pro surgery mob

It's interesting to me that this forum seems ruled by pro-surgery people, including the moderators.
I thought the conventional wisdom believes you are considered "cured" of UC after surgery -therefore all you surgery folks are not dealing with UC anymore. But you like to drown out any posts that don't end in surgery. Aren't there other areas of this forum for surgery issues?
Seems to me this forum should be about UC and how to deal with it, rather than a pro surgery gang, swarming on every post that talks about avoiding surgery and going with meds. Knowledge is power especially with your own health!
Personally, my experience has been very positive with meds, going against the medical establishment that tried to force me into what has proven to be unnecessary surgery. For standing up and sharing my story, I have been attacked here and called "bitter" etc. I think it's extremely important that this information be shared.
I firmly believe that this should be an open forum so that people dealing with this nasty disease can take the available information, make their own decisions about their care and move forward empowered.
Best of luck to all of you.

There are 25 threads on the first page, and only one of them seems to be about sugery, this one, which is complaining about surgery.

I imagine any I'm-at-the-end-of-my-medication-rope thread is going to draw out the pro-surgery folks, if nothing else because that's the medically accepted next step when medications run out.

But those threads also draw out the pro-LDN, pro-diet, pro-enema, pro-worm, pro-whatever folks, too.

It's all a form of support and sharing knowledge and encourangement.

And, personally, I haven't seen any Doc-wants-me-to-switch-to-Apriso threads being "mobbed" by pro-surgery posts.

 

IMHO the point is to try and keep it so that people are helping each other by relating their own experiences and what things have helped and not helped them. The problem with your opinions against surgery is that's not something you have experience with. Your original post made the people who have been helped by surgery feel like you were criticizing their choice and it scared the people who are seriously considering it. So, you're glad you didn't have to have surgery. You went into remission and dodged a bullet. That's great but your opinion that surgery is BAD doesn't mean squat because you haven't been there. It's just like the people who spout off about me being on Remicade when they haven't been in my shoes or been on Remicade. This forum isn't pro-surgery. It is however pro- respect other people's choices!

your missing my point - I DO have experience with docs trying to pull the trigger on surgery WAY before I had a chance to try the meds out. I often wonder how many people never had the chance to see if the meds worked before having irreversible, life changing surgery.
I was pushed very hard towards surgery, my GI doc saying over & over that I needed to have my colon out after seeing me only 3 or 4 times. My case of UC was very severe but it got so much better, because I fought against the GI doc and an entire hospital team hell bent on getting me into surgery.
I'm simply saying, unless your life is just too miserable, just wait, give the meds & exercise a chance, and perhaps you will be OK. For those who surgery has been a blessing, thats great, but in my mind, it must be reserved as a last resort, to save your life.
I fully sympathize with those who reach the point of surgery, but based on my experience, is it always necessary, or do the docs MAKE it necessary.

My doc is the opposite. He wants me to stay on drugs. But both him and I believe it isn't the last resort. It can be another lease on life.
Look at what UC does to our bodies. Malnourished, higher risk of cancer, inflammation in other area's, toxic megacolon. Drugs can cause kidney problems, cancer, osteoporosis, adverse side effects.
Yes, surgery is extreme, I'd be ignorant to believe it wasn't. But we can't have a death grip on our hostile colons when it can put our health at a higher risk.
And I'm not saying surgery is any different. Surgery is irreversible, so is UC. We simply have to weigh the pros and cons for every individual case.

Alinus, most of the posts attacking me were removed by the moderators, and yes I agree the moderators and most people here seem very nice.

Beth75 said...
Sincerely,
The Surgery Mob
mwahahahhahaha

Way off topic, but I heard a high pitched evil tone in my head when I read mwahaha. Kind of funny.

