veteran j-pouchers please keep reminding us...

no problem . one thing I have noticed that has helped me go to the bathroom easier is whenever I workout or am more active. It seems to help move everything through me better and I am able to have a more complete and satisfying bowel movement. Plus it is just good for your overall health to exercise so you are killing two birds with one stone

i will def work out after a bit more. i was a lot of work in the o r so still a little tender...

You are still very early in the recovery phase so just be careful not to overdo it especially if you try to lift at all. Walking, light jogging or any form of exercise will help things move through you better. Going to the track and walking as many laps as I could helped me tremendously both physically and mentally in the early days (first few months). About 4-5 months post TD you will not believe the progress you have made

im excited i do crash really bad after a tough bm though then next morning im happy again. its only been 27 days so...

Tom,
Have you started to gain any weight yet? I seem to remember you were under 100 lbs before your surgery. That had me a little worried. I really like your positive attitude!
Cynthia

i was 97 lbs. i gained 37 lbs the first surgery then lost 17 the second. only put on 3 since then so im at 120 now...

quote:

honesty, you say this but in reality you lie by not telling your true story. thats so strange...


tom,

That's ridiculous. I haven't lied about one thing here. If you think I have, just tell me what it was.

quote:

That's ridiculous. I haven't lied about one thing here. If you think I have, just tell me what it was.

lets put it this way. your signature should read "WHEN IT COMES TO MY J-POUCH I CANNOT TELL MY STORY" lol. you said this but never told your story and thats a lie. (((This is just my story. The beautiful thing about this country is we have the right to choose. As far as I'm concerned, people can learn just as much from my story, and make the right decision))) all you do is complain. im sorry but thats not telling your story.

HITBP,

I don't think your posts in this thread are helpful. Everyone gets that you have not had a good result with your pouch. This thread starter is looking for some positive feedback from pouch veterans who have had better results. Since you have none to offer not sure what your purpose in this thread is. Your experience simply is not the global experience. In any event, CT is looking for some constructive feedback, not a steady stream of doom and gloom.

exactly. the title and body of my post says it all. please respect others wishes. start your own doom n gloom thread so i can pass it over and read mine in peace. kill joy. jeepers im not even 28 days out yet and the vulture is already sizing me up. creepy...

quote:

i want all you veterans to know we new pouchers need constant reminders that the suffering we do is completely normal and we will have a happy future. no matter how many times im told its going to be ok i fall apart after a night of struggle and strain. please give us hope as often as possible because im back to having a hard time believing my future is bright...

Amen DJBHusky....couldn't have said it better myself.

Good for you chasingime for staying optimistic. It WILL be all good in time for you.

thanks djb and marianne

Not everyone has perfect results nor do all of us progress at the same speed...some suffer for months or even longer before our pouches make peace with our bodies and decide to work together for our better good...and some of us, a rare few, do not reconcile their pouches to their bodies...and have to either have their pouches transformed or removed. They are the very, very rare few. You, unfortunately are one of those unfortunates that has not been blessed by biology and nature and I am so sorry for your experience. But you are not the majority, thankfully. If, in fact, your experience is very valuable to us all, and a negative experience is just as important...it is not the chosen topic of this thread...it is in no way a lie to ask for positive stories nor is it a lie to want to hear them...just optimistic.
And optimism is important.
Sharon

I know it is really, really difficult to refrain from replying to negative responses but please try to do so. Replying to the negative people just provides them fodder to continue the negativity. Ignoring is the very best policy in this situation. (You'll notice that negative replies multiply when you try to use reason with negative people.)

kathy

quote:

I know it is really, really difficult to refrain from replying to negative responses but please try to do so. Replying to the negative people just provides them fodder to continue the negativity. Ignoring is the very best policy in this situation. (You'll notice that negative replies multiply when you try to use reason with negative people.)

