Patient Experience
Sarah Capper
Medical History

• Admitted to hospital June 2021 after collapsing.

• 1st surgery on13th August 2021, 40cm of bowel was removed due to strictures & formation of ileostomy on my left side for Crohn’s disease.

• Histology report showed cancerous growth in the bowel.

• Malnourished was on TPN and spend time in ITU & HDU

• DVT caused by PICC line in Left arm which was then removed & another placed in my Right arm.

• Admitted to Chesterfield Royal Hospital and then transferred Northern General Hospital

• September 2021 started The Insides® System

• Reversal of Ileostomy 13th November 2021

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I was very poorly, weighing 39kg, TPN fed via PICC line for 24hrs per day and I had to cart the drip stand everywhere I went. I could not eat or drink, only sips of fluids and took paracetamol to help with pain and discomfort from the NG tube that I had fitted for 11 weeks. I had a urinary catheter, NG tube, and stoma bag, so manoeuvring all this around was a challenge.

I didn't receive a lot of information or literature from the nurses or doctors because I was pretty poorly so I could not really do any research on The Insides System. My anxiety was already high, so when the doctor mentioned "The Insides System's" advantages—without providing a clear explanation of how it would function, I trusted the staff so much that I just went along with what they recommended. I was told that after using "The Insides System," I would be able to open my bowels normally in a few days.

The consultant agreed for me to have The Insides System due to high my 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 Husband and 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 am 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. My Husband is self-employed, however he had to cut his hours at work to come and visit me. We were also aware of the very high fuel costs; the journey taking up to 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 along with a colleague placed the tube at the bedside. It took only a few minutes or so for them to insert the tube in my stoma, they came to my bedside to do the procedure (I had assumed I would have to go to the operating room). I was then gradually instructed how to refeed every day using the driver and pump.

My Husband and I were shown how to change the pump and use the driver to refeed the contents back into my stoma. 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 real issues with ‘The Insides System’ pump getting blocked, I just increased the driver speed. I opened my bowels within 2-3 days, and it was loose, but got firmer.

I finally went home on the 9th of September with ‘The Insides System’ and with no need for TPN. I stopped my TPN within about 2 days of using ‘The Insides System’ after blood tests and being closely monitored.

Home Life

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, in the beginning 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.

My initial expectation of the device and how it would impact my day-to-day routine ended up matching. Once I had been trained to use it, I found it was extremely easy to use and I couldn’t believe how fast it turned me around nutritionally.

Because the tube from the stoma opening was so long, I was given 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 was refeeding at least six times daily and had no significant issues. The mode was set on speed 2 and I changed my pump every 2 days and my stoma appliances every day. I had some leakage in the night from the stoma bag.

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. This was because of the histology results and because of getting a prolapse as well. I had to go back into hospital, and they put sugar on my 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.

For me, staying at home with my family was the most important thing. It saddened me that I could not see my kids on the ward. Due to Covid restrictions, I had to leave the hospital if the weather permitted, assisted by my husband, to see them. Without "The Insides System," I would have had to remain in the hospital and on TPN until my surgery for closure, which may have meant spending Christmas 2021 in the hospital.

I was 39kgs before starting and then after I completed the refeeding chyme daily, I had gained weight to 47kgs before my closure operation. 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 can't tell you how much The Insides System has improved my quality of life and provided overall benefit to my health. For me to be able to come home was the best medicine. Being able to be home with my Husband and 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 supermarkets, 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. Having The Insides System, I 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 so unwell in hospital for such a long time. The only feedback on how the device could be improved would be to have a small bag to put the driver in when going out. I had a small bag, and used this, and it fit in perfectly.

Finally, I cannot thank you enough. ‘The Insides System’ has been life changing for me and that is 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 Insides 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 more normal life. The most important thing that “The Insides System” gave me was weight gain, with the use of the System, I gained 8kg over two months which made me stronger for my reversal surgery in November. After closure, my weight has continued to increase to 65kgs.

I would also like to thank the amazing team in the hospital; Professor Brown, Dr. Adele Sayers, Maxine Housely (SCN) Christina and ‘The Insides System Team’, the experts and driving force behind this device.

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