Ever log onto this website and feel like you can't relate?

Mick as someone who is new to this website I know what your talking about - My daughter just got the j-pouch surgery and I was really concerned about the surgery after initially going through this website. The truth is people post more when their angry and hurt than happy, particularly on a website like this. That being said there are also people like and others who are adding positive comments which have helped give some balance to that. The way we looked at it was she was trading a horrific set of problems for other problems that as I read just don't seem as bad as what my daughter went through. We have our fingers crossed that the adjustment goes well. Who knows. In the end this website needs people who are positive and like you have a sense of humor.

The people who come here are the ones who have issues with their J Pouches, not the ones who have no problems. I am a member of a CCFA support group, the leader of which is a J Poucher. He told me he has never been on this site, although he is aware of it, because he views it as a site for people with serious problems. His issues, as described to me, are minor and mostly involve trying to slow things down. He probably typifies a vast silent majority of J Pouchers in this world, who have either never been here or have visited very rarely, because they have minor issues or no issues at all.

I have had issues with the J Pouch which I would also characterize as minor compared to most of what I read on this Board. I have also felt the same way as MickZagger at times. Since I have had the J Pouch for 20 years now, I figure my experiences can help others. Although my issues are mostly minor compared to those of others, it's not exactly been a cakewalk either, and I have had to figure out ways to resolve issues mostly through trial and error. It is the trial and error aspect of having a J Pouch, I think, that many people here struggle with. It's a mindset that has to be learned over time, i.e., trial and error has to be implemented on an individual basis to solve problems.

I'm only 5 months out of J pouch surgery, but I agree.

I would have definitely stayed away after takedown.

One specific example I remember is that my surgeon told me since I would be going so much, I needed to drink something like gatorade to keep up my electrolytes. I searched gatorade on here before doing so, and all I read were horror stories about how it made you go so much.

After laying on my couch for a week-tired, weak, and depressed... my father made me drink gatorade. And guess what? Nothing bad happened. I replenished my electrolytes by drinking 4-5 gatorades a day and started to get my energy back.

Something new members or members who rarely visit need to know is that all people are truly different. Just because someone says something like "I think this is the reason I'm getting pouchitis" or "I can never ever eat broccoli, I will be in the bathroom all night" doesn't mean it's true for anyone but them. It sometimes doesn't even mean its true from them.

I have been able to eat many things that posters swear to never touch, and I have also been bothered by foods that were "recommended."

People need to use this board for information, yes. But it is our responsibility to weed out the bad information, because like any internet site not everything you read is true, or it might not be true for you.

Take every "problem" you read with a grain of salt.. and personalize your recovery. It's your body and it will work uniquely.

Mick, I don't think you're being insensitive at all. To me, your observations reflect the change in your perspective from being a jpouch 'newbie' to being an experienced user. What's important is the site was here during your hour of need, and I pray it will be here in the future for our collective future needs; whatever they may be.

Like you, I'm not in here that often (or at least not as often as I might like) because I don't have an immediate need. I come in here because (1) I went nearly 20 years without knowingly talking to anyone 'like me' and I very much enjoy knowing I'm not alone; (2) I have over 23 yrs know of positive experience with my jpouch and I feel I have an obligation of sorts to 'pay it forward.'

Here's to your continued good health; and mine too. ;-) Prayers & Best Wishes, Steve

A smart surgeon once said to me. Never go on message boards. I am tempted to remove my account from here because it is really true. I don't get that much out of it and I can't relate. I seem to just get more info from my Ostomy nurses and GI. I stick around to try to educate people but not so much anymore. I also didn't even get a jpouch in the end! lol

Like Vanessa, my surgeon said to stay away from these kind of sites because all the negative stuff will make you crazy. Most people are not having any problems at all. I like to stick around because I know how scared I was before surgery and I like to help out where I can. I would love to see more people come back after surgery and post positive things. Not that I'm dismissing anyone with a problem (I certainly had my share of complications in the beginning) that's why this forum is here and so great but it would be nice for people researching j pouch surgery to read more success stories. The fact is all those success stories are out enjoying their lives.

i have a suspected fistula and am also being treated for a stricture. i am 2 months out, but i think those are not very common complications, or if they are, they are very hard to treat and fix (especially the fistula).

i do hope these are just "blips" in my recovery and i will end up doing very well with my jpouch. to be honest i do not yet see the light at the end of the tunnel, and i guess i relate more to bad experiences and posts on this board, because where i am right now in my recovery.

but it does get inside my head a lot. i hope to eventually get over this hump and be on the other side where i can offer more help and also have some type of "amnesia" with the bad experiences.

i think it all depends where we are in the disease and surgery process. if i am right before or after surgery, reading all this will make me dizzy (i am VERY dizzy right now!!!).

