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Ulcerative Colitis
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Posted 1/7/2019 3:00 AM (GMT 0)
Have you heard there's a great new app that can control our colitis so we no longer have to crap ourselves in public?

Me neither.

But I was wondering if any of you are using/have used in the past some kind of poop tracking app i.e at bare minimum where you can record daily frequency on ph that feeds into a overview graph or something. Currently I keep a track in my notes in my ph but its a little tricky to get a big picture view. Because I (supposedly) have IBS and UC I feel like its easy for UC flare to creep up thinking it's IBS, I want to get better at jumping on to higher dose of meds etc sooner and I'm also going to be testing out a few things diet wise that would be good to try and see if there is any co-relation. I've googled and a few come up but some recommendations from UC'ers would be great.
Posted 1/7/2019 4:29 AM (GMT 0)
No...i know my ass better than an app...or a doctor, for that matter.

q
Posted 1/7/2019 7:06 AM (GMT 0)
so if you don't mind me asking if you're not flaring are your poops reasonably predictable?
Posted 1/7/2019 4:47 PM (GMT 0)
I've seen a number of questions on apps. There are some basic symptom trackers, but nothing all of that good.

Why track? Just know that the only certainty with UC is actually uncertainty itself. UC loves to throw lots of random things at us, a good day followed by a bad day and lots of uncertainty. It can be super frustrating and drive our anxiety through the roof (a common refrain: my day can be made or ruined based on my first couple bms of the day)!

Even in a remission my bms vary day-to-day in firmness (different varieties of solid from picture-perfect to looser with wavy edges). Occasionally I will go an extra time than my normal, sometimes for consecutive days. That is all perfectly normal and expected for us. Those with UC, myself included, are a very anxious bunch and we look at anything different and worry it is a sign of an impending flare. We look at our leavings in the toilet bowl and try to read the future, much like a fortune teller with tea leaves, and with probably about the same level of accuracy lol.

I have a mantra for you: flush before looking. Keep your bum on the bowl, reach back and flush. Then get up and wipe, and flush again.

I do not want to eliminate all due vigilance and pooh pooh all concern with having a chronic illness though and looking out for impending flares. What is important is this: urgency, total bms a day, and blood on tp when wiping. If there is a spike in any one of those things, and it stays elevated for 4-5 days then be concerned. One off bad days and randomness are a part of this illness but a new and consistent trend cannot be ignored smile

But you know, if the average healthy person looked at poop as much as we did then they'd see a lot of random variation as well. They don't look and don't care or notice. I'll make a point to pointout (tenderly a bit joking to her) that my wife is pooping more than me in that day (which happens occasionally), "seriously honey, I'm the one with bowel troubles and this is your what 2nd or 3rd time? lol." She has days like that too and no bowel troubles at all, variations even among normies.
Posted 1/8/2019 6:35 AM (GMT 0)
All good points. I don't actually look at my poop but I do keep a track of how many times I go. Frequency and urgency are my ongoing issues. its this annoying IBS and UC thing. But after my other post about that & advice it made me realise perhaps its UC flare vs IBS so I'm upping meds.
Basically life got/is pretty crap with frequency, urgency, anxiety & I'm kind of annoyed at myself for not realising, its like it sneaks up with me thinking IBS then bam I'm realising its taking over my lfie and I'm actually in a flare just not with blood/mucous. This morning I went 7 times and had to take 2 immodium to go to work.

I was thinking a tracking app might help me realise sooner when things are worsening or ongoing bad or if theres any diet related things once I actually get around to trialling that.

The other night we stayed in a hotel with the family and I was like yay the next morning only went twice going to be a good day for travelling back....then just before we had to check out I started going every 10 mins. FML

How much asacol do you think I should be taking? I've upped it to 4MG. I've started colifoam but think I need to get into the enemas. Which are a PITA in comparison, colifoam is easier.
Posted 1/8/2019 3:28 PM (GMT 0)
It really depends on formulation/brand, 4.0-grams a day is fine for some oral formulations/brands, while others say 4.8-grams max. Have you done the 4.0-gram mesalamine (rowasa/salofalk/pentasa enemas) enemas in addition to the oral? Ideally you should be on both oral and rectal-route formulations before going up the medication ladder.

Otherwise you need to start thinking about thiopurines (azathioprine/imuran or 6mp) or biologics (remicade/humira).

7-bms a day is a lot, a severe flare. You should likely be on pred and transitioning to stronger dosages, and/or more meds.
Posted 1/9/2019 7:51 PM (GMT 0)
I have a simple counter app I use. It can be saved with a name, and for a long time I kept faithful records. I have been in a flare since October 2017, and frankly I haven't been tracking anymore because I got tired of doing it. I might make a note if I see an uptick in blood, and then if it continues, I start tracking again. I think one of the things I learned from doing it was not to freak over the off day or two because I could see the ebb and flow of things.
Posted 1/10/2019 11:31 PM (GMT 0)
I use an app called Cara. You can add what you eat, type of poop, symptoms, medications etc and can compare graphs.

It’s useful as a diary and to pinpoint bad days or figure out a way to optimize yourself!
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