So as well as sharing my pregnancy journey for this series, I put a shout out on my social media accounts to see if there were any parents who would be willing to share their journeys. I thought having a variety of different stories focusing on different aspects of pregnancy and parenthood with chronic illnesses would make the series more beneficial for you lovely readers!
Today, I share Rebecca’s story. I am so grateful to Rebecca, and to all the other lovely ladies who have chosen to share their stories with me and hope you enjoy a read.
Hi, I’m Rebecca. I’m 36 years old and live in Brisbane Australia. I’ve been married for 10 years now, together for 14 years. I have one 8 year old son. I work full time as a radiation therapist in one of the big hospitals in our city.
My Crohn’s/mum journey is a story of hindsight. I’d always had IBD ever since I was a kid, or at least what we thought was just IBS. I’d always had temperamental guts but my mum has IBS and I just put it down to that. In February 2010 I got pregnant one month after coming off the pill. My husband often jokes he just has to walk past me and I get pregnant! So far so good. About 6 weeks in I started to have bleeding and I rushed myself into emergency, thinking the worst. I had an ultrasound and they told me that my baby was fine but I had some small haematomas on the outside of my placenta and more than likely one of them had burst. No big deal, just take it easy and it should resolve on its own. I went home and carried on being pregnant. Sure enough nausea showed up and brought it’s mates exhaustion and food/ smell aversions. So far so normal. Here’s the first bit of hindsight. Along with all the normal pregnancy stuff was also stuff I now know was not normal. Most pregnant women start to complain of constipation. I was running go the bathroom. But I just thought “huh this is new. Must be what happens when you are pregnant. Carry on!”. So I did.
It was a horrible pregnancy. But all seemed to calm down (with the exception of the constant running bowels). I had my normal 12 week nuchal scan. All normal. Then had a routine check up with my doctor around 17 weeks and she says she’ll do a quick ultrasound just for fun. So she starts scanning….and scanning…and silence and scanning. Then the words no expectant parent wants to hear “i can’t find a heartbeat”. I was devastated. I had lost my baby. There was no reason why, no indication anything was wrong, nothing wrong with me (or so we thought) and nothing wrong with my baby. She had just stopped. I didn’t go into labour so had to have a dilation and curettage 4 days later (the first appointment available). I wish I’d screamed and shouted and not been the health professional I am and gotten it done sooner. Worst experience of my life so far. But that was soon to be just one painful event.
So my husband and I healed and cried and tried to get over it. But you never get over it. It’s nearly 10 years later and I’m still not over it. So it’s July that same year and I got pregnant again, easily and unexpectedly. Cue the stress from day 1. I started to have similar bleeding at 6 weeks ,took myself to emergency and was told a similar story until later that same day a clever nurse decided to check my progesterone levels. Low and almost non existent. I was rushed to the doctors and quickly started on progesterone injections every week followed by what I thought would be the rest of my pregnancy with progesterone pessaries. Fun! So here I was thinking that everything would be alright, still having what I now know as not normal pregnancy symptoms. Diarrhoea, aching hands and feet joints, ulcers in my mouth and cramping stomach everytime I ate anything.
I kept working. I’m a radiation therapist and work had me on a desk job. I’m 24 weeks and 4 days. Sitting in my office and my waters break. I didn’t even realise that’s what it was. A friend of mine told me that’s what it was when I told her I thought I had a bladder infection. She rushed me up to maternity (good thing I work in a hospital) and they told me I’d had a full rupture of membranes but wasn’t in labour. There was no reason (still) why my waters had broken. I was otherwise “healthy” and my baby was happy and healthy just minus a bit of fluids to keep him swimming. I was told since I hadn’t gone into labour I would be hospitalised and monitored. They told me to get used to laying in the ward for the next 4 months until I delivered. That lasted for 3 days until I was 25 weeks and I went into labour. My baby’s cord was prolapsing and I needed to have an emergency Caesar. I opted for a general as I can’t have a normal epidural due to my mangled lumbar spine (next bit of hindsight – Rheumatoid arthritis in my spine along with the Crohn’s I hadn’t been diagnosed with yet). Time was pressing and if I didn’t have the general my baby would possibly die. 10 mins later I was out and my baby was born… cyanotic! It took them 7 minutes to revive my blue baby and the he was rushed off to the NICU.
