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Turn for the Worse - Next Steps?

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Ulcerative Colitis
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Posted 3/18/2017 5:15 AM (GMT 0)
Thanks to everyone who has shared advice with me these past weeks!

So I had three great days in a row earlier this week - bleeding stopped, 1 trip to bathroom daily, and thought I was starting remission, then got my period for the first time in 6 months and WHAM! - bleeding came back (though not as bad as before), and three days of tenesmus and general misery, LOTS of trips to the bathroom. Hoping that's connected to hormones and not UC inflammation on its own. I started a mini-pill about 2 weeks ago and hoping that will help for the next cycle. GI said his female patients generally don't have major issues with their cycle once they hit remission.

I saw my GI today, who has been wonderful to work with and incredibly responsive. He does feel I should have been in remission now after over a month on prednisone plus having started Colazal two weeks ago.

They added Cortifoam 2x daily today to help with rectal inflammation (I can't tolerate Rowasa) and said if things aren't much better in a week, they'll check inflammation levels via flexible sigmoidoscopy, and then discuss moving to a biologic (plus possibly IV steroids if needed - yikes).

He did say their patients generally respond better to biologics with fewer side effects vs immunomodulators, so they prefer to go straight to the biologics when patients are in agreement.

Any thoughts on this approach? I had been debating adding VSL#3, but he asked me to hold off for the coming week so we can assess response to Cortifoam that was added today, plus how effective Colazal is now that I've been on it for 2 weeks. I have had bad reactions to mesalamine in the past so that is also a consideration.

EDIT: See additional comment below. Things got worse today and they are thinking mesalamine reaction, so Colazal has been stopped.
Posted 3/18/2017 5:32 PM (GMT 0)
The hormonal swing is a huge factor......i would give it 2 weeks to a month before the scope and making any decisions if you're improving.

q
Posted 3/18/2017 6:42 PM (GMT 0)
Thanks, Quincy!

Things took a bit of a turn last night and today and my period has all but stopped today, but my symptoms continued to worsen, much worse than pre-UC diagnosis last month (10 trips to the bathroom yesterday and last night with painful tenesmus/straining, tiny stools, lots of bloating, gas, abdominal pain - not able to eat).

I talked with the on-call doc just now and given my past (very bad) reactions to Rowasa, they are thinking it's a mesalamine intolerance. They have me stopping the balsalazide for today and tomorrow to see if things improve and then talking to my GI to reassess on Monday.

I'm to continue at my 25mg Prednisone and continue Cortifoam 2x daily until I speak with him on Monday, and then we'll see what's what.

Today and yesterday have been awful, so hoping it's just a reaction to medication - not ideal, since those mesalamines are chemoprotective, but I'd rather a medication reaction than a serious and sudden worsening of my UC.

Thanks again for checking in!
Posted 3/18/2017 7:40 PM (GMT 0)
i hope it's just the hormones. In my case, i'd always hope it was related, but over time, less and less did it seem possible that hormones would provide the miracle I'd hoped for. my UC just got more difficult to treat. I tried a few different types of BC and I tried stopping it entirely to see if that would be beneficial. it was almost as if once things were set-off, there was no going back, and no hormonal shift or steadying would provide any real therapy for the inflammation. i was so hopeful, but no dice. On 25mg and still having symptoms is definitely not fun. I think the solutions offered by your GI are good ones. cortifoam may help, otherwise, yes, immune suppressants are the next step since you're intolerant of mesalamine. Trying to stop the colazal to see if it's causing more problems, is also a good idea. I hope there's some relief there.

The only thing I don't necessarily agree about, is that immune suppressants have a lot of side effects. i was on 6mp for a few years and things worked out ok for me. I've seen some users here start 6mp or imuran and maintain very long remissions, some have even disappeared from HW because they've been in such a solid remission for so long. I think it's really preference. if you wanted to try them before biologics, don't let one opinion stop you. do your own research, even start a thread here and ask for feedback...

have you had stool tests recently. when people are on a higher dose of pred and still having symptoms, usually a stool test (or even a repeat if you've had one recently) is smart.
Posted 3/18/2017 7:53 PM (GMT 0)
Thanks, notsosicklygirl! I appreciate the feedback so much (it's so scary when newly diagnosed).

They did a stool test yesterday and so far c diff is negative. I'm waiting for fecal calprotectin results. ESR is much lower than it was pre-diagnosis, now well in normal range, which was nice to see. CRP is just above normal (0-8; I'm at 8.8). WBC and neutrophils are elevated but it looks like that's normal with steroid use (and also in UC).
Posted 3/18/2017 7:58 PM (GMT 0)
that sounds like a positive result. you're definitely right about the increased wbc on prednisone. i wouldn't read too far into that while on prednisone. mine were always elevated on steroids. i guess see how you do without the colozal for the moment, give the cortifoam a try, and see how it goes. Maybe it will do the trick. Fingers crossed.

you may want to consider steroids enemas too for your aresenal. They should go further and provide a high dose.
Posted 3/18/2017 8:03 PM (GMT 0)
Thank you! I will definitely be asking about that on Monday. I am totally happy to do enemas as long as they don't make me feel horrible all night and the next day (like Rowasa did)!
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