agree

Thanks for understanding Sharon, the truth is everybody wants to hear both sides of the coin before they make their decision. For example how would you feel if you were betting on a football game and the starting quarterback which the team is so dependent on was injured? But for some odd reason this quarterback decided to keep the news to himself. The end result is you bet on this team and lost, mainly because the quarterback played a bad game due to his injury. That's just one of many reasons why it's valuable information to hear both sides of the coin. I just try to be honest with people, my pouch has its pluses and minuses. I feel you better get ready to make compromises when choosing this surgery. In my case I can see improvements from my Ulcerative Colitis days, but at the same time too, I honestly wish the end result of my J Pouch surgery was better than what I'm stuck with now. It's been frustrating for me, and I wish everybody here the best of luck.

Honesty -- I have never heard you mention pluses. That is great news! Share with us what they are.

Hia Tom
Know exactly how you are feeling as it is still very fresh in my memory. I had single stage surgery in May 2012, then had to have a temp-ileostomy a week later and had my final takedown in August. I too began to doubt sometimes if I was ever going to get better, but just kept faith in my Surgeon who told me it would eventually get better. It was very up and down one vaguely good day out of 7 which was so depressing, then 2 weeks ago I just suddenly started to feel so much better and I have made more progress in the last 14 days than in the whole 5 months since the start. I have more energy than I have had for 20 years and I just don't feel ill all the time any more. To me it is an absolute miracle.....I hope you reach this point soon too. My iron is very low and I am waiting for an infusion so think I will be superwoman after that! We are all different, but biggest tip I can give that works for me is not to eat a meal in the evening which allows me to sleep right through the night without getting up. Makes a huge difference to my energy levels if I get a good nights unbroken sleep. Good luck!
Caroline

honesty,

it is very obvious that your only intention is to make people feel just as bad as you feel about having a jpouch. chasingtime's thread was not about whether or not he should have surgery it was about wanting to here positive stories because he has ALREADY went through with surgery.

It is also very clear that you do not want encouragement from other jpouchers or you would start your own thread looking for solutions to some of your own problems. Instead, you would rather wallow around in your misery and try to take as many other people down with you as possible. Everyone on this site has suffered greatly going through the surgery process and the purpose of this site is to build each other up and try our best to provide solutions to our problems.

It is sad that you are making enemies with the only people that can truly help you.

Fortunately, he's been removed. Yet again! Now this thread can go back to the positive.

kathy

i had honesty ignored and now that he was evicted i see him and cant ignore him. any advice?

There is nothing to ignore, since that member has been removed. You will just need to be watchful of new members posting with a similar agenda.

Jan

what im saying is now i see all of honestys posts when before he was evicted i ignored him and couldnt see him...

The reason is that you cannot ignore someone who is no longer a member. So, once banned, those posts are revealed.

Jan

ah ok

This is the first time I've looked at this message board since the mid 2000's and i can't believe I stumbled on this kind of thread first thing and that this member was just banned! Since 'honesty' is gone, I don't think i can search his previous posts, but from what he's written here, I'd just like to remind everyone that he was one of us. We need to support those who have no where else to turn but websites like this. Not everyone has good outcomes, some of us have complications that do lower our quality of life, some of us DID have this surgery when it was still experimental and don't do as well.

As a support group facilitator for the CCFA for the past few years, I've learned that the people who don't do well are the one's who need tolerance for their experiences the most.

I acknowledge that i don't know anything of his previous posts, that Jan (or whomever is moderating) may have been perfectly justified banning him if he crossed the line from negativity to inappropriate conduct, but either way it makes me sad.

My experiences have not been so great, but that does not make sharing them negative or invalid. Reading this reminds me of previous smilar discussion here in the past and sadly, why I shied away.

Be good to each other, and wishing you all good health.

