My name is Sarah Vasilakos. I’m a 34-year-old adventure enthusiast, pediatric nurse, and currently 27 weeks pregnant with my first child, all while living life with an ostomy. I wanted to share my experience as someone who has grown up with a chronic illness and is now in the exciting season of welcoming my first child in a few short months.
I was born with a rare chronic gastrointestinal disorder called chronic intestinal pseudo-obstruction that has resulted in me having an ileostomy since I was 3 weeks old, that was made permanent when I had a colectomy at age 9. Basically, I have flare-like episodes where my stomach and intestines do not work, as if there is an obstruction, but on imaging there is none to be found. Throughout the years I have been on tube feedings and parental TPN nutrition through a central line. These days I am healthy and thriving, able to support my own nutrition, and work full time.
I met my long-term boyfriend in 2021 while on vacation through mutual friends, and we have been inseparable since. We have been busy focusing on our careers and traveling, with plans to get married and start a family in the next few years, when I found out in early 2025 my fertility was declining fast. Since having children was a huge dream for both of us, we decided to change up our life plan order and start trying to conceive as soon as possible.
I was given the medical clearance from my GI, since my last surgery was back in 2010, I was off all medications, and my flare ups were few and very manageable at home over the last decade. Growing up I had gotten little guidance as to what having children for me would look like, but since it was just my colon I didn’t have anymore, I was just told it would be ok for me to have children in the future and to discuss it with my GI when the time came.
We actually thought our problem would be conceiving since I had found out my AMH level (ovarian egg reserve) was extremely low for my age and I was advised to jump to IVF in the next year. We had even started the process of all the IVF pre-lab and procedures at our fertility clinic to be ready to go in spring 2026. To both of our surprises, we conceived naturally after almost a year of trying and found out we were expecting a little boy right before Christmas 2025.
Since I already had my IVF consultation appointment at the fertility clinic they were nice enough to monitor me earlier with blood work and ultrasounds until I graduated from their clinic at 8 weeks and 4 days pregnant. My OB then took over, and eventually set me up with a maternal fetal medicine specialist(MFM) that I first saw for my 20-week anatomy scan. I ended up seeing my OB only as often as anyone with a low-risk pregnancy would. Once during first trimester and then every 4 weeks in 2nd trimester. My MFM specialist also started seeing me every 3-4 weeks in 2nd trimester, but they were the only ones to do the scans, not my OB. I’ll be seeing a lot more of both specialists, about every 1-2 weeks, in my 3rd trimester.
The majority of the first half of my pregnancy was uneventful. I found out I was pregnant before my missed period because I was actually feeling on top of the world energy and mood wise during my typical PMS week, and decided to take a test after a hike one day just to see. My body has always been known for having opposite of the typical symptoms for almost everything in life health wise I’ve come to learn. I got very lucky with my worst symptom of 1st trimester just being horrible fatigue. It felt like I hit a wall daily come the afternoon and I took a nap whenever I could on my days off. I also noticed my anxiety and insomnia got worse, but, I did not get any morning sickness and for that I am thankful for.
The 1st part of 2nd trimester was also pretty smooth, and I saw my energy return for about a month. Around week 14, I noticed I was dealing with more bloating, and then week 18 brought slower digestion and for the first time in this entire pregnancy I actually threw up, due to feeling so bloated. By week 20 heartburn had hit me like a truck, I was suddenly having to change my daily eating habits between that and the bloating. At this point, I also contacted my GI and OB to ask for their advice. I was told to start some over the counter gas and anti-acids and eat smaller and more frequent meals.
This seemed to work until I hit 23 weeks, where after a few weeks of trying to force even smaller meals more frequently along with the medications recommended just wasn’t cutting it anymore. I felt myself getting weaker and more dehydrated by the day. Along with noticing more gas and partial obstruction pain, as my output had lowered and thickened as well. After one particularly bad day of pain and dehydration I decided it was time to go to the emergency room to get fluids and make sure baby was at least ok. Thankfully, he was thriving when they hooked him up to the monitor, and I was just dehydrated.
I wasn’t really given a clear solution going forward to help other than a new anti-acid prescription and advice just to try to stick to a more liquid diet with nutritional and electrolyte replacement drinks and get calories in when I could. Seems like as long as baby is doing good, they want my outpatient GI doctor to make most of the decisions. So, we take it one day at a time and keep hydrating as much as possible. I also made the decision after these tough few weeks to back off hours at work so I could focus more on my baby and taking care of myself.
My ostomy throughout all of this so far has stayed about the same. Since this is my 1st pregnancy, I did not notice a bump until closer to being 16 weeks pregnant, and my stoma size has just started to widen slightly. I haven’t had to change the type of appliance system I use yet, still the same 2-piece system I’ve always relied on. If anything, I have just begun to cut the stoma size hole, since I use self-cut wafers, a bit larger. I do have a wonderful ostomy nurse I can reach out to at any point in my pregnancy if I need to start experimenting with different ostomy supplies.
If there was one thing I wish I knew before I got pregnant with an ostomy, it would be to have asked more specific questions sooner to my team of doctors about family planning. While there is no indication that my medical condition or past surgeries is the reason for my low ovarian reserve for my age, or why it took almost a year of us trying to get pregnant, I wish I would have gotten my fertility tested in my 20s so more options would have potentially been opened to me, as we would ideally like to have more children one day.
I am very lucky to be so in tuned with my body and my vast nursing knowledge that I made a huge effort last summer to prepare my body for getting pregnant and also seek out my own fertility answers in my 30s. I did this by making sure I was already taking a prenatal vitamin, started working out again a few times a week along with various other activities I enjoy (kayaking, horseback riding, figure skating, hiking) and focusing on nutrition and sleep. I really believe all of that played a huge role in me getting pregnant and sustaining this pregnancy so well with an ostomy.
I hope my story of being pregnant with an ostomy can offer someone hope that pregnancy with an ostomy is very possible. There may be some challenges to be made aware of that comes with any pregnancy with a chronic illness, especially the unique obstacles faced with an ostomy, but for me, it’s been very worth it. I would not be able to confidently go through this journey without my great team of multiple doctors I trust, and all the loving support and help from my boyfriend, both our parents and friends. We can’t wait to meet our little one in July!
