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Ulcerative Colitis
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Posted 3/6/2016 6:32 PM (GMT 0)
Please people.....I am asking nicely for the sake of people who need and want info and advice on surgery to stop terrorizing each and every thread that has the word surgery in it. notsosicklygirl started a thread in which people were responding positively and having conversation and lo and behold...guess what happened. This happens to no other treatment topic....only surgery. Why??

Just stop.
Posted 3/6/2016 6:37 PM (GMT 0)
Agreed it's pretty ridiculous. This is a support forum, where we're here to encourage others and offer advice. I understand surgery isn't the 1st line of treatment, it has risks of bad results, and those points are always stated, yet things go off on a tangent. There's gotta be a fair and accurate way to describe the benefits and risks of surgery without getting mean and emotional.
Posted 3/6/2016 6:55 PM (GMT 0)
“stop terrorizing each and every thread that has the word surgery in it...
This happens to no other treatment topic....only surgery. Why?? “

It isn't just the 'S' word, other topics can get the same treatment. The same thing used to happen whenever someone mentioned the 'G' word (gluten). But Gary doesn't post here anymore.
Posted 3/6/2016 7:12 PM (GMT 0)

iPoop said...
There's gotta be a fair and accurate way to describe the benefits and risks of surgery without getting mean and emotional.

The problem becomes when people write hyperboles about surgeries like ripping your colon out and these are the same people who are only speculating and have not had surgery for UC. It's fear mongering which benefits no one. Then the scary noise drowns out the benefits of the positives that surgery has had for some people.

The ignore button doesn't work because the people who it affects/scares the most are the noobies and people who don't participate that often in the forum.

So if you are a newly diagnosed UC patient who finds the forum and see people writing about how horrible surgery is or surgeons ripping your colon out of your body that can be very overwhelming and scary; which is the exact opposite of what a newly diagnosed UC patient needs.
Posted 3/6/2016 7:30 PM (GMT 0)
Agree agree agree! God forbid someone actually have a good outcome. I don't care if you told me you dance naked by the light of the moon while singing I'm a Little Teapot and feel healthier...if you are happier, I'll celebrate that with ya.

its sad.

Thanks to everyone on that thread that gave me advice. I didn't have a chance to respond. But I'll start a new thread after my consult.
Posted 3/6/2016 8:03 PM (GMT 0)

Coffeemate said...

It isn't just the 'S' word, other topics can get the same treatment. The same thing used to happen whenever someone mentioned the 'G' word (gluten). But Gary doesn't post here anymore.

So true. Diet and alternate medication threads often result in bickering. Not always though, often. Surgery threads ALWAYS turn out locked. skull
Posted 3/6/2016 8:09 PM (GMT 0)

notsosicklygirl said...


So true. Diet and alternate medication threads often result in bickering. Not always though, often. Surgery threads ALWAYS turn out locked. skull

You also forgot that with surgery threads there is always another threads about the original thread being locked.
Posted 3/6/2016 8:43 PM (GMT 0)
If someone wants to talk about their surgery experience (good, bad or in between) and you have no desire to know about it then SKIP OVER THE THREAD. Because there are other people who DO want to read about it. We have all been through hell and back again one way or another with this disease. Would be nice if people could be happy for one another if they found relief from this crappy disease no matter how they got there. I don't see anyone condemning someone for saying they are in remission for using Remicade. But God forbid you say you are happy living without your diseased colon. I just don't get it.
Posted 3/6/2016 8:54 PM (GMT 0)
I wonder what would happen and how others would react if I got on and started a thread about how great prednisone is and how everyone should take it. Prednisone is pretty good for me when I take it, but I wouldn't encourage everyone to take it because they will react great to it.

That's what I feel like the other post was about. Not disability. My interpretation was that it was about "surgery is so great and anyone who doesn't get it is making a big mistake and living a compromised life".

Healthy discussion about experiences and outcomes are good for sure. However, let's remember every outcome is different and what is good for one is not always the case for another. The surgery posts just come off as really pushy IMO and i would hate for someone to get it thinking their life is going to be great and then it turns out it's not.
Posted 3/6/2016 9:03 PM (GMT 0)
Yes, please, no more bickering!
I am so grateful for all of the information I read here, be it diet, meds, or surgery. If it weren't for everyone laying all the options on the table, I don't know where else I would learn about half of these options! The bickering makes me sad, I know people have strong feelings about certain topics and I am all for folks having passionate beliefs, but being inflexible isn't going to help anyone.

