Sarah's Chyme Reinfusion Experience：
I was very poorly, weighing 39kg, TPN fed via PICC line for 12hrs per day. I could not eat or drink, only sips of fluids and took paracetamol to help with pain and discomfort.
The consultant agreed for me to have ‘The Insides® System’ due to high output stoma, but funding was an issue, and it almost took 2 weeks to get. As the funding had been taking so long, we were at the stage where my mum, dad and other family members were going to pay for it ourselves. This process was going on and on, meaning that I would have to stay in hospital until the date of my reversal. I had been in hospital since August. I was away from my children because of COVID. I could have one visitor for each week at a time, but it had to be the same person. A different person could visit me the next week. I’m not complaining, I was glad of the visits I could get. My children, Harry and Beth are now 12 and 15 but at the time they were 11 and 14. They have had to grow up very quickly and me being in hospital has had a major impact on everybody. He is self-employed, however he had to cut his hours at work to come and visit me. We were also well aware of the very high fuel costs; the journey taking 2 hours in all. My mum also had to take unpaid leave to help out the family.
I finally started ‘The Insides® System’ on 7th September in hospital. The consultant, Dr. Adele placed the tube at the bedside. Initially I was in lots of pain whilst the device was fitted, but once it had settled, I barely knew it was there. Prior to having The Insides® System fitted, I didn’t know anything about it. I had it done on the doctors’ and nurses’ recommendation. Because I was so purely and malnourished, they mentioned this system because it refeeds the contents in your stoma bag back into the bowel so my body would the nutrients.
I was shown how to change the pump and use the driver to refeed the contents back into my stoma. I finally went home on the 9th September with ‘The insides® System’ and with no need for TPN.
My initial expectation of the device and how it would impact my day-to-day routine, was that once I had been trained to use it, I found it was very easy to use and I couldn’t believe how fast it turned me around nutritionally. I was 47kgs before starting and then after I completed the refeeding Chyme daily, I think I went to 60.4 kgs before my closure operation. I am now 65kg.
I was refeeding 4-6 times daily and had no issues. Mode was set on 2 speed, and I changed my pump every 2 days when changing my stoma appliances. I had no leakage from the stoma bag.
I can't tell you how much ‘The Insides® System’ has improved my quality of life and provided overall benefit to my health and for me to be able to come home was the best medicine for me. Being able to see my children was what I needed. I could go out and about, go for a drive, shopping, and short walks, attend my children’s school plays and activities. I got to the point where I would go to ALDI, and it wouldn't bother me to stand around other people refeeding over my clothes discretely and with no problems. I even went to Harry’s Taekwondo grading I was able to travel there with them. Having ‘The Insides® System’ knew that I didn't have to worry about being near a toilet and I didn’t have any leaks or sore skin. I was also building up my confidence again after it had been negatively affected by being in hospital so unwell for such a long time.
Because the tube from the stoma opening was so long, I had to have such a large stoma bag which felt industrial, the tube was thick and squashed in the bag and felt bulky, it was not cut to the size of the stoma bag, and I was very self-conscious of it. I knew I had to wear it due to the high output. Lee (husband) helped me to change my stoma bag which was a 2-piece system. I got some high waisted stoma shorts to give me some support and to try to hide the tube which was bulging through my clothes.
I had the same tube until my closure, I think! I had to go back to the hospital on the 31st of October, but it was cancelled because of Covid. Because of the Histology and because of having a prolapse as well, I had to go back into hospital and they put sugar on him (stoma) to reduce the size. The stoma went back in but that was scary because I didn't know that could happen. I didn’t know you could have a prolapse and so this put me off changing my stoma bag without my husband’s help.
We discovered that the best time to change the stoma bag would be early in the morning before having breakfast. My stoma nurse, Maxine Housley was just brilliant and wonderful. In fact, she helped to put my mind at ease before seeing the stoma. When I saw my stoma, I just broke down and she coaxed me round and after a few days, I was fine with it and was beginning to accept it. At first, I thought it's the weirdest feeling that part of your body is on the outside in a bag.
Because I was so poorly, I didn’t have much information leaflets from the nurses or doctors. My anxiety levels were high and then when the doctor discussed the benefits of ‘The Insides® System’, which wasn’t a detailed explanation of either how it would work, I trusted the team so much that I just got on with it and accepted what they suggested. I was informed that I would open my bowels normally in a couple of days from using ‘The Insides® System’.
I didn't really do any research on it. When they came to my bedside to put the tube in my stoma, (I thought I'd have to go to theatre) they rocked up at my bedside and I remember holding one of the doctor’s hands whilst he was placing the tube with the other. It was done within 3 minutes or so and I was then slowly shown how to refeed daily with the driver and pump. I started to gain weight before my closure on the 13th of November.
Before I started ‘The Insides® System’, I was on TPN for 24hrs per day, which kept me alive, although I had to cart the drip stand everywhere I went. I was weak and only weighed 47kgs. I had a urinary catheter, NG tube and stoma bag, so maneuvering all this around was a challenge in itself. I stopped my TPN within 4 days of using ‘The Insides® System’ after blood tests to confirm that I was no longer malnourished.
When I started to eat food, my mum and husband would bring food from home as the food at hospital was not too my taste. I had no issues with ‘The Insides® System’ pump getting blocked. I opened my bowels within 2-3 days and was loose but got firmer.
Once I got home and using ‘The Insides® System’ daily and eating more, I had gained weight to 60.4kgs before my surgery and I opened my bowels every other day.
The most important thing for me was being home with my family. I couldn’t see my children on the ward which was upsetting. I had to go outside the hospital in the cold to see them due to Covid restrictions. If it wasn’t for ‘The Insides® System’, I would have to stay in hospital and on TPN until my surgery for closure which might have meant being in hospital for Christmas of 2021.
Once I had gained weight and strength, my surgery due date was up coming. I had my reversal on the 13th of November, and everything went smoothly. I opened my bowels and was sent home on the 17th of November. I now weigh 65kgs.
Finally, I can't thank you enough. ‘The Insides® System’ has been life changing for me and that's exactly what my husband (Lee) said. "My wife having the Insides® System made a great difference to us as a family. Having been apart for so long with Sarah being in hospital, the system allowed her to come home to recover. This was great for me and our children to have Sarah home. It was great to be a whole family again and for us all to play a part in helping Sarah to recover". It turned me around from being extremely poorly in hospital to being able to go home with the system and be with my family living a normal life.
I would also like to thank the amazing team in the hospital; Professor Brown, Dr. Adele Seyers, Maxine (SCN) and ‘The Insides® System Team’.