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: Exploring Natural Procreative Technology

Chronic illness can feel all-consuming, especially while you’re trying to balance work and your personal life. According to 32-year-old Allison Wade of Texas, living with ulcerative colitis since 2008 prepared her for the struggle of infertility after living through a four-year flare. Yes, you read that right. Allison was hopeful her and her husband, Nick, could begin their journey to growing their family. Unfortunately, just as she felt the relief of getting her IBD under control, she found out she would be dealing with another condition where there is not a “one size fits all solution.”

This edition of IBD Motherhood Unplugged looks at juggling the mental and emotional struggle of coping with and mourning your body failing you not only with ulcerative colitis, but also infertility, while also being your own advocate for your care plan. As Allison says the question of “WHY” she’s unable to achieve something that women have been doing forever, haunts her.

Allison is a healthcare worker. Her world came crashing down during the pandemic when she found out bringing a baby into this world would be more complicated than she ever thought.

“When I received news that I was in remission after the four-year flare, I was told we needed to get pregnant right away to capitalize on my IBD finally being under control. I underwent an HSG procedure to make sure that I didn’t have any adhesions or blockages in my fallopian tubes due to the chronic inflammation in my colon. We were told everything was normal,” explains Allison. “I also had blood work completed to ensure that I was truly ovulating and that was also normal. We tried for a year and were not successful.”

Allison and her husband met with a fertility specialist in April 2020. The nearest fertility specialist was two hours away, so they set up a telemedicine visit. During the initial consultation they were told it sounded like they were dealing with unexplained infertility.

“My cycles were like clockwork, I was getting positive ovulation tests, my hormone levels after ovulation suggested that I was truly ovulating, there was no reason as to why I had never seen two lines on a pregnancy test.”

The fertility game plan

Allison and Nick set up a game plan with their fertility team that involved three rounds of Intrauterine Insemination (IUI) plus Clomid. If she was not pregnant after that, the next step was IVF. Allison says she felt overwhelmed but was confident that they were going to be pregnant after the first month. Looking back, she says she was naïve to think that way.

“Emotionally, each month is a roller coaster that comes and goes quickly. Each month that passes you feel the gravity of emotions that come with each negative pregnancy test. Financially, it has been difficult because insurance does not cover my fertility treatments and rarely covers my medications. Let me just tell you that every ultrasound and every blood draw adds up. I have to remind myself regularly of how it will all be worthwhile in the end.”

Keeping stress in check

As anyone with IBD knows, managing stress is imperative for helping to keep symptoms at bay. Along with the worry about getting pregnant, Allison has the fear of flaring with her ulcerative colitis.

She explains, “The biggest area of stress has been managing all the appointments and arranging my work schedule on the days I have to unexpectedly drive to Houston for a 15-minute ultrasound. I am very lucky that my job has been understanding through this time.”

Not to mention she also has to take time away from work to receive her Remicade infusion.

“I would advise other IBD women to find ways to manage all the stress and emotions that come along with infertility and chronic illness. I highly recommend seeking counseling services. It is nice to have someone to talk to who is not emotionally involved in the outcome. It is a difficult time for all women, however when you also have IBD, I feel like you are now adding all these supplements, medications, and appointments to your existing list of treatments for your IBD. Find a way to organize everything so that you’re able to manage everything without getting too overwhelmed.”

Utilizing Natural Procreative Technology instead of IVF 

After two failed IUIs, Allison knew IVF was on the horizon. She didn’t feel as though all her concerns were being addressed or that her needs fit into the typical cookie cutter approach.

“I felt like we were being rushed to IVF without any real answers as to why my body was unable to conceive. My husband and I were not emotionally or financially prepared to begin the process of IVF, so we decided to get a second opinion and look at other options.”

This is where Natural Procreative Technology or NaPro comes into play. Allison liked that NaPro doctors look to diagnose the root cause of what is causing your infertility, in hopes that you can conceive naturally without the use of IUI or IVF. The success rates are comparable and often exceed those of IVF, without the increased risk of multiple pregnancies or birth defects.

The Creighton Model of FertilityCare System™(CrMS) is the method of observing and charting important biomarkers in the female cycle. The charting and observational work is the basis of evaluation and treatment in NaPro Technology. Allison has been charting her cycles for the last six months. 

