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A few questions...

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Ulcerative Colitis
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Posted 5/30/2019 7:47 AM (GMT 0)
Hi all,

I was diagnosed with moderate left-sided UC back in November. Had the usual 8 week course of pred which worked well initially but symptoms came back when I got down to the lower doses so got out back up to 40mg. Tried azathioprine /imuran which I couldn't tolerate so switched to 6mp which was better. However after 8 weeks, got told I wasn't metabolising this so had to half the dose to 25mg and add in allopurinol. I also started humira 6 weeks ago and have been using budenofalk enemas for around 10 weeks. I'm currently down to 5mg pred and hope to be off them in 2 weeks.

My questions are these:

1) do I need to taper off the budenofalk enemas as no one has given me any advice... I only have 2 weeks supply left?

2) people who have used humira, when did you see a difference or know it was working?

3) I am having 1-2bms in the morning, no blood or visible mucus but still have some discomfort. I tend to get gassy and uncomfortable in the evenings and overnight. Does this mean I'm going to flare again?

4) how do you know when you're in remission? I still feel like I'm not there sad

Thanks everyone
Posted 5/30/2019 8:04 AM (GMT 0)
4) it can be hard to know. My doc classified me as in remission when sigmoidoscopy and calprotectin were both normal, although i was still having up to 4 bms a day at that point. I still have pain sometimes and I'm more farty than pre-diagnosis. I won't really believe its remission until things are stable for a long time.
Posted 5/30/2019 8:15 AM (GMT 0)
Thanks for your reply. That's interesting. It's a hard one as many people seem to say you should have no symptoms when in remission but I don't know if that's the reality for most people.
Posted 5/30/2019 11:01 AM (GMT 0)
A few answers:
1.) Not essential but you can do every-other day a few times and then quit/stop. Tapers are generally left for systematic steroids like prednisone.
2.) Response in 6 weeks or sometimes a lot less. On remicade, I had my first positive response at 3 weeks, a much bigger response at week 7, and slow and steady progress thereafter until I reached a remission.
3.) Gass is something I got a crazy amount of when rebounding/healing, so normal and expected and notjing at all to worry about. My gas levels returned to a normal as I cobtinued to heal.

4.)Remission is kinda like being in love (a very black or white thing). You cannot force love or remission, it kinda hits you out of the blue often by surprise. You wake up on day think holy crap I now poop once a day, no uc symptoms at all, it MUST be a remission. It's when bathroom access stops dictating your life, you stop worrying and stop having anxieties about symptoms.

I get the scepticism, that was me 2-years into this whole UC crapfest, very pessimistic about it all as remission seemed impossible for me to achieve. Remicade got me there though! A sigmoidoscopy confirmed it was a remission.

Some do have some minor IBS-like symptoms in a remission. However it isn't hell, like flares are.
Posted 5/30/2019 10:11 PM (GMT 0)
Some days I go 1x, usually if I was dehydrated or didn't eat any vegetables the day before. Most days I go 2-3x before/during/after breakfast. I usually drink a pint of homemade fruit/vegetable juice every morning, perhaps that's why i go multiple times. Since everything is out before I leave the house i don't worry about urgency. I do worry when i get pain but like i said, we did a scope and keep checking my calprotectin and everything keeps coming back normal. Regular calprotectin tests have been keeping me sane in the last few months.
Posted 5/31/2019 7:59 AM (GMT 0)
Thank you both for your replies.
So given the fact I've been on humira 6 weeks and not noticed much difference, does that mean it isn't going to work?
I just had blood work and fecal calprotectin test done yesterday so will see what that shows.
I'm a little concerned as having some cramping in the morning usually after a bm.
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