To J pouch or not?....Is and is not a question

Wow that's a shame if the reason you didn't go for a j pouch is because you talked to 6 people about it and didn't like what 4 said. You need to do some more j pouch people searching! Anyway, bottom line is that the procedure is highly successful and if you're a good candidate for a J pouch and have a great surgeon, then the odds are in your favor that you'll do just fine. You should go for a consult to see if you're a good candidate. Interview a few surgeons. I'm glad I "J pouched" ! Best of luck with your decision! 

Mgmt10, thanks for the encouraging words, I have my takedown surgery scheduled for next week and I am pretty nervous about it. It is nice to read about someone who is happy with the jpouch. So many folks are negative about it it gets scary

     thanks again, Kevin

That's a lot to go through... and I understand the predicament. I had to have emergency surgery to remove my colon, and ended up living with an ileostomy for almost 3 years before I got my pouch.  Part of the reason for the delay was that I was initially deemed too ill for j-pouch surgery and my GI at the time just wanted me to stabilize and put some weight on before he'd suggest a future course of treatment. I was severely anemic and had lost almost 40 pounds (I weighed about 122 before getting sick, and went down to under 85 at my lowest point).  But the delay was also because my first GI really seemed to have a negative opinion of the surgery, so I was in no hurry to go under the knife again.  My end ileo was working, I could eat again, and I was back at work. And yes, my first experience with surgery was awful, with post-op obstructions, ileus, etc, and I wasn't eager to go under the knife again. Don't fix what ain't broke, right? In retrospect, I don't think my GI was being negative as much as he was being very ultra realistic, but he had a very curt way of approaching anything, and with the level of knowledge I had at the time regarding IBD and pouches (virtually zero) it wasn't a big confidence booster.  But, as luck would have it, I was fortunately put in touch with a fantastic surgeon, who even insisted I get a second opinion from a colleague at another hospital before making a final decision. Ultimately, I decided to have the surgery. Getting the j-pouch was without a doubt the best decision I have ever made, even though I've had some bumps along the way. 

It's important to remember that j-pouches have success rates reported at 85% or higher in most cases. That said, your own personal opinion of "success" may vary from someone else's. For a j-pouch, about 8 BMs a day is the norm. Some people may be happy with that number while others might think it hell on earth.  At this stage, I'd urge you to talk to more than one surgeon if you can, find out the options and get the whole story. Don't rely solely on the internet, which is generally skewed to negative experiences, as the general rule is that nobody ever complains unless they have something to complain about. Most of the thousands people who represent j-pouch success stories aren't online talking about their experiences, because they have nothing to complain about. They are out living their lives. As I said, the pouch turned out to be a great choice for me.  It could be for you too, but talk to the surgeons and learn the facts. 

Best of luck!

kevh posted:

Mgmt10, thanks for the encouraging words, I have my takedown surgery scheduled for next week and I am pretty nervous about it. It is nice to read about someone who is happy with the jpouch. So many folks are negative about it it gets scary

     thanks again, Kevin

Good luck Kevin! Wishing you a speedy recovery! 

Good Luck with take down. Every one is different. If you didn't do go you will always wonder "what if". My j-pouch worked well for many years, but having problems now. Am seeing new surgeon next week. They have so many new procedures now, I wish you all the best!

Crazy1, quite a nice, long back story I'm kind of mixed in what to say to you. Yes, I j-pouch. So does my daughter. As Spooky said, neither of us have been without issues through the years, but by and large we are doing well with our j-pouches. Funny - my surgeon has me come in every 2 years now for checkups, but she always asks the frequency of BM's and honestly I stopped counting or worrying about it a long time ago. I have a few bad days a month where I wonder, "What did I eat that did this to me?" but the rest are great. Same for my daughter although she has been diagnosed over the years with acute, chronic pouchitis. Last labs had her looking pretty good though - just on sulfasalazine and probiotics. So I think we have a pretty good story to tell at 10 and 5 years with our pouches.

