when did you start to love your jpouch? It seems like sooooo much work! And so much harder than the ostomy!!
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about 2 months in
thanks... 1 month out and miserable. my butt is constantly reminding me i have a pouch. hope to love it more one day. or at least like it.
I'd Have to say about one week out from after the takedown. I was home from the hospital and aside from some butt pain I felt great!
I loved it as soon as they took my rotten, no good, diseased colon out! But seriously, about two weeks after takedown. It takes some people longer than others to adjust but it will happen for you. 
As soon as I got it. Was tired of the bag, even though a pouch does have its frustrations.
Immediately, even though it was rough for the first 6 months. I hated my colon and surgery/recovery was hard, but at least I was dealing with that challenge while being healthy. I hadn't been healthy in over 2 years prior to surgery.
Sue
Sue
Fq, I know it's easy for me to say, but hang in there, it
does get better. As others have said, try not to dwell on
day-to-day comparisons; not even week-to-week; rather try
to look at it month-to-month. You've embarked on a life-
long journey, so it's understandable that the first few
weeks will take some adjustment. As for me, I recall periods
of frustration in those first few months, but it starts to
fall in line with time. Experiment, keep a food diary, learn what
foods work for you, smile and enjoy the ride. Prayers &
Best Wishes, Steve
does get better. As others have said, try not to dwell on
day-to-day comparisons; not even week-to-week; rather try
to look at it month-to-month. You've embarked on a life-
long journey, so it's understandable that the first few
weeks will take some adjustment. As for me, I recall periods
of frustration in those first few months, but it starts to
fall in line with time. Experiment, keep a food diary, learn what
foods work for you, smile and enjoy the ride. Prayers &
Best Wishes, Steve
The first few weeks after take-down don't count. Too much newness & uncertainty-also still recovering mentally & physically from trauma of 2 surgeries. I don't remeber when I started to LOVE it but I would say w/in the 1st few months-once I learned how the new me worked & I could rely on it to do what it was suppossed to do. It does take time so if you're a new J-poucher, hand in there. I, personally, found an ostomy to be a ton of work & had skin problems around ostomy so was thrilled to be rid of it. J-pouches are no work at all. Honestly for me it's like a colon. I have 2-4 BM's a day. I go in the AM before work & then can 7 do go 8-9 hours before I go again. May go 1 more time when I get home from work & then usually 1 more time before I go to bed (2 if I had a lot of snacks). I'm totally continent. I LOVE it! Tough road to get there though so my advice to anyone w/ a new pouch is just hang in there. It takes time.
All the best!
All the best!
I agree with you fq. I'm a month out and I'm not a big fan. Butt burn is awful. Constantly going to the bathroom. Stomach pains. Think about the ostomy quite often. Never thought I'd say I miss it but I kinda do. Hope it gets better as well.
I started loving my J-Pouch after a couple of months when I got past the point of having the spasms and things started to calm down. I only had colitis 2 months before I had to have my colon removed, but I had IBS for years and I hated my colon. All the problems with gas, constipation and then diarrhea. I'm a little more than a year out and I still have around 9-10 bm's in a 24 hour period, but it doesn't bother me. I don't have to worry about eating something and getting really bad cramps and running to the bathroom. I have some control back. Hang in there.
I'm a month out too and I wouldn't say love yet but I'm starting to get the hang of it. I do have BB which I hope won't last long. I spoke with my surgeon yesterday and he said to try and hold it when the urge comes for about an hour if possible. He said this will help stretch the pouch and also get the frequency down. Try not to give in to every urge. He also said the first 3-6 month are the most rapid in adjusting..after that things continue to improve slower for up to a few years. So we need to hang in there.
