• Enteroatmospheric Fistula (EAF)
• Used The Insides System for 14 months
My name is Emma and I am a 21 year old who was in a car accident with my brother and partner when I was 19 I am going to tell you about my experience with having my fistula and what it was like using my refeeding device.
On October 4th 2021 I was in the back seat of a car that was involved in a head on collision accident. I sustained multiple abdominal injuries predominately associated with my stomach and bowel which had multiple perforations. My other injuries involved my spleen (which was removed), liver, pancreas (partially removed), kidney, hip, spine, ribs and pelvis.
I spent 2 months in ICU following my accident and I required 9 abdominal surgeries within a very short period of time, some because of the multiple perforations I had. During these operations I had my duodenum repaired and had my right transverse colon removed. I was also given a temporary stoma with the plan that it would be reversed at a later date. As a result of my injuries my stomach muscles came apart and I was left with an open wound. Because of this and my injuries I ended up developing a post-operative enterocutaneous fistula 20 days after my accident.
On my first day of being in hospital they started me on TPN to meet my nutritional needs. In the middle of December, I was finally allowed to eat real food that wasn’t just yoghurt. Because of my fistula I was not able to meet my nutritional needs with my oral diet as everything I ate and drank came out through my fistula. It would break down in my stomach to chyme but it went straight through and just kept coming out of my fistula and nothing was reaching my small intestines, so my stoma was not active.
I was producing about 2 litres, sometimes more of chyme per day, this meant it was classified as a high output fistula. Even when I was put on a ‘nil my mouth’ diet for a week I still had a very high output from my fistula.
Another challenge I faced was my fistula was in the base of a wound cavity that was initially managed with a fistula isolation device covered with a bag and negative pressure wound therapy. Whilst the depth of the wound did improve, I was still left with a cavity depth of around 3.5 cm which meant bag management of the fistula was very challenging. The cavity would fill up with the chyme from the fistula before it emptied into the bag and this meant that there was a higher risk of the output leaking under the bag. It would have been much easier to manage if it was like my stoma and above my skin level.
As chyme is very alkaline and we were not able to isolate my fistula prior to applying a bag it meant it would come in direct contact with my wound and when it leaked it would burn my skin. Because of this I was having to change my bag at least twice a day as it would leak morning and overnight. Stacey (CNS - General Surgery) would spend hours daily to assist with bag changes. My mum ended up learning how to do the bag change and helped Stacey or completed bag changes.
So in January two things were mainly keeping me in hospital
1. Nutrition requirements because of the fistula, and
2. Bag management for my fistula
While having to learn to be mobile again, they found out that I had also a rupture ligamentum T11/12 on my spine and needed to have surgery to put bolts and a plate on my spine.
At the start of January 2022 my Surgical and Nutrition teams came and saw me to discuss my options for my Nutritional requirements. I could either be taught to administer my own TPN at home until my stoma and fistula were reversed which was originally planned for just over 12 months after my initial injury (November 2022). They advised that there were risks associated with TPN including the risk of sepsis from the PICC line I would need to have and also the possibility of it damaging my liver. There was discussion of doing the reversal surgery earlier but that did not give me the best chance of recovery and may have led to me having a permanent enterocutaneous fistula so was not the preferred option. I was told the longer you wait to have the surgery the better the results are likely to be as it would give me the time I needed to make sure my body was as fit as possible. So, none of those options were preferred, but Dr James Falvey who leads the Nutrition Support Team said that he had been to a conference where he saw the ‘Inside Refeeding System’ and discussed this with the rest of the Nutrition team and my Surgical team. They decided that if this was an option for me it would give me the best possible chance of having a successful reversal surgery and recovery and it did not come with the same risks as TPN. I was then sent for radiological tests to see if my fistula was able to be used for refeeding, once these results came back and they confirmed it would be an option for me my team said let’s give it a go and see what it’s like and they reached out to the Inside Company.
On the 26th of January 2022 the device arrived from Auckland and I had about 16 people (Doctors, Nurses, Dietitians and Insides Company reps) all crammed into my hospital room to see what the device was and how it worked as I was the first person in Christchurch to use this device. They put the tube in me and showed me how to work the machine. I did my first refeed on the 27th of January, I refed big volumes about 500mls and I found they gave me sharp pain and made me feel nausea and like I needed a bowel motion. I did 2 refeeds that day. I found with using the refeeding system that it was a good way to make my bowels wake up and get used to working again as my stoma wasn’t active until I started the chyme refeeding. I had thick chyme so sometimes it wouldn’t be able to be refeed so my mum came up with the idea to sift the clyme before we refeed it. I also had to make sure I was chewing heaps when eating or id see the food come straight out and who ever does my bag change would know exactly what I ate the day before. I was still on TPN but length of time had been decreased from 20：00-08：00. I initially found the Refeeding to be quite painful, 8/10 Sharp pain level sometimes 10/10 and preferred the idea of just having the TPN but I’m grateful that my mum and Stacey didn’t let me give up and would come and encourage me to do it with them as I wouldn’t be in as good of a state as I am today if I didn’t persevere with it.
