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Is Surgery a true cure? Or do some symptoms remain afterward?

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Ulcerative Colitis
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Posted 1/22/2019 9:16 PM (GMT 0)
A great topic for discussion:

"If UC is only in your colon, wouldn’t removing it cure the UC? Unfortunately, no. Ulcerative colitis is a chronic disease that is thought to be caused by your genes, according to the NIH. Removing your colon doesn’t fix your genes or change your DNA. If you have a UC diagnosis, you’ll have it for the rest of your life. Just because you have an ostomy or J-pouch doesn’t mean you’re cured."

Ulcerative Colitis Myths: Separating Fact from Fiction https://www.healthcentral.com/slideshow/myths-about-living-with-ulcerative-colitis?ap=2008
I'd like to hear from people here about what they think...
https://www.healthcentral.com/slideshow/myths-about-living-with-ulcerative-colitis?ap=2008

(I changed the subject/title to be a bit less provocative)

Post Edited By Moderator (iPoop) : 1/23/2019 8:41:48 AM (GMT-7)

Posted 1/22/2019 10:00 PM (GMT 0)
Link doesn't work - and that might be a good thing, because they just added another myth to their list of myths.

The NIH doesn't say that UC is caused *entirely* or *exclusively* by one's genes. The thinking is that genes play are role but aren't fully determinant of whether or not a person develops UC.

And the rest is just arguing semantics. How can a person have ulcerative colitis if they don't have a colon?
Posted 1/22/2019 10:56 PM (GMT 0)
I try not to sit around all day worrying about where my UC came from.Nor do i worry[try not to] about anything thats might happen today or in future.Don't worry be happy
Posted 1/23/2019 1:32 AM (GMT 0)
I personally don't think this is a great topic for discussion, I think it's an attempt to flame and enrage people. If it gets nasty, I will lock.
Posted 1/23/2019 2:41 AM (GMT 0)
I would consider it to be the ultimate "treatment" but not a cure.
Posted 1/23/2019 4:38 AM (GMT 0)
I think it cures UC, but it doesn't cure the root AI illness. I am still as fatigued as ever. This could be an interesting and useful conversation as long as it doesn't turn into a bunch of fear tactics. I don't think surgery is some miracle either. I am realistic, it is a trade-off that should only be taken if you have no option, but many of us don't, so please don't hate on us, we didn't ask for this, nor did we want it.

I definitely still have something abnormal that makes me WAY more tired than normal folks.
Posted 1/23/2019 12:16 PM (GMT 0)
I don't believe the intent was to be inflammatory (no pun intended). I agree with beave, the entire argument is about semantics. Even saying it is caused by genes is semantics. I can sneeze in two people's faces and one will get sick and the other won't. Genetics play SOME roll in this, just like any illness.

Please no pro vs. con surgery arguments.
Posted 1/23/2019 1:28 PM (GMT 0)
Maybe it's not a cure, but I don't experience UC issues anymore so do I really care?
Posted 1/23/2019 2:53 PM (GMT 0)
I think what annoys me about the idea of calling these surgeries a "cure", is that it seems to be used as a "legislated medical opinion" that keeps many very sick people with UC from getting social security disability and medical marijuana privileges?
Posted 1/23/2019 3:03 PM (GMT 0)
Surgery is no cure, but many UCers don't have a choice, surgery is better that living in an active flare 24/7, I understand that. What bothers me is the way surgery is pushed on patients by the medical community as a cure at times, which it is not. Many people have a multitude of problems post surgery. But as I said, unfortunately it's the only treatment that works for a small percentage of UC patients.
Posted 1/23/2019 3:21 PM (GMT 0)
I think if colorectal surgery was a true cure, then it would be the first line of treatment that we all get. Forget meds, go straight to removal.

I think this is the better semantics of it all: "Surgery is the closest thing we have to a cure for UC as it removes the primary target of our immune attack and removes the resulting intestinal inflammation, and removes the potential for a future flare cycle". It is true that surgery does not make you pre-diagnosis (once pandora's box is opened up there's no undoing it), and we can still have extra-intestinal-manifestations (EIM) of UC even after a surgery (fatigue, joint pains, eye inflammation, among other things). So, yes, UC is for life even after a colorectal surgery, however that quality of life is much improved without flares. Colorectal surgery gives a consistence in bowel function and predictability (something UC doesn't during prolonged flares). Surgery gives you back a good quality of life when medications do not.

