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Second flare?

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Posted 9/6/2015 11:01 AM (GMT 0)
Hello, all.

Long time lurker, first time poster. I've learned so much from this forum since I was first Dx in 2012. Back then I was between primary care doctors (my first was awful and kept giving me antibiotics for my diarrhea). So it was a month of D, high fevers, night sweats, nausea, before finally getting admitted to the hospital. I get there, have a CT scan, and a sigmoidoscopy, but for whatever reason they didn't Dx me until 8 days later when I had a colonoscopy (during that time I needed two blood transfusions). Voila, diagnosed - put me on pred. Grand total of 11 days in the hospital, and then a couple of months on my couch recovering. I had been severely protein deficient (from eating Cup of Noodle soup and drinking Gatorade for over a month!), so my feet were the swollen up like balloons. My colitis was up the entire large intestine, I'm told (though my GI wasn't able to go all the way up, at the time, because of a risk of perforation since I was so severely ulcerated). I recovered to normal stools once a day later that year, and have been well until now. I gave birth to twin girls the following summer.

Fast forward to now, and I'm worried there's a flare. I woke up with my dogs as usual last Wednesday, and got hit with sudden sweats, the urge to use the bathroom - and while there I vomited into the trashcan next to me (saw undigested food, almost 12 hours after eating). Didn't notice D in the toilet at the time, but something came out (possibly the enema from the night before). Called my GI. He said it was probably a stomach bug and that only "time would tell" if it was a flare (he's a smiley kind of doctor, so he was friendly when he said it... but after the delay in my first Dx, I wonder sometimes!).

I had D with urgency once a day Thursday, and Friday. Yesterday it was 3x. Once so far today, Sunday. I feel fine otherwise. No blood, maybe mucous (hard to tell when I'm seeing, it just looks like D, and a little cloudy). My appetite is off. No night sweats and no fever. I am doing the enemas nightly now.

We're moving to a new home next week (the stress of this brought on this, I think...) in another state, where I'll get a new GI. I've read "am I flaring?" posts here in the past, and was always like, "well, yeah!" - so I feel silly posting, but I had some questions:

1) is a flare necessarily going to stay a mild one since I'm on maintenance meds and keeping up with the enemas?

2) I feel fine mostly - is that normal during a flare? The last one knocked me out since it was totally untreated. Can it stay mild and run its course? I don't want to end up in the hospital again, I am a stay at home mom with two young children.

3) I have been in "remission" of symptoms for a long time, but that was never confirmed with a follow up colonoscopy. My GI said I wouldn't need another one until 8 years after my first one in 2012. Is it common for GIs to say you're in remission without that follow up colonoscopy? Also, since he wasn't able to go up the whole way during the first one because of risk of perforation, should there have been a second one?

I really feel fine mostly, maybe a little tired (toddlers and packing a whole house may be the cause of that). I'm just wondering if this is a second flare or not (or as my GI said, will time tell? LOL).

