I'm with Silo City... its a love-hate relationship with my pouch.  Glad to be off the prednisone, but not loving some of the issues with the pouch.  I think what frustrates me more now, is that I feel like I was mislead back in 1996 when I was diagnosed.  Surgery was offered as the cure... but the reality is that there is no cure for the auto immune disorder at the heart of UC.  So, while I don't have bloody diarrhea anymore, there's still other issues to deal with daily.  So, now we learn to manage the symptoms, and learn from what others have experienced.  And, that is why this forum is so helpful.  We're all in this together.  And hey, who else can you talk poop with??  ☺

Deweyj, that's great you're so involved in Team Challenge. I wish I liked running! My daughter and I are involved in Take Steps and she is hoping to be a camp counselor at Camp Oasis this summer. Yes, it's great meeting others going through the same journey. I hope you have a healthy 2016!

Mary Beth, if you and your daughter are so inclined you can walk the half marathon. I have a good friend who has done I think 22 of them all but the first walking! she loves it. me I'm too impatient. we have walkers every season, this season we have my friend who is returning and is now a grandma, she has crohns and a perm ileo, that she's had to have reconstructed and recently was diagnosed with cervical dystonia - its a painful neurological condition unrelated to IBD, and because of this she decided screw crohns, and medical challenges she was going to walk another half marathon with us. I think this will be her fifth.

that aside I am so excited to hear your daughter is going to be a camp counselor. I have heard some of the most amazing stories about Camp Oasis. besides this forum, which is great, I am glad to that the ccfa exists for people like us. and while some of us here may get to meet in person, it is the interwebs after all; there is a wonderful magic to be able to meet and interact with people in person who travel the same path. all the best to you and your daughter!  

Mary Beth, that's a photo from Las Vegas Nov 2014. One of my favorites, and actually Team Challenge's too as I think they have that on the landing page at www.ccteamchallenge.org  

That's awesome!  So glad there's more awareness! Keep up the good work

Deweyj,  I'll bring that up walking the half to my daughter!  Like you she's impatient and would end up running, she's very competitive and athletic! That's amazing your friend ran it with all her health problems, very inspiring! Love this forum too and the Jpouch group on Facebook, I honestly don't know what I would have done without them, so much good advice and support. I have way more confidence here than I do with the doctors to be honest! Take care!

I gained my life with my JPouch!!! i have had it 13yrs now and am very very happy.. one of the best decision i have ever made.. i have had 2 kids, and a full life.. that i would otherwise not have had! i was 21 when when i my surgery!! i wish everyone had the same success story!

Scott F posted:

I'm very happy with my pouch, in spite of needing antibiotics every day to keep it working well. Since my surgery I've taken up scuba diving, Japanese Ju-Jitsu (I teach it now), and regular exercise. These were all impossible for me for years while I was sick with IBD.

Don't worry about the antibiotics bro...I have to take them twice a day for other issues. I have the ileostomy, could go for a J pouch( always was on the table ). I also suffered from anxiety for the first few years( I was also a Hyper Chondraic about everything...scared something would return etc ). However, everything was not fully explained to me...sucked because I was pre-nursing and just into my Pre-reqs....when boom, everything hit...and we talked about stomas...one sentence....I didn't understand it, as we just hopped over the subject. However, that's what made me apprehensive about the J( plus complications, as I had alot of time....maybe not a blessing....to read up ). I know at CC Remzi and I talked about a, one step this year... he is now gone. Glad your worked out well. 

I'm very happy with my pouch. I go 5-6 times every 24 hours, I can eat anything I want (apart from peanuts), I have almost no butt burn, I don't take any drugs, I don't have leaks, I have no urgency, it's all pretty good. I can imagine things going downhill as I get older but that's true of everyone else on the planet too

 I've deliberately come to this forum to try and spread some good cheer about J Pouches as I remember searching for positive accounts when I had to make my own decision years ago.

Just joined today!  To be honest i love it.  Had UC since i was 2 had the coloctemy done when 15 been a poucher ever since.  Now i did notice some problems were still there for the first couple years.   Honestly i may have had pouchitis for a little bit..BUT around the age of 19 i went vegetarian and EVRRYTHING changed..im almost 25 now and have been vegan for almost 3 months( that means no meats and no dairies) BM count is down to 2-4 MAYBE...again love my pouch, still kind of a youngin but were standing strong!  Namaste everyone!  keep on pouchin

LEELANDIV-My takedown was 4/28/15. I am doing good as far as 3-4 BM a day, however some days it can go up to 6-8. From keeping track i can tell it' s either eggs, steak or turkey burger. Will you please share your typical daily menu? 

