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Posted 3/7/2016 1:57 AM (GMT 0)

notsosicklygirl said...
It wasn't a negative opinion on surgery that caused the locking, I got that from NCOT earlier, and I didn't close the thread.

It was when UB Tough said that "it was insulting and in poor taste" that I thought she felt badly and I felt that the topic was being misconstrued, that is why it was closed. I felt like she was about to hurl a personal attack on me... "poor taste" is not a very nice thing to say. Stating that someone called you "worthless" when they did no such thing is not very respectful.

Clearly, people were misunderstanding the intent. It was bickering, not productive conversation.

It absolutely was insulting and in poor taste. My response to your request for peoples opinions about disability was gracious. While you didn't say I was worthless, its clear as day implied. I've accomplished all but 1 thing on my bucket list mostly while being on disability. I have hopes and dreams. I may not accomplish my goals as fast as you, but I've still done it. I do thank you and appreciate the apology.

I also continued on with very productive ideas/thoughts about disability in general .....gov't responsibility, lack of funding, housing, emotional support etc.....that's far from bickering. That's asking you to see the bigger picture. There's no reason for you to be worried about going on disability, but there are things you can do to help those of us who are on it.

Again, I thank you for the apology and am truly happy you've beaten UC.

Post Edited (U B Tough) : 3/6/2016 7:00:59 PM (GMT-7)

Posted 3/7/2016 2:38 AM (GMT 0)

iPoop said...
Both sides should be able to respectfully tell their side. No descriptions of ripping anything out. No accusations of trolling. I think when there's strong opinions that are this polar we get emotional and put that extra verbiage in there that just fans the flames and instigates trouble. And that's why things ultimately get locked, when we try that hard to prove ourselves right we draw blood, people get hurt, things get ugly.

I don't have a problem with the ripping-out-my-colon description. I've heard of people being misdiagnosed, and they feel as if their colons were ripped out for no good reason. Some people believe that if their colons still work, then there's no reason to have a surgery.

I just don't want people to glamourize surgery or the choice of not having it. (Not everyone is like this way, though.) I understand that surgery has worked for some, while others are worse off, or they are forced to live with a pouch. I won't convince people to take my medication (but I'll give advice to others when they ask), nor would I try to convince people of getting surgery if I did get it, and it worked.

I want to discuss surgery, though. I want to know the risks and the rewards. I just don't need someone selling it or trying to convince others to get it.

Post Edited (Sibby) : 3/6/2016 7:49:47 PM (GMT-7)

Posted 3/7/2016 2:57 AM (GMT 0)
It would be nice to discuss both sides of a debate without one side being deleted constantly. Can we somehow agree to be openminded and try to balance our opinions while letting pertinent information flow to those who need it?
Isn't that what forums like this were created for? (hoping this post doesn't get deleted like most of mine have lately)
Posted 3/7/2016 10:28 AM (GMT 0)

CCinPA said...
What I have noticed is that it seems as soon as someone starts sharing the negatives about surgery the people with good surgical outcomes get upset. .

Funny, I've noticed it the other way around which is what prompted me to start this thread in the first place. Different people....different prospectives I guess.

Hopefully the next thread about surgery (or with the word surgery in it) can stay open and people won't lose their minds over it. There are many people who really need help and advice on the subject as they are totally out of options like I was. And I'm sorry but if someone asks me how I am now after surgery, I will tell them with much enthusiasm that I'm doing really well. I think I've earned that right after all I've been through. I've certainly never said it was easy....toughest thing I've ever done. I'm all for exagusting all options first.

Oh and I agree with about the threads not getting locked.....maybe just delete inappropriate/against forum rules posts or sentences within the thread instead of shutting the whole thing down.

Hope everyone has a great day today and is well.
Posted 3/7/2016 12:28 PM (GMT 0)
And I think that is why this issue persists, each side believes their side is/has been getting unfair treatment, therefore they're going to get even this time. Often something needs deep roots to get as ugly as fast and consistently as surgery posts here do... that's when mods step in, when that happens.

So, I recommend setting yourself aside and asking yourself is surgery justified in the OP's case? That's always the question at hand. If someone has tried and failed nearly everything, then surgery is recommended (in my mind and by standard medical practice) and should inspire some hope of that things can get better (remember the whole support group thing). Are there bad outcomes, yes and nobody should promise perfect results. However, nobody should promise bad results either. Both sides should state their case/opinion with respect and not baiting others using vitriol (trolling, ripping, etc are prime examples).