My grandmother spent the last 12 years of her life with a permanent ostomy for her CD and she said it made her life livable again. I also have a co-worker with a family member who has recently had tons of issues with pouchitis from a Jpouch and is totally miserable, but now I know that either "option" has benefits and drawbacks and I think we should all speak freely about them without attacking one another. I spend a good portion of my day mediating between my kids and I get pretty down when I see adults attacking one another because of decisions they have made. Please always be honest, but also always speak with kindness.
I will now step off my mom oriented soapbox!
Posted 3/6/2016 9:16 PM (GMT 0)
I think the general persona is this, you get surgery once every other treatment has failed. One is at a serious low because nothing has work despite trying many things repeatedly getting failure;frustrating. Surgery improves things almost immediately for those individuals. Suddenly something has worked for them. Does everyone have a perfect outcome? No. Complications (abscess, etc) happen shortly after for some or some get pouchitis later. However, we're talking about some tough as nails individuals, who've been through a lot by any measure. Compared to uncontrollable uc, these things are manageable, something their case of uc wasn't. They've been through a heck of a lot and deserve some respect.
Posted 3/6/2016 9:28 PM (GMT 0)
NSS post was NOT about surgery. The title post was about DISABILITY". (At least I think this is the thread OP was referring too). It was about disability which I took offence too. Surgery was successful for her & as I clearly articulated I was happy for her, but there was no reason to ask for opinions on disability. I find it cowardly to block her very own post when she herself asked for opinions. I gave mine. Telling someone they have no hopes, dreams or value or indepence is down right mean. Some people chose surgery, others don't despite suffering. There are those like me who aren't a candidate. But everyone still has value. As a person on disability , I need support not to be told I have no value.

NSS- don't worry about disability. If surgery worked for you, be happy. Don't look back to whether you should have, could have, what if you ended up being like me. That's in your past.

If you want to discuss disability, let's talk about how the amount of disability is well below the poverty line, how people chose between food or meds, how the wait list for disability housing is 15 years. Let's talk about fund raising, government accountability and how IBDer's can rally together to support each other. Being on disability adds another level of humiliation to this already humiliating disease. I have had 4 cycles of IVIG and 1 cycle of Entyvio in 6 weeks. I'm pretty darn weak. If anyone should be taking a cab to treatment it's me, but my disability doesn't cover the cost of the subway. Let's talk about that. How exactly does the CCF help me?

Post Edited (U B Tough) : 3/6/2016 3:02:57 PM (GMT-7)

Posted 3/6/2016 9:38 PM (GMT 0)
What a great point ipoop about toughness and respect. Those of you who have gone through surgeries are the most battle tested of all of us. I often think of surgery as "just another treatment option" and tell myself if things aren't going well I'll "just have surgery." Of course, this is minimizing the fear, pain, shame, difficult recovery, and wide array of emotions you guys have had to battle through both in dealing with this disease and living through surgery. I can't imagine the courage it takes to ACTUALLY pull the trigger on J-pouch or ostomy. I am really grateful for the information you all provide.
Posted 3/6/2016 10:35 PM (GMT 0)
i didn't think the post kara made was about surgery itself. it was about giving up on yourself by considering yourself a disabled person.

i assumed she started the thread because there was a post on facebook discussing disability because she made it soon after i commented on it. i had mentioned that jobs need to accommodate people who have disabilities and they aren't doing that. i know a lot of strong individuals who are on disability/who are disabled and i would NEVER assume something about them just by the fact that they are not working.
Posted 3/6/2016 11:29 PM (GMT 0)
fact = this forum is not a democracy - don't like it, go away !
fact = if you don't like what folks are saying on a thread, DON'T READ IT !
fact = if you say things against the forum rules, accept that you might get spanked !
fact = certain topics generally get a little testy - deal with it respectfully !

BUT PLEASE DON"T LOCK THREADS YOU GUYS ! edit or delete posts that break the forum rules, and let the fun continue !
Posted 3/7/2016 12:08 AM (GMT 0)
I think it's sad when people who are young say they can't work. I wonder how they will support themselves in the future...

UB Tough, I know your situation is not straightforward and I apologized 2 or 3x for making you feel like you were attacked. beatUC started a thread where I apologized for hurting people but it's gone.

I shouldn't have titled the post disability, it was more about taking opportunities when and if they are available and not easily accepting that you CAN'T do something.

No one said "surgery is so great". I actually said it should be reserved for cases where you do not respond to anything and you're prednisone dependent. I definitely don't think it's a great option or even a good option. It's something that may enable you to say "I CAN", if you're in a really bad place. I was in that place, I couldn't do anything. Anytime someone asked me to do something my response was "I CAN'T". No more...