“When I went to my first NaPro appointment, the doctor spent an hour talking to me in the office and my husband on Facetime. She answered every question and explained that she would be as aggressive as we wanted her to be,” says Allison. “She wanted me to chart my cycles and to get extensive blood work completed after ovulation to look at my hormone levels. She also spoke to me about diet, stress, activity levels, and she started me on several supplements. When I left that appointment, I was so happy because I felt like she was treating me holistically and was going to find the cause of my infertility.”

Keeping her eyes focused on the future

Allison is going to have exploratory surgery next month to look for scar tissue or adhesions that may be the result of chronic inflammation from her IBD, which could be contributing to her struggle to get pregnant. She is due for her Remicade the same week as her surgery, so she must push her infusion back until her incisions are healed. As a woman with IBD, going through infertility, this is the reality that is often not discussed or thought about.

“While I try to remain as optimistic as possible about creating a baby that is genetically ours and that I can carry, our hearts would definitely be open to both surrogacy and adoption. My dream has always been to be a mother and I will do everything that is possible to achieve that dream.”

Connect with Allison on Instagram: @al_avawade

Navigating IBD and IVF During a Pandemic WITH A Toddler

When I asked 34-year-old Amanda Osowski how she’s juggling Crohn’s disease, motherhood, and IVF during the pandemic, she said “with caution.” And rightfully so! These times are complicated and overwhelming for everyone. Add some chronic illnesses and trying to maintain your health, sanity, and emotions while doing all that and trying to get pregnant with a second child through IVF, and I’m amazed she found the time and energy to write this guest post! I’ll let her take it away.

Here we are, more than 7 months into a global pandemic, still wondering if and when life may “resume as normal”. To be honest, in my house, life has in some ways paused and in other ways accelerated since the March quarantines began. As an IBD patient on Remicade (an immunosuppressant medication to manage my Crohn’s disease), I have chosen from the beginning to adhere strictly to social distancing, mask wearing, unnecessary exposure and other risk reducing options. 

This also meant that my job, my income, and my ability to support others has transitioned from mainly in-person to entirely virtual. The silver lining of this is that I’m able to work with clients all over the world. Balancing that alongside parenthood, and IBD during a pandemic requires a good bit of patience, strategic thinking, and deliberate planning.  

Gearing up for Baby #2 Through IVF 

My husband and I were diagnosed with Unexplained Infertility in 2017 while trying to conceive our first child. After several failed treatments, we had one successful round of IVF in which I became pregnant with our daughter in the fall of 2018. As soon as she was born, we knew we wanted to have another baby close in age – both for our family planning goals and in hopes that I would be able to maintain my Crohn’s remission status long enough to complete another pregnancy. 

While we began trying naturally as soon as we were ready, we knew that the recommendation for fertility treatment was to wait until 12 months passed after delivering our daughter. I desperately hoped that we’d get lucky before then, and that we’d end up with natural conception, rather than going through the physical, emotional, and financial journey of another cycle of IVF. I also knew that I wanted another baby, and that would happen however it was meant to. 

How the pandemic has impacted fertility treatments

We were scheduled to begin fertility testing in March 2020, with treatment starting in April. As I’m sure you guessed, that was immediately halted with the closing of most fertility offices and the pausing of all new treatment cycles with the influx of COVID-19 cases and concerns. Having my treatment (and my timeline) be paused indefinitely with the continuing anxiety and stress of the pandemic caused my IBD symptoms to increase – something that then caused me more anxiety and stress about its impact on my IVF plan if and when I was able to reschedule treatment. 

After an exceptionally long few months, my doctor’s office re-connected with me about getting my appointments scheduled. My IBD while not flaring, was not perfectly calm either, and that’s such an important part to me about preparing for pregnancy, so we gave it a little more time. FINALLY, this month (September), I began the treatment protocol I should’ve started five months earlier. Our daughter Brooklyn just turned 16 months old.

Today you’ll find me managing IVF medication injections around business calls, my Remicade infusion schedule, chasing a toddler and being stuck inside my home around the clock. It’s HARD, and exhausting, but it’s the only way I know how to make my hopes come true. 

