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Using cm of inflammation to grade your UC

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Posted 2/21/2011 1:51 PM (GMT 0)
Hi all, it's me MyUC again.  I just have a quick question for all of you.  As you all know I have a tremendous amount of respect for all your combined knowledge.  I have learned more here than I have after meeting about 8 GI docs.  Here's my question.  I know a lot of here refer to our inflammation in terms of cm going into the colon.  I assume it's from the rectum/anus area.  At my last GI appt. the GI doc did  a colonoscopy and said he was very happy with the results, only a little patch of inflammation 5 cm.  He said it was mild and the canasa should take care of it.  From what you all understand is 5 cm a little or a lot?  What is considered a little or a lot in terms of measurements like this?  Am I correct in my understanding that 5 cm means that from the end of the rectum to the end of the inflammation or is that just the measurement of the actual patch of inflammation?  Sorry if I sound confused but I am slightly confused and I was wondering if some of you here could help me.

MyUC

Posted 2/21/2011 2:10 PM (GMT 0)
With Uc, our inflammation is continuous. Meaning that there is no skip pattern. So if your doc says you have 5cm of inflammation, it normally starts from the rectum and moves upward. There is approximately, 4-7" of rectum and I believe the large intestine itself is from 5-7'. So 5cm is not extensive. There are a variety of degrees of inflammation as well, meaning that the worse it gets the more damage is done to the colon and mucousal walls. Mild inflammation might indicate minor friability (maybe redness upon the scope) where severe is heavy ulcerations with bleeding.
Posted 2/21/2011 2:31 PM (GMT 0)

Red34:

Thanks, that makes sense to me.  I forgot about the rule of the no skip pattern.  I am assuming it almost always starts in the rectum and not anywhere else.  So 5 cm out of 7 feet of colon is mild.  Is that correct?  Thanks again for your help.  That helps put things into perspective.  Anyone else?

MyUC

Posted 2/21/2011 2:56 PM (GMT 0)
You also have to take in account that while the cm is important but also the severity. One can have 5cm involved with heavy ulceration while another can have the same 5cm with minimal changes. At my worst, I had heavy ulceration up to 40cm minus the 8-15cm near the rectum due to healing from rectal meds. On my last sig, I had 20cms involved - rectum wasn't bad because of rectal meds but further up, I had one pocket that was severely uclerated with blood clots.
Posted 2/21/2011 3:03 PM (GMT 0)
5 cm. is just short of 2 inches. At this point, only about one-third of your rectum is involved. Usually rectal meds are all that is needed for this level of involvement, but be sure you continue them. That 5 cm. can quickly become 20 if you begin to flare.

Congratulations on such a good report!
Posted 2/21/2011 3:13 PM (GMT 0)
That sounds like a great report to me. My initial scope was severe up to 25 cm. I hope that can be my "stop loss" line and I can stay faithful on my meds and they can work for me so that I don't go beyond that, at least for a looong time.

Most sources I have seen say a length of 150 cm (five feet) for the colon, or either five to six feet. My GI said five to six. A PA I visited at the first GI I had told me three feet for the entire length of the colon! (She was confused about lots of stuff UC related.)

When I was first diagnosed I wanted to know exactly where my inflammation was and how long each segment of the colon is. Why are their such varying lengths given for the length of the rectum? I've always wondered about that.

But, like Judy said, the rectum is probably around 15 cm and you are only 1/3 of that with slight inflammation. The next segment, the sigmoid is 40 cm, eight times the length of your mild inflammation! Congrats!

If there could be any positive to UC it would be this happy feeling after getting a good report. I keep my report from my scope in November in my top drawer of my filing cabinet and look at it every few weeks to get a HECK YEAH! feeling since I am still feeling/doing well as far as I can tell. "Internal hemorrhoids, mild, no signs of active colitis" :-)

Post Edited (Levi) : 2/21/2011 8:59:12 AM (GMT-7)

Posted 2/21/2011 4:04 PM (GMT 0)
Levi, I always wondered about the discrepancies in length too but I chalk it up to everyone is different just like we all have different individual features such as eyes, nose, hair and even teeth. So our innards are probably the same....for instance, I have large lungs - above average size......hmm maybe that is why my husband calls me a windbag?! LOL Just joking :)
Posted 2/21/2011 4:15 PM (GMT 0)
Windbag for large lungs. Hmmm. Probably better than the name one could come up with for having a long rectum. :D
Posted 2/21/2011 11:22 PM (GMT 0)

Thank you all for your responses.  It helps a lot.  I guess it isn't so bad.  Again, a sincere thank you.

MyUC

Posted 8/3/2016 4:21 PM (GMT 0)
Don't necessarily dismiss it, or live with symptoms, MyUC.

I was just talking to someone who had 1/2 the cm of disease that I have (20cm that won't heal since 2012), and she was being put on Remicade.

NB When I had Pancolitis earlier this year, I was told it was all 5 feet of colon.
Posted 8/3/2016 4:49 PM (GMT 0)
This is a very old post.

Severity of inflammation is the most important gage of our symptoms. As a very tiny patch of very severe inflammation can become the bane of our existence and unload torrents of horrible symptoms down on us. In fact, some have had removal of their entire large intestine due to a quarter size patch of severe inflammation that cannot be controlled.

Extent of active disease is more an indication of what medication is appropriate to treat a flare. If it's rectum only then a suppository might work, sigmoid involvement then an enema might work, and so on. A larger extent of active disease might give us a bit more pain and discomfort than a smaller extent would.

Generally, you're worse off having severe inflammation in any cm size, than extensive mild inflammation when you're talking symptoms that we experience.
Posted 8/3/2016 4:50 PM (GMT 0)
5cm also described as mild sounds good. Not as good as 0cm, but good.

However symptoms and cm do not always sync up, and there can be IBS secondary to IBD. There are soem here who had surgery because of large loss of quality of life from a couple cm area that would never heal.

Canasa may get this small patch. IF over time there is no additional improvement, more/different rectal meds may be needed.

Some treatment plans also use a low level of oral meds as insurance against spreading. Sounds like that is why you are on Imuran. If I understand the plan canasa is just being started to get this patch that Imuran is not getting. Sounds like a good plan.

good luck

Post Edited (DBwithUC) : 8/3/2016 10:54:26 AM (GMT-6)

Posted 5/13/2017 6:13 AM (GMT 0)
I have heard of IV Remicade for "just" 10cm of active disease. I have 20cm of active disease and was put on Entyvio 9 months ago.
Posted 5/13/2017 6:18 AM (GMT 0)
6 feet (~200 cm is extensive, 5cm is not. You can still suffer badly. Try enemas (PM) as well as Suppositories (AM). Suppositories alone can allow it to spread upward.

UC flares upward ('bottom up') and heals downward ('from the top down').

Almost always stays present in rectum. Lifetime condition.
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