Posted on 17 May 2022
For World IBD Day 2022, we are sharing Devorah’s story of her journey with Crohn’s Disease.
I suffer from Crohn’s Disease.
I was diagnosed with Crohn’s in March of 2010. For the first few years, I was pretty much symptom free. I went into my first major flare in September of 2014, only a few months after my third son was born. This flare caused me to end up in the hospital for 2 weeks. After that hospital stay, I then ended up being in hospital once a year for approximately 2 weeks each time. I had tried almost every medication and I changed my diet more times than I care to think about or mention. My consultant finally agreed that “we (had) exhausted all medical options”, something that was difficult to hear.
In July 2017 I had to have an NG tube in my nose for nutrition as I couldn’t eat anything because of the pain that I was experiencing. A year later in June 2018, I underwent my first bowel resection and ended up with an ileostomy.
Unfortunately, after this I only had relief for around 6 months before I started flaring again and was put on yet another medication. However I was lucky enough during this flare to get pregnant with my 4th child and I had a pretty straightforward pregnancy and birth. I went through this pregnancy with no Crohn’s symptoms, although I was considered high risk and there was talk of a C-section, but thankfully it all went well in the end. It was around 6 weeks after my son was born that my Crohn’s reappeared with vengeance. Because there wasn’t as much research on the medication I was on before I got pregnant, my consultant wanted me off of it during my pregnancy. By the time I restarted it after birth, it was too late and I was already in a flare.
COVID then came onto the scene and lots of medical appointments were at a standstill, including important hospital consultations, tests, etc. Meanwhile I was suffering in silence as I tried to tend to a newborn and homeschool 3 older children whilst my husband tried to work from home. After the first lockdown, I was able to meet with my consultant again and it looked like surgery was going to be repeated in the near future as there were no other drugs for me to trial or go onto.
In December of 2020, 4 days after my then baby’s first birthday, I was back in the hospital. This time it was for 6 weeks. I was weak and not eating much at the time so I needed to have parental nutrition intravenously, otherwise known as TPN.
It was hard.
There were 2 plans for this next surgery. Plan A was to remove the biggest bit of bowel that was inflamed, and leave me with a stoma again. Plan B was a bit more technical: remove all the bad bits of bowel, still end up with a stoma but needing TPN for another 6 months to a year, although that can be managed at home rather than hospital. After that, I would then have further surgery in a year or so.
On 11 January 2021, I underwent my next planned surgery in the form of a re-laparotomy. They ended up going with Plan A, so they removed more of my small bowel and left me with an ileostomy slightly to the right of my original one.
What I have learned through this experience with Crohn’s is that although there is no cure, there are different routes to take to get to a place where you can manage your condition. Although they may have removed the diseased parts of my bowels, leaving me Crohn’s ‘free’ for a time, I am well aware that I will always have Crohn’s and that I may experience flares in the future. It has been a long journey and I know it is not over, however, I do hope in the future that a cure for Crohn’s is found so that others do not have to go through what I have experienced.