Being a patient used to be a lot less complicated. Once you had an inflammatory bowel disease (IBD) diagnosis and the medication had been prescribed, that was it. If it worked, fine, and if it didn’t there were few alternatives apart from the surgeon’s knife. Nowadays it is a lot more complex. The treatment options are growing exponentially and the advent of Dr Google enables patients to do their own research. This may be seen as a blessing or a curse.
My diagnosis of Crohn’s in the late 1970s was somewhat prolonged. After an initial delay due to “not wanting to talk about bodily functions”, I went and saw my GP, who was clueless. Over the next eight months I was told I had “nerves”, “a spastic colon” and given Nacton, a drug used to treat peptic ulcers! My saviour was a locum. Four weeks later I had a definitive diagnosis and my long-term relationship with steroids commenced.
Back then, when I wanted to know more about Crohn’s disease the only source of information was a large medical tome that someone had lent my girlfriend. We didn’t learn much and I, for the most part, remained in blissful ignorance. No booklets to read or IBD nurses to quiz and, of course, no internet to consult and potentially scare myself with.
Diagnosis can be a time of very mixed emotions. I have seen patients express feelings of shock, total devastation, outright fear or maybe anger but tempered by the relief of finally knowing what is afflicting them.
A while ago I read a post from a newly diagnosed IBD patient who had become obsessed with researching her condition. She was clearly very distressed having delved ever deeper into the subject and was finding it difficult to come to terms with what she had found.
To see what she was up against I searched using “Crohn’s Disease”. There were over 900 million matches ranging from basic questions to highly complex research papers aimed at medical professionals. With so much to choose from it is not easy to decide where to start, and equally important, where to stop. In an ideal world there would be a secondary filter attempting to further tailor the content to your needs. My rule of thumb is start with information from trusted sources. In the UK that would be NHS pages and documents.
The top five Googled questions gave a good insight into people’s concerns:
- Is Crohn’s disease serious?
- What is the life expectancy of someone with Crohn’s disease?
- What is the main cause of Crohn’s disease?
- What does Crohn’s pain feel like?
- How do they test you for Crohn’s disease?
Or, in other words: “is it bad?”; “will it kill me?”; “how did I get it?”; “is it painful?”; “how can I be certain that’s what I’ve got?”
The symptoms of any bowel disease are unpleasant and not the subject for polite conversation. For many, a reticence to discuss them, the thought of having a colonoscopy or fear of “what they might find” will drive them online before seeing a doctor or getting a diagnosis. The scope of any search will be wide as many symptoms are shared across a range of diseases so the search will not be confined to a specific condition. It would be all too easy to come up with the wrong self-diagnosis, adding to one’s distress.
Support forums, commonly found on Facebook, are another source of information but vary wildly in the quality of their contents and participants. Some contributors appear to delight in trying to scare new members with horror stories or playing “symptom Top Trumps”. Getting the tone of responses right is a balance between being sympathetic, answering honestly and trying to keep positive. Giving medical advice is definitely to be avoided. Some of the smaller groups may provide the most balanced views as it is easier for their administrators to monitor posts for unsuitable content, malicious contributors or those who are simply trying to sell some miracle cure or product to people who are at their most vulnerable.
It needs to be borne in mind that forums are heavily weighted to the negative. The clue is in the name. They are somewhere for patients to turn to for help when they need it. There are far fewer posts saying how well members feel or that they have achieved remission. The overall impression may suggest that there can be no light at the end of the tunnel but many of us know that not to be the case.
If you are reading this and experiencing bowel-related symptoms I would urge you to go and see your GP as soon as possible. Forget about the embarrassing details, they will have heard/seen them all before. If you are going to ask Dr Google then do so sparingly. Don’t automatically assume the worst and try to use the trusted sources I mentioned before.
As a footnote, a word of caution, when reading about medical conditions, especially if you stray into the world of academic papers or are reading a consultant’s letter, there will be words and phrases that sound terrifying whether they are or not. It can be a steep learning curve. My favourite word in follow-up letters is “unremarkable” – nothing worth reporting. May you live in unremarkable times!