• Diagnosed with Crohn’s Disease at 14.
• Controlled with medication from 2002-2020. No previous hospital admissions.
• July 2021 – Ileostomy surgery – stoma formed.
• August-December 2021 – recurring hospital admissions due to high output stoma causing severe dehydration, acute kidney injury and malnutrition. Drastic weight loss (nearly 2 stone in 5-6 months).
• December 2021 – Insides® System started.
• Stoma reversed on 20 Jan 2022
Hayley's Chyme Reinfusion Experience：
The Insides® System chyme reinfusion tube was inserted on Wednesday 29th December 2021. I was nervous but my doctor put me at ease, and I had a nurse with me to assist. The tube was lubricated so went in easily and wasn’t painful - it just felt a bit strange! Once the tube was in, the pump was fitted on the end then the whole thing carefully put into a large stoma bag. The whole thing took about 15 minutes.
One of the stoma nurses provided me with some large stoma bags with a transparent front so that I could easily see how much was in my bag and so I could make sure it was being pumped through the tube ok. She also marked the measurements on the front in 50ml intervals so I could easily record how much I was reinfusing.
I started off slowly, only reinfusing around 50-200ml daily. To do this, I tipped the bag up to reveal the pump at the end of the tube and held the magnetic device on top of the cross. I then dropped the bag back down to its normal position and turned the device on. Personally, I found nothing happened on the first speed setting, so I always set it to speed setting number 2. It is normal to have some reflux when using the device. However, I did have a couple of days where the reflux was constant, so I stopped and tried again later that day or the following day. If I felt any pain or discomfort whilst reinfusing, I stopped and tried again a bit later. After about a week of using the Insides® System, I did get a bit of cramping which I was told was completely normal. The pump on the end of the tube was changed every 3 days to prevent it getting blocked. I opened my bowels just under a week after starting the chyme reinfusion. Once my loperamide was stopped, my bowels opened more frequently.
Although you don’t feel the tube once it’s inserted, it does take some getting used as it is quite bulky. I found lying on my back at night the most comfortable position. Because it was very bulky and I needed a large stoma bag to fit it in, this did make it more difficult to conceal under clothing. At first this bothered me, but then I came to accept that this was helping me and it wasn’t going anywhere so I tried to get past that. I bought some new clothes that could cover it –long, flowing tops, dresses, etc. Apart from the things I’ve mentioned, I wouldn’t say having it massively changed my day-to day lifestyle.
I would definitely recommend The Insides® Company’s chyme reinfusion system. My bowels worked within a couple of days of my ileostomy reversal and I believe it was down to the Insides® System getting my bowel working again after not being used for over 6 months. My surgeon also said it made the ileostomy reversal surgery easier and safer.