Keeping a diary

[sibelius]

Hello,

I was just diagnosed with Crohn's in January, after several months of enigmatic symptoms (loss of appetite, weight loss, anal fissure that is now an ulcer, daily abdominal pains). It's a relief to know what was causing it all, because even though it's getting progressively worse, despite professional care, at least now I can take an active stance against it.

Which brings me to my question...

I've been having abdominal pains every day, and for the past several weeks, I've had several each day that are so severe, I can't do anything else when they happen. I've read/heard that people often alter their diets, but I'm not quite sure how to do that. I seem to get the pains randomly throughout the day, so if I happen to get one while I'm eating, or right after I eat, how do I know if it's related to the food, or if it's just a coincidence that I happen to have the pains at that moment?

Some people have suggested keeping a diary to figure out trends -- what do you include in such a diary? Whenever/whatever you eat, whenever you go to the bathroom, whenever you feel a cramp? Do you carry it around with you throughout the day, or do you just write everything down at the end of the day? How long do you keep a diary?

I'm sure a good answer to my questions would be, just start a diary already and see what you find! Easier said than done, of course!

- Sam

 

[Jeff D.]

I write what I eat, when I get a cramp, when I get blood, when I have pain in my butt etc. I now do this mostly in my head because I know how I react to most things so I can remember new foods that bother me. I like to use one of those really small notebooks that you can fit into your back pocket, but it has to have a binding or else it falls apart in minutes.

Also, I want to give a warm welcome to the forum. I wish you the best of luck in getting better.

 

[sibelius]

Hi Jeff, thanks for the welcome. The hardest part for me is when it gets in the way of school / work. I've finally gotten around to telling some of my professors, because I started off thinking that I simply wouldn't let it change my life, and now I'm realizing that it doesn't quite work that way. I wasn't really so scared in the beginning; I just didn't know what to expect, and assumed that there wasn't anything to expect.

 

[Jeff D.]

Yeah I always tell my professors. If I take off running to the bathroom I would rather them know of why I'm doing it instead of them taking it out on me with my grades. Try not to worry and get too stressed out because that can only make things worse. I wish you the best of luck.

 

[Rosemarie]

I've been keeping a diary since I was diagnosed (jan.05)
It's been the best tool I have to help my docs and myself understand my symptoms and and the pattern of flares. I try to write in it at least 4 times a week. If Im having a really bad day, I write about it. If I'm having an abnormal amount of BM's... or a new symptom... or I eat something that doesnt agree with me, I write it in my book. I bought one of those small daily agenda binders with a place for detailed daily notes, and calanders of each month. It's really helped me understand what triggers a flare for me. My docs encourage this, but they are always reminding me not to dwell on it TOO much. Theres no need to carry it around with you everywhere you go.... just keep it somewhere you'll see it so you dont forget to write in it.

 

[BWS1982]

See, I have a scarily accurate and efficient memory, almost to a fault (I hold grudges too long and have a hard time getting over tragedy etc...), and I tried the food/symptom diary and it was practically useless....my symptoms are so sporadic and no correlations could be drawn any better than with my own head. Foods sometimes exit out of me looking much healthier than lately and then the same food will give me bloating the next week...a diary doesn't do much good in cases like that and I have a hard drive-like memory soooo...I don't do much writing. I'm that wierdo who remembers conversations and images from when I was only a few years old....as Monk says it's a gift and a curse.

 

[Kev]

Hey Sam.. Welcome to the forum... in case I didn't say it before someplace/where.

see... unlike some others, I don't have a 'hard drive' memory.. more like a hard time memory... I have a hard time remembering things.. ;-) It could be my age, it could be drug interactions, it could be IBD. Anyway, between my poor memory and the vague pecularities of this darned disease, I started keeping a diary... basically a spread sheet... and in the begining, I kept it religiously, as I had a steep learning curve... what foods did what to me, what effects all of the drugs were/might be having... how my body was reacting, whether my IBD was getting better or worse (and I've found that can help, cause at times my perception of my health was more dependant on the mood I was in at the time AND not really an unbiased assessment of my symptoms - like, there are times when I really get tired, or fed up with just the 'whole' thing, and it makes me 'feel' worse than I really am; or vice versa.. Looking at the facts can often turn things around for me emotionally; AND conversely; protect me from myself the times I'm feeling really good 'emotionaly', but physically i'm in the 'crapper'. It's easy to overlook the 'reality'... take chances on foods, activities, other stuff that I shouldn't really be doing given my 'physical' circumstances. Know what I mean?)

