My #GetYourBellyOut story: Roxanne

I’ve had Ulcerative Colitis since 2000 and have been on medication ever since. Generally, my chronic illness has been kept under control despite a few flares which were managed by being put onto a course of steroids. That was until 2013 when I was hospitalised with cellulitis (caused by an Ingrowing hair!). The antibiotics they gave me sent me into a flare and a few days later I found out that I was pregnant!

During this time, I moved out of London and back to my home county to raise my family so there was a gap in my care as I changed hospitals. I continued to flare badly, trying to manage on steroids (and all the usual that comes with that) until I became so unwell that I had to be admitted to a new hospital whilst 6 months pregnant for a blood transfusion and colonoscopy.
I stayed for a couple of weeks and left feeling slightly better.

After my son was born my Ulcerative Colitis seemed to stay in a constant flare until it eventually got worse. It was around this time that my lovely IBD nurse suggested a Facebook support group called #GetYourBellyOut
It just so happens that my IBD nurse is my longest childhood friend! We have known each other since we were 3 and our families even lived together at one point when there was an overlap in the exchanging of their new house. She chose IBD as her specialty because of how poorly I had been when first diagnosed, even though I had moved to London by the time she was practising. I am delighted to say that when I moved back to Sussex, she then became my nurse.

I was put onto Humira and yet more steroids to try and get things back under control. About a year after my son was born, I had an ovarian cyst removed. Again, recovery was tough, but I fell pregnant again in 2016. Still flaring, we gave ourselves a year of trying before we would stop as my Ulcerative Colitis was getting worse, however I fell pregnant first time!

This time I was monitored more closely, I had a few iron infusions, high dose of steroids but continued to flare. We talked about surgery to remove my colon, but I just had to get through my pregnancy first.

My daughter was born, and I was a mess, I spent more hours on the toilet than not. I lurked around in the background in the GetYourBellyOut support group but was kept busy with a flare, two kids and simply trying to survive!

I had tried all the drugs by now, Humira/Azathioprine/what felt like permanently on steroids. I was also breastfeeding at the time so felt like a walking zombie. My eyes were glazed, my body swollen from the steroids I had been on for 2 years and exhausted from living on the toilet.

Looking back at photos of myself then makes me so sad, as the struggle to even have a shower was so intense. I remember it well and you can see in my eyes the pain on top of raising two young kids while living on the toilet. I kept putting off surgery as I wanted to breastfeed my daughter as long as possible and I didn’t want the disease to take that away from me after so many years of sacrifices I have had to make with this disease controlling me.

Looking back, it was probably a bit silly. I pushed it to 18 months of breastfeeding and then my body just started failing. My hair was falling out and I had a permanent rash all over me. My family said enough was enough, and to have the operation.

This was when I really started to search and read other people’s stories on #GetYourBellyOut.
All the advice everyone gave, the support, the bad times the good times – I felt this group had way more information than I had ever been given access too from the medical profession.
Even if I did not have the same experiences, all the knowledge and just having other people’s experiences gave me comfort. Any question that I had, had already been asked and answered with various replies and advice.

I had the subtotal colectomy as an urgent case, followed by a proctectomy a few months later. I’ve since had 4 more surgeries, 2 emergency hernia repairs, stoma refashions and a repair job on my Barbie butt. All since 2018 – it’s been a lot!

This journey has been doubly hard having the kids around but also without them I would have totally given up and been in a pit of doom permanently. Physically it is tougher with them, but mentally it’s the kids that have kept me going!

None of this has been easy to deal with or accept, but the advice, tips, and support from #GetYourBellyOut has really helped me. Even if I don’t ask questions myself, I can still search in the group to find that someone else might have had the same problem or query prior. It is a comfort to know that I am not alone, others are having the same experience and most of all we can all get through it together and eventually overcome our obstacles.