Tips for handling IBD + IVF

  1. Communication with your partner is critical. From parenting responsibilities to COVID-19 precautions to childcare to work stressors to fertility treatment planning and execution – there is an entire machine full of decisions and emotions that are part of every single day, and not being on the same page as your partner can have devastating effects. My recommendation: schedule time once a week on your calendar after bedtime to talk. Keep a list running during the week of things to add to the conversation. Ask all your questions to each other then, when you can focus and talk and connect. You’re a team, and it’s important in this season to work together. 
  1. Mental health is just as important as physical health. When managing IBD + ANYTHING, let alone motherhood, and a pandemic, and fertility treatment, taking time to check in with your mental health and care for yourself is imperative. Each of these things come with so many feelings, and burying them all will only make it harder to deal (& keep your IBD in check!) I personally recommend working with a counselor, taking time to journal or meditate or center yourself, and ensure you’re checking in with your own needs regularly. 
  1. Social Media Strategy – During the pandemic, I think we’ve all admitted to more screen time than usual. I know firsthand that the amount of pregnancy announcements, gender reveals, new baby births & seeing families with multiple kiddos can cause feelings of guilt, frustration, jealousy, anger, etc. Social media can make things feel extra difficult for those struggling to get pregnant, undergoing fertility treatments AND managing something like IBD. Here’s what I recommend. The beauty of social media is that we can choose what we do and don’t see while we scroll. This is a perfect time to click “hide” or “unfollow” on any hashtags or accounts that make you feel sad or icky. That’s not to say you don’t love your neighbor/friend/co-worker, but in my opinion you also don’t have to constantly watch their highlight reel. On the flipside, utilize social media to connect with your TRIBE. Whether that’s other IBD and IVF warriors, others struggling with infertility, etc – there’s so much more space for online communities now than there ever has been before. If you’re having difficulty finding and connecting with others, please DM me and I’m happy to make some suggestions! Also, please know that whatever you’re feeling during this experience and this season is so valid, and you’re not alone!  
  1. Give yourself grace. There will be days when you feel inadequate – as a parent, as a spouse, as a patient – these moments don’t define you. You’re juggling so much, it’s so important to know that you’re doing the best you can, even if that looks different than it used to or different than you’d like it to. 

If my story resonated with you, or you’d like to connect, please reach out! You can find me on Instagram personally as @amanda.osowski and professionally as @heartfeltbeginnings.  

From IVF to surrogacy: This IBD mom’s resilient journey

IBD and surrogacy. Those are loaded words. Both evoke emotions and opinions for unique reasons. For Jessie Magaro, 34 of Atlanta, the decision came after the unfathomable struggles she had with her Crohn’s during pregnancy and after. To provide you with the backstory, Jessie was diagnosed with Crohn’s and endometriosis when she was 15. She underwent an elective surgery her senior year of high school for her Crohn’s that put her into surgical remission for 15 years. IMG_7818

Jessie got married in 2016. While she was loving every second of newlywed life, she started feeling endometriosis pains. Less than a year after tying the knot, her doctor discovered her fallopian tubes were blocked. It was unclear if the blockage was due solely to endometriosis, or if it was a result of scar tissue from her bowel resection. Either way, IVF seemed to be the only option to get pregnant, and her fallopian tubes would need to be removed for that to be successful. In November 2017, Jessie underwent the surgery. When she woke up, she thought she would be stripped of the ability to conceive a baby naturally. But, her surgeon told her they were able to save and repair one of her tubes.

Jessie ended up getting pregnant right away, but unfortunately had an ectopic pregnancy that ended up severely rupturing her fallopian tube. During emergency surgery to remove the remaining tube, it was determined her endometriosis was severe and IVF needed to happen sooner than later. I had the chance to interview Jessie about her harrowing experience to bring a baby into this world, while living with IBD and endometriosis. IMG_7820

NH: How did IVF impact your IBD?

