This is a reminder to all about what this discussion board is about, and what it is not about, and a plea for everyone to do their part in keeping this an informative and friendly place of support.

The object here is to share what we have learned through our experiences so that others can be helped by it and to provide support to those who are seeking it.

This is not a place for waging a campaign against a person, a doctor, a hospital, or ideas. It is also not a place to post advertisements or collect information about people to use outside of this site. On that note, be sure you do not display your email address in your public profile, and definitely do not post personal information in the public forums.

This brings me to the point about decorum. We have all sorts of people come here, from all sorts of places, from all over the world. While we don't have to pretend this is the Disney Channel, we should act as if we are talking to children in a classroom or your grandma at the dinner table. That means, try to be as polite as you would be in person in a public place, where you care about what people think of you. That may sound dumb and condescending, but we have people coming here who are frightened and do not know what is going on. We have children that come here. The last thing they need is to wade through a flame war or a debate. That may sound boring to you, but it has been the trend here since Bill J took his time and money and started this safe haven.

Sure it is fine to complain about your problems. But, unless you want help, support or advice, think twice about posting it. Nobody likes to waste their time trying to help, when their efforts are dismissed. I am sure there are web sites for people who want to compare complaints.

Internet trolling is more and more common these days and we all are aware of the intentional trolls- those who disrupt sites for entertainment. But, any of us can become an unintentional troll. That is when your behavior is disruptive, but you did not intend to disrupt. It can happen when you are just having a bad day, or over react to someone else's remark. The result is the same as the intentional troll, with things spinning out of control and away from the topic.

If you see a post that bugs you, try to resist the urge to respond to it, other than the content that is related to this site. You can click on the "hide post" option in the corner so you don't have to see it. You can also click on the member's name and choose to ignore that person.

If you want to have a personal exchange with someone, use personal messaging instead of "airing dirty laundry" on the public forums.

If you find that a post or thread is particularly offensive, inflammatory, or off topic, please use the report post function, to bring it to our attention. If no one complains, we have no way of knowing it is a problem. Don't assume someone else will report it. Reporting does not guarantee that a post will be deleted or edited, but it will be reviewed. Also report offensive private messages.

If you find that you could not stop yourself and post something that does not conform to the site's standards, by all means, use the edit feature on the post to edit or delete your post. Don't think it has to stay there.

All these requests require a certain level of maturity and I have faith that we are capable of it. I thank you all in advance for your cooperation and help!

As Bill J's helper, I do not intend to edit or delete posts unless warranted. I plan on giving a lot of leeway. Here are some examples of what may trigger it:

1. Flame wars- arguments that get heated and out of control, high-jacking the thread

2. Hurtful language and personal attacks (identifying people by name and directly attacking them)

3. Political or Religious posts (I don't mean things like "I'll say a prayer for you or God loves you", but things like Bible quotes or prayer threads that get out of hand)

4. Advertising links (unless it is for a product relevant to the topic)

5. Off topic posts/threads (again, leeway here, but let's not start a fantasy baseball camp or trading card thread)

Hope that makes it clear.

Jan Big Grin

Original Post
As a brand new poster I can honestly say I don't exactly mind when someone shares a platitude meant to be comforting, like "god loves you". However as you pointed out there are posters from everywhere and every walk of life. While we all want support and encouragement, not everyone appreciates religious sentiments or finds them helpful. I am always thankful to people who say such things in social media, because I understand they are being kind and thoughtful from their cultural perspective, on the other hand I have quit some IBD groups because I couldn't stand the constant religious references. I did not want to offend others being supportive, but I was going for support and discussion with other IBDer's not religion.
Hello Jan, me and some other members were talking about meds to stop diarrhea and we mentioned tincture of opium and someone sent me a rude message. Saying that jpouch.org is a no no. And say no to tje jpouch group. Can i forward you this message. I sent him a reply. Im sure he wont send me anymore messages like that.
I think these boards are the best!
They are supportive and informative and positive.
I find them very helpful - with the both the shared info and how they are organized.
Thank you so much for looking after these. They are a wealth of information.

Jen
Hi Jan
Its LJK and wanted to ask some questions to you, if you dont mind. first, Have ou ever heard of a jpouch being horizontal instead of vertical? Well mine is horizontal you know sideways. when I try to use the bathroom I am staining to get it out, could that the position of the pouch I have.
Second, I am now 7 weeks out of surgery and I am still having butt burn BAD. I have tried everything from all the ointments to powders, at times I feel as if the powders work a little better. I am still eating bland food afraid that it will return,but I still get it anyway. Am I doing something wrong?
Last I am still having the leakage issues , like I had when she removed my rectum and created my pouch,It seems to only start at night, wellthen I am up all night in pain, its like a acid leakage, it just started recently so again I have no idea what to do? I would really like to get back to life and so far I am not able to do that. I feel that you are very knoelagable about all this stuff, yhis is the reson I am asking you. My procedure was done at the Cleveland Clinic main campus in Ohio. I have already had a major set back, I had an abstruction, oh my not fun had the NG tube again and just find it to be barbaric, its awfull.So if you or anyone else has any advice i would surely appreciate it, I want my life back. Whow knew it would be this difficult! At least for me anyways, I have lost alittlle over 12 lbs. and had an appt. (post-OP) and we my sisrer and I waited in the waiting area for about 20 minutes, but once we were able to go to the treatment room we waited an hour and a half it would have been longer I think if she didnt say anything. I found thattobe very unprofessional our appt was at 4pm and we did not leave till almost 7pm. Thenonce se was in the room I felt very rushed and was not able to clarify things with her wich didnt seem to evenbother her. I just dont like that! when I was in for my abstruction i spent8 days in that place and just before leaving she comes to me saying we may have to do another surgery on you and make the pouch vertical. I was in shock, why didnt she put inthe proper way the first time? These surgeons have no consideration for someoneelses time. can you believe this !!! would love to hear back from you, you can pm me if thats ok with you thank you in advance!! LJK
If you want to commnicate with me specifically, it is best to use Private Messaging. You do this by clicking on my screen name and choosing "Invite to a Private Topic." Attaching a message to an unrelated thread can go unnoticed. I did send you a PM.

Anyway, I doubt your pouch was intentionally constructed to be horizontal. Most likely, internal scar tissue (adhesions) caused it to heal in this atypical position. Your choices are to wait and see if you adapt to it, or have surgery to repair/reconstruct it. Either way, they would not likely do this until you are months post op, to reduce risks of further complications. Night time leaking is fairly common early in the adaptation phase. I don't think you are doing anything wrong.

Jan Smiler
Thanks Jan.
I finally got around to deleting the last troll.
I am committed to getting more involved in the site and you will see some style changes soon.
Keep me posted on trolls and troublemakers and I will continue to ban and delete.
Thanks again!!
Bill Cool
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momminatorChelleHScott BN2bfreeShylock
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