I loved it the first two years that it was pristine and healthy. After those two years though, it caused me to be sicker than I ever was in my entire life with Crohn's/Colotis. Constant pouchitis, C-Diff, Dehydration and high doses of Prednisone. Now I'm back to the bag and although Its a night and day health wise, being a personal trainer with a bag and scars isn't the best look. Doesn't help that my ileo is flush way beneath the skin. P

Well CTBARRISTER, I consider mine nothing but a failure with no real way out. Anybody who tells me to just get a ostomy now has no clue why I chose a pouch to begin with.

RE5 posted:

I loved it the first two years that it was pristine and healthy. After those two years though, it caused me to be sicker than I ever was in my entire life with Crohn's/Colotis. Constant pouchitis, C-Diff, Dehydration and high doses of Prednisone. Now I'm back to the bag and although Its a night and day health wise, being a personal trainer with a bag and scars isn't the best look. Doesn't help that my ileo is flush way beneath the skin. P

Bro....You can still do your thing with an ileo. I have mine for 11 years, at the raw age below 21. I will agree with you, it is not the best look....why people, well main reason why people have J pouches. I still have the option on the table...can do a one step....but the guy who told me that, left CC. In fact, most of the good surgeons left the Cleveland Clinic. Scott Strong in 2014( at the end ). Then Remzi, 2016. I don't think I would trust anyone at CC with a j pouch at this point. A one step procedure, Remzi was willing. The deal is this.....the days will not get easier. It's not like a relationship where as the farther you go, the more comfortable. That is a myth, in my opinion. However, another myth would be you cannot personal train. I don't know why they made it flush, as it goes through the fascia and abdominal muscles.......However, that being said, there are days, I thought to myself, I wish they made mine flush. Many people speak of accounts, however, 1 inch out should be that happy medium. Anywho, you will be fine. Just be careful as you train. Trust me....put it this way, before I had my surgery, if I would have lost 8 lbs and benched 10 lbs more, I would have broke the state record on bench press for my height and weight( all natural ). Things didn't work out, as I fell ill. There are going to be days you question things( which I am sure you already have ), like should I have had the surgery? I know I sometimes ponder if I had my colon, even ill, if life would have been better. I will tell you my worst mistakes....was I never let people( relationships ) in. Being, most do not care......If you ever need to talk, feel free to hit me up. I also, sometimes pondered if I had the j pouch as well. As of right now though, any good surgeons, are gone in my neck of the area. It is a mind screw, which is worse than the surgery itself at times. There is a suicide rate to this surgery as well. So to completely negate psychological aspects are insane. The number of people have ostomies( ileos and colos ), are rising. Why? ......The clinical analysis of the j pouch is 91% success rate, however, this is to me untrue. Why? On a survey conducted in 2006, hospital boasting 91% success, also had their respondents report only a 77% quality of life. Think about that for a minute. What is really deemed as Success? To me, it is quality of life....not what some medical panel or surgeon deems " Successful." I also brought to the CC questions. I noticed that people who have ileos, have less chance of Crohns. I noted this, and confronted the #2 hospital in the western world. I threw stats out, and scientific theory( being, that nothing can be a law because it's soley proven, but using scientific thought ) that is seems those with an ileo rarely report a secondary DX of Crohns.....Flat out, I gave my hypothesis on the matter.....turns out....Surgeons at this #2 hospital agreed. Usual reports are 3% of people get an alternative DX. I concluded this was not true, in ileo patients. Tbh, .....No one could disagree on the matter, and admitted there was a 3-6x of alternative DX than that of an ileo to a j Pouch. Being an ileo has a much less chance of getting a secondary DX. I now am studying microbiology class at a research university. Currently taking classes. I already have Ap1 and Ap 2 etc....So my thought on you not being a trainer, is not true. I still believe you can. The scars, you would have anyways I am guessing. The ileo...well different bird. However, if your dating etc....Just read my mistakes. Again these are what I deem my mistakes, and I am not taking the words out of someone's mouth. However, I do not think, you having an ileo, would matter in personal training. Why? I have trained with college athletes and former NFL football players. Namely of the ravens, and Bengals. Also with athletes out of Virginia, OSU, and smaller schools. My two cents. 

Muddygirl posted:

LEELANDIV-My takedown was 4/28/15. I am doing good as far as 3-4 BM a day, however some days it can go up to 6-8. From keeping track i can tell it' s either eggs, steak or turkey burger. Will you please share your typical daily menu? 