However, if you have lived this long with an ostomy and are satisfied with your quality of life, I understand why you haven't moved forward with surgery. It's surgery! And not a short one. But as healthy as you are now, and with an excellent surgeon (#1 priority to a good outcome), you should so extremely well with surgery and recovery. I think the only reason I would say to move forward with surgery is if you find the ostomy gets in the way of things (frequent issues, issues with intimacy, etc.). Then, I would say you should definitely try the j-pouch. But make a wise, thought-out decision. My two-cents.

Steve

Crazy1 posted:

Hi,

    Well, I wrote a small post( actually nothing I write is ever small, even my replies to topics ) a ehh 6 weeks ago, about a possible hernia or no hernia. Been to different docs....and the answer....I still don't know. Before I talk and recant a little..I want to snag on my title...Do you J pouch?- Sorry I had to, it's not making fun nor light of any situation, but we need a catch phrase gosh.....With Jersey shore saying, are you DTF.( just remember that show was famous..4 years ago )..and people asking " Are you mad Bro."....All these new sayings....come on. Well the title sure fits my situation. How about yours? 

      So as with all things, comes a time, a light bulb moment if you will, where we can reflect. Ever have a time in your life, where you thought at that moment, that your life was horrible... but...time goes bye you look back and go...D#### I wish I was there? Almost as if you didn't realize how good you had it, even admist the chaos that coveted your life at that moment or "Circa" time of your life. I know #MyPartyLife2011-2014....to cover up real issues...#2015yousuck. See in 2011-2014 I thought I had it bad, and well I did. If I could spin back a clock, I would go back to that said Circa in time. Now your probably wondering....Where does the Jpouch come in? Hold on...I was trying to see how many times I could write Circa...geeze. No, really I digress, ever have that moment though?

      During the last 10 years I have been living with an ileostomy. Oh snap( see another catch phrase..see so I will use do you J pouch ) he might actually be getting to the issue. So for the last 10, well I almost forgot 2015 bc it did sucked...so 11 years, with an ileostomy. I can never say, in this time, admittingly, I ever got "Use" to it. I mean you do....but not entirely. During this time, it took me 4 years to get back into the gym...to find a routine that could build great muscle mass, without causing trauma to abdominals. Also, that natural fear of something happening in the gym. Let me just say, you can do it. Movements with over 700lbs with legs, and yes you can bench over 245 for reps. So I grew this new body....far cry from 129lbs I was. However.....I went back to school, got a degree, just to save classes from dropping out of college do to illness. However, I was like a hamster in a hamster wheel, my brain always working, when to eat this, when to train that...if I take a shower now, will my paste fall off, or can I just duck tape this together, and take a shower tomorrow.....to just have the bag explode on me at night....so I would have to take a shower anyway. Dating....well for a guy we just can't throw on a dress( ok, I am not Katlynn or Bruce Jenner )....however, I found unique ways around things. True story most women didn't even know I had this, until.....sorry what you were about to read was going to be x rated ..skip..but you get the picture, and if you didn't you now do because I pointed it out. It's kind of crazy but give a person a problem and a few instruments to work with.....also give them a ton of time, they become Macgyver. Ok if I was bashing Jersey Shore for being famous 4 years ago, a Macgyver name drop looks bad. How about, if you give a person time, a few instruments, with a problem....they become a magician. They will find ways to hide things, give an illusion, but at the end of the day....some of us are still just really wearing masks, even sometimes to hide our true selves. So as I write this, I am writing from someone who had this happen young. So, I didn't have a "Soul mate" or was married, and zero kids. I didn't have a support system, well what most deem one, and I had yet to barely begin college. I say that because I think it plays a huge role. So if you do find yourself in a bad .....here it goes..."Circa " period of time, but have those things in place.....don't dislike your life now, live it to the fullest as you never know when you might have a moment when you wish you were at, where you are at now. Did that even make sense? Whew....Now to the question...Do you J pouch?

