Sam* is a 32-year-old male with Idiopathic Hypereosinophilic Syndrome and a double barrel ileostomy. He lives with his wife & two young children. Sam was first diagnosed with Idiopathic Hypereosinophilic Syndrome in 2018 when he was being treated for an episode of diarrhoea whilst in India. In 2019, while still in India, Sam developed bowel ischaemia and required a laparotomy with small bowel resection. This surgery left Sam with approximately 1 metre of small bowel remaining. He developed an enterocutaneous fistula from this surgery, however, this fistula has since healed. Since this initial surgery, Sam has experienced many flare ups, presenting as episodes of colitis with eosinophilia. These presentations were generally treated with methylprednisolone, followed with twice daily 8mg Dexamethasone that resolved the flare.
As stomal therapists, we became involved in Sam’s journey following his second surgery. Sam’s surgeon David Read informed us that the reason for the double-barrelled ileostomy was to facilitate refeeding via the distal lumen. David was keen to trial a new device developed to facilitate automated chyme refeeding, called The Insides® System. The Insides® System allows for refeeding of chyme without the historical process of removing the effluent from the pouch and syringing it back down the distal limb via a gastrostomy tube. While we waited for approval to use the device, we were put into contact with Garth, William & Emma from The Insides® Company so we could learn how this new system worked. Fortunately, Garth & William happened to be in Melbourne for a conference and were able to come to the hospital to demonstrate how the device worked. This not only gave the Stoma Team a chance to learn, but also the ward nurses, nutrition nurses, dieticians and educators who would be caring for Sam.
From diagnosis until his last surgery in 2021, Sam’s weight dropped from 90 kg to 65 kg so it was time to start his rehabilitation and increase the length of intestine available for absorption of nutrients and fluid. Due to Sam’s short gut, he would be requiring ongoing parenteral nutrition to prevent malnutrition, but the addition of chyme refeeding would supplement his nutrient and fluid absorption. Sam transitioned to learning home parenteral nutrition (HPN) while awaiting approval of The Insides® System.
On June 7th, we received approval to use The Insides® System from the hospital. The tube was inserted by the surgeon and we started teaching Sam how to use the pump to refeed his stoma output. Sam’s stoma output had been between 2.5-4L/day and he was using a high output stoma appliance attached to a fistula bag. To control his output, he was on Loperamide 16mg QID, Codeine & Octreotide 200mcg TDS. For ease, he was transitioned to a monthly injection of Lantreotide 60mg to reduce the amount and frequency of medication he was taking.
Sam was passing formed stool by the 13th of June and has continued to do so roughly every second day. Sam was discharged home on the 16th of June, nine days after starting The Insides® System and to date, has required no readmissions to hospital for dehydration, infection, or unrelated causes. He is reviewed by the nutrition team monthly who order and review his bloods and give him his Lantreotide injection. Sam has been putting on weight.
The stoma team also review him monthly along with the surgical team. We replace his gastrostomy tube and top up with the Insides® pumps that he requires. We assess his stoma, how he is managing the refeeding including frequency & amount of time it takes him to pump. Currently he is managing up to three times a day. The first pump of the day is more successful as he finds his output is much thinner, after that, his output becomes thicker due to eating and medication and he isn’t able to pump as much. It is thought that once we have access to the tube designed by The Insides® Company, this will be less of an issue as it is a wider bore than the gastrostomy tubes being used currently.
As a result of Sam’s positive weight gain from refeeding his chyme, he has started to get excited about reversal of his stoma!
Daniel is a 33yr old male known to have medically resistant Crohn’s disease affecting his jejunum and terminal ileum. He had been referred to a specialist centre for further management.
This case report details Rebecca’s* experience using The Insides® System for her high output ileostomy following surgery for resection of stricturing Crohn’s. This case report will focus on the positive weight gain that Rebecca experienced while using The Insides® System.