UC Patients from Derbyshire
Male Patient
“Personally, I think it is a fantastic system and was easy to do. I would be very happy to use it in the future. My only question was about the time, I think the instructions should say to leave at least for 2 hours and no more than 24 hours.”
Female Patient
“The kit was easy enough to use. I think with regular use it would become easier so thank you for letting me try it out. I liked the fact that I had the results within a few hours rather than waiting weeks and having to call the doctor for a result, this has lessened my anxiety.”
Basildon and Thurrock Crohn’s and Colitis Information Facebook Page
“This is the best thing ever, if you get the chance do it. Results in hours not weeks. It changed my life. Even if it feels weird, have a go. This type of technology can push the future of IBD to the next level.
Anyone who has had days on the loo waiting for a call or an answer will appreciated this technology. The same day your consultant can have the data they need to get you in hospital or change your meds straight away. Just do it.”Basildon and Thurrock Crohn’s and Colitis Information Facebook Page
Jere et al, BMJ Open Gastroenterology, Volume 8, Issue 1
“My son gets very anxious at hospital so this kit is perfect to keep him happy”
“My daughter prefers it as it’s less messy, she’s in control and it’s a more private experience”
“It was easy, I feel more comfortable”
IBD Patient’s Perspective
“I found the Kit and App user friendly and easy to follow. The Patient Support Website has good information both in video and the written form. The patient forum is also a great idea and can become an invaluable source for those new to using the test. Overall, I feel that there is an enormous benefit in using IBDoc for long term patients in the self management of their condition. Results can be seen straight away without the inconvenience of having to go to the hospital and then waiting for results to be sent and – treatment plans can be established more quickly. This has been particularly highlighted during the COVID-19 situation, when many patients would not want to travel to their hospital. Access to past results to look at trends is also important.”
Stephen Bonnington, Crohn’s Disease Patient
Vicky Munday, Ulcerative Colitis Patient
“I don’t think they could have made the test any easier to be honest – If you have been offered the chance to use the IBDoc just give it a go, taking the sample isn’t a big deal and the results come through really quickly which is all that matters.”
Lee Stanley, Long-term Sufferer of Crohn’s Disease
“The number one thing for me since beginning the IBDoc trial is that I have found that my anxiety levels have dramatically decreased. It has also reduced the “waiting time” for results down to hours instead of days or weeks. This means I’m not constantly second guessing or monitoring how I feel, which I find mentally exhausting.
I believe what IBDoc has allowed me to do over the course of the last year is fundamentally educate myself in understanding my disease state.
Having Crohn’s disease for twenty-seven years has taught me many things; fundamentally that patients need to self manage and IBDoc is one powerful tool in my self-managing tool kit. I wasn’t expecting IBDoc to provide me with the answers to everything; using IBDoc I haven’t suddenly found a miraculous cure, I’m still searching for the “perfect” diet and optimised plan. However, I believe IBDoc has contributed significantly to both the physical and mental aspects for the management of my disease.”
Norwegian Study
“All who are motivated and interested should be offered IBDoc®. Great to test at home. Easier to perform than regular disease activity monitoring.”
Participant, Age 36
“Was a little unsure at first, but it was a very positive experience. I am now very positive to IBDoc®.”
Participant, Age 40
Clinical Team Testimonials
Willow, IBD Nurse, Manchester Royal Infirmary
“We’ve also used them [IBDoc] in ways we hadn’t anticipated e.g. we recently reviewed a lady admitted under gynae in her third trimester. She was new to our area with no recent colonoscopies or imaging, now flaring with her small bowel Crohn’s, who we didn’t feel was safe to do a colonoscopy and baby was too big to see through on a scan. We used one of these tests (our lab turnaround for calprotectins is 2 weeks) to check her calpro and suggested if >250 to start some Budesonide to keep her well the remainder of pregnancy. It was >300 so we commenced this and on review post-discharge, she was well and stable.“
Mid and South Essex University Hospital Trust
“Using the IBDoc has increased the engagement from both the patients and the clinical team, and the speed of the results really makes a big impact in decision making and patient management.”