See I was dealing with the inner Magician in me after I learned the ropes, or bag. What not to wear, what angle in the mirror does it stand out. Some parts of your life move on. You might realize eating almonds is great for you, some might not. However, I can say....this magician was wearing a mask. See what I forgot to tell you in my" Do you J pouch", is that for 10 of those 11 years I have been putting off J pouch surgery. It is an option. It is a strong option. During some of those years, I dealt with a lot, dating, etc.....However, I was tormented. So, I would go out and started to socialize a lot more and drink. I mean no one knew of my bag nor hard life because, I was a magician after all...give me 6 years and I can put on an act and show you tricks, but I am still wearing a mask. Even with a new found physique, 207 lbs.....Yes I am only 5ft.8- with shoes, so I was pocket hercules....and yes that did lead into dating more. Also, I got so good at hiding, that no one would ever guessed or knew until.....x-rated( skip ). During this time, I was in tourment....I just wanted more, a more specified education, had a couple med schools bock at me because of physical...then I went back to those same schools when I got a physique....almost like a double blind study, and those same schools that would have denied me, would let me in. Mind you my grades never changed. Now this is going to sound vanity driven, it's not. Isn't interesting though, how things changed like that. At that time, I was wearing a mask. Now, as of 2016, I am writing .....and all those things good I pointed out, I couldn't see....remember that circa talk. Now, I kind of want to be back to that. 

     Now the real point, I have a possible hernia. I say that bc there ae complete mix reviews. Literally had a surgeon look at a C.T. access my stoma, stick fingers in it, press around the " Maybe " hernia region, and say No. There is nothing. My abdominal wall is not weak, and that actually I have the opposite of a hernia, wee my skin is tight around the stoma, that there was some narrowing. Then I had a complete reverse opinion.....That I did indeed have a hernia. Now most might ask me, did all this happen while weight training? No. Actually I stopped training for Months, and had a partial blockage....this was after I stopped training for months. Weird how things happen. I really have been in the most sedentary state in years....However, my life kind of went down hill, other issues. Now, understand the word hernia for me....is huge. See my lifestyle, and also where I wan it to be. So, there does come a time where we reflect. Even after all the things I indulged in tourment wise with the ileostomy, I would go back to those times.....bc I didn't see some of the good. However, I do see someone, and there might be a chance, that I may be opting for a Jpouch. I never went for one because the people I did talk to...had bad results. Idk if it was bad luck, but out of 6 people I talked to....4 were doing bad. Then you go online and read....and boom.....you go through tons of circas....and now, depending on results, I might have a reverse. I wanted to gather your experiences, if you have them, share them...let me know how your J pouch went. Oh and trust me, I would go back to when I had to pull all the magician and when I thought I was not great off. Even behind all the people trying to date me based on Vanity, and me not fully addressing issues...I would go back. So appreciate certain moments, if you have a support group, already have kids, education....even though you might be in a bad Circa, or time in your life, you don't want to look back at that....However, some of us are here and it is now. So do you j Pouch?.......

 

 

 

 

 

 

       

Crazy 1. Your post was so intriguing to me. Your sense of humor, honestly and total post just awed me. I have had the pouch for years due to ulcerative colitis (about 2002) it was put in after 4 months of living with the colostomy until I could heal and get some strength. I was very pleased, couple of pumps along the way but I dealt with it. Now, I kinda wish I didn't do the takedown because of the constant inflammation, pouchitis, lost so much wait and scared to go out in public because it turned into the same way the colitis did. When you have to go, YOU HAVE To Go!!! Am on a new drug called entvyio that a nurse comes to the house to infuse. Just out of hospital for all these problems and am going to see a new surgeon on March 2, for his opinion. I am sure he will want a recent ileoscopy and endoscopy, so will have to work that all out with my gastro of 25 years,  if a bag is the answer, I am ready. For whatever helps me more, let it lead and I will follow. I am sick and tired of having no life because i am constantly in the bathroom or afraid to have an accident. The way you live your life gives me hope. I wish you nothing but the best. Please keep us posted. Written by Cheryl, a j-poucher who might be going backwards herself!

Crazy 1, I think we are all pretty much like you. We wear masks and do magic to make the best of an imperfect situation. While the vast majority of j-pouchers are satisfied, very few have what they consider perfect function and a totally carefree life. It is a trade off. You can never go back to "healthy colon days."