Sincerely,

Logan
S-Pouch 1987
Revision 2002

B Logan,

The member than was banned has was definately justifiably banned because he has been an instigator and a trouble maker with out of line posts (and innapropriate private messages to people) for a very long time. In fact he has been banned many, many times and keeps coming back to stir up trouble. It's a shame that he can't just seek support....he just wants to cause problems and scare the heck out of new members.

quote:

The member than was banned has was definately justifiably banned because he has been an instigator and a trouble maker

Yeah just like Jesus who meant no harm.

quote:

.he just wants to cause problems and scare the heck out of new members.

What's to be scared of? He's only telling the truth, and you're scared of that?

Logan,

Since you are not a regular viewer of this board, you don't have the history of this poster. He's mentally ill and if you search for the definition of a 'troll' you will learn his true intent. His antics have been going on for over 11 years, not just on this board but on others as well.

Sue

Yes, it is sad indeed. You are reading only the posts that Have NOT been deleted. I usually don't give histories on these things, but I guess it is time.

Members have reached out to him time and again, tying to offer support, ideas, and even just an opportunity to vent. But, he rejects it. Send him a PM asking him to tone it down and he lashes back with threats and tirades. Sometimes he starts out fine, and even has helpful comments, but it always degenerates into a flame war against the j-pouch in general, with dire warnings for anyone and everyone that they are making a big mistake, along with speeches about the first amendment and America. He once tried to get everyone to boycott McDonalds because he could not drink their milkshakes.

He also avoids actually telling anyone what is so terrible about his outcome. The reason is that he is mad that he does not have a healthy colon and the function to go with it, where most of us accept trade offs for better health. From what little he has said in the past, his function is fairly average. He wants a time machine with a do over, where he never had UC. Nice fantasy, but not realistic or useful when people are trying to go forward.

This person is not interested in support, for himself or for others. His goal is to disrupt this site and THAT is the reason he keeps getting banned. It is sad that one person has so much time on their hands and nothing else to do. He his now back and pretending to be like Jesus.

So, yes this is sad, but we cannot make someone follow our simple rules (see the sticky at the top of the forum), and we also cannot allow a single person to redirect the purpose from support to a campaign to stop all further colectomies. I welcome suggestions that have not been attempted. But, at this point, if you see posts you find troubling, report them to Bill J, and choose ignore for that person.

Jan

P.S. We all do truly accept the fact that this person is unhappy with his j-pouch. But, what is the point of coming to a support group unless you want to give or receive support? Some people just enjoy watching Rome burn.

give peace. you have ruined my experience on this board. im new to a j-pouch and im scared looking for support and said those exact words in my title and post so heres your chance right here and now to explain why you would purposely hurt a fellow poster. go...

quote:

give peace. you have ruined my experience on this board. im new to a j-pouch and im scared looking for support and said those exact words in my title and post so heres your chance right here and now to explain why you would purposely hurt a fellow poster. go...

Tom, I am here to support you. Since you're stuck with a pouch now, I can tell you how it's like living with one for 24 years, so hopefully you can avoid some of the bad times I've gone through.

B_Logan - the poster (under many, many names) has threatened people with physical violence. He's talked people out of having life-saving surgery. He wants the law to kill anyone who ever takes a drink of alcohol. As Jan mentioned, he wanted everyone to join in a class-action suit to force McDonalds to serve ONLY lactose-free milkshakes. He didn't care that most aren't lactose intolerant. When people didn't jump on his bandwagon of insanity he really started in on people and threatening them. During one of his recent iterations he went through our member directory and searched out our members who had their emails listed. He then started sending them absolutely unspeakable PM's and emails.

We have a member who's father died. He went after her and told her that it was fantastic that her father died so he didn't have to deal with his daughter any longer. He typically goes after very young and vulnerable people.

You'll note that you can't actually private message him (current name is Give Peace A Chance) because he turns that function off. I would guess that he's been banned from this site close to 100 times.