I think I was always happy -- in fact pleasantly surprised -- with my pouch from very early on, but I think I really started to love "Pouchy" after about 6-8 months, as a lot of the uncertainy and second guessing started to fall by the wayside. Once I realized I wasn't so tired anymore, that I could eat more of the foods I used to love, that I wasn't being woken up by bag changes (I had a lot of leaks with my bag), that I could actually see my stomach and even wear a bikini again, that I didn't have to worry about whether or not my insurance would pay for the next round of ostomy supplies, that I had more clothing choices, that I could actually go jogging and in fact really exercise again and feel comfortable... the list goes on and on. I'm still really happy with my choice and while I didn't hate the ostomy, the pouch is just so much better.
I've had mine 22 years, and I still hate this thing with a passion!!!
From day 1
MarkGregory - have you considered a permanent ostomy?
Love it? 
Sure if I was really into sadomasicism I would I'd love it. Otherwise I'm annoyed with it, hate it, despise it, and only wish there was a way to turn back time now and live or die again with my diseased colon.
Sure if I was really into sadomasicism I would I'd love it. Otherwise I'm annoyed with it, hate it, despise it, and only wish there was a way to turn back time now and live or die again with my diseased colon.
Dog Day - yet you won't take anyone's advice about remedies for your situation and your only purpose seems to be to dissuade others from having j-pouch surgery.
People have spent over a decade on this and other sites giving you support and advice which you won't acknowledge.
All of the symptoms that you've mentioned that you have could be also be something that those with colons also experience. I have many friends (with colons) who don't get more than 7 hours of sleep per night like you. I have many friends who are lactose intolerant like you. And I have many friends who have to make multiple bathroom trips daily and have troubles with certain foods. And they all have colons.
The point is, even IF you still had your diseased colon and you were STILL alive, you just might be experiencing all of the exact same symptoms you have right now. After more than 20 years with something you despise and doing absolutely nothing about it other than complaining, it's time to seriously take a look at other options so you can live the life you want to live. And no, colon transplant will most likely never be an option because it's an expendable organ. Just like appendix, spleen or gall bladder transplants will not be performed.
kathy
People have spent over a decade on this and other sites giving you support and advice which you won't acknowledge.
All of the symptoms that you've mentioned that you have could be also be something that those with colons also experience. I have many friends (with colons) who don't get more than 7 hours of sleep per night like you. I have many friends who are lactose intolerant like you. And I have many friends who have to make multiple bathroom trips daily and have troubles with certain foods. And they all have colons.
The point is, even IF you still had your diseased colon and you were STILL alive, you just might be experiencing all of the exact same symptoms you have right now. After more than 20 years with something you despise and doing absolutely nothing about it other than complaining, it's time to seriously take a look at other options so you can live the life you want to live. And no, colon transplant will most likely never be an option because it's an expendable organ. Just like appendix, spleen or gall bladder transplants will not be performed.
kathy
My Jpouch is awesome. Wouldn't trade it for the world.
I started loving my pouch after my bowels woke up in the hospital. I have been active as can be without lifting over 10 lbs and feel awesome! I sure hope it stays this way!
Whereas your only purpose is to show up after almost every post I make here on your ghost hunt while wearing your rose colored glasses and accuse me of being somebody else, as you did once again here.quote:Dog Day - yet you won't take anyone's advice about remedies for your situation and your only purpose seems to be to dissuade others from having j-pouch surgery.
Excuse me but I didn't know it was a crime to be unhappy with your J Pouch.
I think its only a crime in a couple states.
Of course it's not a crime to be unhappy with your pouch. I think you need to reread what I posted. All of the things that you are unhappy about might not even be associated with your pouch. You've stated that you were lactose intolerant before you had pouch surgery so that's not pouch related. Not getting more than 7 hours of sleep per night is something that many people experience. And as we get older it seems that fewer hours of sleep is needed.
Again, I never said disliking your pouch is a crime. I didn't enjoy mine in the beginning either. But I knew that I either had to sh!t or get off the pot and go for an ileostomy. I wouldn't mind having an ileostomy. However, I do mind surgery and hospitals. So I decided to sh!t.
Most people come to this board for support and advice. The wonderful people here freely give that support and advice. There have only been a very few who come to complain, don't take advice, try to dissuade others from the surgery, and allude to the 'horrors' of life with a pouch. You are one of those.