For the first couple of weeks I was only refeeding about 20% of my chyme and was refeeding only once morning and night. One thing we worked out was if we refed more than 400mLs at once it would just end up coming back out of my fistula, so we worked out in order to keep it all down we had to do it in increments of 200mLs which also helped with pain and nausea. Stacey helped me come up with goals each week to refeed more % of chyme each week till I could do the 100%. On 22nd March as I had reached my goal of refeeding 100% of my chyme the TPN was stopped but I was still requiring 2 litres of IV Fluids twice a week.
Because of the difficulty with bag management any weight on the bag would increase the risk of leaking. To reduce this risk, I always had a secondary drainage bag attached. This did mean that when it came to refeed we would have to empty the output from the drainage bag into a jug before placing it back into the primary bag with a large syringe for refeeding. Sometimes Stacey would have to do about 4 bag changes a day which took 1-2 hours or longer to get a bag applied. By March the biggest issue I continued to have and the main reason I was still in hospital was bag management. Stacey reached out to staff at St Marks Hospital, London for expert advice. They recommended topical oxygen therapy to assist with drying the area which was done along with suctioning daily for approx. 2-3 hours. This in combination with Cavilon advance provided the best results and bags were usually able to last at least 1 day.
I was finally able to be discharged from Hospital Mid April 2022, 6 months after my accident (just in time for my birthday). I had to continue doing my refeeding at home and my daily regime ended up refeeding 4 times and doing one bag change from 8：00-11：30 with Nurse Maude district nurses every day.
Around August 2022 almost a year after the accident they took out my PICC line as I no longer required IV Fluids. By September 2022 my output had decreased, and I found I was only having to refeed approx. 300mLs twice a day; once before my daily bag change and once before bed. Some days depending on what I had eaten I had more to refeed and if it was a big refeed I would still get pain but it only lasted for 30 minutes max and then disappeared. I did notice when I had this pain my stoma would be very active, and my stoma bag would require emptying and when the pain disappeared the stoma output would slow down again.
On the 22nd of March 2023 after a long wait and multiple changes for my date of surgery. I was finally lucky enough to have my surgery, I was ready for it and so excited to go back to leading a normal life that didn’t involve 3 hours of my day being spent on bag changes, having to refeed or worry if my bag will leak while I’m asleep or out in public. My surgery went very well, my stoma and fistula were successfully reversed and I’m very relieved that I did not have any complications that involved a fistula reforming. I’m so grateful that I was able to use the Insides System refeeding device because it improved my chances of a successful recovery as my bowel had continued to work with the refeeding it did not take long to recover after surgery and my whole bowel began working again.
I would recommend using the refeeding system even though it was painful at the start it did go away after time and the outcomes of me using it was a lot better than if I didn’t. I still got to live my life as a 19 then 20 year old, I still got to be social and see friends, go away for holidays with my family were as if I didn’t have the refeeding system. I never let my injuries or medical condition stop me from doing what I wanted to do, I just learnt that I may have to do things differently if I wanted to still do it.
So don’t let having a fistula or poor health situation hold you back and also try have a positive outlook on life because it will really help with your recovery just as much as having a great support group does.
Overall I’d like to thank the amazing nurses I had in ICU and on the wards who made my stay in hospital feel like a home and to my amazing surgeon Mr Rukshan Ranjan and the surgical team they were absolutely amazing and I was so lucky to have them. Rukshan had an amazing bed side manner which most surgeons don’t have and he was very good with helping my family understand what was happening, he was like Superman. A special thanks to Stacey Simpson she is like superwomen but a nurse version she helped me battle a lot of the problems I had with my fistula and she dedicated a lot of her time on me and the Nurse Maude nurses Susie, Rose, Day, Jane and Gillian who I saw every day after hospital they were amazing and made the experience a lot easier. Also thank you to support circle of my friends, partner and family. But a major thanks to my mum who was there every morning for me when I was in hospital and did my dressing changes in hospital when Stacey was away on holiday leave and for all the support she gave me outside of hospital. A big thank you to the Inside Company for supplying the refeeding device.
I couldn’t have made it this far without these amazing people so thank you all for helping me achieve everything I achieved.