If i am 3-4-20 years later and happy, i might not be able to relate as much at that point in time. or i might have to REALLY think and remember what it was like to go through that, because i would have blocked it out from my memory by then.

i studied this forum and posts a LOT and i think it can be dangerous to use it as a medical guide too much. some tips and support is helpful, but i admit, i am kind of obsessed right now.......

Searching and hoping and praying for answers that i don't have right now. wanting to relate, to not feel alone, to have hope.

i hope to be on the other side some day soon.
i'll try to remember to take it with a 'grain of salt'. lots of good advice, some sad stories, but always a community of those who 'get it'.

When I was told I needed my colon out, I was told to stay away from message boards too! Boredom and curiosity led me here anyway. I've never really had problems with this site though, but there are some that I am staying far, far away from.

When I had my J Pouch surgeries in 1992, this Board did not exist, nor did the Internet as we know it. Al Gore, the claimed inventor of the Internet, had not yet even been elected Vice President.

I had nobody to turn to in those days except former patients of my surgeon. I am sure that he handpicked those who had good results, but I spoke to 3 or 4 of his J Pouch patients. I had no other information. The information I had on pouchitis was vague at best and it seemed like a possible, but unlikely complication, and one I was not worried about with dysplasia in my colon.

I would have been inclined to stay away from this Board, had it existed at the time of my surgery, for the reason that the totality of the posts do not reflect the realistic average experience of the average J Pouch patient, or the majority of patients' average J Pouch experience.

I can definitely relate Mick. I've been sliced open more times now than I can remember due to J Pouch complications. If I had to be sliced open again now, it would just be another day for me. I suppose I'll have enough fun next month receiving a colonoscopy with no anesthesia included.

I wasnt told to stay from these boards, but when I had suspected thyroid cancer I was told not to research it...but ofcourse I did...scared the heck out of me. I remember when I first came on here it was nice to communicate with people who knew about my illness. The closer I got to surgery, the more I freaked out...the late Rick Kamp (aka...Kaboom) talked me in off the ledge more then once. Hearing the bad stuff made me realize that j-pouches don't work for everyone...but I still had to give it a shot. I was one of the unlucky ones...after 2 1/2 years I went back to an end ileo and got my life back. That was a very tough decision also...and I'm glad I had my friends (yes, I consider them friends) here to get me through it. I usually stop by about once a day to see if there are any messages or something I can help with...but the newer people seem to doing a great job. I give alot of credit to "old timers" on this site...who so patiently answer the same questions over and over again...You're all Saints!

I consider myself a very successful poucher. I've had a few issues but I function great 95% of the time. I mainly come to this site now with the intention of helping others as well as educating myself. (I didn't find this site until a year after my takedown, when I was dealing with a bout of pouchitis). Like others, my surgeon had warned me off the internet, saying that the vast majority of stories would be negative and that I'd get a skewed idea of the pouch. And from the limited research I did at that time, he was right. I found only superficial info on the pouch, and out of that, 99% was comprised of people complaining how much they hated it. However, I kind of hope to be a bit of a positive in all of this. There weren't very many resources available to me when I was going through my surgeries. I would have liked to hear some positive accounts of the pouch. I would have liked to hear stories of the people who did go on to have good results. I would have liked to have been able to weed through the confusion, doubt and misinformation. Unfortunately, everything I read was negative, negative, negative. In that sense, I think there is a massive need more positive stories, and that is why I've chosen to stick around here. I feel like this surgery changed my life, and I want to share that with people who may be as lost and confused as I was before the procedure. Basically, my pouch isn't perfect, but I absolutely do feel it essentially gave me a normal life back. I get that some people's ideas of "normal" might not be the same as my own, but if you're willing to look past the small nuisances, as I see them, you can still have a full, successful and rewarding life with the pouch. My motto is: you owe it to yourself to at least try. Try to look past the skewed info. You may find that you love your life with the pouch, so why not give it a shot?

If even one person decides to get a pouch because of a success story here, and then goes on to have an improved quality of life, then I'm satisfied.

I can relate to what you're saying a little. I've suggested this website to a few people in our shoes with a major disclaimer..

Don't read too much into one thing, we're all different, some people get a little over zealous and manic, and other's get a little judgemental and pushy. Read it, gain information like it's google, and pick and choose what works for you. Weed through and tread lightly.

However, this is a support site, so sadly you'll see more sad stories than positive because people come here for help. People don't usually need help in good situations. I personally only come on here and troll around when I feel I have a problem. Luckily most people had a wonderful outcome and don't need to come on here with problems from A to Z and it's wonderful those people with no problems can do two things. 1. give hope to the people that have problems, showing them it is possible to live problem free! 2. Give advice on what they've done to live problem free =)

As a nurse I tell people the worst thing you can do is take to the internet and make yourself crazy with all the things out there. I'm the worst suspect in that crime lol. Sometimes people can't compartmentalize, and I can't blame them when they're scared and know nothing about their situation.