This go round you've been much more disiplined with your answers and that's appreciated. You've even given some good advice.
I hope you find a solution that will make you happy. Negativity probably isn't going to help at all.
kathy
Again, I never said disliking your pouch is a crime. I didn't enjoy mine in the beginning either. But I knew that I either had to sh!t or get off the pot and go for an ileostomy. I wouldn't mind having an ileostomy. However, I do mind surgery and hospitals. So I decided to sh!t.
Most people come to this board for support and advice. The wonderful people here freely give that support and advice. There have only been a very few who come to complain, don't take advice, try to dissuade others from the surgery, and allude to the 'horrors' of life with a pouch. You are one of those.
This go round you've been much more disiplined with your answers and that's appreciated. You've even given some good advice.
I hope you find a solution that will make you happy. Negativity probably isn't going to help at all.
lol - that made me splurt on my computer screen.quote:I think its only a crime in a couple states.
kathy
Thanks for the humor Mick Zagger!
Sue
Sue
Do me a favor, go back to your high school and retake your civics class. It sounds like you're completely clueless about how a democracy works. There's nothing wrong with hearing both sides of the story. Do I ever interrupt you when you start sugar coating the whole J Pouch story? Nope, whereas if I tell my side, you come here telling me I'm wrong, call me a troll, and the whole 9 yards. I think you should just move to a tolterian country Kathy where the whole idea of hearing it all is forbidden. I'd be more than happy to buy you a 1 way ticket to Iran if you're interested.quote:Most people come to this board for support and advice. The wonderful people here freely give that support and advice. There have only been a very few who come to complain, don't take advice, try to dissuade others from the surgery, and allude to the 'horrors' of life with a pouch. You are one of those.
Unfortunately I know one of the states you're referring to.quote:I think its only a crime in a couple states.
I'm not at all clueless about how a democracy works. And you're absolutely right, hearing both sides of a story is a good thing. I do not sugar-coat the j-pouch story at all. I do not tell you that you are wrong if you give correct information. If you doubt that please go back through you posts and you will see that I don't do that.
You have been a troll in the past (I'm not quite sure what the whole 9 yards is though). And you have upset many people. During this go-round you're offering some good advice. But you're also starting to take that negative stance again. We all know that you are unhappy with your pouch and most of us have tried and tried to help you and give you support. You have not accepted it.
Since you've had your pouch longer than most people (over 2 decades), you may not be aware of the advances that have been made with both ileostomies and continent pouches. Either one of those could alleviate your current problems. (But that's not to say that you might experience other things that you don't like.)
I'd be more than happy to private message you rather than discuss this in public. In fact, I'd prefer it. I suspect that you don't want me to do that because you actually like making things public. So with your permission, may I please private message you? Thank you.
kathy
You have been a troll in the past (I'm not quite sure what the whole 9 yards is though). And you have upset many people. During this go-round you're offering some good advice. But you're also starting to take that negative stance again. We all know that you are unhappy with your pouch and most of us have tried and tried to help you and give you support. You have not accepted it.
Since you've had your pouch longer than most people (over 2 decades), you may not be aware of the advances that have been made with both ileostomies and continent pouches. Either one of those could alleviate your current problems. (But that's not to say that you might experience other things that you don't like.)
I'd be more than happy to private message you rather than discuss this in public. In fact, I'd prefer it. I suspect that you don't want me to do that because you actually like making things public. So with your permission, may I please private message you? Thank you.
kathy
quote:I'm not at all clueless about how a democracy works.
Well then let me post here and tell my story. I'm sorry if you don't like it, but it can help benefit other people to make a rational decision after hearing the whole story. I sure wish I could have heard it all too before I my my decision to get a pouch.
