J-pouch community,

I have really about had enough of all the fighting and negativity on this site. Lately, every time I post something - there is a negative response plus I have seen a few down right fights lately.

I have gotten a lot of great information and support on this site - and I feel I have given some too. And I was not going to say anything, but now I am - I sent a friend to this site for info and support because she has her step 2 coming up and had never heard of this site. She asked an innocent question about butt burn and it started an all out fight between a few people. In fact, she was so turned off and embarrassed that this had started - she PM'd me to just ask my opinion instead, afraid to post anymore questions. That is fine and I am always more than happy to give my experience - but I felt bad because I was the one who steered her to this site.

I am not saying that I am an expert by any means, but I do have a lot of experience with this stuff - I had terrible, totally med resistant UC and then a progression of ten major surgeries and too many procedures under anesthesia to count. I have had 3 pouches fail and had 3 temp ileos. I had to go to a perm ileo last month. I have traveled from Louisiana to NYC to one of the best GI surgeons in the world for years and years. I am also an RN and have taken care of all kinds of patients in the hospital for many years.

I am not here to give "expert" advice - although I do have a medical back round and do actually know how medications, treatments and surgeries effect the body. Have you read the IBD medical book used by all GI med students (put out by my doctor). I have and actually understand it. I do have an experience to share with others and don't feel it should be dismissed.

I guess this is officially a rant - I totally respect other peoples opinions - totally and 100% - I just wish mine would be respected too. I mean, I made a comment about drinking coffee (1 whole cup a day!!) and I was quoted pages and pages of information about how bad it was for me and I should stop because it was posioning my body. I tried to laugh it off etc, but it continued. I made a comment about MY EXPERIENCE with myself and patients I have cared for during major surgery and periods - and I was dismissed as inaccurate.

I am really sad that I feel like I can not comment or post on this board anymore - I have been through too much in my life to get attacked on this site. I came here for info and support, which I received lots of - and now when I want to be there for others - I feel like I can't.

Too bad for me, I'm done
-Mikaela

I cannot say I have seen the negativity thrown in your direction but from what I have observed over the 8 years I have been visiting this site is a majority of positive, supportive, and encouraging behavior. Like any other discussion board website you are bound to see detractors from time to time. That's just life. As others have pointed out sometimes, via postings, intent can be misunderstood which leads to hurt feelings. I think at those times it's imperative for people to take their discussion off the site and use the PM feature to work out the problems one on one. Sadly in the most recent case the detractor refused to follow that advice and continued to use the site for public argument against another member.

There will always be posts that might scare potential surgery patients; whether it be from content or behavior. People come here seeking solutions to real problems they have and that information in itself might be frightening for someone considering surgery. But if one is ready to commit to surgery, they need to read between the lines to sift the good from the bad and ignore the irrelevant.

I am sorry your friend was offended.

Sue

That would be nice - I am adult and I do know negativity is "just life" and I have been through a lot of crappy life like many others on this site and in the world for that matter.

To be clear, I didn't not say my friend was scared from the replies to her post, it was more very off putting and her concerns were basically disregarded by someone as not a big concern. All I can say is if you think butt burn is not a big concern, then you have never had a bad case of it. People should remember that everyone experiences pain differently - that's why pain is subjective, not objective. One of the main principles taught to me in Nursing school about pain is that you always have to accept your patients stated level of pain - no matter what their face or body language is "saying". Everyone is different.

I guess I am being negative now and I don't mean to be - I just feel like everything I have post lately has been refuted or dismissed.

Whatever - thanks to all those who have been kind to me and given me support over the years - Joan, Shell, Jill and Marcence - I hope you all continue to lead healthy productive lives and help others - I was hoping to do the same.

-Mikaela

Mikaela - I'm so sorry you've had to post this but it's also a very good thing that you are. I think everything you said needed to be said.

Regarding your coffee comment - I took the response to you to be humor since it was in the humor section. As Connie pointed out yesterday (and eloquently as always), "without the visual and auditory cues, much is lost" in online communication. I know that sometimes I read something that someone has posted and I'm sort of surprised and wonder why I'm being attacked. And often I'm not. Other members go through the same thing and have emailed me asking if they're being overly sensitive or if it really IS a negative post. It's very difficult to tell. Perhaps you and the other poster could PM one another and clear things up.