Oh, and his problems with his 24 year old pouch? He's lactose intolerant. But he was lactose intolerant BEFORE he had j-pouch surgery. He doesn't get over 7 hours of uninterupted sleep per night. How many people with colons do you know who do? He has been dehydrated 3 (THREE) times in 24 years. Yet he forgot to mention that he's a distance runner and runs in the Chicago heat and humidity. How many coloned people would become dehydrated under those circumstances? His doctor has told him that he's a healthy young man. (I would have to agree with that assessment since he's able to run long distances in heat and humidity.)

During this last go-round with him, he's come back a half dozen times with different names after being banned. Bill J and Jan are doing their absolute best to keep up with his antics.

Hopefully this explains what may seem like UNsupport. But it isn't at all. It's taking care of and supporting the majority of our members.

kathy

GPAC/HITBP: Obviously, you want to be a part of this community. Clearly, the manner that you have been communicating isn't working well. Perhaps you should try a different approach and truly "give peace a chance'. Here are a couple of suggestions:

It would be great if you would actually answer questions that are directed at you without lashing out and always going to the dark side and repeating the same old, same old which results in attacks and you always getting banned. Do you see that you are the common denominator? We know you want a certain message to be heard -- well, in order to do that, people have to listen. If you would actually hear what others are asking for and engage in conversations, without turning every post around and making it about you, you'd be much more accepted, heard and appreciated.

Please understand that hating your jpouch is perfectly okay. However, everyone knows it. I think what has happened is that you've dug yourself into a deep, dark, hole and you see everyone that simply asks you to stop repeating the same negativity, or to stop scaring newbies that ask you to stop, as your enemy. Perhaps if you start presenting yourself differently, in a manner that makes people respect your opinion, people will listen and you will be much more effective. I believe you will find it much more enjoyable and comforting than what continues to happen now. After being banned, you log on with a different name, saying the same thing, people completely ignore you or call you out, you get banned again and the cycle continues. That has to be very depressing and lonely.

So -- let's start with a clean slate. Tell us about the pluses of your jpouch experience that you mentioned the other day to Sharon. After 24 years, there must be many.

but peace im not stuck with a j-pouch im honored to have it thanks so much

Blogan, you must understand, posters such as Kathy Smith and Laurie49 are mentally ill. Their ego always gets the best of them here. And even though I just keep to myself, both Kathy and Laurie, as you can see in this thread, constantly show up and are always on the attack.

In fact yesterday I received a PM from Laurie where she used language that is censored in this forum. She also had the nerve to call me a "freak" too. Laurie herself has sent me personal messages consisting of the same kind of behavior. For your own good, the best thing you can do is simply ignore them.

Let's stop the name calling please, and yes, we have no idea who is or is not mentally ill here, so that should be off limits (unless people choose to speak about their own mental health issues).

Some of us are just better than others at controlling impulses, but we can all do a better job at keeping things civil. If you receive a message that you find upsetting or distasteful, please report it to Bill J. It does not belong in the public forums.

I do not want to close this thread, as it started out as being something useful for the original poster, who was looking for reasons to be hopeful for a better future.

Jan

oh my word. i literally just said to my wife "watch GIVE PEACE A CHANCE accuse others of private messaging inappropriate things" man im good...

quote:

Let's stop the name calling please, and yes, we have no idea who is or is not mentally ill here, so that should be off limits (unless people choose to speak about their own mental health issues).

Some of us are just better than others at controlling impulses, but we can all do a better job at keeping things civil. If you receive a message that you find upsetting or distasteful, please report it to Bill J. It does not belong in the public forums.

I do not want to close this thread, as it started out as being something useful for the original poster, who was looking for reasons to be hopeful for a better future.

thank you jan. yeah lets get back on topic. i had a hellish night and could use some hopeful thoughts and advice for my future. i swear if i could just go easily 100% of the time this would be a dream. its that 33% of the time nothing comes and i struggle in pain and crawl back to bed only to repeat thats getting me down. someone explained its the sphincter trying to learn the job of the rectum that causes it. can anyone expand on that and is it true? is there hope these useless painful trips to the bathroom will subside in time? im 4 weeks out btw...