And there you go calling me a "troll" once again, confiming what I said. Why can't you just let it rest already? Could it be you own a patent on the J Pouch? If not you sure act like itquote:You have been a troll in the past
Kathy what ever advice we offer is all subjective. I might not be happy with some of the adice you give, but I let it be and don't criticize you for it. Can't you just let it rest already? Try asking yourself why it's always you following me all over this place? There's nothing to worry about, I'm harmless. I'm sorry, I'm unhappy with my pouch. I noticed somebody else said that on this thread too and you once again had to counter that poster. Get use to it Kathy, just like anything else, not everybody is going to love it. I love my car for example while others dislike it. I'm not worried about what they think though.quote:During this go-round you're offering some good advice.
Took me six to nine months.
I've taken my pouch for granted the last 6 years, not treating it like something that I loved. That's changed, and I now take my j pouch's health very seriously. I finally appreciate having it, and will do whatever I can to keep it.
Dog Day - we'd all love to have you post your story here. Please do.
Could I please private message you?
kathy
Could I please private message you?
kathy
I don't love it and my take down was 12/29/2010. My expectations were way too high as I expected to be cured and feeling better, making it back to work and a good quality of life.
Over 18 months later and everything is still a mess. I'm still on daily pain medication for adhesions and chronic cuffitis. All made my other autoimmune problems are worse. My fibromyalgia with it's chronic fatigue and pain else where in my body are worse than before the surgeries. The doctors have been trying for 18 months to get my thyroid under control - it had been under control for 18 years. I have chronic dry mouth and eyes from 4 medications that I can't stop taking and my gums are receding. The receding gums have exposed the roots of my teeth and they are very sensitive to heat and cold. I brush my teeth with warm water and all my dentist can do about it is put me on special toothpaste and mouthwash.
I've most recently developed migraine headaches.
I had depression and anxiety issues before the surgeries. I also have PTSD now. I use to be the life of the party and now I won't even go to the party.
The Pathology reports of my cuff biopsies say I have acute and chronic Ulcerative Colitis. I still have it, THIS WAS NOT THE CURE. I've been treated for cuffitis for 6 months and now have a new GI at the Mayo Clinic in MN.
Would I do it over again, yes. Do I love it, no. If anything I wish I would have had the surgeries sooner than later. Maybe the rest of my body would have not fallen apart along with my colon. There are no do overs so I'm going forward. I have not been through all of this to quit now.
I'm receiving long term disability insurance benefits and am in the process of obtaining social security disability benefits. I would rather feel well and work.
I appreciate everyone of you for all of your support the last year and a half. I've listened to and taken your advice. I don't need anymore suggestions about diet, Imodium. fiber, probiotics digestive enzimes, et al. Without your advice it would have been a lot longer road.
I don't love my pouch - yet. I might never love it but I'm going to live with it and treat it well. I don't want to go back to an external bag or have further surgery.
Good question. I'm happy so many of you "love" your j-pouches, there is hope for me yet.
Over 18 months later and everything is still a mess. I'm still on daily pain medication for adhesions and chronic cuffitis. All made my other autoimmune problems are worse. My fibromyalgia with it's chronic fatigue and pain else where in my body are worse than before the surgeries. The doctors have been trying for 18 months to get my thyroid under control - it had been under control for 18 years. I have chronic dry mouth and eyes from 4 medications that I can't stop taking and my gums are receding. The receding gums have exposed the roots of my teeth and they are very sensitive to heat and cold. I brush my teeth with warm water and all my dentist can do about it is put me on special toothpaste and mouthwash.
I've most recently developed migraine headaches.
I had depression and anxiety issues before the surgeries. I also have PTSD now. I use to be the life of the party and now I won't even go to the party.
The Pathology reports of my cuff biopsies say I have acute and chronic Ulcerative Colitis. I still have it, THIS WAS NOT THE CURE. I've been treated for cuffitis for 6 months and now have a new GI at the Mayo Clinic in MN.
Would I do it over again, yes. Do I love it, no. If anything I wish I would have had the surgeries sooner than later. Maybe the rest of my body would have not fallen apart along with my colon. There are no do overs so I'm going forward. I have not been through all of this to quit now.
I'm receiving long term disability insurance benefits and am in the process of obtaining social security disability benefits. I would rather feel well and work.