We don't get into fights over remicade success stories, we shouldn't over surgery either. If someone is considering surgery then give them a realistic expectation without the sugar coating, but be nice about it. Scaring the crap out of OP's isn't the stated goal of healingwell. Supporting others is, being respectful of others choice in treatments are stated goals of hw. Perhaps the debate and thought in this thread will help improve things. As I say, I'm an optimist.
Posted 3/7/2016 12:46 PM (GMT 0)

iPoop said...
And I think that is why this issue persists, each side believes their side is/has been getting unfair treatment, therefore they're going to get even this time. Often something needs deep roots to get as ugly as fast and consistently as surgery posts here do... that's when mods step in, when that happens.

So, I recommend setting yourself aside and asking yourself is surgery justified in the OP's case? That's always the question at hand. If someone has tried and failed nearly everything, then surgery is recommended (in my mind and by standard medical practice) and should inspire some hope of that things can get better (remember the whole support group thing). Are there bad outcomes, yes and nobody should promise perfect results. However, nobody should promise bad results either. Both sides should state their case/opinion with respect and not baiting others using vitriol (trolling, ripping, etc are prime examples).

We don't get into fights over remicade success stories, we shouldn't over surgery either. If someone is considering surgery then give them a realistic expectation without the sugar coating, but be nice about it. Scaring the crap out of OP's isn't the stated goal of healingwell. Supporting others is, being respectful of others choice in treatments are stated goals of hw. Perhaps the debate and thought in this thread will help improve things. As I say, I'm an optimist.

I think everyone can agree with what's written here. :)
Posted 3/7/2016 3:15 PM (GMT 0)
I don't understand how some could be offended by the admissions of surgery complications even the suggestions of it.

Considering the varied personalities, including the fake ones who are only waiting for those types of threads...it's best to only remove the posts that are offending.

Strange that some who are the worst offenders give the most warm advice....hope all take their own advice when the tempers flare.

I welcome any of the surgery successes and struggles. We've seen members who have gone through absolute hell, and even with the multitude of struggles, they still state that it's better than what they went through before surgery.

Yes, I'll continue to suggest surgery as an option, I see those who have been through any and every medication, supplement, alternative and still are pooing themselves daily, ruining their clothing, cars, etc. I'd beg for surgery before that became a normal of my life functioning.

q
Posted 3/7/2016 3:34 PM (GMT 0)
amen. I have appreciated this forum for a long time and hope I have never sounded preachy about surgery.It's outcomes are varied and the one off's here must be taken as that. Just wanted to say goodbye to Larasmom, in case she spots this. Us old timers do have a few words of wisdom-we have been through the ringer.
Posted 3/7/2016 4:12 PM (GMT 0)
Threads are closed with regard to the "surgery" topic when moderators feel there will be problems.

With that said, if there is any bullying or nastiness with regard to these types of threads, we will close the thread, and we will ban (either temporary or permanent) the poster that is causing problems.

If you can't be cordial and nice, don't participate in the thread.
Posted 3/7/2016 4:17 PM (GMT 0)
I just think that surgery has become overloaded with meaning on this board. It deffo has become overly romanticised and laden with expectations. Nobody on the Crohn's board ever makes that mistake about surgery. Us Crohn's folks are utterly prosaic about it.
Posted 3/7/2016 4:20 PM (GMT 0)
NCOT: Like I said, generally to everyone, if you don't like it, don't read it. If you can't be nice, be quiet.
Posted 3/7/2016 4:23 PM (GMT 0)

Michelejc said...
NCOT: Like I said, generally to everyone, if you don't like it, don't read it. If you can't be nice, be quiet.

I didn't say anything wrong, I'm afraid.
Posted 3/7/2016 4:30 PM (GMT 0)
It's a generation for everyone, not an accusation. Perhaps for Crohns patients surgery is more statistically probable and more acceptable. Gastroenterologists weild surgery like an execution axe in uc, if treatment doesn't work then you'll need surgery. I think many as a result fear it according or look at it as a failure. It's not. Crohn's patients can be more pragmatic, it's par for the course, but resections are certainly smaller in scope and not an entire intestine. The surgery posts here seem to amplify/play on those fears.
Posted 3/7/2016 4:32 PM (GMT 0)

NiceCupOfTea said...
I just think that surgery has become overloaded with meaning on this board. It deffo has become overly romanticised and laden with expectations. Nobody on the Crohn's board ever makes that mistake about surgery. Us Crohn's folks are utterly prosaic about it.

This is the exactly the kind of thing I'm talking about. Who is romanticizing? I have not seen anything of the sort. Everyone says how freakin hard it was/is. Someone asks a question I answer it to the best of my ability based on my experiences. Because I say I'm happy that I had surgery that's romanticizing ? I guess in your eyes no one can say that they're happy they're on Remicade and in remission.
Posted 3/7/2016 4:46 PM (GMT 0)
Surgery is quite different in Crohn's vs UC. In CD you can have surgery after surgery, resection after resection, with no end in sight.