Dr Pushpakaran Munuswamy, Department Lead, Gastroenterology
“We enrolled in the NEQAS faecal markers of inflammation scheme as the first user in the IBDoc group. We have been very pleased with the performance and hope that other users will enrol in the scheme as they begin using the devices for their patients. We will continue to work with the IBD team to refine the service and our use of the IBDoc portal.”
Kezia Allen, Clinical Trials and Informatics, Pathology
“From our perspective the big benefit is how quickly we get the results back and can start to make decisions on treatment options for the patients. Patients don’t have to keeping phoning to find out if the results are available (two weeks is a long time if they are worried they are flaring). If a patient thinks something is wrong they can request a kit and easily find out if they are flaring or not, and they don’t have to come into the hospital. Even the older patients have coped really well and have embraced the new technology – the oldest patient we have on the IBDoc is 75 years old!”
Jacqueline Roscoe, IBD Nurse Specialist
Alana Carter, IBD Nurse, Taunton Surgical Centre, Ontario
“I have had the opportunity to use IBDoc® within a community GI practice. It is a promising clinical test to obtain fecal calprotectin results with no delays or turnover. You are notified that the results are posted within the portal, that displays not only the results but a trending graph. Patients have expressed that it is easy to use, convenient and gives them a sense of participation in managing their disease. They are given the kit in the clinic, which eliminates a trip to the lab to pick up sample containers and the trip back to the lab to drop off samples for testing. In the clinic, I explain how to use IBDoc® kit at home and how their results will be interpreted. I feel that fecal calprotectin results are part of the patients overall clinical assessment to help guide decision making in regards to disease activity and treatment.”
Sam Elfassy, MD FRCPC, Gastroenterologist, St. Joseph’s Health Centre, Toronto
“IBDoc® has quickly become an invaluable tool for close follow-up in my patients with Ulcerative Colitis. My patients have been much happier with the quick results and the convenience of performing these tests at home compared to taking the samples to the lab. I have appreciated the benefit of being able to make changes to their management based on both symptoms and the objective measure of fecal calprotectin without the two-week turnaround I was accustomed to. The process alerts me to new results and the portal stores previous results so I can easily track my patients’ progress.”
Pearl Avery, Lead Inflammatory Bowel Disease Nurse, Dorset County Hospital
“We have been introducing the IBDoc system slowly for the last six months and uptake has been really good. Originally we had planned to get patients to bring in a sample and we would do the tests in clinic. However, 95% of patients enrolled so far are doing the test themselves at home. The procedure is quite simplistic – I train the patients using the basic pictorial guide that is in the kit which roughly takes 10 to 15 minutes. It really makes it very simple. If I have any advice for other IBD nurses it is to do this early on in the consultation so that you have time to complete it and you can manage your time more effectively.”
Kathleen Surgue, Advanced Nurse Practitioner, Mercy University Hospital, Cork
“Patients love the IBDoc and have become reliant on it for self-managing their disease. Once they get started on it they don’t want to stop using it. I have even had patients enquiring about self-funding the tests because the cost isn’t huge for 3 – 4 tests a year. The feedback from the Gastro team and other IBD nurses is also extremely positive: Patients are more confident at self-managing, We aren’t having to chase results, Patients email if they get results they are concerned about, so it is a very safe system.”
Read the Patient Blog: IBDoc and Me
Having struggled with his disease for the last 25 years, Lee Stanley hoped that being able to use the IBDoc would help him to self manage the condition whilst expanding his extremely limited diet. After all, there is only so much chicken, carrot and rice that one person can take!
However, at the time there were no clinics offering IBDoc that Lee could access.
Lee has recently gained access to the IBDoc and is now doing a monthly blog to chart his experience over the next year.
Join Lee on his journey and see how he gets on performing his own calprotectin tests.
