Most Crohn’s Disease sufferers will have a long and winding medical history, made up of flare ups, drug regiments, and of course, invasive procedures and operations. From experience, the most jam-packed period is usually the first year or so after an initial Crohn’s diagnosis. However, when you get ten, fifteen, even thirty years down the line, trying to answer the questions of when were you first diagnosed, or what treatments have you tried can become a whole lot harder.
This is why taking some time to fully research and document a high-level medical history is something we should all do. Yes, it is a slightly laborious task, but it will be worth its weight in gold when you can provide your consultants with everything they need to know, without making them leaf through a biblical sized set of medical notes.
There are many different ways to do this, and choosing both the path of least resistance, and something that works for you, are key to making this as painless as possible. For some this will be a pad of paper and a pen, for others it may be a mobile device or a good app. Whatever you choose, now is the time to do this.
What to include in your medical history?
The goal is not to over engineer this. In its simplest form, it is purely a list of events from which you can quickly identify key dates or procedures. These can include:
- Date of initial diagnosis
- Dates and names of any operations
- Dates of any procedures e.g. colonoscopy, iron infusion
- Date ranges and names of Medications
- Dates/ranges of any flare ups
- Dates ranges for periods of remission or non-drug use
How far back should you go?
The short answer is simply; as far back as you can.
Of course, if you can take it right back to the month you were diagnosed, then you are winning. But do not despair if this is not the case. Excluding the date of your initial diagnosis, if you are able to get at least the last 5 years covered, you are off to a good start. Anything beyond that (bar major operations), shouldn’t be too relevant in the here and now and any scans or tests will likely be re-run.
If you genuinely have no idea, or are trying to flesh out your history a little, reaching out to your GP for help is another good step. They will be able to access your medical note and report back on any key information you are seeking. Once you have the foundations, adding to this moving forward should be a relatively painless process, especially if it is already on your phone and ready to go.
What Tools are available?
Having the information at your fingertips is the goal here, as the brain is notoriously bad at remembering this kind of information. Thankfully, there are literally hundreds of apps available on all smart phone platforms for just this kind of thing. Ones I have used are:
- Good old-fashioned pen and paper
- In built notes app
- Medical History in contact details (Apple)
- Notion
- Trello
Top Tip: Go for something that stores the data on your device, and not in a cloud. The last thing you need is an internet black spot to disable your ability to access all of the hard work you have put in to this.
An example of my own Medical History
This has been copied and pasted straight from the Notes app on my iPhone. It is therefore exactly what I am using at the date of publishing this post.
- Diagnosed with Crohn’s Disease – June 2008 – Aged 19
- Put on Prednisolone to manage symptoms – June 2008
- Started Taking Mercaptopurine – June 2008 – Mid 2009
- In Remission for about a year – Mid 2009 to Mid 2010
- Diagnosed with stricture of the small bowel – Mid 2010
- 10cm Resection of small intestine from Terminal Ileum – Feb 2011
- In Remission for over 6 years – Feb 2011 to June 2017
- Anal fistula surgery (seton implanted) – 13th June 2017
- Anal fistula surgery (fistula laid open) – 18th July 2017
- Crohn’s Flare up – 8th October 2017
- Put on Prednisolone to manage symptoms – October 2017 – November 2017
- Started on fortnightly Injections of Humira (Adalimumab) – 17th November 2017
- Moved to bio similar Imraldi (Adalimumab) – Late 2018
- Stopped taking Imraldi (Adalimumab) as I Developed Anti Bodies against it – (30th October 2019)
- MRI scan of the small Bowel – (4th November 2019)
- Iron Infusion (low ferritin levels – 5) – (12th November 2019)
- Colonoscopy – (31st January 2020)
- Operation to locate suspected abscess and EUA – (9th March 2020)
- Operation to drain abscess and EUA – no signs of active Crohn’s – (23rd June 2020)
- Crohn’s Flare up – (27th January 2021)
- Started Taking Steroids (Budesonide) – (29th January 2021)