Speed through childhood and teens. Bouts of chronic pain on and off. Mad dashes to the toilet and near misses. Whilst struggling through secondary school and managing it all. I went into my twenties more optimistic, taking mebeverine to manage it and loperamide. I met my now husband and made plans. Still having random bursts of pain which knocked me down for a day or two.
We planned a wedding and we were pregnant with our daughter. Something I only dreamed of. We mentioned concerns around my history with my bowel. Nobody seemed concerned. My pregnancy was uneventful until 36 weeks. Where I had terrible abdominal pain and sickness. We called the hospital and advised to stay home and give it another 24 hours. If it didn’t clear, come in. So in I went. I was put away from other expectant mothers and popped on IV fluids to rehydrate. Believing I had food poisoning. I was discharged, my maternity leave began early and I prepped for having our baby.
Thankfully our daughter was delivered safely and in great health. We went on to plan the wedding which was the day after our daughter’s first birthday.
Our friends and family travelled with us from Sheffield to Cornwall for our daughter’s 1st birthday and our wedding. 2 weeks prior I had a day of horrendous pain which eventually passed. I put it all down to stress and worry over the wedding planning. Not knowing it was all building to a worsening issue.
I began feeling some discomfort and mild pain on the 28th May; my partner was on his stag do and I was with others entertaining the kids. Trying to bathe her and get ready for tea. I left the meal early putting it down to my daughter being tired and to prep for her 1st birthday the next day. But really I was in agony and needed to get her to bed so I could rest. Later that night I was in excruciating pain and vomiting. I couldn’t rest and didn’t know what to do. How I managed through the night and tending to my daughter I honestly don’t know. By 6am I knew I needed help so text my friend to bring me water and pain relief. From that point, it was a rush of trying to get an ambulance and help. Sadly it was a 4-hour wait and I didn’t have that left in me. My sister-in-law drove me as far as I could manage to Newquay minor injuries hospital. Thankfully they got permissions from Truro to administer fluids and assess me. Then for me to be transferred by ambulance to Truro.
The whirlwind happened, tests, cannulas, CT scans and before I know I’m getting prepped for surgery. All whilst family and friends try to continue with the 1st birthday party we’d planned for our daughter. Not knowing if I was ok or not.
We missed our wedding. I was in intensive care.
As I was in hospital friends and family finished their week away and headed home. Our parents stayed to help out with our daughter. Our accommodation The Park in Mawgan Porth was amazing. Giving us free accommodation until we needed it. Offering food too. I think I was in just shy of 2 weeks in the hospital. Which was a very traumatic time for me. I was weak, nil by mouth and my veins were protesting every day against the blood tests and cannulas.
After I was discharged I spent another week trying to build strength for the 6 hour journey home. Which we made, with great relief.
I was off sick for 5 months. But didn’t feel the same person. It had been a tough time for us. I was still getting pain. The GP recommended a low FODMAP diet. Which I did for 5 months but with no improvement. I was simply told with adhesions nothing could help. I had a colonoscopy and other ultrasounds but everything was normal.
Lockdown happened. I was taking amitriptyline to help me. But once back to work I stopped this. I did ok …ish for a year or so. Until discomfort returned. I changed jobs again to be less on my feet as my job was quite active.
I started my new job in September 2022. In January 2023 I was taken ill. Again excruciating abdominal pain. We went to A&E and all tests led to another volvulus and bowel obstruction. Putting me back into surgery. It was a long 3 weeks. Surgery went well. But I was back in critical care before being moved to a ward. My bowel didn’t get functioning for at least 10 days. I had this time the NG tube as I was so ill without it, IV fluids and new to me TPN. When I was eventually discharged, I wasn’t as weak as the last due to the TPN. Aiding recovery at home. I was back to work in early May. Gradually building up.
I had been back 5 weeks when the horrendous pain was back with violent vomiting and I lost consciousness briefly and took a knock to my head, again. I’d passed out after a bowel movement 2 weeks previous and split my eyebrow open. Off I went to A&E. It was only a 20 minute drive but I was so ill, it felt like forever.
I was rushed straight through and treatment began. My consultant chose to treat this one conservatively. Surgery was too risky. The surgeon from January and notes from 2018 stated how much of a mess it was inside and due to the malrotation nothing was in its rightful place. The words used were “it could be catastrophic”. Not quite what you want to hear. I was in for 2 weeks. TPN, IV fluids etc. After 7 days I had a bowel movement.
I’ve yet to have my follow up appointment. Hoping for an answer. Will it happen again? When will it happen? Will it be worse next time? Can corrective surgery be done?
I also developed an incisional hernia mid-July 2023. So I’m dealing with this discomfort and worry if they’ll aggravate each other.
Being a rare congenital issue there isn’t much information or support out there. Even guts or bowel charities don’t cover it. It was only this year that occupational health told me it was rare and a chronic illness. So I’m struggling to get my head around it all. Feel in limbo and stuck.
The bonuses are that my daughter despite the odds was born. We did get married eventually and although we missed her 1st birthday we celebrate every year with family and friends. I just hope I have answers soon.