I cannot reply to your q in it's entirety as I have an ileo. I could have a j pouch, but...I was offered a 1 step procedure, but the doc left. So, I am replying because I have an ileo and eat Turkey burgers, eggs, and steak lol. Ever try a salmon burger? They make them. First off, I want to applaud you for your success. If I read people like you when I had my ileo....11 years ago...I would have pulled the trigger. 3-4 a day is really ideal, with 6-8 being an average. So I think, not to steal charlie sheen's words, you are winning! Ok, so to answer your question, keep tracking. One week just eat one without the others( I don't mean just eat turkey burgers, or eggs, or steak lol ). I mean one week, if you normally eat 8-16 oz of steak....do not eat eggs or a turkey burger. Next week eat eggs( as normal ) without the Turkey burger or steak. However, if I had to guess.....based on my eating....Steak. Steak will slowly digest through your body, making it harder to absorb in some, and clog you up...well people with colons anyway. Just a known fact with bodybuilders. Understand a bodybuilder before competition does not want ANY abnormality...including slow digested steak that makes a stomach fill out. Sometimes if you have something that clogs, your fluids will tend to go through. I know when I had a blockage this would happen. However, keep eating healthy and congrats on your success that is more ideal and sometimes average. I mean, you can make an argument for whatever. Eggs, do they create gas and bloat you? I think if you payed a visit to those questions, you might find your answer. I know I can eat fish, and many servings of rice in one serving...banging in over 1100 calories in one meal on those two foods. However, another person might this is insane....too much fish...too much carbs....and find they need smaller meals. I never attuned to smaller meals. I would how I just layed it out. I start of small, during the day get normal, and end eat bigger. Like normal people do in the sense of Breakfast, Lunch, and dinner. Note..I also drink egg white protein powder, no problems. 

I'm with Jan Dollar on this one. I've had complications, but I'm pretty well managed now after decades of blips and learning by accident/trial and error, google and this forum. I'd never go back to what I had from age 16-21 which was about the worst case of colitis possible. I chose living, not just barely surviving. 

When the blips come up now and, despite my having every possible complication over decades, I am now pretty stabilized. When the blips come up, I get the medical care I need and work a lot on mindset. Mindset goes a looooong way. One of many things I work on is gratitude. 

My Jpouch just turned 6 years old in October, one week after my birthday! I honestly love her dearly!! We have a great friendship, i even named her and I talk to her! I love her soo much! I have 13-20BMS a day but I love that too and I would not trade it for something different. I am just happy to use the restroom without problems

I had a redo, but I don't really have a good relationship with my pouch. But it is better than a permanent ostomy.. it could be worse and it has been for a lot of years.

I have not been on here in forever.  I hope you all are well - what a year!  I think back to a period of time when I was in full tilt complaint mode on hear about my pouch - and now, looking back, I think it wasn't as much about that as it was about just getting older.  Not sure if this rings true to anyone else on here.  I find that these days - friends are all beginning to deal with their own health issues - and in a strange way - it's less difficult to have pouch issues as my age group all have all kinds of GI or other health stuff going on now.  I am also happier in my personal life - and that seems to make the pouch stuff better - so I wonder how much stress was part of all my pouch problems?  I do not know...but I know I am so thankful for this forum - because when I was struggling a lot- the only people who truly "got it" - were people on here.  I am so grateful to you all.

You are welcome You are right, stress contributes to a lot of GI problems including pouchitits. We definitely have to watch our stress levels

I had some notifications that this thread has come back to life again so I thought I'd provide an update on my situation. I haven't been around this forum for years now for the classic reason that everything has been going very well with me and I've been getting on with my life. I go 4-6 times a day depending on what I eat. I have ZERO issues with my J-Pouch, I can even eat peanuts and tikka masalas now. I have two golden rules:

1) Don't snack between meals and when you do eat, try to eat everything together at same time (don't finish eating then have desert 30min later for example)

2) Drink water - but not too much! If you drink too little/too much you get very watery stool. Somewhere in the middle is just right. Some alcohol is good for digestion but very gassy drinks can be painful.

Best wishes to everyone!

@GB2014 posted:

I had some notifications that this thread has come back to life again so I thought I'd provide an update on my situation. I haven't been around this forum for years now for the classic reason that everything has been going very well with me and I've been getting on with my life. I go 4-6 times a day depending on what I eat. I have ZERO issues with my J-Pouch, I can even eat peanuts and tikka masalas now. I have two golden rules:

1) Don't snack between meals and when you do eat, try to eat everything together at same time (don't finish eating then have desert 30min later for example)

2) Drink water - but not too much! If you drink too little/too much you get very watery stool. Somewhere in the middle is just right. Some alcohol is good for digestion but very gassy drinks can be painful.

Best wishes to everyone!

4-6 times??? Wow awesome! I go 13-20x a day, that is my norm lol.