This week we feature Jessica's story.
Look out for the upcoming live chat between Sarah and Jessica on our Instagram @CUIWear
Its coming up to 4 years that my IBD symptoms began and when first tested my Calprotectin came back as 2046. My symptoms were continously progressing and I ended up being hospitalised on 13th July 2017. At this point A&E doctors started me on standard IBD treatment including IV pred but my official diagnosis wasn't received until 17th July via my first scope.
I was diagnosed with acute severe UC and treated as an urgent case. On 19th July I was started on Infliximab and by 21st I was told I would need emergency stoma surgery as everything was failing to reduce my symptoms and my bowels were close to perforating.
After surgery I was in complete shock. I hadn't processed my diagnosis let alone surgery so I really wasn't prepared. I was told I would be out of pain but I ended up being a complex case in and out of hospital with issues. I had further emergency surgery on 19th August 17 (when they found a twist in my bowel). This surgery led to sepsis but it was only found when my wound burst open on day of discharge.
A J-pouch was decided by my surgeons as I continued to suffer with bowel obstructions regularly and they felt the jpouch would relieve my issues (which is has helped). They wanted to complete it in Feb 2018 but they held it off until April so I could go ahead with our wedding day. I suffered with a bad bowel obstruction on the day but we managed to say I do and enjoy our time together until just after our first dance.
On 26th April 2018 my first j pouch surgery went ahead (around 8 hours) and I woke up with so many different tubes. NG tube, stomach drain, anal drain, loop ileostomy and more. I had a lot of blood loss from my back passage which led to a blood transfusion but other than that my recovery seemed OK.
3 months later all my tests came back OK so stage 3 of the jpouch surgery went ahead on 12th July 2018. My bowels seemed to adjust very quickly and I found my first 'normal' poo very strange.
My jpouch has helped my obstructions a lot. I still get them daily and my diet is restricted but I can manage them at home, reducing my hospital visits. I get bleeding and pouchitis but it's nothing I can't cope with. I think I've only had one accident in the nearly 3 years of having it. The only major issue I had was 2 weeks after surgery. I ended up in resus with severe dehydration, which at first they thought was sepsis.
I celebrated my sister in laws graduation meal and the food didn't agree with my pouch. Throughout the night I had been to the toilet 50 times and was struggling to keep fluids down. The butt burn was horrendous, my full cheeks were red raw. They didn't know if I had c-diff so I was quarantined. It took a week to recover with numerous IV fluids as it caused acute kidney damage.
I've since had Ulcers found in my ileum but for now it's only my obstructions that cause complications. (bowel wise)
My life is still very different today due to a diagnosis of cfs which has got a lot worse throughout the last few years. The pandemic hasn't helped as I haven't been motivated to try anything and my anxiety has been bad when leaving the house. I've found myself unable to return to my career and my husband + mom sometimes have to care for me.
Despite my illnesses causing challenges I have always been ambitious so I created an awareness cause back in 2019. This is something I managed to expand during the pandemic which really helped my mental health.
I love embracing my body, especially my scars as they remind me of my strength on a daily basis. It took me 6 months to accept my Stoma but I was really sad to see it go (even with it being a nuisance) I now love empowering others to love the skin they are in and overcome the journeys they've been through.
We all should be proud of ourselves and that's the message I try to show whilst also telling the good, the bad and the ugly because I feel its important we tell the truth so others don't feel alone.
If you would like to share your story and discuss it with us in a one on one awareness feature please get in touch.
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