I am not pro-surgery. I am also not against it... When I see people who have been through a long list of medications and are on 60mg of prednisone with no improvement, I can understand why they are opting for surgery and I offer support. I don't think surgery is for everyone, if your UC is well controlled or you're really against it, hold on for as long as you can. I don't want to have surgery and I hope I don't have to but if that time comes, I sure hope people are supportive. I wouldn't want to hear a bunch of negativity. I understand that surgery is a huge undertaking but many people do it and end up getting on with their lives, normally, without medication. It is nice to know it is an option if nothing else helps.

notsosicklygirl said...
I am not pro-surgery. I am also not against it... When I see people who have been through a long list of medications and are on 60mg of prednisone with no improvement, I can understand why they are opting for surgery and I offer support. I don't think surgery is for everyone, if your UC is well controlled or you're really against it, hold on for as long as you can. I don't want to have surgery and I hope I don't have to but if that time comes, I sure hope people are supportive. I wouldn't want to hear a bunch of negativity. I understand that surgery is a huge undertaking but many people do it and end up getting on with their lives, normally, without medication. It is nice to know it is an option if nothing else helps.

I do find you a great moderator due to your honesty and great advice.

Keep up the good work.

Thank you KiWi, I really appreciate you saying that :)
You give great advice too. You're an asset to the board.

i'm pro surgery, and i'm sure i am one of the people your post is aimed at. I make that very clear in every post i make, and i only read posts in here where people mention surgery or being fed up, or at the end of their rope in the title.
I'm not about to push it on anyway, and i almost always end my story with surgery is personal and whether you find help with surgery or meds, i hope you get better. something along those lines.
When i come here and describe my surgery experience, i am doing it simply to help people who are scared and who are seriously considering surgery but don't have any people with real life experiences to draw off of. when i was contemplating surgery this forum was very helpful to me, the UC forum and the Ostomies forum.
Telling people of my surgery experience and how it made my life better, is no different than the people who tell of how the SCD diet or worms, or any number of other things put them in remission. It's simply people sharing their stories, attempting to help people who are dealing with a horrible disease.
In almost every thread i read, everyone respects others, and i rarely see people "pushing" something on another person, i see people just trying to help and respect each other and their decisions. And while i do think surgery is the correct way to go, for me and for people who are tired of being sick, that's just my opinion, and if someone chooses to try remi, or immuran, that's their decision and i would support them and wish the best for them.

Who would stay on a UC forum year after year and moderate it? Someone for whom UC has been a long-term, life-altering issue. Someone who's spent years trying every treatment.

And how do such cases often end? Surgery. So it is quite natural that some of the moderators would have had surgery.

I think the board is pretty open to all ideas. Naturally, people who have had surgery might say positive things about it, because it worked for them and because we as humans seek to validate our choices. People who don't want to get surgery, well, they don't want to hear about it -- it makes them feel like they might end up having to get surgery, and they don't like the thought.

Just remember, the people with mild cases and those who control it easily with medication, they tend to disappear from the board rather quickly. The people who have long-term experience and who are kind enough to spend time on the board and share it are a gift to the rest of is, whether we agree with their thinking or not.

Like Summerstorm, I pop into this forum and browse the titles for surgery related posts where I might be able to provide some information through my experiences.

Last year at this time I wouldn't in my wildest imagination have pictured myself colon-less, as I was in the best remission in my 10 year history of having UC. Yet in a matter of weeks, my UC came back severely and almost took away my health, my ability to do the things I love, and my career.... and possibly my life. Remicade threatened to take away some of those same things due to the pain it caused me. Surgery gave me the life I love back more than I ever could have hoped possible. That is my experience, so of course, that is what I am going to share. My only purpose in coming on the UC board is to give people hope that find themselves in a similar situation, and to help alleviate some of the fears, misconceptions and stigmas surrounding surgery.

You never know when you might be faced with making an extremely difficult decision very quickly with UC. I am so thankful that there was a group of positive "pro-surgery" people on this UC forum to help share their experiences and advice... I didn't even know there was a separate ostomy forum at that time. I will forever be grateful that they shared their stories here.