Thank you for your help. Again, this is the best forum for UC I've found on the internet and it's a place I check often because it is well moderated.
Posted 9/6/2015 12:17 PM (GMT 0)
1.) Every flare is different, some are very small blips of bad symptoms that pass, other flares are mild, some are hell incarnate. It's good that you're staying on your maintenance medications but that doesn't stop a flare from being severe.
2.) Hard to say, not knowing. I would max out your meslamine medications, take on enema per night and 6 asacol hd pills a day (800mgs per pill x 6 pills = 4,800 mgs). Just keep an eye on it. The simmering flare you have now could turn into a raging flare from hell if you're not treating it sufficiently. Best to nip-it-on-the-bud, have your gastroenterologist run a stool test to check for pathogenic causes, have him/her do a flexible endoscope to see exactly what's going on, and think about prednisone or steroid enemas.
3.) It's normal, that's what my gastroenterologist did. I'm in symptomatic remission based on one bm a day. There's also clinical-remission that requires a endoscope and biopsy to prove. However, a scope is invasive and can irritate your large intestine and I feel the risk isn't worth the benefit (to just answer the question is it clinical or symptomatic remission?).
Posted 9/8/2015 11:52 AM (GMT 0)
Thanks for your reply, John. I'm relieved to hear that I'm okay to be in symptomatic remission without a follow up colonoscopy to prove clinical remission. I had another question that I thought of later on, is it considered a flare if you're just having D without blood, and just once a day? I was joking with my husband that it seems harder to pin down than, say, "okay, you have a broken leg" - there are so many factors that seem to indicate a flare...if you only have one, is that still a flare?
Posted 9/8/2015 12:28 PM (GMT 0)
In general, a flare is a worsening of your uc symptoms and often includes one or more of the following: diarrhea, mucus, blood, urgency, increased frequency and/or pain. Flares vary in intensity and in symptoms. You're right that there's a gray area there, as we can have a day of diarrhea as a reaction to someone we ate (or have our bms increase due to a certain food we ate). That said, a flare is a consistent worsening of symptoms, your bowel habits change for the worst and you stay there with no chance of improvement without intervention. Ignore that change and it will likely take another turn for the worse. It is a progression in the wrong direction due to unchecked inflammation causing symptoms and left unchecked uc spreads and increases in severity. It's the nature of an autoimmune disorder like uc. You certainly don't want to become a hypochondriac, worry, and call your doctor every time anything changes even for a day lol. But noting and keeping an eye on consistent changes is a good thing as it may enable you to nip a prospective flare on the bud.
Posted 9/8/2015 6:57 PM (GMT 0)
Reading that helps - it's just a matter of observing the trending pattern. :) Thanks again, John! I'm feeling a little better today, hoping it's a good sign.
Posted 9/9/2015 2:00 PM (GMT 0)
Glad you're feeling better.
Posted 9/9/2015 5:07 PM (GMT 0)
Sounds like you had a stomach bug since you're recovering steadily and only going once a day. Usually, after a week into a true flare, you feel pretty awful.

I recommend that once you move and find a new G.I., you have a colonoscopy done. I suggest this because 1) It'll give your new G.I. a good idea of where you are, and 2) the last one wasn't complete.

I don't think people with mild colitis need colonoscopies that often but I would be concerned after being diagnosed with colitis for the first time that no one had ever seen my entire colon. It's good to get a baseline.

Make sure you like the new GI before you decide to do the colonoscopy. You want to do it with someone that's going to be your doctor for a long time.

Also, agree with the person who recommended you increase your meds for a bit.
Posted 9/9/2015 6:33 PM (GMT 0)
This is somewhat OT/not in direct response to amy_vt's original question - but I was struck by the fact that the doctor ordered a scope every 8 years for a severe case.

When I was diagnosed with moderately active pancolitis, my GI put me on a schedule of every 3 years for colonoscopies. I have a history of colon cancer in my family, but I am still in my 20's. What are other people's experiences with colonoscopy frequency?
Posted 9/9/2015 6:40 PM (GMT 0)
People with UC can get food poisoning and other bugs. I have had food poisoning a few times while in remission, and of course i expected the worst, but usually things went back to normal very quickly. I wouldn't go crazy thinking the worst, what you describe sounds more like food poisoning, not a flare up. An acute episode of vomiting with sweating, isn't typical of the start of a flare. Usually flares start slowly. Once I did have a flare come on very quickly but it was with D and blood...
Posted 9/9/2015 8:23 PM (GMT 0)

elzb said...
This is somewhat OT/not in direct response to amy_vt's original question - but I was struck by the fact that the doctor ordered a scope every 8 years for a severe case.

When I was diagnosed with moderately active pancolitis, my GI put me on a schedule of every 3 years for colonoscopies. I have a history of colon cancer in my family, but I am still in my 20's. What are other people's experiences with colonoscopy frequency?

There are two factors that effect your colorectal cancer odds: disease severity and length of time with uc. Generally, the recommendation is a colonoscopy for initial diagnosis and a repeat colonoscopy after 8-10 years of uc. 8 is often the recommendation for those with pancolitis. 10 for those with lesser disease. A colonoscopy is recommended either annually or biannually from that point forward. As after that time period, the risk of colorectal cancer increases. Patient compliance and practice-by-practice policies can vary slightly. Certainly, having a family history or CRC might impact your risk and the applicable preventative screening. No one wants to have too many scopes as they do carry risk and are invasive. Oh, and a severe flare can warrant either a sigmoidoscopy or colonoscopy.
Posted 9/17/2015 12:33 PM (GMT 0)
Thank you again for your replies (we just moved so I didn't have my computer hooked up until now). :) Thankfully, all is better on the intestinal front here. I think it must have been a stomach bug, as some of you suggested. I plan on getting set up with a new primary care doctor and gastro as soon as I get my health insurance set up here.
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