On to the dreaded butt burn post. Yep, you're absolutely right - that post, the Tony Snow post, and the post-operative pain post all got completely out of hand. And all of those posts have been locked.

Bill doesn't often have to babysit us because we're pretty adept at self-moderation. But every once-in-a-while someone comes along who seems to just want to throw a wrench in the works. Who knows why that happens. But the result is that we will have a week or a month of negativity going on which is very disconcerting to almost everyone (except the person who seems to relish stirring the pot).

What happens then is some people try to counterbalance or diffuse the situation which often seems to egg people on. So far, every time this has happened the person trying to inflame ends up taking his toys and leaving. And then we get back to normal.

You'll see that things will now settle down and we'll all go back to supporting one another again. But it's important that your message is heard because the events that have been going on lately have been disturbing to many other people beside yourself. I've gotten quite a few PM's stating basically the same thing that you have.

Yes, I know that I'm one of the people who was right in the middle of the fray and I was trying hard to diffuse the situation. But it developed a life of its own and became much larger than was necessary.

I've pointed out to a few people that in the 8 years that I've been a member here, Bill has had to lock maybe 18 threads. In the last month or so, Bill has had to spend HIS time monitoring us and he ended up closing 4 threads. All four of those threads contained out-of-control discussions exacerbated by one member. Yes, I absolutely take responsibility for my part in those discussions. I tried very hard to take the battle elsewhere and failed. So I apologize to everyone who's felt uncomfortable or angry.

Keep on posting Mikaela - we DO appreciate all of your input!

kathy

This message has been edited. Last edited by: kathy smith,

Kathy,
Very sensible reply!!! You have always had a lovely nice way of saying what needs to be said.

Oh thank you cheerleader Gloria!

kathy

I think that when people are on the site the majority of the time they are in times of coping, stress, strain, depression and transition. We need to be gentle to one another on here and let things go if someone does seem tense in a post - part of us all healing and coping is sharing both our good and bad days. It is funny you posted your concerns on this because I just posted on the blog before reading this a post called "Best Case Scenario" - and I'm asking why is so much easier to see the bad side than the good in life?

http://ucstory.wordpress.com/2008/07/18/best-case-scenario-2/

This site has only made us better people, cope with our unbelivable times of strain. Out of being on jpouch.org has come our blog, our sense of advocacy, our sense of community, and a new awareness that has changed us for so much for the better - Individual perceptions do influence how "services" such as jpouch.org are recieved.

"Awareness of impermanence is encouraged, so that when it is coupled iwht our appreciate of the enormous potential of our human existence, it will give us a sense of urgency that i must use every precious moment" - The 14th Dalai Lama

Megan

I have PM'd Mikaela about the coffee thing to say sorry. And I repeat my apology here. SORRY SORRY SORRY, it was honestly meant as light hearted banter and by quoting a ton of fact I was trying to satirise some of the ridiculously long tangental posts of recent times. If its any excuse, it was in the Just For Laughs forum.

I feel really bad to think I may have upset someone by being so juvenile - I was trying to be a clown. As I hope people get to know me I hope they will realise my character, I am such a positive person all the time and just yesterday posted a thread about Healthy Lifestyle Choices.

I have gained so much from the wisdom I have found in this forum and it pains me to think that my attempts to give back have caused distress.

If I ever sound like a fool again please tell me straight away.

Dan

This message has been edited. Last edited by: _Dan_,

Mikaela,

I'm sorry you were involved in some threads that spun out of control, leaving you feeling indignant. I've had my moments also where I felt like I was banging my head against the wall. It doesn't happen often is about the best thing I can say about that. I haven't been on much lately due to my own and family health issues, so I didn't even notice there was a problem. I have been just focusing on the posts where people didn't seem to be getting answers and maybe needed someone with clinical experience to weigh in.

For the most part, folks here are quite respectful, caring, and honest. Sometimes something will trigger a string of "soapbox" posts that can cause some with the best intentions to be sucked into the mud pit. But, we are all human and subject to human foibles.

So, please try to forgive us and don't stay away when you do have so much experience and knowledge to share. Like Kathy said, these things tend to fizzle out and then the forums are back to normal again.

Jan

I LOVE the kindness and sensibility show here.

Thank you!