However, a remission can still manifest EIMs too. There's really no stopping EIMs for us at all. Sometimes we are lucky in that EIMs parallel our current inflammation levels (joint pains bad when flaring, and gone when in remission) and in that situation a surgery might eliminate the EIM. However, for those with joint pains untethered from the state of active inflammation, then a surgery does not eliminate it.
Posted 1/23/2019 3:29 PM (GMT 0)
I was able to open the original link and it had a lot of other myths. See if this URL works for you all.

https://www.healthcentral.com/slideshow/myths-about-living-with-ulcerative-colitis

For those who otherwise cannot open the link:

www.healthcentral.com said...
There are a lot of misconceptions about living with ulcerative colitis (UC), and with all the information out there, online and off, it can be hard to separate fact from fiction. I find it helps to remember that UC is a chronic, lifelong disease; there is no cure (yet); and while the cause might be unknown, there’s significant evidence that UC is a genetic condition. With that in mind, here are 10 myths about living with the condition.

Myth #1: Diet can cure ulcerative colitis
Myth #2: Diet causes ulcerative colitis
Myth #3: Stress causes ulcerative colitis
Myth #4: Ulcerative colitis is the same as Crohn’s disease
Myth #5: Ulcerative colitis only affects your guts
Myth #6: Ulcerative colitis means cancer
Myth #7: Ulcerative colitis means surgery
Myth #8: Ulcerative colitis is less severe than Crohn’s disease
Myth #9: Removing your colon cures ulcerative colitis
Myth #10: You can heal your guts when you have UC

Remember…
Like all chronic conditions, UC is steeped in stigma and misconceptions. While there are plenty of myths about UC out there, it’s important to do your research and get information from reliable sources.

And regarding the surgery statement:

www.healthcentral.com/ said...
Myth #9: Removing your colon cures ulcerative colitis
If UC is only in your colon, wouldn’t removing it cure the UC? Unfortunately, no. Ulcerative colitis is a chronic disease that is thought to be caused by your genes, according to the NIH. Removing your colon doesn’t fix your genes or change your DNA. If you have a UC diagnosis, you’ll have it for the rest of your life. Just because you have an ostomy or J-pouch doesn’t mean you’re cured.


I think what they are actually saying is rather benign. They are saying removing the intestine does not change why it happened in the first place, which I think is a fair statement to make. You/I might still have some genes that might cause other immune problems.

However, I think they are underselling surgery in that it removes the bulk of one's problems related to UC. I'd unquestionably take a j-pouch over uncontrollable flare that has no end in sight, and a reasonable attempt was made to control it with medications. As it is all about quality of life, and surgery gives that back for those who cannot attain a remission through medical means.

So, I hardly think this is any reason to rally the troops and fight over one article, regardless if someone is pro or is anti surgery. I think the post title is a bit provocative and that along with a non-functional link might've tindered a bit of knee-jerk reaction by some. And if some are offended by that, then I think changing the post title to something more benign would be a fair response, which I am going to do.

Post Edited (iPoop) : 1/23/2019 8:43:51 AM (GMT-7)

Posted 1/23/2019 4:14 PM (GMT 0)
Genes that give susceptibility and disease built on that susceptibility do need to be distinguished. If inflammation in the colon cannot be managed and/or it results in cancer, removing the colon is a difinative treatment. It is semantics if this is called a cure or not.The colitis is definitely cured because there is no colon for colon'itis.

If there is inflammation related issues around the body - these might best be seen as separate syndrome(s) related to immune system, and not as "extra-intestinal" manifestations of UC.

The idea that surgery is a dispositive treatment for UC in the "disability" sense is that it removes the disability. That is all SS disability cares about. Lets not conflate "removing disability" for administrative law related to SS benefits with "cure" in the medical sense.

Statements like "surgery is not a cure" seems more of a reaction to surgery and not really a point about medical treatment. The cancer survivor may as well shout "surgery is not a cure, I still have the genes". Of course we hope medicine will advance to the point where elimination of cancer cells can be doen with out surgical removal of the cancer and marginal healthy tissue.

To be useful this thread really needs to define what it is discussing, and to what ends.
Posted 1/23/2019 4:33 PM (GMT 0)
I dont think it is a cure vs non-cure. It is about getting rid of symptoms of this disease. If you had unsustainable symptoms that reduced your quality of life and getting surgery fixed that, that's a success. Whether it is a cure or not is a moot point.

Personally, I dont care about "cures". I about realistic treatment options that can bring prolonged relief. Whether that's a new medicine or a new way of thinking, I think most are open to a lot of possible solutions.
Posted 1/23/2019 9:23 PM (GMT 0)
I was not trying to "Rally the troops" or "Flame" or "Enrage" people or incite anything , jeez. As my original post said, I thought it would be an interesting topic for discussion and as you can see, all the people posting on this topic have been civil and reasonable. I tried about 10 times to make the link work, I think it has something to do with the slideshow format that the article is in. You make it sound like I purposely posted a non working link which is totally false. I have a web development background, so I know a bit about formatting etc.
The only knee jerk reaction I can see is that of the moderator. Can't we just get along and discuss things here so we can learn to deal with the horrendous disease?

