NCOT

I've mostly been hanging out at the UC and Ostomy forums. I still come here of course, but at the moment there's not really anything I can respond to: the questions asked are so specific and outside of my experience... :-/

I had a bit of a slump last week, but I think I'm out of that now. Basically I was feeling like physical crap and having some bad episodes of diarrhoea and painful cramping. I began worrying, especially about the 'C' word. My depression started returning. Basically, I could feel myself sliding back into the same rut I was in before surgery.

I'm talking to my family again (did I tell you this? >.>) and so I drove my mum over to her friend's house yesterday and spent the day there. We had a nice time, so that helped. My bowels are a bit better, maybe because I've been eating more carefully. I'm impatient to get better and eat a wider variety of foods, but at least I don't think it's Crohn's anymore. I need to find more stuff to do, as I'm not working, and I don't like going out unless I have something to do: otherwise I'm just aimlessly wandering around and that's almost as depressing as being stuck in the flat.

In short, physically I'm probably doing about as well as can be expected 5 weeks after surgery. But I'm in limbo with my life and a bit clueless about where to go from here, to put it mildly.

How about you? How are you doing?

I think that is so sweet... sorry if you don't like me getting mushy on ya. But it's nice that people are looking out for one another like that.

Hopefully Kazbern just got bored with us and she's doing fine, but I really don't know. I really think I'm still in remission too...let's hope we can both last awhile.

HW was my lifeline when I was first diagnosed and didn't understand anything about Crohn's, and there have been many supportive folks including you who have helped me through very tough times. I do think you have had more positive impact with many folks then you realize. I am not one that wants things sugar-coated, and you have often helped me sort out facts.

I hang around now mainly to see if I can help others, but I do find myself posting less often. I remember when I was new to my Crohn's diagnosis, I couldn't understand what a "flare" really was. I realize now that is because I always have IBS and this doesn't mean the Crohn's is active. That confused the hell out of me for many years. So I though remission was symptom free, which for me it is not, and probably never will be. I guess I'm just a slow learner;-) Anyway, I do think you have those who criticize your pessimism, but I don't see you that way. You are too hard on yourself and you have much to offer. But going out and living life is necessary too.....how's that for a disconnected rant?

I'm braindead now, but just wanted to say thanks, gumby and Rose. @gumby - I don't think I really knew what a flare was either. I always had symptoms, mainly diarrhoea in the early years. I was confused by the fact my symptoms never went away: everything I read about Crohn's online suggested it was a relapsing-remitting disease with periods of remissions and flare-ups. But I never seemed to particularly flare or remit. I asked an IBD nurse about it once, but she was absolutely useless: plainly didn't have a clue herself.

Several years later I learned that about 10% of people with IBD have a chronic, unremitting course. Even that I only stumbled across by chance, on gpnotebook.com or something. By the way, I never thought it was IBS. That was about the only thing I wasn't confused about.

@Rose - I didn't think about old threads being archived on google. It's good to know that non-HW members can still benefit from my sheer pearls of wisdom :p

Ah, I was talking about the early years of my disease, when all I really had as a symptom was diarrhoea: I knew that wasn't IBS. Nowadays, I'm not nearly so confident that I don't have any IBS: I think my years of Crohn's and surgeries have caught up with me. I'm in a very similar boat to you. I'm not on maintenance meds, a decision I am comfortable about, but would be even more comfortable with if I knew I could rely on my hospital to do annual testing for Crohn's. I don't know how my Crohn's presented itself in its early years (i.e. if inflammatory markers were raised, etc.), but I do know it must have come on very slowly; I'm pretty much banking on it doing the same thing again, if it returns.

Isn't it a pain? :-/