I appreciate everyone of you for all of your support the last year and a half. I've listened to and taken your advice. I don't need anymore suggestions about diet, Imodium. fiber, probiotics digestive enzimes, et al. Without your advice it would have been a lot longer road.
I don't love my pouch - yet. I might never love it but I'm going to live with it and treat it well. I don't want to go back to an external bag or have further surgery.
Good question. I'm happy so many of you "love" your j-pouches, there is hope for me yet.
toughenough - I'm so sorry your pouch isn't letting you enjoy life. I hope someday (soon!) that it starts behaving itself and is a little kinder to you.
Your responses to people going through this process are so helpful. You're a real asset to this site.
kathy
Your responses to people going through this process are so helpful. You're a real asset to this site.
kathy
Thanks Kathy. It isn't just my pouch that is the problem it's everything together. What came first, the chicken or the egg?
I know I will probably get flamed for this analogy, but to me, the j pouch is alot like an organ transplant, in that the body sometimes doesnt like it, and tries to reject it. The j pouch takes a part of our body, and makes it do something it was never meant to do, i.e. store body waste inside it, instead of passing it on thru and out of the body. Some (most?) people's bodies adapt to this new system, and tolerate it very well. But for those of us whose bodies do not like the idea of waste stored in your small intestine, our bodies throws a fit, and it affects our whole health. A poorly functioning j pouch is hard on the whole body, and the cause of others problems too. I always hate to recommend a j pouch just because I know what a living hell it can be with a poorly functioning one. For those of you who do have a good working one, then I am happy for you. I am glad you love yours. I wish I loved mine.
I completely agree with MarkGregory's post. For me the jpouch was worse then the worst of my UC days.. and believe going 30+times a day with UC was not fun. My UC was so bad I ended up hospitalized and had to have an emergency colectomy. But the jpouch was far worse. So I agree with Mark.. I hate to recommend the jpouch because if it is problematic it can truly be a living hell and it can cause so many other whole body problems. And some of us have to be in the 10-20% of jpouch failures. Fortunately mine is now gone!!! Yeah to the permanant ostomy.
I do wonder what the real failure rate for jpouches is though. Because after I got my permanant ostomy it has amazed me how many doctors have told me how many "failed" jpouch patients they have. And really how do they classify the failure rate- is it just sepsis, ishchemia or functional failure, or are things like being antibiotic dependent considered jpouch failure?
I do wonder what the real failure rate for jpouches is though. Because after I got my permanant ostomy it has amazed me how many doctors have told me how many "failed" jpouch patients they have. And really how do they classify the failure rate- is it just sepsis, ishchemia or functional failure, or are things like being antibiotic dependent considered jpouch failure?
Just reading through some of these posts; it's good to hear all sides. I wonder, though, if a lot of our feelings toward the pouch are based on our expectations going in. It's definitely true that some doctors sugarcoat the procedure, basically leading patients to believe they will be "cured." I wonder if it is more these patients, who were painted an unrealistically rosy picture pre-op and who had higher expectations going in, who have ended up being most disappointed when their pouch didn't live up to that.
In my case, I had almost zero expectations. I went into this with a "try and see attitude," with the understanding that I could go back to the ileo if I needed to. I do feel my doctors were both honest and realistic; perhaps even too much so; the general surgeon who performed my emergency colectomy frankly told me that a lot of people hate the pouch. My former GI didn't seem to care much for it either. The two colorectal surgeons I saw were a little more optimistic, but even they didn't paint an overly rosy picture. They were positive, but did caution many of the things that could go wrong. My own research drudged up a lot of negative stories, and for a time I almost considered keeping my ostomy permanent. But I figured I owed it to myself to at least give it a shot so I wouldn't have any regrets down the road. I'm glad I did.
Anyway, my pouch has surpassed my expectations of it. Maybe that's why I love mine. But perhaps if I had higher expectations going in, that might not be the case.
So maybe the more appropriate question is not whether you love your pouch, but rather, is your life with the pouch what you thought it would be?
