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What do you consider a flare up?

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Ulcerative Colitis
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Posted 12/15/2008 4:47 PM (GMT 0)
Hello! I am somewhat newly diagnosed with UC in October of 2006. It was believed that it was caused by Ibuprofen I was prescribed in order to combat my childhood arthritis. I am currently on Pentasa. Previously, I was on Azathioprine but have decided to become pregnant so my doctor recommended switching to Pentasa. In the two years since I was diagnosed with UC, I have been having a hard time gauging what you consider a flare up. 90% of the time I am symptom free besides stomach cramps, rare incidents of diarrhea, & urgency. The other 10% of the time I will find small amounts of blood in formed stools with some abdominal discomfort before bowel movements. Sometimes the blood will persist for a few months & other times it will only last for one bowel movement. The blood usually occurs in very small amounts that you can barely see unless you take a close peek. I am currently experiencing very small amounts of blood in my solid stools and my doctor has prescribed me Rowasa enemas for the next 14 days.

Now, my question is… Do you consider it a flare when your only symptoms are slight stomach discomfort before a bowl movement & very small amounts blood? Is this common & you wouldn’t consider this a flare? When I discussed this with my doctor, she said blood is not indicative of a flare but rather diarrhea in addition to blood. She also said I shouldn’t be too alarmed with blood in my stool. To me, that seems somewhat odd. Any insight to what you’d consider a flare would be greatly appreciated. I am still trying to understand the extent of this disease since I have only really experienced a large flare with the initial onset of my disease. Thanks!

By the way, i am a newbie! Hello :)

Post Edited (meikaidi) : 12/15/2008 9:51:41 AM (GMT-7)

Posted 12/15/2008 7:35 PM (GMT 0)
hello!! and welcome smilewinkgrin unfortunately you get slight discomfort before a bowel movement with uc, i wouldn't consider this a flare, sometimes you'll go through stages where for a week or so you'll get alot of pains and slight loose bowel movements and feel irritated and bloated, when this happens i usually drink as much water as i can and give my stomach a rest by eating light easily digested foods, it's a case of trial and error really!! xxxx
Posted 12/15/2008 7:36 PM (GMT 0)
If you are bleeding due to your uc you are not in remission
Posted 12/15/2008 8:30 PM (GMT 0)
It's a really interesting question, and lots of people here have asked the same question, with loads of different replies as well. I wonder why so many of us would like an answer to this question? My theory is that we hate to "bother" our doctor (don't want to waste his/her time, worried about cost, concerned about "crying wolf", don't want to be seen as being too pushy, etc etc) so we just want to know at what point we should be concerned enough to pester for further / different treatment.

There is a tool called SCCAI (Simple Clinical Colitis Activity Index), which offers a scoring system for your symptoms, depending on severity. The index leaves out pain, though. I'm very lucky in that I don't have intense pain very often at all, but I know a lot of the people here have a terrible time just with the pain. Also, I've seen the remission point defined as "less than 2.5" using this system as well as "less than 5". Apparently, though, it does correlate very well to earlier (and very complicated) measuring/scoring techniques, and does have the advantage that you don't need to know the outcome of blood tests etc to use it. It's also mainly objective, which is what I like.

Personally, I'd say remission:
No (or very little) pain. No blood, up to 3 formed bowel movements per day, not having to dash to the loo when the urge comes, and not being woken in the night by the need to go. Oh, and not feeling so darn tired all the time.

Ideally, I'd like to reach "pre-illness" stage, but wouldn't have a problem living with an extra couple of bms a day, so long as it's not "Oh my god, am I gonna make it to the loo in time? What if it's busy? What if the buckle on my belt catches again?"
Posted 12/15/2008 9:32 PM (GMT 0)
Thanks for your thoughtful response Limeycricketlover! I will have to check out the SCCAI. Really, the only symptom I ever get is very small amounts blood and some very slight pain. So, obviously my definition of remission is slightly different than yours.

Supersaw, I have had arthritis since I was 10 years old (I am now 24) and the years and years of painful arthritis all over my body can never compare to what I have experienced with my bowels. I think the effects of UC on my bowels has been MUCH scarier then I ever faced with arthritis. Sure, there were times when I couldn't walk but at least I still had energy and i did not feel like I was going to die. I am sorry to hear the arthritis is affecting you so badly. I've had it since I was young so its always been a part of my life. Perhaps that is why I no longer let it affect me. Are you seeing a rheumatologist?

BBC, I understand what you mean by this but I don't know if its so cut and dry. Sometimes my blood symptoms come and go and sometimes they are barely noticeable. If I didn't closely inspect the toilet everyday, I would have NO CLUE I was even bleeding. So, can one really say one's not in remission if blood is the ONLY symptom?

Lil Lilian - I do the same as well when I get those type of symptoms!
Posted 12/15/2008 10:04 PM (GMT 0)
supersaw, has your GI or rheumatologist thought about putting you on Imuran? I was told by both of my doctors that it is meant to combat BOTH diseases. I am no longer on it because I am planning on getting pregnant. BUT when I was, it was like my arthritis never existed.
Posted 12/15/2008 10:19 PM (GMT 0)
I also wonder why you need to define a flare. If you have symptoms you should be treating them!
That being said, I consider a flare to be when I have urgency, because it affects my activities. I'm always bleeding, more or less.
Posted 12/16/2008 6:41 AM (GMT 0)
For me:


Stage III:

rectal bleeding, blood clots
diarrhea
rectal urgency
mild or even no abdominal pain (no stools, so no huge pain)

Stage II:

no diarrhea
rectal bleeding, blood clots
rectal urgency
huge abdominal pain (due to having larger stools)

Stage I:

rectal urgency
some abdominal pain (larger stools, less inflammation)
little blood, some mucus

Remission:

no rectal bleeding
no rectal urgency
no diarrhea
no abdominal pain
Posted 12/17/2008 4:52 PM (GMT 0)
subdued, your response is very succinct. I would find mine is very similar to yours. the only problem is.. my doctor has not quite answered whether or not I should be too alarmed when I hit stage I. So frustrating!
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