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Which is the "worst"? Is there a worst?

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Ulcerative Colitis
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Posted 5/2/2016 12:52 PM (GMT 0)
Hello,
Another newbie question.

Is there a degree of severity in symptoms? Are there some symptoms that are "worse" (indicting worse inflammation?) than others.

Basically, is blood the worst? Where does d fall (and does it matter the type or amount)? What about mucus? Or bad gas? Or frequency or urgency?

Just trying to see if there is a hierarchy of 'badness' (for lack of a better word) when it comes to symptoms.

Thanks
Posted 5/2/2016 12:58 PM (GMT 0)
it's ALL badness when you have UC !
Posted 5/2/2016 2:18 PM (GMT 0)
They're all bad. We all experience those symptoms clearing up in a different order as we heal. For me, blood was the first symptom to go as I healed, for others blood was the absolute last to clear up.

Urgency is the worst of the bunch, if you ask me, as it feeds so much anxiety...
Posted 5/2/2016 2:31 PM (GMT 0)
symptom/discomfort worst?

or inflammation/cancer worst?

or spread vs severity worst?

... i think there is a lot to learn by sorting out the question
Posted 5/4/2016 1:54 PM (GMT 0)
Good point DBwithUC.

I guess the question could be any of those things, but I meant "worst" as in shows that the disease is progressing or the severity is increasing. And that the inflammation is getting more inflamed.
Posted 5/4/2016 2:05 PM (GMT 0)
It's all bad! But right now the worst for me is the urgency- less than one second warning to run to the bathroom and then have horrible cramps. So far have been running to bathroom over seven times. I've forgotten what remission feels like.
Posted 5/4/2016 2:35 PM (GMT 0)
Once you have your sigmoidoscopy, your GI is going to slap a nice fancy title on your UC - mild, moderate, or severe and let you know where that is taking place in your colon.

I usually associate blood with more moderate/severe but going to the bathroom 20 times a day even without blood is no picnic either.
Posted 5/4/2016 2:52 PM (GMT 0)

ElpisUnbreakable said...
Once you have your sigmoidoscopy, your GI is going to slap a nice fancy title on your UC - mild, moderate, or severe and let you know where that is taking place in your colon.

Good point. With that in mind, what should I ask with my follow up? Should I ask how far the inflammation goes? If there are ulcers? Results from the biopsy?

Thanks!
Posted 5/4/2016 4:17 PM (GMT 0)
I would ask your gastroenterologist how far your ulcerative colitis extends? I would ask how severe the inflammation was? They're two separate things and both have a definite impact on your current symptoms, prognosis, and treatment.

Extent
If your uc is limited to just the rectum then it's ulcerative proctitis. If it includes both the rectum and sigmoid colon then it's known as ulcerative proctosigmoiditis. If the entire large intestine is involved then it's ulcerative pancolitis.

Severity
Uc is measured based on the inflammation severity. It's mild, moderate, or severe. Severity is often the big one, if you have severe inflammation then you're flaring badly and your uc symptoms are horrible (when I was last severely inflammed, 20+ bms a day was typical for me). And even a small area of severe inflammation can make our lives miserable and create tons of uc symptoms.

There's no single symptom that's absolutely worse than the rest. Rather the severity of individual symptoms (how much urgency, how much blood) and amount of concurrent symptoms are the best indications of how well you're doing. If you've got many severe symptoms simultaneously then you're flaring badly. If you've got a single symptom (or multiple mild) then you're doing much better. If you have just a single and very mild symptom then you're likely very close to remission, and free of uc suffering. And what that very last, lingering uc symptom is, varies wildly individual-to-individual.
Posted 5/7/2016 7:03 PM (GMT 0)
Pan-colitis with a Mayo Score of 12/12 is the 'worst'.

Adding on complicating things like terminal ileitis and PSC are also 'bad' add-ons to have.

Basically there is (a) the *severity* of ulcerations and inflammation and (b) the length of *distribution* aka rectum, rectum + sigmoid colon, more than that, or pan colitis (entire 6 ft of colon consumed by UC).

Perforation and Toxic Megacolon are also 'worst case' scenarios.

UC always starts in the rectum and spreads upward. It depends on how far 'upward' from the rectum, it goes...
Posted 5/9/2016 5:09 PM (GMT 0)
Hi,
I had my follow up today, and it was overall pretty good. It was rushed (due to me, not the doctor), so I forgot to ask a few key questions.
But based on my sigmoidscopy he said:
-mild inflammation
-going up about 15-20 cm. One patch of visible inflammation there, possible because the supps. don't reach that high?

