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Defining treatment failure

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Ulcerative Colitis
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Posted 2/17/2023 11:00 PM (GMT 0)
I hear from experienced UC’ers that nearly everyone flares at some point or another, regardless of the medication they’re taking. So at what point do you decide meds aren’t working any more? I seem to flare about once per year right now but so far symptoms subside pretty quickly. Is that too often? Are the meds not cutting it? I’ll be talking to a new GI doc next month but in the meantime I’m looking for some perspective from other IBD’ers.
Posted 2/18/2023 12:01 AM (GMT 0)
Have you had a scope recently? That will tell whether a mild flare once a year is doing damage. It doesn't sound bad to me.

I was never like that ... when I flared I kept flaring until I changed meds sad
Posted 2/18/2023 12:11 AM (GMT 0)
If your flare subsides quickly it seems your meds are still working for you. I'm like CC - if a med stops working for me (i dislike the term "failure ") I will flare indefinitely until I change my treatment. Do you take anything to manage your flares or do they go away by themselves?
Posted 2/18/2023 2:30 AM (GMT 0)
I've been on Remicade and methotrexate since 2015. I have "mini flares" periodically but have thus far (knock on wood, cross your toes and fingers, toss salt over your shoulder) recovered from them fairly quickly. (2 months or so) My scopes from my colostomy up are stable. My disconnected rectum and anus are challenging.

I asked my GI that question and his answer was that for me... The meds are still working. Periodically my body just gets overwhelmed and I have a flare..but the meds (methotrexate and Remicade) are calming it in my intestines from the colostomy up. They are keeping the last bit of rectum and anus manageable. I've had 4 surgeries and this is my state if remission... BUT It's different for each individual.

I agree with CC and poopydoop....I'd get a scope and talk to my GI.

Clo
Posted 2/18/2023 3:50 AM (GMT 0)
To answer some questions here: I was scoped a couple of years ago. Mild inflammation confirmed by pathologist.

As for meds, I don’t adjust anything right now. I bumped up from 3.6g to 4.8g mesalamine in 2021 which knocked out my symptoms and I’ve stuck with that since. I avoid pred though I’ve considered budesonide before. My inflammation is pretty low so I’ve thought about adding budesonide foam. My last GI refused that though I’m not seeing him any more.

I’m getting a new GI next month and will look at getting a new scope. The doc gets very good reviews so I’m optimistic.
Posted 2/18/2023 6:28 PM (GMT 0)
Hi Guigsy...are you having symptoms now? Good you're seeing a new GI.

q
Posted 2/19/2023 3:25 AM (GMT 0)
Hey q,

Yes I’ve had some blood in the stool. Not a lot. Not noticeable in every BM. Gut gurgles and excess gas for a few days. Guess I’m lucky in a way (*knock on everything*).

I’m pleased to be seeing a new GI. I need a fresh perspective.
Posted 2/19/2023 7:18 PM (GMT 0)
And you're still on nightly enemas?
q
Posted 2/23/2023 1:32 AM (GMT 0)
Yep, I’ve tried tapering before and it didn’t work out too well. Symptoms started creeping back in. I honestly don’t mind using them every night - though if I decide to travel that might become an issue.
Posted 2/23/2023 6:59 AM (GMT 0)
Seems you'll be getting a c-scope soon after you see the new GI...which will determine how the inflammation is progressing or if there's something else going on.
If you're having to wait a while for the scope and need to use something for relief, you could request to add topical steroids such as oral and rectal budesonide and see how it goes.

q
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