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What do you consider to be a 'flare'?

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Ulcerative Colitis
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Posted 6/28/2017 10:45 AM (GMT 0)
This might sound like a no brainer, but based on reading tons of posts here I am still a little confused.

To me, seeing ANY blood or mucus suggests I am not well somehow. This has been the case now for 18 months, although seeing blood has only been the last 9 months. It seems much better when I take rectal meds, but I skipped my enema last night and saw blood and mucus this morning.

Would you consider this flaring still? is ANY sight of blood a flare, or just a lot of blood? or would just mucus be ok sans blood?

I am trying to establish an understanding of what this disease looks like so I don't over or under react.

I am really discouraged today because of seeing this blood. I am wondering what level of concern I should have. Is stopping seeing any bleeding an imperative situation, or should one relax and just continue moving forward in a patient and steady way?

Thanks for allowing me to vent here despite my scattered mind state.





confused Marj
Posted 6/28/2017 11:16 AM (GMT 0)
A flare is a consistent and persistent worsening of your UC symptoms. It's not a one day episode but rather a pattern of 4-5 days or more of symptoms that are worse. It's all of the symptoms we know and loath: increased bm frequency, increased urgency, blood, tenesmus (feeling we have to poop and nothing comes out), and/or diarrhea. A minor flare can be one or multiple of those symptoms, and a bad flare is all of them. Blood can be the very last symptom to go away for some of us.

Mucus can happen without inflammation and does with those who have IBS. As such, mucus is the very least concerning symptom we have. Mucus means irritation.

Remission is an absence of UC symptoms, your stools are formed or semi formed, no urgency, no blood, and you bm only a few times a day.
Posted 6/28/2017 11:36 AM (GMT 0)
Ok thanks, iPoop.

Based on what you said here I have not yet achieved remission. If it appears ok when using the enemas, yet even a one day skip causes a return of symptoms (despite say a 4 week stretch of use) would you think a step up may need to be taken?
Posted 6/28/2017 3:49 PM (GMT 0)
What's the extent location of your UC, what meds exactly, and how long on them?

q
Posted 6/28/2017 4:00 PM (GMT 0)
You should be measuring progress week-to-week and if there's no sign of improvement then it's time to mix things up, try new doses (if not maxed out) and add new meds. You're 18 months in, and have seen blood for the last 9 months of that. Not where anyone wants to be.

What meds are you taking, at what doses, and how long have you been on them? You mention enema, is it a rowasa/pentasa/salofalk? Are you taking an oral mesalamine?

When was your last test for inflammation: CRP blood test, FCP stool test, colonoscopy or sigmoidoscopy?

How many bms a day are you having, are they formed?

Do you have rectum-only uc (proctitis), proctosigmoiditis, or pancolitis?
Posted 6/28/2017 5:11 PM (GMT 0)
Hi iPoop,

I am currently only taking rectal mesalamine and steroid enemas (alternating them each night). I quit the oral mesalamine and my doctor prescribed Uceris instead. I haven't begun it yet in hopes that just the enemas would stop the bleeding.

Today I had 5 bm's, all formed (but got progressively looser after #1) and the very first one was coated in blood with some mucus, the rest were clear.

I absentmindedly forgot my enema last evening. But this is actually the only way I know if symptoms are present or not (due to the excess enema on the BM camouflaging things).

My last scope was in October, I am scheduled for a new one next month (brand new GI). She wants to rule out Crohn's and also get some biopsies from other areas in the colon. This last surgeon only took them from the rectum, which is my primary culprit at the moment. He called it mild acute proctitis/colitis.

It's the NEW doctor that has now given the diagnosis of "chronic ulcerative colitis" based on my previous two colonoscopies. The other doctor said unknown etiology. This is somewhat confusing, which is why I am pretty relieved to be having a new scope to settle it all.
Posted 6/28/2017 6:18 PM (GMT 0)
I agree it will be an important scope with hopefully a diagnosis.

q
Posted 6/28/2017 6:53 PM (GMT 0)
MarjieKay

Using cortifoam (rectal steroid) alternating with rectal mesalamines was worse for me. I got rid of the steroid and stuck with the Rowasa nightly and this finally worked. I found that I bled more with the rectal steroid and have read that others on this site have as well. I am wondering if you should just use Rowasa nightly for a week or 2 to see what happens.

t
Posted 6/28/2017 8:23 PM (GMT 0)
Thanks for suggesting that countess18, I am going to do exactly that. I have a new box of mesalamine enemas waiting to be picked up and about an extra 6 here. I will go 2 weeks and see how this works smile
Posted 6/30/2017 4:12 PM (GMT 0)
I forgot to tell you that I was using Canasa in the AM and Rowasa in the PM to get in remission. I stopped the AM Canasa when I started Balsalazide. So my medicines have always been AM and PM.


T
Posted 6/30/2017 5:42 PM (GMT 0)
OK, I stopped the hydro enema 2 nights ago. Mesalamine only.

I am also back on my oral Pentasa for my day med (so as is said around here, both ends). Hopefully that kidney pain doesn't come back. I have upped my water intake substantially and am taking only one dose of it instead of two, so this may be the ticket.

