Hello! Long-time listener, first-time caller...
Love the forum (though I don’t care for why it exists). It
has been a great source of comfort / silent commiseration over the years since
I first came across it. Thought I should introduce myself before I join in on
Per my signature below, I was diagnosed 16 years ago now
(hard to believe – almost half my life at this point). Have been on Asacol
For the most part I’ve been lucky (compared to a LOT of
people with UC) and things have stayed relatively quiet. I’ve mainly used
hydrocortisone suppositories or enemas (and increased Asacol dosages) to tamp
things down when bleeding or other symptoms started.
A couple of times I used prednisone successfully. The first
time it worked quickly. Second time I was on it longer – and have the remnant moon-face
wedding photos to show for it. But much more important to have had a quiet
colon that day!
After that it was a long, LONG, time – years? – where I had
no symptoms at all, or only mild ones that were quickly managed by upping
Asacol alone, or maybe adding a suppositories/enemas for like a week...
Last May more severe symptoms started (with constipation
for 3 or 4 days, then the B and M) while on a combo anniversary/work trip to
Italy! Ugh. And I took too long, I feel like, to get serious about treatment once
I got back – maybe b/c it had generally been relatively easy for me in the past to
beat things back. And also because I don’t think I realized or accepted off the
bat that this was a more serious bout brought on by some crazy amount of work
stress I’d gone through in the preceding months.
A month and a half into it (July), after no relief from
Asacol and rectal meds, I finally went back on prednisone. But became
steroid-dependent. We tried a few times to taper me off unsuccessfully. August
I scoped clear, and September another scope showed I was ulcered again. So I
reluctantly started on azathioprine. In October I was in the hospital for a couple days of IV steroid, and after that visit I didn’t have symptoms again.
After two months on azathioprine, I started losing my hair
(two to three times as much as normal each day). After two months of that I
quit the drug in January. Was finally weaned off steroids in February.
Had issues after my clean colonoscopy in Feb (maybe hemmies
from the scope or from finally pooping again since I’d gone four days without a
BM after cleaning myself out for the scope...). Anyway – a week of suppositories
and that was all better.
Last month (May) symptoms started AGAIN – just like last year – a few
days of constipation and then on came the B and M.
This time I took it SERIOUSLY. I maxed my daily Asacol
dosage immediately and started hydrocort supp’s that first night I
saw B/M. Four days later nothing had improved so I moved on right away to
hydrocort enemas. And started to “dabble” with the SCD, which I’ve been looking
at and considering as an option for a long time...
After a week where that didn’t do it, I added mesalamine
enemas in the day (I can do that b/c I mostly work from home. I know. Don’t
hate me for that.) while keeping up with the hydrocortisone enemas at night.
Things were looking better after a few days so I switched to
mesalamine enemas at night and hydrocort supp‘s in the day (to help with the
urgency – OH THE URGENCY! – I’m never more than a room or two away from the
bathroom here at home and almost haven’t made it in time on a number of
occasions!). That’s been my treatment course the past 10 days.
And finally a week ago I fully committed to SCD. Even making
my own yogurt (which came out REALLY good, BTW). Realized it was stupid to suffer and starve myself following only
95% of the diet and that I had to go all the way to find out if it could really
help me or not.
Things seem to be better in terms of stools. Not entirely sure how things are going (sorry for tmi boys,
but I’ve had my period the past several days so it’s a bit impossible to tell what’s
what...). But I know the urgency hasn’t let up yet at all.
Have a flex sig scheduled for later today so the doc can see
what’s up (npi).
NOT in my signature right now: I also take vitamin D and
calcium (b/c of lower-than-normal bone density after all that time on prednisone), a
probiotic (that seems useless when compared to what I’m supposed to be getting
from the SCD yogurt), and fish oil (but not while having bleeding in the colon
because of what I’ve read about that on this forum).
And that’s me and my UC story!
Sorry that this post is so long... :)