Living with Chronic Intestinal Failure; the courage to move on.

The story of Laura

In January 2018 I was rushed into theatre at my local hospital for what became lifesaving surgery. I had been struggling with abdominal and back pain for a while but it was put down to me being in the third trimester of my pregnancy at the time. The emergency surgery resulted in me having the majority of my small bowel removed due to a band adhesion; leaving me with an ileostomy and only able to feed with Parenteral Nutrition (PN) via a central venous catheter 7 nights a week. Waking up to this news in intensive care 2 days later, I was in complete shock!

I had been somewhat of a ‘health freak’ all my life and looked after my body so this was completely devastating for me. Nothing prepared me for the next news I was about to receive though… because of the severity of what had happened to me our baby girl Isabella had passed away in theatre during my surgery. She had been delivered via Caesarean section whilst I was still on the life support machine and the sheer realisation of all of this horrific news left me completely broken.

Meeting my beautiful little girl was one of the proudest but most traumatic times in my life. She was absolutely perfect and looked just like her big brother. Her Daddy and I spent some very precious moments cuddling and loving her before we had to say goodbye.

I then spent a further 4 weeks in my local hospital and was told by my consultant surgeon that I was being referred to a specialist unit who are a centre of excellence for dealing with the circumstances in which I was facing. I was told that once I got to the unit they would discuss with me the options of a possible stoma reversal but there was a chance that this wouldn’t be possible with me only having 15cm of small bowel remaining.

Once I arrived at the new hospital I was taken to the specialist Intestinal Failure Unit (IFU), and it was then that I truly began to believe there was some ‘hope’ for me. Each member of staff was incredible from the minute I arrived. I met my consultant who was sympathetic but extremely professional and talked me through each stage of my recovery and the stoma reversal surgery. I then met the rest of the team who explained each part of the situation I was in and carried out all of the relevant tests that were required.

The IFU is a ward like no other I have ever experienced. You are taught to measure your own input and output and it has kitchen and laundry facilities which is amazing for patients who are on the ward for a long duration of time, as it allows them to feel more independent and not feel as ‘hospitalised’. There was always a member of staff on hand to answer any worries or questions you may have or to assist in anyway. Also, in the morning when the doctors did the ward round they answered anything that the nurses couldn’t, with the added idea of having a pad to jot down any questions which was great as we all know how a group of doctors around your bed can make you forget to ask the things you really want! I was on the ward for 3 weeks and was then sent home established on Home parenteral Nutrition (HPN) 6 nights a week to wait for my reversal surgery in a few months’ time.

Fast forward to June 2018 and I was in theatre having my operation which literally transformed my life again, for the better this time. Again, alongside my consultant I also had another fantastic colorectal surgeon and a team of theatre staff such as; an anaesthetist and nursing staff who helped me get down to theatre that day with as little anxiety as possible. I awoke from my surgery expecting to have a gastrostomy tube and with the fear of receiving more bad news. Neither of these were true and it was the first bit of positive news that I had received all year. The surgery had gone well and there had been more bowel found than expected which changed the plan of being on TPN for the rest of my life to the chance of coming off it in the future. I still have a fair way to go in my recovery but I’m getting there bit by bit, again with the help and support of both my consultants and all of the nursing team on the IFU. I can’t thank my two consultants enough for all they have done for me so far, alongside all of the rest of the staff including doctors, professors and nurses. They really are my heroes in all of this and without them I wouldn’t be able to start piecing my life back together and be here for my little boy, who also adores all of the staff on the ward as they always make a fuss of him! In fact, he is even saying he is going to become a surgeon alongside my PN consultant… his inspiration! I urge anyone who is beginning this difficult journey to try not to fear going onto the IFU… You really are in the best hands with incredible staff that will do their utmost to support you in any way possible.