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Mild to Mod versus Severe

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Ulcerative Colitis
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Posted 5/3/2010 12:47 AM (GMT 0)
I've heard these condition levels bandied about. What does all this mean in terms of staying in remission. If you have mild does that mean it's easier to get and stay in remission. How do they come up with these grading levels?
Posted 5/3/2010 1:11 AM (GMT 0)
Interesting question.
I don't remember ever being told I had severe UC. No colonoscopy ever made any GI doctor say "wow, you've got severe UC". They seemed pretty blase about it even when I told them about continual bleeding and constant urgency.
I think that's why I as in denial so long about how life-changingly bad my symptoms really were, because none of the doctors seemed concerned. Even when I broke down crying in one doctors exam room she seemed more wanting to get me out than to help.

I guess I wasn't severe because I've never been hospitalized except for a blood transfusion but that was never proven caused by UC.
And I truly feel great sympathy for those who are "severe" cause if I wasn't severe then severe is beyond hell.

But it took me 10 years to get to remission once and that was without the help of medicine.
So I guess medical labels don't interest me because they weren't any help when I needed it.
Posted 5/3/2010 1:19 AM (GMT 0)
I don't think they refer to these terms while in remission. I think they are refering to the severity of a flare.
Posted 5/3/2010 1:33 AM (GMT 0)
My flare had me at death's door and they called mine mild to moderate. Is it how ulcerated your colon is? Is that what it's about? Not the autoimmune part, but how yucky your colon lining is
Posted 5/3/2010 4:23 AM (GMT 0)

journey2health said...
 Is it how ulcerated your colon is? Is that what it's about? Not the autoimmune part, but how yucky your colon lining is

Yep, that sounds about right.  Also how extensive the ulceration is I would think.
Posted 5/3/2010 1:29 PM (GMT 0)
     My ulcerative proctitis was classified a few months back when I had my flex sig as mild/moderate.  I had severe urgency, could not hold any bowel movement in, bleeding and cramping....just felt horrible.  When I looked at the pics, my rectum looked completely inflamed.  I have no idea how they classify this as MILD/MODERATE.  Although, my doctor said to me that where my inflamation is located could make me feel just miserable....and he was right.
Posted 5/3/2010 1:38 PM (GMT 0)
My sigmoid colon had such severe inflammation over the years that even when it's fine, it doesn't have the texture the rest of the colon has - it's sort of smoothed out with scar tissue. I imagine that's why, even in remission, I have several poops a day.
Posted 5/3/2010 2:39 PM (GMT 0)

jb2 said...

Severe and you'll be here posting and fighting at home for some time worrying about Remicade and colectomy.




Jb2,



I'm not sure about this statement, but it is something I have been curious about. My proctosigmoiditis is classified as severe. However, I have never had D, urgency, or pretty much any other symptoms besides blood. I was "leaky" for a month or so before diagnsis, and for a week after tapering Entocort. That's it, besides the blood. So, I was labled severe with what I consider mild symptoms.



So, I have two questions to pose:



My curiosity is about how I got to be severely inflammed. I bled for two and a half years and was told that it was basically nothing, your're fine on multiple occassions by my primary care doc. Could my inflammation have gotten progressivley worse since it was left untreated for so long? Say if I had put my foot down early on it could have been mildly inflammed, or if I had only waited a year it would have had only moderate inflammation. Does that make sense?



Also, if one has severe inflammation at one flare up, does that mean they are likely to be severly inflammed with each successive flare? Or is it a rule of thumb that the earlier you catch and up the meds the less severe the flare will get?
Posted 5/3/2010 3:26 PM (GMT 0)

jb2 said...

Yes, I think, you are likely to be more severely inflamed with each successive flare




Why do you think this? Do you feel the meds become less effective for us over time?



It seems to me our first flare should be one of our worst ones. Especially in cases like yours and mine where we went years without treatment.



Also, to another point, I think the mild-mod-sev classification depends solely on the state of the colon. I think you could theoretically have no symptoms and be severely inflammed, or going 30 times a day with mild inflammation.
Posted 5/3/2010 3:33 PM (GMT 0)
I found this online:

•Mild:
◦Fewer than four stools daily, with or without blood
◦No systemic disturbance
◦Normal ESR and CRP


•Moderate:
◦Four to six stools a day with minimal systemic disturbance


•Severe:
◦More than six stools a day containing blood and evidence of systemic disturbance (fever, tachycardia, anaemia, or hypoalbuminaemia)

Also some other interesting information about UC.

http://www.patient.co.uk/doctor/Ulcerative-Colitis.htm
Posted 5/3/2010 4:00 PM (GMT 0)

Judy2 said...
I found this online:

http://www.patient.co.uk/doctor/Ulcerative-Colitis.htm

Judy
Thanks for a very informative link and for the descriptions of UC levels.
I now know I was moderate to severe, something a doctor NEVER told me or even acted concerned.
Just same old stuff...next patient.....
Posted 5/3/2010 4:46 PM (GMT 0)
FWIW, my doc doesn't put a whole lot of stock into the mild, moderate, severe grading...he said that it's only about how poorly the person feels, not how bad their colon looks. I also think/hope that although my first flare was probably severe (I had 15-20 BMs/day, lost a LOT of weight, my BP was low, and my pulse was rapid), that future flares won't be so bad, because I'll catch them earlier and up the enemas right away.
Posted 5/3/2010 4:47 PM (GMT 0)

jb2 said...

