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Ulcerative Colitis
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Posted 8/18/2013 10:18 PM (GMT 0)
In preparation for my first surgical consultation this Thursday, I've been reviewing all my GI records since diagnosis. Today I noticed that in December of '11 my disease was said to be measured at 30 cm, my colonoscopy from March'13 reported 70 cm. Is this fast, slow or normal? And yes, I recognize everyone is different. Thanks!
Posted 8/18/2013 10:21 PM (GMT 0)
Mine has always stayed at about 15 cm since diagnosis in 1980.
Posted 8/18/2013 11:57 PM (GMT 0)
I had left sided colitis in 2012 and pancolitis 2013.
Posted 8/19/2013 12:19 AM (GMT 0)
I was dx'ed with pancolitis from the beginning.
Posted 8/19/2013 12:22 AM (GMT 0)
Is 70 cm equivalent to pancolitis? Or rather, the increase? Clearly, I'm just really conflicted.
Posted 8/19/2013 12:29 AM (GMT 0)
No. 70 cm is about 2' 3", which is about half the length of an adult colon. Pancolitis refers to active inflammation in the entire colon.

There is such a wide range of what constitutes "normal" for the course of ulcerative colitis... My disease went from being active in the entire colon except the last foot or so, to involving the entire colon and the terminal ileum (backwash ileitis), over the course of about four months -- and the entire time I was on prednisone.

I would say proctitis is the initial diagnosis that is least likely to spread -- proctitis is more likely to stay proctitis, whereas, say, left sided disease is more likely to expand and perhaps someday become pancolitis. But I'm not at all *surprised* by what you've found in your record. It's not unusual.
Posted 8/19/2013 12:32 AM (GMT 0)
70 cm is less than half the length of the colon. average length from rectum is 172cm. .. so, if no patchiness, this is still mostly left sided with maybe a bit of the transverse. I do not think there is a word for more than left and less than pan.

but where is "conflict" - surgery is not only for pancolitis
Posted 8/19/2013 12:33 AM (GMT 0)
Thanks, Liz. I was initially diagnosed with left sided, and then a different Dr.said pancolitis so who knows? All I know is that I'm totally conflicted as to how to proceed and seriously hope I learn on Thursday where my path will lead.
Posted 8/19/2013 12:36 AM (GMT 0)
DB, conflicted because at times I feel I can tolerate living like this while other times I'd have cut my own colon out and been happier! Tough decision.
Posted 8/19/2013 12:37 AM (GMT 0)
I think a lot of doctors will call anything more than left-sided pancolitis for the reason that DB mentioned, there is no term for in between left and pan. But to echo the same point, surgery is a totally valid choice regardless of the extent of the inflammation. suebear had an ulcer the size of a quarter in her rectum that would not heal, and that's why she had surgery (whereas I had ulcers covering the area of what... hundreds of quarters? haha!) In any case, quality of life is the only important measure. Unfortunately in the case of UC the entire colon has to be removed regardless.
Posted 8/19/2013 12:40 AM (GMT 0)

Twinsmama said...
DB, conflicted because at times I feel I can tolerate living like this while other times I'd have cut my own colon out and been happier! Tough decision.

key word there is tolerate. I tolerated it for a long time until enough was enough. It's tough...I know but I also think you know when you're ready.
Posted 8/19/2013 2:52 PM (GMT 0)
What is actually taken out with a colectomy vs. proctocolectomy? Devising a list of questions for Thursday. What are recoveries and life afterward like? As I understand it, my disease is worst from rectum to transverse colon. Not sure yet what they'll recommend but I'm not interested in doing this again in 10 years so if I do this, I'd want it all done now!
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