Mick,
Thanks for the thoughtful post. I feel like a success story, but as I get older, wonder how the pouch will hold up. So I come back every so often. One thing I like is to see if the people I have met on the site are still around. I find that the most rewarding part.

MickZagger,

When I come on here I always check the section "Just for Laughs". That kind of balances things out.

Here is something I put on there a while ago to give you a laugh.

Colo-Rectal Surgeon Song......

http://www.youtube.com/watch?v...eature=results_video

Im so thankful for the internet and sites like this, to learn things that my doctors and surgeons never told me, or learn things that the doctors told me were lies. One of my favorite lines from my surgeon was that I will have no more gas, because the colon is removed. Ha! That was a good one! And I think the negative stories are useful also to help temper attitudes that the j pouch has a 99 umpteem gazillion percent success rate. LOL

Another successful poucher here. I have had zero problems with my pouch. It's never really been an issue.

My issue stems from scar tissue. I have had three resections in two years and too many hospitalizations to count.

But it has nothing to do with my pouch, and probably nothing to do with my pouch surgery. My problems started after my c- section.

Soi hope those out there know that there are definitely some basically healthy people On here!

I'm feeling pretty successful. I just got back into martial arts after a 5 year hiatus and it felt great. It's fantastic to be able to go play 18 holes of golf and not worry about the bathroom (same goes for movies, eating out, museums, school work, lab work, yard work, taking my son to the park and whatever else it is I do).

That being said, I will always be on the lookout for medical science to do one better.

I'm a soon to be jpoucher (well, soon to be ostomate for awhile first) and I've been very thankful for all of the information provided on this site. I'm glad for the success stories on the first page and for the success stories in the posts. I also liked knowing what could possibly go wrong. I also know that those who post are those that are having problems. If there are only 100 people posting about problems then that's a pretty good ratio! I also keep in mind that some people had emergency procedures (not necessarily emergency jpouch construction, but emergency colectomy) or other co-occuring problems.

This site has been great for telling me what to expect and some ways for dealing with possible future problems (thinking of butt burn in particular). I would have never though to ask about what exactly they are doing to my rectum (so many possibilities I would never have considered!)



I'm thankful for the people who hang around to provide support...and especially for the old timers who answer the same questions over and over again!! I recently posted about what to take to the hospital before my surgery. I'm sure that question has been asked about a million times!

I didn't find this site until after my take down and it has been a God send for me. I'm not on as much as I was in the beginning, you can see by my number of posts that I use to be the Queen of posters, lol.

I received help with butt burn, digestive enzimes, cuffitis, pouchitis, foods, etc. here. I came home from the hospital drinking gatorade and kept drinking it until I found a better replacement - which I learned about on here. I had sever dehydration problems after my first surgery and still can feel it coming on if I forget to drink enough.

I usually don't have a problem relating to newbies questions because I still remember it all and my surgeries were at the end of 2010.

Support sites are usually for people with problems and I am grateful for everyone that helped me. It can be depressing if you spend too much time on sites like this but I'm glad this one is here.

Mick, my stock analogy for people coming here pre-surgery and/or pre-issue is that it's like coming to a plane crash survivors meetings to get over your mild fear of flying. Technically it can be done, but it's not the greatest idea.

I think most people find this forum the same way. Something is bad, you google j-pouch and end up here. A lot of times that's in the early days when your ass is on fire and you're crapping 15 times a day. The real problem to me is that so much of the information on here is left negative. You're hurting, you post for help, you get help and then 8 times out of 10 that's where the thread stops. The person drifts away in health never to be heard from again until they have another problem. The key part of 'hey that worked I'm feeling better' doesn't exist as much as it should. Also it's assumed that because so much of the board is negative experience that translates proportionally to the overall j-pouch population world wide, when in reality I'm guessing it isn't even close.

I'd like to see a new section called success stories or something where people can go and share positive stories. People do occasionally post 'hey I just wanted to say I'm doing great,' but it's up on the front page for, at best, a day and then disappears into obscurity in the archives. I think a dedicated place to have these stories always present and always available would be tremendously valuable.

Evening

Since coming to this site for me it has been so helpful.POSTIVE I AM NOT ALONE

I think many of us who log on here are not given the proper guidance from our Doctors,Stoma nurses.dietitians.
I know for me my surgeon gave me little guidance stating it is all trial and error with diet.
I have found so many topics to which I can relate.
I yet to see anyone talk about malsborption issues with any medications they are on.

In our journey into health issues no one size does not fit all.BUT many of us can relate.
My last surgery was September 12,2011 I come a long way in a year but still have issues which are being address.Next week I am being scoped Hopefully with a peditric scope.Thank you for who ever posted this issue on another thread.

I have attended on other health issues support groups both in person and here on the internet,For me it has always been 100% postive experience.