Mine certainly isn't--I thought it would be much worse.
In my case, I had almost zero expectations. I went into this with a "try and see attitude," with the understanding that I could go back to the ileo if I needed to. I do feel my doctors were both honest and realistic; perhaps even too much so; the general surgeon who performed my emergency colectomy frankly told me that a lot of people hate the pouch. My former GI didn't seem to care much for it either. The two colorectal surgeons I saw were a little more optimistic, but even they didn't paint an overly rosy picture. They were positive, but did caution many of the things that could go wrong. My own research drudged up a lot of negative stories, and for a time I almost considered keeping my ostomy permanent. But I figured I owed it to myself to at least give it a shot so I wouldn't have any regrets down the road. I'm glad I did.
Anyway, my pouch has surpassed my expectations of it. Maybe that's why I love mine. But perhaps if I had higher expectations going in, that might not be the case.
So maybe the more appropriate question is not whether you love your pouch, but rather, is your life with the pouch what you thought it would be?
Mine certainly isn't--I thought it would be much worse.
I have had the J Pouch for 20 years now and it has been a somewhat rocky relationship, especially the last 5 years or so. But all I have to compare it to is the 20 years with ulcerative colitis that came before the J Pouch. My 20 years with the J Pouch, even with all the meds/antibiotics and other junk I have had to take, have been much better than the prior 20 years struggling with UC. Even now, despite some inflammation in my pouch and in the ileum above the pouch, my quality of life is pretty good, I work full time and I know that all things considered, I have been fortunate.
I went to a CCFA support group meeting last night and one of the group members also has a J Pouch. He seems to be doing very well 6 years in, with some issues that I would characterize as minor. I mentioned this board to him and he says he never comes here because he views it as a board that exists basically to service those with serious problems. I don't think that is necessarily true, but I can understand why many people who have well-functioning J Pouches would think that. And I suspect his viewpoint is the viewpoint of many J Pouch lovers out there we have never seen or heard from, and probably never will.
I went to a CCFA support group meeting last night and one of the group members also has a J Pouch. He seems to be doing very well 6 years in, with some issues that I would characterize as minor. I mentioned this board to him and he says he never comes here because he views it as a board that exists basically to service those with serious problems. I don't think that is necessarily true, but I can understand why many people who have well-functioning J Pouches would think that. And I suspect his viewpoint is the viewpoint of many J Pouch lovers out there we have never seen or heard from, and probably never will.
Dog Day/Fred Bird (I think Name Du Jour would be most appropriate for your next name) is back at it. Blah, blah, blah. I have never seen anyone with so much time on their hands who loves to be consistently negative and repetitive. Freddie, perhaps you should use just a quarter of the time you spend stalking these sites, which have all banned you, and get the mental help you need. Let's face it -- what you're doing isn't working for you and darlin' NOBODY is listening. Frankly, nobody has listened since you had your first (of a gazillion) psychotic break on here. I know I'm blowing smoke up your non-coloned behind, because you never listen to any advice that makes sense or could possibly make you feel better because sadly you love being a victim and a troll. You have done horrible things to people on this site and claimed every chance you get that this is the worst place on earth, yet you are constantly here changing your name or trying to get back on. Hmmm, don't you find that odd? The truth is, it's pathetic.
By the way -- why won't you answer Kathy regarding private messaging? I think she hit the nail on the head. You want the public attention. More than likely it's because you have alienated every real person from your life and this is the only attention you get. Not because you have a j-pouch, but because you're a bully and an ass.
By the way -- why won't you answer Kathy regarding private messaging? I think she hit the nail on the head. You want the public attention. More than likely it's because you have alienated every real person from your life and this is the only attention you get. Not because you have a j-pouch, but because you're a bully and an ass.
Oh and one more thing D Dog, please post your story. From beginning to end. You've never once done that in over 10 years. Hey! Maybe it will help you see what we all see and you'll suddenly become a happy, well adjusted, sane, human. Come on big D -- you can do it. Or can you?