My name's Sarah and I have been living with ulcerative colitis since 2006, after years of medications, medication changes, medications failing, I was rushed for emergency surgery in 2019 to have a subtotal colectomy and have my stoma formed. This was life changing and I can now say my life has improved so much. I love living life with a stoma, as I can actually live now, rather than just existing in pain every day.
Moving forward with my stoma, once recovery had settled, it was finally time that I felt ready to start trying for a family. I am in a same-sex relationship and married my wife in 2018, she has always been my rock and support since 2008, so has gone through the journey with me, from Ulcerative Colitis (UC) to stoma.
As a same-sex couple and an ostomate, our fertility journey had to follow a different path. We began with a visit to the GP, this is where I was referred to the fertility clinic. At the clinic I underwent numerous tests, one being a HyCoSy (Hysterosalpingo-Contrast Sonography) test to see if my fallopian tubes were open and to examine my uterus. It was here they found that my tubes were blocked due to scar tissue, effectively classing me as infertile. Following this, we went through lots more tests, but I was granted a round of IVF under the NHS, which on one hand we were so grateful for as IVF is hugely costly, but on the other hand, for me I felt sad, that it seemed like my body had failed again. I don’t know if anyone else with UC, Crohn’s or a stoma feels like this?
It’s something I can sometimes battle with, the why does it have to be my body that has failed and gone through all of this.
My wife carried our embryo
Moving past this, in 2020 I underwent egg retrieval, and I had a fresh embryo cycle, unfortunately, implantation failed, and I had a negative pregnancy test. Nobody really tells you the negative stories of IVF, so I felt super deflated and sad.
I underwent a second round of IVF, using the embryos we had frozen from the first egg retrieval, but again implantation failed, and I had a negative pregnancy test. This really affected me mentally and I felt that my body had failed, we then decided that my wife should have a go. To do this, we did something called shared motherhood, but this time we had to pay for the treatment as my wife was now having the treatment too.
For our third round, I had egg retrieval again and my wife then had my embryo implanted into her, we waited two weeks, and my wife tested positive, we were so elated and happy, but just a few days later my wife suffered a chemical pregnancy, which is an early miscarriage before 5 weeks. We were devastated.
This led us onto our 4th round of IVF, and it was 2022 now, my wife again had my embryos implanted, 2 this time. And she fell pregnant, we were so anxious, scared and worried that the same would happen as before. But the pregnancy stuck, and we got to 7 weeks, but my wife had a huge bleed, and we thought it was all over. We went for an early scan, where they could see two sacs, but only one had a heartbeat. ONE HAD A HEARTBEAT, we were soooo happy to hear those words, we had a little miracle growing inside of my wife.
The sonographer explained that my wife was pregnant with twins, but the bleed was us losing the other, but as they were in separate sacs it did not affect the other. We were over the moon, but equally anxious.
Our miracle baby: premature birth and NICU
We got to the 20-week scan, all looked okay, we got to around 24 weeks and this is when my wife started feeling unwell, she had headaches, swelling and just wasn’t herself. I took her to the doctors and the midwife, and a few weeks later at 26 weeks + 5 days, I get the call to work from my wife ‘don’t panic but I am in the delivery suite!’ WHAT?
I don’t think I have ever driven so fast in my life; my wife was hooked up to all different machines and at 27+2 weeks, our daughter Eden was born weighing 1 pound and 15 ounces. She was in the neonatal intensive care unit (NICU) for 13 weeks and came home on oxygen for another 3 months, she is a true miracle! We focussed all of our time onto our baby girl, and I suffered from PTSD from the trauma of the NICU so spent time ensuring I was okay too.
Ulcerative Colitis and IVF challenges
In 2025, we felt ready to try again for another baby, but my wife did not want to carry after everything that had happened before. In May 2025, I underwent my 3rd round of IVF, using the frozen embryos we had in storage. It was another implantation failure. This was the third time now, so I spoke to my consultant and said I wanted further testing now before another round.
In between all of my rounds of IVF I had been doing my own research, and there was a lot of research out there that suggested people with Ulcerative Colitis and auto immune diseases could have other issues that may affect IVF. These further tests showed this, it showed that I had a clotting issue, so was put on medication to help this. My absorption was low too, so the treatment plan was amended from tablets to a dual treatment of patches and injections.
These were all the tests my current clinic could offer, so with this new treatment plan and being treated for things I didn’t know I had before. In 2026, I went into my 4th round of IVF, this time, a positive test, not just one test, 20,30,40 positive tests, pregnant 1–2 weeks, pregnant. I was so so so happy, over the moon happy, but a week later, I suffered a chemical pregnancy (an early miscarriage), I was devastated. Devastated doesn’t actually describe it.
Specialist fertility care for Ulcerative Colitis
And that brings us to today, I am doing more research around ulcerative colitis and fertility, I have found specialists in London to help, they look at where there may be immune, inflammatory, or implantation issues.
I think unless you know, you don’t know where to start and fertility is one of the most emotional subjects for many people. I have been trying now since 2020, that is 6 years, and although we have the most wonderful daughter, I have always dreamed of carrying a child and would hope that one day it may be possible. But with the complexity of UC, the inflammation it causes, the immune response in our bodies being different, sometimes you have to seek further help from specialists to get you to that successful pregnancy.
If there is one thing this journey has taught me, it’s that our bodies may face challenges, but they are also capable of incredible things.
Ulcerative colitis, surgery, IVF, NICU, none of these were part of the life I imagined. But they have all shaped the person I am today.
I share my story in the hope that someone else reading this who feels lost, broken, or alone in their fertility journey might realise they are not the only one. The road might be long and complicated, but hope is still there and sometimes miracles come in ways we never expected.
If you have experienced baby or pregnancy loss, or fertility issues, there are local charities that can offer support through these difficult times:
Article by Sarah Smith
About the author
I was diagnosed with ulcerative colitis at the age of 16 and underwent emergency surgery in April 2019 which left me with an ileostomy. I love my life with a stoma and my aim is to spread positivity and awareness about IBD/stomas by giving realistic points of view from my journey so far. You can follow me on Instagram.