I disagree; mild flare will not create 30 BMs.




OK, maybe I was being a little extreme in my example. I guess I'm just trying to say the external symptoms are not directly proportional to the degree of inflammation we suffer from.



But then, that contradicts what Judy posted about the severity being directly related to number of BM's per day. I don't think this is how doctors diagnose us though. I was going one time per day at diagnosis but was still diagnosed with severe UC.
Posted 5/3/2010 5:03 PM (GMT 0)
Judy,
I found your information to be extremely helpful. My first and second gi's diagnosed me as having severe colitis. I thought it was because I had mega toxic colitis but now I wonder. My flare's are often but not always severe and the "systemic disturbance" is immediate. For me this means loss of ability to speak clearly (magnesium loss) and inability to absorb nutrients from the digestive system. And, of course, there's the pesky little 20+ bloody liquid bms a day resulting in dehydration, intense pain and blood loss. Even in remission I sometimes have pain and cramping. Today is the first day of no pain in a long time. I feel like dancing!
Cynthia
Posted 5/3/2010 5:03 PM (GMT 0)

fruitgirl said...

FWIW...I also think/hope that although my first flare was probably severe (I had 15-20 BMs/day, lost a LOT of weight, my BP was low, and my pulse was rapid), that future flares won't be so bad, because I'll catch them earlier and up the enemas right away.




Also FWIW, both of my GI's have echoed this same sentiment-that usually the first flare is the worst. Of course, this is predicated on staying on your meds as you should.



JayBee, your in the United Kingdom, right?
Posted 5/3/2010 5:13 PM (GMT 0)
Oh, Levi, there's no way I'll ever go off my meds...even the twice weekly enemas! I don't mind taking them, especially if it means never being that sick again.
Posted 5/3/2010 5:14 PM (GMT 0)
I guess I would say the severity is a combination of symptoms we experience - blood, frequency, urgency, pain, tiredness - and symptoms evident to the doctor - the inflammation evident upon colonoscopy.
My guess is that exactly how each doctor categorizes patients is somewhat unique to each doctor, though possibly informed by a consistent set of issues, diagnostic tables, etc.

Levi, not sure if this addresses some of you were asking, but my initial flare - the first year+ when I was diagnosed, was my most severe flare. As I mentioned elsewhere, my sigmoid colon is actually damaged by scar tissue - it looks like a completely smooth tube with none of the texture of the rest of the colon - but none of my other flares have been as severe. Possibly I am just lucky, or possibly my tendency to "stay on it" and address the flares pretty early on has helped.
I have gathered, from my doctors, that it is not uncommon for a med or class of meds to stop being effective for us... but, again, that has not been my experience so far. Has the huge dose of asacol kept me flare-free? No, but I haven't been hospitalized or on pred, so I'd say it's helped keep he flares less severe.

Good discussion!!
Posted 5/3/2010 5:21 PM (GMT 0)
My GI labeled mine as severe when he first saw me. My whole colon was affected and very inflamed. He said my colon felt like dog meat when he did an external examine. When I got into remission, he thought I'd have to take maintenance medicines for the rest of my life just to stay that way.

However, my colon healed, and I have no scar tissue to boot. My GI was surprised that I'm doing so well and not taking maintenance medication. My condition is no longer considered severe.
Posted 5/3/2010 5:36 PM (GMT 0)

songlady said...

My guess is that exactly how each doctor categorizes patients is somewhat unique to each doctor




Songlady, yes, thanks for the answer. One of my GI's said I was severe and another said moderate to severe, based solely on the pictures from the colonoscopy my permanent GI did and I took with me.



Fruitgirl-Of course, I know you know not to go off your meds. When I began my Rowasa taper last month, I felt like I was at work naked when I went to bed that night without "shooting up." [img]/community/emoticons/tongue.gif[/img]
Posted 5/3/2010 5:45 PM (GMT 0)

Levi said...
Also FWIW, both of my GI's have echoed this same sentiment-that usually the first flare is the worst. Of course, this is predicated on staying on your meds as you should.

My first flare was not the worst. I just kept getting worse as years went on, even while taking all the RX prescribed.
I would say my last flare was the worst and knowing I would be most likely moved up to Humira I decided to make one last try at diet control which worked :-)

In 10 years I have never been in remission until now. So no my first flare was not the worst, it was probably the mildest.
Posted 5/3/2010 9:35 PM (GMT 0)
I think docs classify it based on the colonscopy/sig and how much inflamation there is. I personally think about it in terms of how long it takes to get back in remission and what level of drugs you need to take to get and/or stay there. I've never had to take 6mp, remicade, etc. or ever been hospitalized, so though my flares hurt like h3ll and make me go to the bathroom up to 30 times a day when I'm in them, there are definitely people that are a lot worse off. When are they going to find a cure already??!!!
Posted 5/4/2010 3:10 AM (GMT 0)
I would put it this way. I was in a severe flare from a mild to moderate case of Ulcerative Colitis
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