Thanks everyone - I'm sure I overreacted, it was just several things piling up and the deal with my friend just made me feel bad/responsible more than anything else. As I said, I have gone through a very very hard time lately having my third pouch fail and having to go to a permanent ileostomy last month - not to mention the stress of having to leave my children for 2 and 3 weeks at a time for treatment and surgery 16 times over the past 2 years. I am probably just a little too sensitive right now and I apologize. I will just lay low from posting for awhile and read stuff like I used to do to keep up.

Dan - please don't feel bad - you are not the one who set me off - I know I mentioned the coffee thing in the original post but it was more some other posts and a few PM's. I think you are a delightful English chap and as I said when we did get to the end of our little "thing" - I appreciate your opinions as I do everyone's opinion - that is what makes us who we are. I want everyone to know DAN IS COOL - no hard feelings!

Gotta go - motherhood calls
Warmly - Mikaela

Mikaela,

If anyone deserves a pity party, I think you qualify. You have to be one of the surgery queens around here and I am not sure anyone else would have given the j-pouch three tries before throwing in the towel. You are a super-trooper, especially with having to leave your kids repeatedly.

We all have our sensitive moments, but sometimes it's not you being sensitive, but someone else being insensitive (sometimes innocently, sometimes deliberately). Just know, we are all giving you a warm, fuzzy hug right now. No need to apologize or lay low.

Jan

I just want to apologize to the Board. I am apparently the person being obliquely referred to as the "detractor" in this thread. It really was not my intention to have any of those threads deteriorate as they did, to "personalize" arguments, or to create unnecessary work for the Moderator. I did think I added something to those threads in the way of information, even if my point of view or the way I put it across may have been perceived as somewhat unusual.

However, I think I have come to understand that my posting style does not work well on a Board like this. It works OK elsewhere, but not here. I am not very good at sugarcoating things and when I post I speak my mind verbatim. I am also somewhat stubborn and opinionated and I did feel that some shots were taken in my direction and some posts were seriously misunderstood from my perspective. I also felt that I was being targeted for rebuttal by several senior members. But I realize that a lot of people coming on the Board are in a fragile state emotionally or physically or both, so, it is kind of not a good idea to have the kind of posting style I have which I guess comes across as confrontational in response to these perceptions. I know it does not work here.

And the truth is after registering in 2007 I stopped posting for a long time because I felt I was out of place here, mainly because although I have some minor issues I appear to be in better shape, at least physically, than most members here are with their IBD. I also know that can change.

Anyway, I apologize to everyone for any perceived upheaval I caused. I think I will likely not post much in the future for the reasons noted above, at least not publicly. In the past, members who have sent me PMs looking for information and/or help, I have always responded to and helped as best I could. That will continue. I wish everyone well.

D-

I can't really comment on whatever posts were problematic, but I think that your apology is genuine and you really do not need to withhold posting, unless you think you are unable to temper your tone when posting. Also, it's best not to copy and paste long informational quotes from other sites. Just post a link and those who want to know more can click on it.

I understand how difficult it can be when you are accustomed to "shooting from the hip" and enjoy a spirited discussion. It seems like censorship, but I try to think of it as just trying to be sensitive to all--or at least most. Nobody is perfect and I think it takes a good man to admit he may have erred. For that kudos to you.

I've been here for I don't know how many years, and it takes a bit of learning curve, especially since different boards are so different.

You have a life's worth of experience, and that means a lot. So, keep posting and just re-read them before you hit the post now button (you also can go back and edit if you rethink your content after the fact--I do it all the time).

Jan

Heavens!!! I hope people do not stop posting. I really appreciate the information and personal view points from 2 or 3 different perspectives. I always feel challenged to think outside the box and/or take myself with an occasional grain of salt.
When things get a little heated it just makes me stop and think more about different opinions and experiences. Sometimes I do have to stop and ask myself what is this person really trying to say or where is this really coming from?

At the end of the day each of us has been through something that most people can't even imagine. It defines us and shapes us and affects how we deal with things. Nobody comes through this unscathed. As a nurse I have always admired the tenacity of the human spirit. I especially admire the dignity that ALL of us have in dealing with these very private issues.
I am a different person because of this. I feel a sense of support and relief from being part of this group. All of us, quirks and opinions included, have something to offer and something to gain.
Jennifer