Ulcerative colitis - Carenity members tell their story
Published 18 Dec 2019 • By Baptiste Eudes
Being diagnosed with a chronic condition can turn a patient's life upside down. Read on to discover the stories of Carenity members living with ulcerative colitis.
Survey conducted in France, Italy, Spain, Germany, the UK and the US with 185 Carenity members.
On average it takes 2 years and consultations with 2 doctors before a patient is properly diagnosed with ulcerative colitis.
Carenity members living with ulcerative colitis spent an average of 2 years to get a diagnosis. The symptoms they experienced were principally abdominal pain and blood in their stool.
Diarrhoea | Nausea| Fatigue | Weakness | Fever| Constipation | Abdominal pain
All of the symptoms had an impact on patients' daily lives. Social life was particularly disrupted by the illness, as well as certain physical and leisure activities. But the worst aspect for most respondents was chronic fatigue.
Chronic fatigue - 74%
Social life - 69%
Leisure and physical activities - 66%
Love life - 59%
Work life - 57%
Physical pain - 57%
Family life - 51%
The fact that our respondents waited on average of 2 years between the onset of their symptoms and their diagnosis, cannot be written off as simply a question of being misdiagnosed one or several times: 65% were not misdiagnosed before discovering that they had ulcerative colitis. Still, a few of them were misdiagnosed with the following conditions:
Hemorroids| Irritable Bowel Syndrome | Chronic Gastritis | Stress | Chronic diarrhoea| Anorexia| Anal Fistula
Before being diagnosed, 38% searched for information on the Internet trying to find a diagnosis for their symptoms, and only 10% tried alternative medicine to treat their symptoms.
Being diagnosed with a chronic illness can completely upend a patient's life. Everyone experiences the fact that an illness will be long-lasting in a different way: some are relieved to put a name on their illness and start treatment, others feel frightened or shocked. In the case of ulcerative colitis patients, the majority felt relief.
It was a relief - 36%
It was a shock - 27%
It wasn't a shock, I was expecting it - 25%
It was scary - 24%
I didn't feel anything in particular - 12%
I don't remember - 5%
The role of the health professional who delivers the diagnosis is extremely important. Sometimes, a patient didn't feel sufficiently listened to or informed, but others are grateful to their physicians for accompanying them in a difficult moment. For most Carenity members living with ulcerative colitis, their health care professional was seen as an ally. Most patients appreciated their physicians' gentle way of revealing the diagnosis to them.
51% - Very calm
49% - Took time to listen to me
28% - Empathetic
8% - Suggested some sort of emotional support
19% - In a hurry
15% - Cold and distant
10% - Didn't seem to care
10% - Used complicated or overly scientific jargon
Following diagnosis, 36% of patients felt determined to fight the illness, 49% felt relieved to have a diagnosis and 15% felt confident about the future.
39% felt anxious, 23% discouraged, 19% alone, 22% lost, 17% angry. 18% felt misunderstood by the people closest to them.
Many thanks to all the participants of this survey who took the time to share their experience to help improve depression diagnosis for other patients!
Do the results of this survey line up with your experiences? Why not share your own experiences with other members in the comments below?
Survey conducted in France, Italy, Spain, Germany, the UK and the US with 185 Carenity members living with ulcerative colitis