JM: “The moment we started IVF, I felt a shift in my body. A storm was brewing, and I could feel it. My completely dormant Crohn’s appeared to be waking up, but I didn’t want to believe it. I battled through the IVF process while experiencing my first flare in a decade in a half. The Reproductive Endocrinologist and GI were miffed. No one could say if this was an isolated reaction to the hormones, or if I was truly experiencing an active flare. After a lot of back and forth, and hard conversations with medical professionals and our families, we decided to proceed with implanting an embryo. The thought process was that most women tend to do better in pregnancy with Crohn’s, if they had been in remission prior. The hope was that this “flare” was an isolated incident from the IVF drugs/hormones, and that everything would calm down once I was pregnant. It was a risk, but one we decided we were willing to take. After a short round of prednisone, the flare subsided, and we proceeded with the transfer.”

NH: You now have a beautiful, healthy 13-month-old daughter to show for it. What was your pregnancy like?

JM: “My pregnancy was a terrifying whirlwind of trying to manage an awful flare while keeping the baby safe. IMG_7821I developed a new manifestation of the disease I never had before: Perianal Crohn’s. Not a pleasant situation and one that is very difficult to treat/manage while pregnant. Things got so bad at one point, I had to have surgery to drain an abscess and place a seton to help a fistula heal. No one wants to have surgery pregnant. It was one of the scariest moments of my life. The first trimester was spent hoping and praying the baby would make it with all the turmoil going on in my abdomen. The second trimester was spent hoping and praying we could keep her in there long enough to be viable outside of the womb. The third trimester was spent in an unbearable amount of pain fighting the urge to take the prescribed pain pills and being so scared about how the increased biologics, steroids and other new drugs being introduced into my system might affect her.”

NH: You must have been going through so many emotional struggles at this time, on top of all the physical.

JM: “The level of anguish and guilt I felt was unimaginable. I already felt like I was failing at my motherly duty to protect her and keep her safe. By 32 weeks it was clear I was rapidly deteriorating, and we had exhausted all treatment possibilities deemed “safe” while pregnant. I desperately needed more aggressive treatment, and that couldn’t happen until she was out. IMG_7823With the newly manifested, aggressive, perianal disease, a vaginal birth was out of the question. I held on until 36 weeks and on New Year’s Eve of 2018 we welcomed our baby girl. We were so incredibly relieved she was ok, and the focus quickly shifted to how not ok mom was.”

NH: As a fellow IBD mom, we all know how challenging the postpartum time is, along with chronic illness. How did you navigate that?

JM: “The first five months of her life were spent in and out of the hospital non-stop. At one point we were traveling down to the Mayo Clinic in Jacksonville for weeks at a time (without her) for testing and treatment. Leaving her the first few months was by far the hardest, most gut-wrenching thing I’ve ever experienced. I would sit in the hotel bathtub staring at the IV in my arm sobbing. The physical and emotional pain was unbearable. I remember agonizing over the decision to start the new meds, or continue breastfeeding her, and the doctor saying to me “you NEED these meds, Jessie. You HAVE to get better. She needs you to get better more than she needs you to breastfeed her right now …” cue the waterfall of tears again.”

NH: You started to turn the corner when your daughter was six months old. Tell us about that.

JM: “The pain had begun to subside enough for me to take care of her without help, I could finally leave the house and I was starting to feel a little more like myself again. I was, and still am a year later, in an active flare, but we’re making progress. IMG_7824After talking  to many medical professionals, we decided it was not safe for me to carry another child. We still don’t know if it was the IVF drugs/hormones that caused the flare going into pregnancy, or if hormones in general and my Crohn’s disease just don’t mix, but we’re not willing to put myself, or another baby at risk like that again.”

NH: I can only imagine what a difficult and complicated decision this has been for you and your husband.

JM: “This was not a decision that was made easily or lightly. As we go through the motions of finding a surrogate to carry baby number two, my days are filled with a roller coaster of emotions. We know we want another child, but at what price? I can’t take care of my family if I am unwell. If carrying another child myself leads me to be unwell again … is it worth it? Or, do I trust someone else, a safer vessel, to carry a precious sibling for our daughter. We’ve chosen to pursue a safer vessel. I am so unbelievably grateful that surrogacy is an option for us and will allow us to continue growing our family while keeping me safe.”

This story is not meant to scare anyone with IBD who is looking to start a family. Make sure you are in complete, clinical remission before you conceive, and know it is completely possible to have a happy, healthy pregnancy with IBD.