Thank you to all those who contribute their experiences .
And try to GUIDE us all

Cassiecass


Colectomy 9/12/2011
ileostomy 6/2011 ER
Inferior Wall MI
Hypothyroid
renal failure
vision woes

LionsPride, that is a great idea. I think we could use a section here for success stories. It would be especially helpful for those researching the surgery, to see that there are many, many people who live full and successful lives with their pouch.

I've had my pouch almost 13 yrs and I'm 82 just so healthy now with out my dieased (sp?) colon.
I have a great life and am so healthy with energy to burn. I'm a dancer and people think I'm in my late 50's and I blame it on getting rid of that sick colon. My wondering is, how many people have taken our suggestions and if it did or not work, we never hear back or at least I haven't. This is one reason I don't come on much any more to say what worked for me or suggest something to try.

Yes, fabulous idea. A success story area in the forum would benefit a lot of people.

My surgeon said to check out the boards but to read everything with a healthy dose of skepticism. He feels the majority of posters are either super happy with the surgery or experiencing a lot of complications. The extreme points of view can confuse people new to internet boards as well as new to the j-pouch.
I am glad the board is here because people have helped me through the tough bumps. I have an active, healthy, all male family and I do not like to complain to them. I can ask for advice here without feeling that I am impinging on anyone's time.
My favorite part is reading the success stories.

I find it sad to hear that so many surgeons say to stay away from message boards. My experience has taught me that there is MUCH surgeons don't / won't tell you ahead of time - either because they don't think it's a big deal or don't want to give you anything to be nervous about ahead of time.

For me, it was the long and difficult "adjustment" period after takedown. For my 8 year old, it was the month of nightime BMs I didn't anticipate. Not everyone feels this way, but I prefer to know ahead of time so I understand what is likely or "normal" and won't freak out about it.

I frequent the site because I think I have something to give back, and to pay it forward. And along the way, I usually end up learning something useful from the others on this site. I have never found a discussion forum filled with so many empathetic and helpful people. That's why I like it so much.

And my surgeon, adding to how much I already think of her, directs all of her j-pouch patients to www.j-pouch.org ahead of time. She loves this site an finds it is a wealth of information and support for her patients.

Steve

I would have gone nuts without this message board when I was diagnosed and going through the surgeries.

I agree that the "General Discussion" forum is weighted with people having problems. . .but I don't blame J-pouch.org. Maybe those of us with no problems should post more frequently?

I'll try, but I fear people might take my posts as bragging. I don't want to brag, but show positive outcomes.

Would a moderator of J-pouch create a "Success stories" forum?

This site is a great source of info when your are struggling. May I suggest starting a jpouch group on facebook.....happy with my jpouch and loving life. make it a happy with jpouch only group. it can be closed or secret but you could give support and give good info so people don't only get upsetting info.

NJK, there are a couple of J-Pouch groups on FB. I think the most popular one with members here is "The J-Pouch Group" and a smaller one is J-Pouchers. And there are probably more. I think they're both closed groups. I belong to both but confess that I'm rarely there, so hopefully someone that is more active in the groups can provide more info on joining.

:-)

I am definitely grateful for this site. It has helped me so much through this, I have gotten some really good tips and it is still a great source of info. So thank you to everyone! However, it also has scared me half to death. I just wish I had known about this site before surgery because I don't think I would have gone through with it.

NJK,
PM me if you are interested in joining the facebook j pouch group(s).

hi putting in my two cents..i wish i had know about this site the first two awful years after my operation because my surgeon made me feel worse about my issues..like i was the only patient he had with my problems in 30 years!!

i have learned a lot on this site hearing things from the people who know first hand about issues after jpouch surgery...in fact after 3 major bad,bad years i learned finally my sad state was because i had chronic pouchitis(which my surgeon never recognized)this site gave me my first understanding of its existence..after finally finding my way from cal. to dr. shen in cleveland and this site did i learn about continual antibiotics to help chronic pouchitis ..and my greatest site find about rotating antibiotics and trial and error(thank you djb huskey actually)

i have learned there are even more issues people have that i did not experience with their jpouches..and how really complicated this all is..and how different it is for all of us..and how there are different degrees of success with this operation which i was lead to believe prior to operation..the end results were going to be a slam dunk(96 per cent satisfaction with operation according to my surgeon..a very well regarded surgeon for jpouches in the west!)

well i learned there were more than 4 percent of folks who had less than stellar results..

bottom line is i would have been more educated even though i did research..and i might have sufferred less stress after if i had the support of this group and understanding of what goes wrong sometimes and so on

moreover, although i am better in controlling my once run away pouchitis i still am feeling a need to read and listen to others and if i can help them in any knowledge i can impart to make their journey to better or good results faster than mine was..

and you know after a good deal of years on this site i am still learning things!!

rebe