When do YOU know you're unwell?

I don't think I am unwell until I have persistent abdominal pain, low grade fever, flu like symptoms (including fatigue) and more than two watery BMs a day. Otherwise, I just get on with my life. UC is a disease that can eat up way too much mental space, so unless I am actually feeling unwell and clearly showing signs of heading toward a flare, I consider the other stuff (runnier stools, a bit of mucus, etc) as just part of the day to day up and down of remission. I do think you have to find a way to manage both your gut and your head with IBD.

Fevers, even low-grade ones, always bother me, because I had them for so many years with my Crohn's. Severe urgency, going to the loo multiple times in an hour, cramping which feels like my guts are trying to forcibly exit my body, and bleeding which is more than few specks on the toilet paper also bother me. I actually very rarely have bleeding, so when I passed about a teaspoon's worth a few days ago I freaked out a bit - it hasn't repeated itself since then though.

I've had a new and fun symptom of rectal pain lately. Almost managed to convince myself I had an abscess, but I don't think it's that anymore: I just think my rectum is sore. I can relate to the worrying part: I would have blood/stool tests every month if I could. If everything was normal for a year, then I do think I would relax - but right now I just can't.

It has changed the longer I have this disease. At first it was blood, mucus and multiple trips to the bathroom. If I had any the urgency that I couldn't hold in longer than 5 minutes I would considered myself unwell and finally start looking into controlling it. Well as time has passed it has seemed that my tolerance for this disease has decreased, I think I'm just getting sick and tired of dealing with it and have no patience for it. So now I start changing things when I have more than 2 trips to the bathroom in a day, it isn't formed at least partially or when I see any kind of blood. I tend to see bright red blood a lot (1-2x a week usually), I have a highway of hemmies down there. So even when they flare up I look to immediately control those badboys. So like many with this disease I used to ignore the small symptoms in hope they would just get better, but now I immediately go into attack mode at the very first sign of them. I have lived with way too many lingering low symptom flares for months on end, that I just don't have the patience to go back to living like that anymore (not that I really have control over that) but I try to stamp out anything that appears to be the start of something I have had enough of.

Thank you so much guys, that's inspirational.

My biggest problem is MONITORING MONITORING MONITORING!

I am constantly monitoring my bowel movements, even when I in remission - and any slight differences bring me anxiety and then things get worse. I could tell you how many bowel movements I had on any given day and how well formed they were.

I just got my Fecal Calprotectin results back, it was 366; which isn't bad as I have been in a flare that started at 660 two months ago. I am thinking of having a scope done even though I had one last year; the anxiety always drives me to seek reassurances - even though the bleeding has stopped and stools are largely formed.

I know I am unwell when I get rectal soreness / pain, bleeding and mucus on it's own but it's almost as if I am looking for these symptoms each time I go to the toilet!

Help!! :(

Easy, I know how I felt before getting sick and I even sensed I still wasn't right even after learning my CD was finally in remission but it was a bit of a different feeling that's hard to put into words (due to still having IBS issues) so the only way I can explain it is my gut feeling literally tells me...just like when I first became sick, even though I was still having my nice normal looking BM's, when they started happening frequently and I was not able to hold them back, that's when my gut instinct told me there was something wrong.

Up until 2013, my freak out was the cyclical cramping for knowing I was unwell. I work in the operating room so I would not eat while working until prednisone kicked in. After 2013, it seems that I've had continued rectal inflammation. In Dec. 2013 I had pancreatitis followed by cdiff colitis followed by a flare and each required hospitalization. Since then, my symptoms have changed and I have a lot of anxiety at work because I haven't adjusted to my new normal which is nausea, tenesmus and painful rectum. I want my old symptoms back.

Haha... I think I am going through the very same thing. It's frustrating being so close, and yet so far. I'll take it, but I get all anxious when things are 'off'. Today ended up being a perfect 1 poop day. Weird.

@platnium - Sorry to hear about your situation. I remember 10 years of just trying to adjust life around various weird, painful and crazy symptoms. It was a difficult process. Getting up early, getting up late, working at night, not going out, working from home and so on... always trying to work around or even just through the bathroom and pain/urgency/discomfort. Having to 'plan' a simple trip to the grocery store drove me nutz. Worse was getting home and forgetting something.

To be honest you don't realize just how much this disease takes from your life until you get substantially better for a long time (remission) or perhaps through surgery. But it seems even both those do come with frustrations and the odd set-back.