Interesting Stats; chance of uc progression; flare; colectomy odds based on initial diagonsis

There's also a stat showing the increased chance of progression for left/sigmoid/rectal colitis for those who don't consistently use rectal meds compared to those who do. It was a significant difference in percentage.

I used them very consistently, didn't help, I was an exception to the rule.

The stat about pancolitis makes perfect sense to me... even the lowest numbers that are trotted out say that the lifetime colectomy rate for UC is about 20%. Considering all the people with well controlled UP or colitis confined to the rectum and sigmoid (a population whose colectomy rate seems to be far less than 20%), there must be a population whose colectomy rate is well above 20%.

Levi, you have Crohn's colitis....not ulcerative colitis. Different stats category, no?

I think a lot has to do with the initial medications we're given.

q

Approximately 10% of patients presenting with proctitis will develop a pancolitis (Rowe).

I was one of the 10% :(

Pretty interesting. Also interesting how some GI's dont believe in rectal meds (*cough* *cough* my GI *cough* *cough*)

" Ulcerative colitis is not caused by emotional distress or sensitivity to certain foods (e.g., milk), but these factors have been shown to trigger or aggravate symptoms in some individuals.
"

Word. Let me translate that in layman terms.

UC is not caused by stress nor is it caused by food.  *Kapish* ?

But sometimes, these things can aggravate the issue which is already there.

"Women are 30% more likely to develop ulcerative colitis than men"

I think this article has got this right. There seems to be much more women on this section than men.

I recently had my colon hauled out, after decades with the DD (including, interestingly, a ten year total and med free remission once, just a few years after my initial attack) and I had pancolitis from the outset. I was always an outlier- totally intolerant to all 5ASA's for example (also intolerant of Imuran and two biologics), and except for my initial attack, had little to no rectal activity. Right side was more severe than left side. Pathology after colectomy though was overwhelmingly UC with not the slightest sign of crohns, after years of indeterminate indications before anyone could look deeper into the tissue than is done on a colonoscopy.

I would say that anyone who doesn't have pancolitis and who also tolerates 5ASA's will probably keep their colon for life... And if you have pancolitis plus dont tolerate 5ASA's, sooner or later it will end up going. Though, to be sure, some here seem to find biologics to be wonder drugs. Not me- my body hated that poison.

"Surgery is the only cure for ulcerative colitis."
- I'm not going to touch this one except to say that it should be stated as opinion not fact.

"One of several surgeries may be performed. The most common surgery is a proctocolectomy with ileostomy, which is done in two stages."
- Highly debatable if this is still the most common procedure. Surgeons will tell you that IPAA is the "procedure of choice" for UC nowadays -- I wouldn't be surprised if it was 50/50 now or more common than permanent ostomy. Describing a proctocolectomy with ileostomy as "two stages" is misleading -- the ileostomy has to be created during the same surgery as the colon/rectum removal.

"In the proctocolectomy, the surgeon removes the colon and the rectum. In the ileostomy, the surgeon creates a small opening in the abdomen, called a stoma, and attaches the end of the small intestine (ileum) to it. This type of ileostomy is called a Brooke ileostomy. Waste travels through the small intestine and exits the body through the stoma. A pouch worn over the stoma to collect the waste is emptied by the individual as needed."
- This is pretty much correct, except the matured part of the ileum IS the stoma, not the opening in the abdominal wall.

"For younger individuals, an ileal pouch/anal anastomosis (IPAA) also may be performed, in which an ileostomy is connected to the anus after the rectal mucosa has been removed."
- This is the part that really made me roll my eyes. Age can be a consideration in deciding between IPAA and perm ileo but it is totally wrong to say that IPAA is for "younger individuals." A healthy 70 year old is a much better candidate for a j-pouch than a 20 year old with lots of other health issues. The "ileostomy" is never connected to the anus. In fact, if you have a temporary ileostomy, that part of the small intestine is snipped off and removed before the anastomosis. No mention is made of the ileal pouch itself here which is a pretty major part of the whole affair. Finally, removing the rectal mucosa (commonly known as mucosectomy) is not standard and there is a fair amount of research to suggest that it may be associated with poorer outcomes and QOL (see here: www.ncbi.nlm.nih.gov/pubmed/18847636).

So yeah, in broad strokes it sounds like the standard information, but it's misleading if not downright wrong in parts. It seems like this was summarized by someone who doesn't have medical knowledge themselves.

Well yeah... If you're considering having surgery you kind of need to have the correct information. "Geez doc, do you have to be that precise? Just get in there and start snippin".

My point was that a lot of scientists and doctors don't believe that surgery is a cure for UC. If you get surgery because you read that it's a cure for UC and then you have cuffitis, pouchitis, extraintestinal manifestations, etc you might be kind of upset.

I was not diagnosed by my first GI in 2011, even though she had positive biopsies showing left sided colitis.

I was diagnosed with pancolitis more than a year later.

So which category am I?

Truth. GI wants my colon next month :-/