I am not worried about whether I will end up like anyone. If I end up disabled, I will manage. I have already tried EVERYTHING possible so I would accept it a lot better knowing i've done all I can.
Posted 3/7/2016 12:10 AM (GMT 0)

Rocker Girl said...
I wonder what would happen and how others would react if I got on and started a thread about how great prednisone is and how everyone should take it. Prednisone is pretty good for me when I take it, but I wouldn't encourage everyone to take it because they will react great to it.

Add to that trying to shut down all negative discussion about prednisone by smearing the pred naysayers as much as possible.

I've stayed out of surgery threads for the past few weeks, but that still doesn't stop the same tiny number of people from saying stuff like this, "you're just inviting the anti-surgery trolls to start spouting off about how surgery is the most awful thing in the world" before anyone else has even posted.

I object strongly to being called a troll for a start. But that's not the first personal attack I've had and it certainly won't be the last. I've noticed a bias amongst the mods on this board in not calling them out for it either. If I said similar stuff, you can bet your bottom dollar I would be called out on it. Fortunately for me, I don't actually need to: my arguments stand up on their own merits.

Post Edited (NiceCupOfTea) : 3/6/2016 5:14:15 PM (GMT-7)

Posted 3/7/2016 12:13 AM (GMT 0)
I think it's fine to say you love prednisone. I loved it too. Eventually I hit a point where I was very chubby and I felt awful about myself. I would have preferred to be sick over take it again. That's why I had surgery.

If you don't mind the side effects, that is your business.

I don't think anyone cares about prednisone discussion.
Posted 3/7/2016 12:15 AM (GMT 0)
I am 42, I have (had) Crohn's disease, I have had three surgeries, one emergency surgery after a perforation because of a colonoscopy. Lived with a loop ileo for 2 years. Gave me my life back. Had a total proctectomy in September 2014 and permanent end ileo. I am beyond thrilled with my surgery and no longer having a diseased colon destroying my life. There is zero sign of Crohn's anywhere in my body.

Surgery was not my first choice, hell, I wasn't even given a choice but it saved my life. Looking back if I had known that I would feel as good as I do with my permanent ostomy, I likely would have had the surgery 10 years ago.

Yep, I empty my pouch 6-8 times a day but it's just because I have to pee. I have never been dehydrated or had a blockage. I eat everything under the sun now. I am happy, I am healthy and I have my life back. Just because my experience has been wonderful, I am under no illusion that everyone has the same experience.

When I first had surgery, I was completely reliant upon this forum and I learned so much and told everyone I knew what an amazing forum this was. Now I rarely log on, rarely read the nonsense posts. The posters that were once on here so frequently providing amazing advice are rarely around anymore. For all the new people looking for advice, search old threads, there is a wealth of knowledge there.

For those that are continuing to try and provide advice and get attacked, don't take it personally. Some people are never grateful for anything. It's not you, it's them.

I am logging off now, likely for good. I wish you all well, better health and the strength to support each other in a battle we are all in together.

Happy thoughts!

K
Posted 3/7/2016 12:23 AM (GMT 0)

Larasmom said...
For those that are continuing to try and provide advice and get attacked, don't take it personally.

I'll try not to.
Posted 3/7/2016 12:26 AM (GMT 0)
I don't understand why ALL points of view can't be shared on the various treatments for IBD -- including surgery. 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 and then things spiral and the threads get locked. Not sure why that happens. I agree with JustStud -- if someone is really out of line edit or delete those posts. Locking threads all the time stifles free discussion and the sharing of thoughts and experiences.
Posted 3/7/2016 12:33 AM (GMT 0)
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.
Posted 3/7/2016 12:38 AM (GMT 0)
CCinPA - I've noticed the exact same thing myself. As soon as the 'happy' folks start getting upset, the thread is closed.

Meanwhile, the "debate" has become polarised in the extreme. I never considered myself anti-surgery in the past and I don't consider myself anti-surgery now. In the absence of a cure, I'm genuinely glad we even have surgery as an option. But the fact that I don't LOVE surgery in capital letters and have reservations about it is enough to make me an anti-surgery troll in some people's eyes.

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.

I was negative about my own surgical experiences, not about all surgery in general. A distinction which I'm not surprised wasn't made.
Posted 3/7/2016 12:51 AM (GMT 0)
I want to know all sides of surgery, especially the bad cases. Why? I can't grow my colon back. If I need surgery, I'll consider it. There's always a chance of having the surgery fail or being misdiagnosed.

Am I for surgery? No. Am I not for it? No. But we all should have the right to discuss each side of this topic. Surgery is like talking politics at the family table. We'll never agree, and we'll always pick sides.
Posted 3/7/2016 1:55 AM (GMT 0)
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.
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