UC definitely can suck for mental health. I feel some sort of mental deficit.
There is a lot of information, and I have delved into the medical literature as well as reading alternative advice on this forum. I still do not feel like I have a great handle on the immune system or the details of a lot of research. there are so many abbreviations, and scientific names, and jargon. Still, I learned a lot and I can place most information into context.
What drives me crazy is that any up or down always has several possible reasons. Yes I added stronger probiotics, but I was also tapering Pred. Yes I bleed more, but maybe it was because I got a little better and formed a bit of stool. Maybe some of the mucus is caused by the slippery elm. Maybe ... maybe .... maybe. It is vexing.
In the short run I find myself over analyzing every little up and down when I know these things vary from day to day and week to week. Still, I am intently trying to decide if I'm better this week than last, better this month than last. I *am* better this year than last, but there are bad days, and I have not had the good quick responses to meds that some folks get. (But I have not had the huge downward spiral towards hospitalization that some have either.) I've never had remission in 3 years, but mostly am managed well enough that work, shopping, and the occasional outing is not a problem. - Just leave time in the morning for the D and figure on a 6+ trips to the toilet each day - and don't even think about farting except on the toilet. It sucks, but I'm managing - but "just managing" drives me crazy.
My memory is also getting blurry. I wish I had done a journal. I know symptoms built over months in the fall of 2009. Dec'09 was hellish. Scoping and diagnosis in Jan'2010, and I did get a bit better by April. Can't remember the summer at all. Was I even better? Plateaued? Sliding down? Just no memory. (That drives me crazy). Fall 2010 saw some accidents and pain when making a few trips. Dec'2010 was pretty much home bound with 20+ trips to the toilet. I must have gotten a bit better after the 1st Pred taper in Feb'2011. After the holidays, I did get out of the house and got to work most days. But then there was the 2nd taper because of excessive bleeding, and then the "just stay at 15mg Pred" indefinitely. Had I been getting slowly (if somewhat unsteadily) better, or had I moved in the direction of remission twice and slid back down into symptoms each time? In a way it does not matter, only now matters, but not being able to look back and clearly recall and align chronologically and judge my progress is kind of scary. I usually have a very good memory, but a lot of living with UC is becoming a blur. I hate the blur. I want a life not a blur.
2011 is a bit surreal. Lots Of IV iron infusions from March to December and I feel a lot better, but there is still all this mucus, D, and bleeding. It is like a disconnect. Pancolitis became left-sided colitis. Yeah Lialda! Generic Rowasa and hydrocortisone enemas have helped a lot with urgency and one or two days a week there is even semi-formed stool (something I never saw at all in all of 2010). But, I seem to be one of the folks who gets limited benefit - reduced symptoms but no remission. 60% of oral 5-asa get remission, but I was in the 40%. A lot of people on rectal meds get formed stools and no bleeding, but all I get is less D and less blood. Sometimes I think that my UC is fighting back against each therapy, counteracting each improvement. I want to feel angry to feel unfortunate, but I also am glad that I am not worse. I am aware of folks who suffer much more. Having these conflicting awarnesses drives me to distraction. It pushes me deep inside my head and objectivity is lost. I hate that place.
I hate the over thinking and the blur, but mostly I am just tired. I want to be me, but I am becoming a person defined by UC. I pick up and I read more. I try a stronger probiotic. I prepare to discuss LDN with my GI. I try to navigate this thing. It has been a good day with only two trips to the toilet with only a little mucus each time. Maybe this will be a good week. Maybe the VSL#3 has finally kicked in. Perhaps I am stable enough to taper down another 2.5mg of Pred. Maybe this is the beginning of a remission. .... But wasn't it only last Saturday when I wanted to fuss around a few hours in my workshop but had to run in every 30 minutes for suspiciously reddish-brown squishy poop? ... and didn't the enema leak a bit the last two nights? Damp PJs is not a good sign. Sometimes I can't decide if I am doing better or not, and that makes me crazy. Sometimes I think how quickly I could deteriorate and be hospitalized, and that scares me.
... and the next time I'm running to the toilet with diarrhea or mucus, likely sometime tonight, and looking at the red cranberry color on the tissue, this is all going to feel really really surreal. Just me and my thoughts and my thoughts about my thoughts and my diarrhea and trying to think about the next new thing to try or whether to just be patient. Yes, UC definitely can suck for mental health.