Mine is a bit of a saga. Had IBS for a very long time, off and on. The worst period of flare up (until recently) was one in 2012 just after my dad died. That wasn't severe compared to many of you, but it was bad enough to make me lose my confidence in going out once I had been caught on a bus. I wont go into details.
Then everything grumbled along relatively ok until last summer. I got an ear infection and went to the local walk-in centre and was given some antibiotics. Five days later, explosive diarrhea with blood etc. This went on for four days - obviously the antibiotics were stopped, but the damage was apparently done. After that first bout of four days, I went on a bizarre cycle of three or four days of not going to the bathroom at all (or very little), followed by an evening of diarrhea. And then again. And again. I saw the GP, and various stool tests were done - all negative. The blood had gone away quickly, and no-one found out where it had come from - possibly stomach lining I guess or maybe internal piles even.
Two months passed, and life was a mess. This cycle was ruining life. I was referred to a specialist, but it was going to take some time, and so my mum paid for me to go to Bupa. Neither of us had ever gone private before, but I have bipolar too, and things were pretty bad. Just before I saw THAT specialist, a FIT test had been done, and come back negative. A good start, thankfully. I ended up having a colonoscopy and an endoscopy. The only thing abnormal found was more acid in my stomach than there should be and a hiatus hernia. Nothing abnormal in the colonoscopy. By this point, the specialist had put me on 10mg of Amitryptaline, which seemed to help with the diarrhea episodes, and certainly reduced the pain that came with them. Unfortunately, the scopes themselves started everything off again, and it took about two weeks before my stomach returned to anything like it's normal state (normal for me, that is).
That was the end of October. IBS was declared (presumably exacerbated by the antibiotics). Since then, things have limped along. I seem to have an evening of D around every three weeks. Inbetween that, I often have pain before going to the loo, but it disappears once I've been. No matter whether I'm going normally or with D, I tend to go around two to three hours after my main meal. Often over several visits lasting an hour. That's not abnormal for me. Even when I was a kid. And I assume the D is indeed IBS as it follows that same pattern.
But the biggest problem is that knowing what it ISN'T - and, don't get me wrong, I'm pleased to know it isn't some of the things mentioned by the doctors last summer - or even knowing it's IBS doesn't help put it right. Sure there is peace of mind in knowing that the FIT test and the colonoscopy were clear (if it were one and not the other, I might have questioned something had been missed), but it doesn't help on a day to day basis. And having D on a seemingly random basis, not triggered by anything particular that I eat (or don't eat), means you can't really take Immodium. After all, when I do have D, it's over and done with in an hour or so. It doesn't go on all night, or into the next day. But the constant worry makes life hard work - what time will I have to have my main meal so that I've been to to the loo before I go to the theatre tonight? How am I going to arrange my meals when I'm on holiday? As examples. "Luckily" in the context of this, I don't work as I have severe arthritis too. Otherwise it would be more of a nightmare
But I was wondering how others of you with a similar scenario "cope" and manage to work your lives around the IBS? I know some of you have the IBS-M variant, which I guess is the nearest to mine (there are often two or three days a week when I don't go), so how do you make yourself reliable for the things you HAVE to do on a daily basis - or even when you go away, or go to the cinema, etc. What do you do to give yourself some security, if only for special occasions? I am doing a gig in March (I only do a couple of year) and I am really concerned this year that IBS could really screw it up. My thinking at the moment is that I should live on crackers for two days before it!!!