sure you drink plenty of fluid to keep the prep going and the milk flowing! Consider breastfeeding or pumping just before leaving for the procedure and as soon as you are recover and are awake after the procedure, to minimize discomfort of full breasts and minimize disruption in the usual breastfeeding/pumping schedule and optimize the volume of milk recovered,” explained Dr. Charabaty.

If nursing gets to be too much while I’m in the thick of my prep, I plan to tap into my freezer supply of milk so that my mom or husband can feed the baby while I’m holed up in the bathroom. By being proactive and thinking of these moments ahead of time, it’s one less thing to worry about and stress over.

Is Pump and Dumping Necessary?

Since we all know what colonoscopy prep makes us do, my initial thought was that I would need to pump and dump so my son wasn’t pooping up a storm along with me. I envisioned myself on the toilet with my pump nearby…talk about a living hell! Luckily, my GI said there’s no need to pump and dump with the prep or with the procedure since my care team uses Propofol and Dr. Charabaty agrees.

“Preps like Miralax, Golytely, Moviprep, Fleet phosphosoda, and Dulcolax, are not absorbed from the gut and do not enter the breastmilk; so, no need to pump and dump with preps, save every drop of this precious liquid! There are older recommendations to pump and dump the milk 4 hours after receiving anesthesia; however, review of the data show that most drugs used for anesthesia (midazolam, fentanyl, propofol, ketamine) do not cross into the breastmilk or if they do, the concentration for the drug in the breast milk is too low to affect the baby.”

Click here to lead the latest recommendations from the Association of Anesthetists that supports this guidance.

What about prep for MRE’s and CT scans?

“Radiological contrast agents used in CT and MRI are safe during breastfeeding, but be cautious with Technetium containing contrast that is used for nuclear medicine procedures. Some recommend pumping and dumping for 12 hours; other recommend pumping for 72 hours. Store the milk and only give it to the baby after it has been stored for 72 hours.”

The bottom line

“You can continue to breastfeed baby as usual following the colonoscopy (or endoscopy), as soon as you have recovered from anesthesia, and you are awake enough to hold the baby! Talk to the anesthesiologist before and after the procedure for advice, in case different or unusual medications were needed during the procedure. If you feel tired or sleepy, let someone else handle the feeding. Kudos for taking care of both your GI health and baby’s health!”

As an IBD mom having this intel is extremely comforting and puts my mind and heart at ease as I prepare for another colonoscopy, this time with another little one in tow.