He said to keep on my enema/supp nightly (or alternating one, then the other). And even when things calm down, try very hard not to forget my pills.

So does this all sound mild?

Oh and I got my blood work back and he said it all looked great. My c-reactive was 0.7, and before it was 1.7, which I think is still low.

Day at a time, one day at a time.
Posted 5/9/2016 6:32 PM (GMT 0)
To answer your original question:

Fevers (that aren't from another source, like a cold) are usually a sign of severe rather than mild disease. Ditto unexplained anaemia.

Type 7 diarrhoea is worse than type 5 or 6 (google the Bristol stool chart). Going every hour is worse than going 3x a day.

Mucus, gas, and urgency, while unpleasant, aren't generally considered to be serious symptoms. Urgency is the pits, but it doesn't actually mean a lot by itself.

Abdominal pain varies massively as a symptom. Generally speaking, extremely severe pain merits a visit to the ER - basically if you can't do anything than roll around and moan in pain, go to ER. Most abdominal pain is milder and can be a symptom of IBS or IBD. Weirdly enough, inflammation by itself doesn't cause pain - the intestines don't have pain receptors to feel pain from inflammation or ulcers. Abdominal pain usually comes from cramping, gas, etc. (Stretching the intestines does hurt them, hence why obstructions are agony.)

Bleeding can have an innocent cause, such as haemorrhoids. In UC though it usually means a flare-up. It's not a super-serious symptom, unless blood is literally pouring out (in which case go to ER) but it should never be ignored either.

Hope this is at least mildly informative/helpful to you.
Posted 5/9/2016 7:32 PM (GMT 0)

MurielM said...
Hi,
I had my follow up today, and it was overall pretty good. It was rushed (due to me, not the doctor), so I forgot to ask a few key questions.
But based on my sigmoidscopy he said:
-mild inflammation
-going up about 15-20 cm. One patch of visible inflammation there, possible because the supps. don't reach that high?

He said to keep on my enema/supp nightly (or alternating one, then the other). And even when things calm down, try very hard not to forget my pills.

So does this all sound mild?

Oh and I got my blood work back and he said it all looked great. My c-reactive was 0.7, and before it was 1.7, which I think is still low.

Day at a time, one day at a time.

Sounds like a good plan and you're improving. Stick with it and you'll likely continue improving. I'd keep up with nightly enemas for a while as the inflammation is within there reach. If you have 60 ml enemas then they'll consistently reach to that patch of inflammation, if you lay on your left side after taking them. Sometimes we have a stubborn patch that persists for a while.
Posted 6/29/2017 6:22 AM (GMT 0)
I'll give you an example of a worst case of ulcerative colitis. I was diagnosed around 21yrs old and peaked at around 23 , at 1st the pain and sicknesses were at times pretty bad so that part was introduced slow , so no luxury of shock when I had surreal pain or when I woke up from death! I was 176lbs of solid muscle that withered away down to 119lbs in 5 - 6 weeks , deficating black blood and chunks of flesh. Had another colonoscopy done , and doc's said we have never seen a colon with more holes through it in their careers. Of course they had to remove my entire colon and make a J pouch with my small intestine and ever since I live for nothing , but a severe low quality of life. Honestly I don't know how I lasted 20+ years , but I have a D.N.R cuz I'm not living through that again...BTW that is not even half of the hell I been through!
Posted 6/29/2017 4:10 PM (GMT 0)
When I was initially diagnosed I found this very helpful. Now after being here on this forum (as a lurker) and now as a regular member, I realize the generic nature of it.

http://www.sciencedirect.com/science/article/pii/S1542356515007879

It sounds like your condition and mine are very similar. But I am a constipation type, so urgings and D are not my issues. Just mucus and blood---blood being the first to go with treatment. So far, I have been unable to eradicate all mucus and it comes back immediately if I stop (or accidentally skip even) an enema.

Good luck to you. Having a plan is a good way to settle the mind, which is my worst enemy in this so far.
Posted 6/30/2017 12:10 AM (GMT 0)
I'd say it's a combination of all- severity, frequency, etc. the urgency and the tenemus is the worst part. It's pretty much all terrible. Sorry you have to go through this.
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