I have a month before my next colonoscopy and I am visualizing her saying "looks like there's no sign of active inflammation" ;-)
Posted 6/30/2017 5:56 PM (GMT 0)
How much substantially for water intake?
q
Posted 6/30/2017 6:01 PM (GMT 0)
At present I have a 64 ounce jug I keep on the counter. And then I also consume several herbal teas per day (roasted dandelion root or ginger) and possibly a juice and a coffee......
Posted 6/30/2017 6:16 PM (GMT 0)
Not ott volume wise...why dandelion twa? It does have laxitive effect possibly.

you were the one with kidney pain thought to be from Lialda? How much per day now....and how are you doing on it.
q
Posted 6/30/2017 6:27 PM (GMT 0)
Are you saying this isn't enough volume wise? it's about 12 cups a day total......I am peeing like a racehorse, lol. Any more volume would have to be added slowly....

Yep, that's me. I have only been back on this for 2 days. My new doctor RXd Uceris as a Pentasa replacement, but made it clear she'd prefer me on the mesalamine.

But since my regular doctor didn't seem concerned about the test results.....and mentioned dehydration, I thought I'd give this one more whirl. I was supposed to be taking the Pentasa at 2 pills twice a day. Right now I am going to just hover at one dose a day for another day or two (with my extra water).

If all goes well, I'll add the 2nd dose and I will be where I was supposed to be.

As far as the DRT? it's supposed to help digestion and lord knows, if it could help in the laxative dept that'd be welcomed. I am a UC-C person. Right now I am 48 hours without a BM. Wondering if Metamucil would be a good idea?
Posted 7/1/2017 2:42 AM (GMT 0)
Hi...not OTT (not over the top)😄

Metamucil helps bulk and fluff up stool...meaning not hard. Constipation is definitely a symptom of inflammation with UC flaring. Limited in the rectum, but can be IBS as well.

If the dandelion root tea helps...good thing.

Hope all is ok with the Lialda.

q
Posted 7/1/2017 11:42 AM (GMT 0)

quincy said...
Hi...not OTT (not over the top)😄

Metamucil helps bulk and fluff up stool...meaning not hard. Constipation is definitely a symptom of inflammation with UC flaring. Limited in the rectum, but can be IBS as well.

If the dandelion root tea helps...good thing.

Hope all is ok with the Lialda.

q

Haha!

I thought maybe you were speaking with SIRI and yours had bad grammar like mine does and you meant "a lot". OK, so I am going to stick with this for volume. Honestly, it seems perfect in a 24 hour period.

I will look into psyllium seed then. Someone else told me that constipation is a sign of inflammation and this is really a bummer. I have had a lot of it. When I first started those hydro enemas I went 4 days and ended up having to use 4 tsp of epsom salt to clean out (sorry TMI !).

I don't have any symptoms of IBS and this has never even been a consideration. I am strictly a colitis person. No stomach involvement that I know of.

The tea or nature did work though, smooth sailing today. And things looked good, too. I am very hopeful that the mesalamine enemas and Pentasa are going to beat this flare.

F, 51
2008 Diagnosed with colitis
2017 Diagnosed with Chronic Ulcerative Colitis

Currently taking mesalamine enemas, Pentasa 500mg x 2 (once per day)
Posted 7/1/2017 3:54 PM (GMT 0)
Hi.. haha...i use voice to text mostly for text message or messenger and it's a pain since i do a lot of .... , ? and ! On the tablet, my fingers make lots of mistakes, so I spend more time fixing that.

Patience with the mesalamine. Pay attention to the constipation since it will probably be your first symptom after being in remission. I suggest a taper (takes time) to maintenance of the enemas...not off them.

Too much info? Not even in the realm of it.

I've never used psyllium seed, but others do.....start slowly with amount and take it with meals.

q
Posted 7/1/2017 5:39 PM (GMT 0)
OK, sounds good.....I forgot what remission was. Going on 19 months with mucus and now 9 with some blood sprinkled in for good measure. Definitely not 100% healed (yet) but I am hell bent on getting there !!!

My word for the foreseeable future........P A T I E N C E.........in everything I do. I am going to stick with these enemas as along as she prescribes them though. Or at least until she advises me not to. But I will definitely taper if the time comes !
Posted 7/1/2017 6:06 PM (GMT 0)
The longest I've been on nightly enemas was 4 months before the tapering process to maintenance ...can't understand the reasoning for nixing enemas unless allergy or intolerance.

Rectum....can take a long while, but for some it's never healed and surgery was necessary.

Yes, patience. Your butt will rule the process anyway...no matter how we want the schedule to work. Mesalamine is not like steroid...keep that in mind. Attitude and experience can make the difference.

q
Posted 7/1/2017 6:10 PM (GMT 0)
Ohhhhh, OK.....yes. I see what you mean now. Maintenance being like every 3rd night as opposed to every night? that's be amazing. I'm no longer worried about the mesalamine. In fact, I haven't even had a headache from it. The first few weeks I had one every day.
Posted 7/1/2017 6:33 PM (GMT 0)
I emphasise taper process to maintenance. I do every 3rd night, unless I just dont want to and do it on the 4th. Your butt might like every 4th. Some do 2x weekly on say monday and thursday.

Ive used mesalamine for 28.5 years. I still grumble about it. But who doesnt do that about a best friend once in a while?

q
Posted 7/1/2017 7:12 PM (GMT 0)
>But who doesnt do that about a best friend once in a while?

Too funny! not sure we'll be besties or not yet.....jury is still out on that one. Anything better than nightly will be a welcomed switch, lol.
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