In UC after surgery you can still have major or minor complications but colon inflammation is finally ended because there is no longer any colon to inflame.
Posted 3/7/2016 5:03 PM (GMT 0)
Let her speak. NCOT is a great example of surgery gone wrong. As long as she is polite and offers her side of the story without criticizing anyone, she has a right to speak.

Wonder if X amount of people read a surgery post, and some have considered this surgery, but these people have been misdiagnosed and have Crohns, not UC. People mention the take-down surgery, and the ones looking for surgery believe they can get that, but now they're stuck with that pouch permanently. We don't know how many of us have been misdiagnosed. We also don't know if that person who we're telling to get surgery might actually have Crohns. Like what Coffemate said, these people will continue to have surgeries.

She has a right to discuss her story, just like you. So please let her speak. We don't know how many people have CD and are misdiagnosed. I would want to know this risk if I were considering surgery. Even if people are in their worst flare and have considered the surgery, they could be stuck with many more procedures or a pouch that they were told they would get taken down because of their misdiagnosis. All I am asking is to let her speak and tell her story.

Post Edited (Sibby) : 3/7/2016 10:42:33 AM (GMT-7)

Posted 3/7/2016 6:11 PM (GMT 0)
Yes, please! Should it ever come down to that, I will want to come to this site to learn about surgery. I would want to read about personal experiences written by real people, not just the dry content available on other websites. I have relied on this place (and these people who I pretty much secretly consider kind of friends) to help prepare me for the different tests I've had the past year and a half. It would be sad if somewhere down the line I come here seeking help/advice but don't get any.
I appreciate the fact that efforts are put in to keep things civil here. Nobody wants to get their feelings hurt.
Posted 3/7/2016 6:21 PM (GMT 0)
Hey all voices, opinions are welcome as long as they stay within the forum rules: respect for others, no hijacking, and no flaming are key. When tensions and emotions run high those seem to be forgotten.
Posted 3/7/2016 7:54 PM (GMT 0)
Test...

Edit: Okay, the thread must have been unlocked... :-/

I'll reply a bit later, folks. This amitryptiline has knocked me over the head with a chemical cosh today, I can tell you.
Posted 3/7/2016 8:52 PM (GMT 0)
Wow, I've been out with the flu but the drama continues.

As his excellency Rodney King asked, "Cant we all just get along?"

Not every person is looking for surgical advice. When they want it, they ask. They should be directed to their doctors.

I was told one time by a very smart person.... If you go to a sugeon he will tell you surgery is the answer, if you go to a holistic doctor, they have the answer.

You just have to educate yourself. Talk to real professionals, not faceless, cute screen names in a forum.

Frankly Nobody here really should be handing out advice that serious. Diet advice, butt meds, sure... How to cope...yes. But none of us are doctors and its terrible that you feel qualified to give perfect strangers that advice.
Posted 3/7/2016 10:04 PM (GMT 0)

DMC2011 said...

I was told one time by a very smart person.... If you go to a sugeon he will tell you surgery is the answer, if you go to a holistic doctor, they have the answer.

Wow, what a sweeping generalization. You fail to take into account that surgeons work for many years to become a surgeon so most of them take the Hippocratic Oath very seriously. Your statement about surgeons violates almost every line of the hippocratic oath.

I had to convince my surgeon, he wasn't just going to do it because I showed up at his office asking for surgery. My GI was pushing me for a couple of years to get surgery, my GI thought it was best if I stopped with the medications and had surgery. If I had done it sooner and was healthier then I may have been able to save a step, time, complications and some pain.

I've also seen more than a few threads on HW of people upset that a surgeon wouldn't perform surgery on them.
Posted 3/7/2016 10:26 PM (GMT 0)
The Hippocratic Oath has nothing to do with it. After all if you are a hammer then everyone else looks like a nail. Our job is to consult with different types of health professionals to decide which kind of hammer suits us the best.
Posted 3/7/2016 10:32 PM (GMT 0)
Louise you nailed it! No pun intended!

I have a hard time making my point but that clarified it.

(I am not trying to drag you down with me though!) 😓
Posted 3/7/2016 10:36 PM (GMT 0)
Any reputable surgeon isn't going to perform surgery on a patient unless it is necessary. There are risks involved in surgery.

It's rediculous to say that if you go to a surgeon then the surgeon is going to tell you to have surgery wether you need it or not. It's malpractice to perform unnecessary surgeries.
Posted 3/7/2016 10:38 PM (GMT 0)
It happens all the time.
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