Post Edited (beatUC) : 1/23/2019 2:31:33 PM (GMT-7)

Posted 1/23/2019 10:01 PM (GMT 0)
Most topics about surgery turn into a fight, so I am always wary about what they will become. I do not think you intentionally posted the link without making it active - that would be odd. Sorry if I was rude.

I don't think removing the organ is a "cure", but it is a method of treatment.

The word "cure" in my opinion would typically mean you get restored to your original condition. People have their appendix removed, is that a "cure" to appendicitis? Usually a cure would be, 'you do something', and you don't need to remove it EVER, and it doesn't continue to act up (chronic). Surgery is what can be done to fix the problem currently. Do you still have appendicitis? No, but were you "cured", also no. You eliminated the problem. Should people who suffered from that say they still suffer from appendicitis?

I don't consider myself a UC sufferer anymore. I wouldn't check UC on a form. I don't have it, but I was not cured of it either - I eliminated the problem. Do i have faster transit, yes. A shorter GI tract, yes, a jpouch, yes, but no UC. As people with one AI illness, we are prone to other AI illnesses, we have to accept that, so yes, our genes aren't the best.
Posted 1/23/2019 10:01 PM (GMT 0)
Beat UC i understand what your asking.Yes u don't have UC after surgery BUT u can get auto immune disease[Chrons] somewhere else. UCer23 said it best. Or as my Dad used to say Utilize don't Analyze,if surgery can give u better quality of life then go for it.
Posted 1/23/2019 10:12 PM (GMT 0)
Fair enough, thanks for your replies. smile
Posted 1/24/2019 1:58 PM (GMT 0)
Is there truly a cure to anything then? If you've had anything once, you'll never truly be restored to your prior state since something was altered.
Posted 1/24/2019 2:34 PM (GMT 0)
Hey BeatUC, not slamming you, if that's how you took it. Trying to reduce the conflict not ignite it smile
Posted 1/24/2019 10:56 PM (GMT 0)
I appreciate that ipoop, no worries, thanks.
Posted 1/25/2019 1:48 PM (GMT 0)
I feel like I still have my UC but not in the exact same way I had it before and over the last 30 years I know not all flare ups are the same. Yes they removed my whole colon so I should be cured but I am not. They left my rectal cuff which when I had my UC was inflamed along with my whole colon. Now since my take-down in August I have all the symptoms of being inflamed and the inflammation only got better when I went on antibiotics for 14 days. Off now its been a week and all my symptoms have returned. From what I have read rectal cuff inflammation may be considered a continuation of the ulcerative colitis, which is now occurring in my rectum.

At the end of the day I cant change where this came from I only want it gone, but unfortunately its a autoimmune disease so does it really ever go away or has it been transferred to other parts.
Posted 1/26/2019 9:27 AM (GMT 0)
Borody in Australia who came up with anti-MAP therapy is now using a triple antibiotic combo on UC by targeting fusobacteria.

I think UC is an infection just like Crohn's probably is. When UC patients get their colons removed they can still develop cholangitis in their gallbladders and uveitis in their eyes. A lot of UC patients have other auto-immune diseases too, like arthritis and MS. That suggests an organism.

My colorectal surgeon told me that colectomy isn't a cure for the inflammatory disorder but it removes the most affected organ as well as life threatening inflammation.

I wish they wouldn't call colectomy a cure. Yes it cures colitis. You can't have colitis if you don't have a colon. I don't think it stops the immune irregularities, but if the person has no symptoms then who cares right?
Posted 1/26/2019 10:08 AM (GMT 0)
BeatUC I think it’s a fair question to put out there it has gotten all of us thinking about it.
My arthritis has gone from mild to serve since the day they removed my colon. I have dealt with it since I was 16 years old my arthritis and never had to be medicated for it other then using Tylenol. . This autoimmune disease has decided to start attacking my joints since it no longer has the colon to attack. But I would rather deal with this then bleeding all day long with my UC and having no quality of life.
Posted 1/26/2019 3:30 PM (GMT 0)
Mark I had last of 3 surgeries in August 2018 to remove colon. I'm not having any other issues except I have hernia now which will be corrected by surgery. So we all don't have other areas getting attacked after colon removal. Valli my rectum was horribly inflamed Surgeon told me once it was removed at 2nd surgery. I wonder about my rectal cuff?? Was it removed?? When I had UC I always used Cort-steroids enemas which always worked well til the last few months Gastro said enemas do a great job on rectum area. So I know I had severe UC in rectum area. I'll have to ask Dr about what your going thru and is my cuff still there????
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