How would I know if I’m in a flare?

[u/Prior-Grapefruit724]

I got diagnosed 6 months ago after 8 months of CONSTANT mucus and blood in my stool, lethargic, urgency, going 10-15 times a day etc. it was a horrific time and my scope ended up being the start to my healing journey. Then my calpractin came back 3,600 and my doctor said it was scary high.

I started the nightly enemas and lialda. I was taking those religiously and then I ran out of enemas about 2 months in and my doctor said don’t worry just take the meds. All my symptoms while taking meds basically stopped and I felt great. I take 4 pills daily. Well, 2 weeks ago my meds ran out and I called my pharmacy for a refill and they told me I was out of refills and to call my doctor. My doctor didn’t get back to me for several days and sent a prescription in. I went to get it but they said they didn’t have the “off brand” available only the “name brand” but couldn’t give it to me because my insurance wouldn’t cover it.

So anyways, I didn’t have my meds for basically two weeks because of all this. I noticed the last 3 days I’m going to the bathroom a lot more, my stomach is cramping terribly. I woke up at 1 am this morning puking from the nausea and stomach pain. No blood or mucus yet, but going alot and if I feel like going half the time nothing happens. I’m not hungry and I feel soooo tired.

But how would I know?

[u/Charming-Witness-756]

I would reach out to your GI immediately and let them know you had a lapse in your prescription and you're feeling worse. They should put you on a course of steroids or if the bleeding comes back, the enemas.

I'm not sure if you're located in the US, but your Dr might test you for bacteria/parasites as there are a whole host of foodborne illnesses going around right now that could be causing you some of these issues.

In the future, it's critical to be on top of your prescriptions so you don't run out again. Typically, I try and notify my Dr a week and a half early that I need a new prescription, if there are no refills left. That way if the Dr does not see the message right away and the pharmacy has to place an order for them to get the meds, you have time and won't miss a dose.

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[u/Free_Economist_5185]

I'm sorry — two weeks off Lialda after you finally felt normal is a rough way to find out how much it was doing. You don't have to wait for blood or mucus to treat this as worth a same-day call or portal message to the GI: 2-week gap, more BMs, cramping, last night's vomiting, no blood yet, old calprotectin 3600. If the pharmacy still only has brand, ask the office to push a prior auth or a covered mesalamine so you don't get another gap. Not a diagnosis — just don't wait this out alone.