I am new to all of this. Had the first of two surgeries for UC. Currently with a loop ileostomy while waiting for the j pouch to heal. I am terrified of having this next surgery (taking down my stoma, hooking up to the j pouch), because I hear so much about people who are unhappy with their jpouch. It doesn't sound like life is much better than prior to surgery, maybe it's worse? Is anybody happy and relatively problem-less with their j-pouch??? Much appreciated!
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Hi Jess! I just had my stoma reversal surgery one month ago. Even though the recovery is painful and requires tons of energy and patience...I would not change a thing! It has been completely freeing not having the stoma/bag anymore. I still have a long recovery road ahead, however can already notice how much easier my life will be after this surgery. I too was VERY nervous for after reading some horror stories. I realized I was committed to having this surgery and ultimately needed to not pay attention to every single bad experience people shared. Instead, I focused on what I could do to prepare myself in the most positive way. The people on this site have been a huge blessing. Any little or big thing asked is responded with such care and great detail. I have asked questions from help easing anxiety, to post surgery supply recommendations, to asking about other people's good/bad experiences. So if you are looking for support in trying to decide what is best for you, ask away on this forum! Reversal surgery or not, most everyone on here are here to help!
Lisa, I can't tell you how much this post meant to me. I'm committed to trying the J-pouch as well. I'm trying to go into it with a positive attitude. It just seems that when I search for answers and tips to get myself prepared, all I find are the comments about bad experiences people have had (which I know is honest and helpful too, but I don't want to get myself down before I start). Thank you and I wish you the best of luck in your recovery!
@Jess Colby Most of the (many, many) folks with completely positive stories aren’t here, reading and responding to posts on a support forum. They are living full, productive lives and giving very little attention to their internal plumbing. Folks with more complicated stories are here, providing lots of help along with (inadvertently) a completely unbalanced view of J-pouch life. We’re happy to help, but please don’t confuse us with a random sample.
@Jess Colby posted:It just seems that when I search for answers and tips to get myself prepared, all I find are the comments about bad experiences people have had (which I know is honest and helpful too, but I don't want to get myself down before I start). Thank you and I wish you the best of luck in your recovery!
As Scott F said, this is a support forum for problem J Pouches, and obviously does not represent a meaningful sample of the true full range of J Pouch experiences across the full J Pouch population. That being said, you probably do want to know in advance of J Pouch surgery the kinds of complications that can occur and how they are treated. Educating yourself about it will help you learn a lot about the entire process and ultimately make things easier for you should you go through complications and have to treat them.
I had J pouch surgery in 1992, and still have my J pouch. In 1992, the Internet as we know it now didn't really exist, and this board certainly didn't exist. I went through as many complications with J pouch surgery as anyone, but everything that happened was fresh and raw and I didn't have any point of reference. Just for example, I never had heard of an NG tube before I got one stuffed down my throat, and I didn't know what an ileus was at that time either. Had the board existed and had I known that those things were part of routinely treated complications, I wouldn't have been sitting in a hospital room bed thinking I was going to die for 24 hours. I would hope you would not want to have that experience either.
Hello.. just wanted to chime in and tell you that my jpouch is great…I am just over a year post take down and have not had any major problems with it. I go to the bathroom a bunch but that is probably due to the fact I LOVE food. I will say the beginning was hard and though my family was very supportive I came here because this group understood what I was feeling and helped me tremendously on my pouch journey. It is all unknown and a bit scary but….. you are not alone we are all here for you and will be here when you need anything…. This group is awesome. Good luck to you and your journey
I'll just chime in here with my 2 cents. I had my takedown in November of 2020 so I'm not even a year out yet. I love my jpouch. I live a normal life. I work out every day. I run, bike ride, swim, or anything else I feel like doing. I'm still trying to fine tune my diet but I'm getting there little by little. I think once you get past the first couple months and you start to get your new body figured out you will also love your pouch. As the others have said it's hard to get an accurate picture by just coming to this site because 99% of the people here are here to talk about their issues. I try to stick around and chime in on posts like this because I remember how happy it made me to read success stories. You should be just fine.
I have had my J-pouch for almost 7 years, I have never had pouchitis or anything major. I solve my dehydration problem by drinking more water and water before during and after every meal, that helps prevent blockages too.
Never had a blockage with my J-pouch.
I have 14-20bms a day but I am happy 
Hi all! Thank you for all the wonderful and informative messages. I certainly didn't mean to imply that when I looked at the posts from this group, all I saw were the downfalls of j-pouches. I understand that this group is here to support one another through those problems. I just meant that when I looked at the greater internet as a whole, I was finding so many downsides of having a j pouch. That probably isn't the best place to look either 
So I was inquiring here to see if people are overall happy or not with their pouch. I am committed to having my ostomy take down and starting my j pouch journey with a positive attitude. I am so glad this group is here for myself and everyone else.
I just had my takedown last week. The first week has been very hard no way around it. But as others have said things improve and this is what I’m counting on. Even after 5 days my bowel is beginning to understand what to do, it all takes time. Just be positive and hope for the best!
Jess,
The most important thing is quality of life with the J pouch, regardless of what the issues are. I had lots of issues both right after surgery and in the 30 years since (mostly battling pouchitis and later Crohn's or "new disease process"), but for me the treatment of the issues has been mostly pretty successful and the quality of life very good very consistently for almost 30 years. It's important to recognize that although issues can arise, in most cases they can be treated effectively. And in my case they have been, and as a result, I have been happy with the J Pouch.
One of my surgeons made a prescient comment to me about J Pouches generally, back in the 1990s when I developed some issues with my J Pouch. He compared them to the British sports car Jaguar, which as he said "is a really great car, but it spends a lot of time in the shop and needs to be tuned up and repaired a lot." The statement is certainly true about the car and in some cases the J Pouch. In my case, this analogy has proven to be somewhat true, but the "maintenance" has mostly been meds and treatments. More recently, dilations. But the quality of life hasn't ever really wavered. It's been a good ride, maybe even a great ride. I never did ride a Jaguar, so I don't know how they ride. I have heard they are fraught with electrical system issues.
Jess, I just want to tell you that I had my jpouch in 1995 and I’m doing fine. There were “bumps in the road” but at the time I didn’t know what I was experiencing was normal. It was frightening. I didn’t understand too much about what to expect, and I didn’t have this group back then. Once I became a member here, I’ve learned so much about my Jpouch and even after 25 years, I’m still learning. If you have a question and your doctor is too busy to explain completely what you are experiencing with your jpouch, just ask it here.
Life immediately after surgery is going to have you questioning. For me, creation of the Jpouch (second surgery) was the most painful. The takedown surgery was a cakewalk. . .recovery though can be rough b/c you feel better but you're still healing.
First, the good news. I'm 14 +/- years with my jpouch and I have zero issues. None. Not one. I'm not bragging, just want you to hear good news.
After takedown, there isn't much for you to do but be patient. You have some new plumbing and your body needs to sort out how it works. Be gentle, go for walks as you are able, remember yoga (downward facing dog can help pass gas), and be patient.
I ride my bike maybe 10 miles a day, workout 3-5 days a week. . .I love my jpouch!
If you haven't already, search on butt burn (it's a real thing) and butt itch (keep a q-tip handy!
@Jess Colby posted:Hi all! Thank you for all the wonderful and informative messages. I certainly didn't mean to imply that when I looked at the posts from this group, all I saw were the downfalls of j-pouches. I understand that this group is here to support one another through those problems. I just meant that when I looked at the greater internet as a whole, I was finding so many downsides of having a j pouch. That probably isn't the best place to look either
Your welcome. good luck