Anyway, I just note what I eat... well, really.. anything taken into the body. My meds, vitamins, supplements, etc.. I found out I was sensitive to lactose, AND that lactose was hidden in lots of stuff I didn't suspect... like margarine, orange juice, vitamins... I was also able... thanks to a clinic drs suggestion and the website of a drug manufacturer... to literally wipe out the severe headaches I was getting from a certain drug... thanks to my diary.. I also recorded (past tense) fevers... like the actual 'degrees' AFTER ER doc asked me how hi these were.. and I couldn't answer... Why? So now, when I go to my GI or clinic, to talk about how i'm doing, etc... I can 'brief' myself prior... Like, it been X# days since my last bleed... or I avg X# trips to the bathroom... I've lost/gained X# lbs.. That sort of stuff.. I dont' record what I eat daily anymore, unless I add something new to my diet.. or my symptoms or meds change in anyway. Thats why 'fevers/degrees' is past tense.. hadnt' had them in quite a while. If they do come back... well, you get the idea. And I dont' focus on it.. like it isn't the big thing in my life... more like brushing my teeth.. Just do it and forget about it

 

[sibelius]

Thanks all -- I don't take off running to the bathroom too much (only a handful of times, it seems, most days), but I get these cramps. I already had a hunch that they came mostly at night.... here's my evening yesterday, after 5:00. (I work in the evenings from 6-10).


5:35 - sharp pain (5 minutes)
5:45 - sharp pain (5 minute)
6:25 - sharp pain (5 minutes)
6:45 - sharp pain (2 minutes)
7:05 - sharp pain (5 minutes)
9:05 - sharp pain (what happened during the 2 hours between? I must have forgotten to write some down...)
9:20 - sharp pain (5 minutes)
9:30 - sharp pain (5 minutes)
9:50 - sharp pain (5 minutes)
10:50 - sharp pain
11:10 - slight stabbing pain
11:15 - minimal stool, abdominal pain, no blood

What a night...

I just started metronidazole yesterday, and today I had almost no pain at all -- except for 2 or 3 times during the day, and quite a few times at night. But 2 or 3 times during the day is much better than the 8 times (plus 40 minutes of exhaustion *right in the middle of my favorite class*) yesterday before 5:00. Hopefully the metronidazole will help get me into remission. My first flare-up is still stronger than ever, after about 6 months now...

 

[Curly]

Hi, I keep a diary at the moment as I'm having such a severe flare-up. I tried in the early days to make sense of things by keeping a diary but found that I couldn't figure it out. Over time I got to know certain foods that send me off to the toilet such as rich/high fatty foods.

My diary at the moment is to look at symptoms in relation to taking in (I reluctantly say eating as I'm not!) certain soups or rice pudding, yoghurt (soft food) and also calories I'm taking in as confined practically to liquids. I also write down the time of pain as that tells me which part of my gut is narrowed at the moment.

I think it's useful to work out what information would help you be more informed or make choices/decisions and work from there!

Good luck.

 

[Colt]

I keep a calendar on my wall. Having it on my wall makes it easier for me to remember to do it every day.

Yesterday reads: P5 - - R minor bleeding with BM.

I rate the worst pain of the day from 1-10 (0 being no pain but that doesn't happen), - for consistently being in pain around the worst level throughout the day. - - for pain that comes and goes in severity. R for rectal irritation (swelling, soreness, etc), N for severe nausea, J for severe joint pain, D for diarrhea, C for constipation, and then a little extra note if needed.

On the 14th I had: P10 - RCN 2 tears in rectum near outside, 6 mouth ulcers now, small amount of fresh blood after stool.

 

[BWS1982]

Hey Colt, I wonder now that I'm working almost 40 hours a week again at work and spending more time there if they'd mind if I did your calendar thing at my cubicle for my symptoms. lol.:eek2:

 

[Wiles]

I'm not very good when it comes to things like that. I even struggle to take my pills on time.

I used to keep a diary all the time, because it was required for the humira study I was in. After I was done there, I quit doing it. I try to take a mental note when things are particularly bad. Sometimes I remember, sometimes I don't.

 

[Kev]

well, keeping a diary is beneficial, but taking meds is essential. I've become so very 'absent minded' post illness THAT I bought myself a pillcase calendar. It has compartments for every day of the week.. I check it constantly to ensure that I've taken my meds... from 1st thing in the morning to the last thing before bedtime.

 

[Wiles]

I think I need one of those electrical doggy collars on a timer, so it will zap me until I take my pills!

I'm not as bad as I used to be though, I am managing to get them in every day.