Surgery may not be a cure for UC

i think you stated something up there perfectly, people are having trouble with SURGERY complications. those don't come from the actual UC, yes they come from having had UC, but the disease itself doesn't cause that.

Old Hat said...
My gastro, who subspecializes in IBD treatment & has ca. 30 yrs experience in the field, commented in one of the professional journals a couple yrs ago that, considering the instance of pouchitis & other recurrent post-surgery conditions affecting some UCers, it may be UNFAIR to call colectomy the cure for UC. Meaning: it's not a guarantee of return/restoration to perfect health. Take the example of members here posting after surgery about stoma retraction-- was their surgery a cure? I think it's dangerous to state definitively that surgery is a cure for UC because the public then dismisses our ailment as not life-threatening, so-- not very worthy of funding for further medical research. (And YES-- I also sign on here intending to help UCers get thru stuff I've already experienced, like bad reactions to meds.) / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)

I think that's a very good point you made. Yes, technically you don't have UC anymore when the colon is out. Does that mean your life is great? Maybe, maybe. The attitude of "well your colon is out so now you're cured" does not help those of that go on to have severe complications and issues after surgery. UC isn't considered disabling because there's a "cure". UC isn't considered that big a deal because there's a "cure". Well, so glad I'm "cured"

did they leave part of your rectum?

Whether or not surgery is a "cure" or not is not really relevant to many of us. The fact is that the vast majority of people with UC have surgery when they have no other choice. There aren't that many treatment options, and if they don't work, stop working, or if one becomes steroid dependent, you don't really have a choice.

I wish there were more and better treatment options, but there aren't, at least at this point. There always seems to be some promising drugs in the pipeline, but most tend to fizzle and never reach the market for whatever reason, and the few that do have serious side effects (biologics for example).

I've been in the hospital twice because of my UC, so I know how sick it can make you. I don't take it lightly because I don't want to end up going into surgery during an serious uncontrolled flare where I am crashing in the hospital.

As for the study, it appears that it is biased to make surgery look worse than it is by going back as far as the 1940's. Are you kidding me? Obviously surgical techniques and the field of medicine in general has improved by leaps and bounds since that time. What is relevant is what are the outcomes of people having surgery now, not 70 years ago.

Hi Everyone,

I havn't posted on this site for a good couple of years and have since had all my surgeries. I think the article is very misleading. Officially once surgery is over and without a colon/rectum people with UC are cured. The issues that occur after are surgery related. Unfortunately even though it's only been 2 months since I completed my surgeries, I've had nothing but issues. I've had 2 x full blockages, 2 x strictures and I still go to the loo up to 30 x daily. I suffer leakage problems (usually when asleep) and am scared to death of ever entering in to sexual relations again because of this. And I'm having a host of other smaller issues also. To be honest, I'll be seeing how it is next September and if I'm still facing the same issues I'll be getting an ilieostomy put back in. Given I had two bags to start with from December 2009 to July 2010 before having one removed and then living with one for the next 3 months until September, I'd be happy to go back to one. It wasn't that bad and at least I felt a little more in control.

However I would like to point out that of everyone I've spoken to who's had the same surgery, one has had similar issues to me and infact needed all of the surgery repeated however everyone else I have spoken to has had absolutely no issus whatsoever. I'm always happy to hear those stories and hope that one day I'll also be able to say that I have no more issues post operative.

Tamara

Most who come here have a flare or just time to kill. I always came in here when having issues and wanted to learn. I came after several years in remission again a few months ago just to see the latest on FMT and any new drugs for when Remicade/imuran doesn't work. I also catch up on medical papers and then stay around to help newbies who are first learning about UC or first or second time flarers who might want to hear from one who's been around.
I also catch some folks talking out both ends sometimes and ask others to tell more about products they talk up and encourage them to give evidence supporting how something might have 'helped'.

On the ostomies site you have people who obviously made a very serious and emotional decision after considering and usually living through a lot of pain, suffering and meds so they're talking up about their quality of life improvement. The emotional tend to post more. They feel free from a disease so would obviously be happier than those posting in this forum who just learned of having UC or setbacks from flares and looking for advice on all the different 'naturals'.\ (for complications of surgery one generally just web searches and asks a doctor or nurse as there is no Nopal cure for a bag blowout)...A lot more interest in natural cures spoken of so people linger in here more and once surgery is done you're merely talking what adhesives work better or just saying 'I'm so happy; get your colon removed too but sooner!"

but happier than those with UC...very hard but I say I wouldn't see how.

I know a lot of folks with UC who manage it with mesalamines and some a little prednisone and that's it. Most people just don't have time for these types of forums rather they live in the Facebook world like my sister and workmates.

Good post so I decided to post a comment.

I do this as well. Bring up old posts as is suggested on here rather than re-doing the same again on a new thread.

Yo