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Data, Data & More Data

I just wanted to quickly share my thoughts on how important I feel it is to record pertinent data.

I was diagnosed with crohn's 5 years ago and it recently dawned on me that I can't actually remember much of my medical history for the past 5 years. Of course I can generally comment on how I've been but I can't remember, for instance, how many weeks in 2007 I was on prednisolone for; or when I first tried mercaptopurine. Thinking about this a bit more I realised that when I am asked at my regular clinic questions like "how many bowel movements do you have per day?" I cannot be sure of an accurate answer. Often I'd be influenced by how I'd felt in the last day or two because I'd simply forget what had happened in the days and weeks prior to this.

So when my latest flare-up began I decided to start recording some data. I am now 18 weeks in and I am far from getting over the flare-up, in fact it's worse! But, I feel empowered by always having a clear idea in my mind of the current state of my disease and I feel in a position to give accurate information to my consultant, which can only be a good thing.

Here's what I record:

Number of bowel movements per day

Bristol Stool number of each bowel movement and at what time of day it was passed

All medication taken (particularly useful to recall when I missed a dose)

Faecal Calprotectin results

Number of bowel movements per week including how many contain blood.

I pull all of this data into an Excel spreadsheet and chart the progress. I have a 7 day moving average trend applied to the number of bowel movements (I do this since I can have, for example, 0 movements one day and 10 the next).

Daily reference to this chart helps me to keep a close track of where I am, and allows me to spot when things are changing (for better or worse). It also allows me to answer the "how many daily bowel movements?" with startling accuracy. I can confidently say "well my average for the last 7 days is 4.8".

I'm new to the forum and I'd be really interested to hear what other information people record and what benefits others have derived from doing this type of thing.

Cheers for now.
 

Crohn's 35

Inactive Account
HI there welcome to the forum :bigwave: I never record but my days are usually the same, depending on what I eat or how much. I have been a crohnie for many years, I used to record but for me I just do the hit and miss. Glad you are joining us. Many people here from the UK...wonder why by the handsful lately? :shifty:


Glad you are here, hope to see you around the forum!
 

DustyKat

Super Moderator
Hi Minionaire and :welcome:

We have a diary in the wiki that offers suggestions as to what people might like to keep a record of...

http://www.crohnsforum.com/wiki/Diary-Inclusions

I must admit I have used the forum here as a way of keeping track of what my kids have had done, that is why the info I put in there is so precise.

I also ask for copies of all blood results, tests results, doctors letters and so on. I take all of these when presenting to a new doctor or going to casualty. I have them in a folder and separated into blood tests, investigations, hospital admissions, correspondence and past and present medication and their outcomes.

When the kids are flaring I do keep a diary as well specifically about their symptoms, like the the one in the wiki.

When I do take the folder and/or diary it has always been well received and the staff generally take photocopies of what they need. I think it also leads to a lot less repetition on my part as to their history and current problems.

Welcome aboard!

Dusty. xxx
 
:welcome:I started tracking my symptoms in June when I started have pain problems. Before that it was same old, same old like yourself Pen. I wasn't confident with the answers I was giving my doctor. I use excell and graphed the symptoms. Thanks, I didn't know about the Wiki info and I didn't think about tracking time and condition of BM. Gave me some more ideas. My last visit it made it easier to come up with some ideas to help. I ended up in ER because of the pain yesterday and it helped me remember and answer questions the ER doctor had.
 

xJillx

Your Story Forum Monitor
Hi and welcome! I keep track of the same exact stuff! I also record what I eat & drink. I am still trying to figure out safe and unsafe foods.

It is very helpful in monitoring my health and when I go on doctor appointments.

Thanks for sharing!
 
I have an app on my iPhone that tracks how many BMs, consistency, blood, urgency. It gives me a moving average weekly and monthly. I find it very helpful.
 
Whenever I go to hospital and they give me that form that says: "List all your previous surgeries/hospital admissions" I just answer : "Too numerous to mention". :ybiggrin:

I started being hospitalised back in the late 1960s and didn't ever keep record.
 
I have an app on my iPhone that tracks how many BMs, consistency, blood, urgency. It gives me a moving average weekly and monthly. I find it very helpful.
If you ever lost your phone, can you imagine what the person who finds it would think if they saw this? Hahahaha!!!!
 
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