With many struggles and operations and 106 days in the hospital my baby was ok. We took him home on his due date where he spent the next 15 months on oxygen therapy due to his damaged lungs. Flash forward 8 years and he’s defied all the odds and is healthy, happy and a giant! Not a thing wrong with him except he has a gravelly voice from being intubated for so long and has a scar that grows with him every year, on his back. Started out at 2cm and is now 15cm and still growing. So my baby was home and getting better and despite what I told myself I was getting worse but I continued to work full-time shift work. My husband stayed home with the baby and after only 10 weeks maternity leave I went back to work. That was what worked for us at the time. I kept worki6and looking after my oxygen dependant son and ignoring my health.. Still not diagnosed with Crohn’s. Forward to September 29 2012 and that is the day my disaster with Crohn’s kicked off. I had chronic diarrhoea from that date on and thanks for one very talented GP and a genius Rheumatologist I was diagnosed in December 2012 with Crohn’s and rheumatoid arthritis. I couldn’t walk from the pain, had constant debilitating intestinal cramps, nausea,vomiting and erythrum nordosum all over my legs.
When I finally found my exceptional gastroenterologist I now have (which was only about 5 months later) I asked if Crohn’s can cause miscarriage. Yes. Early and late. I explained to him all MY pregnancy symptoms and he says they were all Crohn’s symptoms. There was my third bit of hindsight. I asked both my gastroenterologist and my son’s Neonatologist what would happen if I got pregnant again and they said they could categorically promise me from my history that I would have another premature baby or a miscarriage. So we haven’t had any more babies. We have one miracle that I was told later on by the doctors should not have turned out as he did. He had been clinically dead 7 times, should have had vision issues, hearing loss, etc etc and he was virtually unscathed. We didn’t want to roll that dice again.
Plus, as my son grew up I got sicker and sicker. They couldn’t find the right medications to treat me, I got worse and was bed bound. I couldn’t be the mother I wanted to be. My son from a very early age knew he couldn’t climb on me and had to be careful not to touch my abdomen. He knew I couldn’t pick him up, he’d seen me by the age of 2 be taken away by ambulances, he’s seen me in hospital with tubes and drips and needles in me. I felt like the biggest failure of a mother. Still do. My poor baby boy had to learn on some days when my husband was at work, to look after his mum. Bring me my medications and pop them out the packet for me(which haunts me still to this day). He knows I have bad days still, he knows I can’t always go places and do the things he wants me to do. He tells me that he doesn’t mind and knows I’m sick sometimes. I’ve had to answer his questions about whether I’m going to die, will I leave again and be in hospital for a long time, do I need more body parts chopped out? Be is the most caring, sympathetic boy you’ll ever meet. He’s the first to rush to help anyone hurt, he’s the first to sit with someone when they are having a bad day and the first to give a stranger a smile. He’s a kid that’s had to grow up way too quickly. He makes me immensely proud and profoundly sad at the same time. I’ve done that too him. Correction…Crohn’s has done that to him and I’ll hate that disease every day for what it taken from his childhood. I’d take a lifetime of agony (which I did for 7 years) for him to have never been affected by this disease.
So it’s 10 years later and with hindsight I’ve had Crohn’s for much longer than the 7 years I’ve been diagnosed. Probably closer to 20 or 30. I’ve had an ileostomy, diversion colitis from the ileostomy, pyoderma gangrenosum around my stoma, ileostomy reversal and ascending colon resection and small bowel resection of my terminal ileum, I’ve had 4 hernia repairs caused by an emergency Caesar and stoma reversal being stretched apart from long term Prednisone weight gain, and finally in March 2018 a total colectomy leaving me with just half a rectum and about 2/3 of my small intestine, a battle scarred abdomen that looks like I’ve jumped on a grenade, a daily routine of at least 15 to 20 toilet runs and monthly self injections and Ustekinimab and daily doses of hydroxychloroquine to try and control my agonising joints so I can be a mum, wife and radiation therapist. I’ve never been in remission and fear I may be developing antibodies to my fourth biologic leaving my calprotectin and CRP slowly rising. And I live in constant, debilitating fear that J have passed this insidious disease on to my baby boy. And despite all this I would do it all again if I had to to have my son and my husband by my side.
Once again, a huge thank you to Rebecca for sharing your story. Your son sounds like an amazing little fighter, just like his Mummy!
If you are interested in sharing your story please do get inn touch with me via my email address – firstname.lastname@example.org