Computer based technologies for IBD patients.

[anmonk]

Hello guys,
I am 23 years old. I was diagonised with Crohn's 3 years ago. During this period i have undergone 2 colon resection surgeries and i am currently on loop ileostomy. I competed my bachelors in biotechnology and had to take break from master's degree due to my illness. However, i dont want to sit ideal at home.
I have decided as a science student i must contribute my bit for the betterment of lives of IBD suffers like me. As i understand the magnitude of everday challenges that one has to undergo suffering from IBD.

I am working on creating computer based healthcare services mainly for IBD patients. Hence i want to know various problems that one has to face everyday having IBD. Since the nature of disease is different for different people i would like to have inputs from you all, friends. Your inputs are of great value because it will help me to create better computer based solutions which can be used by a wide majority of people.

Your inputs of problems can be anything. For example in my case i have problem of keeping a track of foods which flares up my symtoms, i have also found it difficult to keep up with my doctor appointments due to clash of the appointment dates with my exams. Like wise kindly share the different problems you face. We can help to improve the lifestyle of our IBD friends.
Kindly share the news to your friends, we can make this happen. Thank you friends

 

[ronroush7]

I sometimes make it difficult scheduling my different medication

 

[Robrich]

I think it is very important for IBD patients to settle into a daily routine.
Taking meds and supplements at the same time every day.
Having a list of meals and ingredients that are safe. If you eat out or eat take out have a list of what places and menu items you trust.
Go to bed and wake up at the same time
Keep a list of stressful situations you need to avoid.
Does traveling help or worsen symptoms.
Sometimes it's good to get away esp if you have stress or other environmental triggers in your life.
Other times it worsens things as you deviate from routines, diet, support systems, are exposed to negative environmental influences or bacterial or just push yourself too hard.
Get regular exercise.
Keep track of when you are doing well and when you get flares and contrast with significant events or changes in your life.
Sometimes patterns emerge that aren't obvious in the short term but over years you can often see correlations

 

[Devera]

Last check-up with my GI, he asked me how I've been the last week. Have I had any stomach ache? Any diarrhoea? Side effects from the medications? How about energy levels? Eeeeh... Not sure, I don't think so, can't have been that bad if I can't recall... My mind can be really foggy sometimes!

It would be really helpful with a simple way to keep track of what you eat and how you react to that, bouts of pain, BMs, good days, bad days without having to bring a notebook with you at all times. I swear, my trusty bag is already filled beyond its limits, there is no way I am digging in there to find a pen, and discovering trends from browsing through pages of a paper diary is not that easy. I would love some kind of website/phone app combo which lets you put in things like I've mentioned, then gives you statistics/trends/history based on what you have recorded. So for instance, before a check-up, I can look up and see that four days ago, I had a bout of D, but that was expected, since I had been eating something I consider unsafe the day before. Some stomach pain, but not much. Energy levels low. No new symptoms. A calendar function for keeping track of doctors appointments, scheduled infusions, bloodwork and so on. Feeling a bit worse? No wonder, you're two days away from your next remi infusion. A list of medications you're on. A checklist so I can check off that I actually remembered to take my pills this morning.

Yeah, the nurse/control freak in me basically wants an electronic patient journal system for myself.

 

[ronroush7]

Last check-up with my GI, he asked me how I've been the last week. Have I had any stomach ache? Any diarrhoea? Side effects from the medications? How about energy levels? Eeeeh... Not sure, I don't think so, can't have been that bad if I can't recall... My mind can be really foggy sometimes!

It would be really helpful with a simple way to keep track of what you eat and how you react to that, bouts of pain, BMs, good days, bad days without having to bring a notebook with you at all times. I swear, my trusty bag is already filled beyond its limits, there is no way I am digging in there to find a pen, and discovering trends from browsing through pages of a paper diary is not that easy. I would love some kind of website/phone app combo which lets you put in things like I've mentioned, then gives you statistics/trends/history based on what you have recorded. So for instance, before a check-up, I can look up and see that four days ago, I had a bout of D, but that was expected, since I had been eating something I consider unsafe the day before. Some stomach pain, but not much. Energy levels low. No new symptoms. A calendar function for keeping track of doctors appointments, scheduled infusions, bloodwork and so on. Feeling a bit worse? No wonder, you're two days away from your next remi infusion. A list of medications you're on. A checklist so I can check off that I actually remembered to take my pills this morning.

Yeah, the nurse/control freak in me basically wants an electronic patient journal system for myself.

Good idea.

 

[esther_m]

Hi anmonk, great idea!! I agree with all the requests so far and would add:

- if you make a phone app, please put a price on it because I hate ads
- I would envisage something calendar based (I currently use my phone calender to record symptoms etc) from which data / trends / info can be extracted on a particular topic (e.g. energy levels) -- so I would suggest that the checklist for (that allows you to enter what symptoms you had and etc) be fully configurable, because what some people call diarrohea, others might call diarrohea type A ... etc.
- it should allow reminders and alarms, like a normal calendar
- it would be easy to end up looking cluttered, so will be important how you prioritise entries and views
- special request: a motivational proverb / chronie pun / meme to pop up every day and add some humour
- also a way to store test results, e.g. so I can track my iron levels, bloodwork, blah blah
- scope to comment on emotional health as well as physical (e.g. choose a mood emoticon)
- can it make graphs? AND how about this: graphs showing correlation??? That would be so awesome because you know when you start a new supplement and you don't know if it's helping you? If you used least-squares resgression or other econometric modelling technique, you could even factor out the ups and downs caused by other things! Think how awesome that would be ...
- if it's a phone app, sync information to computer (because once you comit to entering it, the last thing you want is to risk losing it)
- medication budget? Not such an issue for some people, but huge issue for others

That's probably a big enough wish-list to start with!