I've had my j-pouch since 1995. I was nearly 40 then. Married with children. So, dating was not an issue. I had complications, but got over them. I developed enteropathic arthritis and just deal with it. Eventually I developed chronic pouchitis that has not improved with various biologics. Antibiotics take care of the symptoms, but not the inflammation. Tomorrow I am discussing Remicade or Entyvio with my GI. 45 years since my pancolitis diagnosis and no dysplasia yet. I want to keep it that way.

But, still I have no regrets. I am able to live my life. Not housebound. I travel and enjoy long walks. Maybe some day I will have to have an ileostomy, but I am happy not to have it now. I worry about allergies to the appliance adhesives. Bandaids cause blisters for me.

Bottom line, you just have to "pick your poison." Choose which risks and problems you find acceptable.

Jan

Jan, Rhemicade worked very well for me for a long time. Then out of the blue had an allergic reaction to it. Now on the entvyio, but suffering from pouchitis constantly.  Am following it and success rate high.  you have a great attitude and that is very important. Thank you.

Ha! I am the queen of great attitude and positive thinking, as I know it does impact your outcome. Too bad it is not the be-all and end-all. I don't get depressed, just disappointed. Shrug my shoulders and move on. I just won't let my life revolve around my butt, at least not yet!

Jan

Jan is absolutely right. It is a trade off. You do have to go into this knowing that you'll never be "perfect" or be like you were before you had UC. I love my pouch, but that's not to say I haven't had issues with it either. That said, I am far happier with my pouch than I was with the ileostomy, where I had leaks, burst bags, reactions to the adhesive, and curtailed activities, always needing to have your supplies with you. Not to mention the cost of supplies, which unfortunately were only partially covered for me. And just things in general. I'm a runner but I hated running with a bag that bounced and pulled tugged, and I actually more than once sweat the bag off. But now I have my j-pouch and I can run again... that's just my own example but these are all things to consider!

I love my pouch even thru all he bad times. In fact last year I had to go back to a ileostomy to let my pouchitis heal and was miserable. I hate meds but am happily taking Entyvio if that will keep my pouch healthy. So yes, I j pouch! 

I don´t know what to do now...

I had UC for almost 16 years until last november i went into an ileostomy surgery. Now after 3 months my surgeon wants to make an undetermined number of anastomosis surgery in order to connect a J-pouch.

I´m 43 years old, and i have a proffesional independent activity. The idea to be surgery every 15 days is impossible for me to handle because of my business, but my surgeon insists that the frequency must be that often, otherwise J-pouch won´t be succesful.

On the other side, i am feeling quite well after 3 months since my ileostomy and I am thinking forward not to try a J-Pouch because of many reasons (Pouchitis; incontinence, time of disability, among others...) I think that having a life with an ostomy bag is not that bad and also is safe. Am i wrong?

If i decided to wait a couple years before a J-Pouch surgery is also a possible option? what are the risks?

If your where me, what would you do?

Thanks in advance.

Andrés.

Andrés, I am not sure what resources are available to you in Peru, but if you can, a second opinion would be a good idea. It seems rather bizarre that you would need an indeterminate number of surgeries to complete your j-pouch, but I don't know what specific obstacles you have. I can tell you that it is extremely unusual to need more than a total of 3 steps (including the colectomy you already had).

Sometimes there is an issue of a too short mesenteric blood supply, making the reach to the anus for a j-pouch impossible. However, there are some techniques for lengthening the mesentery, but they are not done as separate procedures as far as I know.

It is not unheard of to delay completion surgery after colectomy. The only risks are continued UC in the retained rectum that could need trreatment, and weakening of the anal sphincters from disuse. If you do kegel exercises that should help maintain muscle tone.

Jan

Thanks for the replies everyone. I will reply shortly, and with some news. However, I am posting early because I wanted to comment @ AARBOLEDAA.  It's no wonder why you feel that an ostomy is good, because 16 years with UC is no joke....even though I made a few in the original post. After 16 years, I am sure that is giving you relief depending on how bad it was, especially if you already have your career. Also, at 43 it is probably a small margin better to accept an ileostomy than say having this at say 18, not minimizing how tough it can be at any age, but I think that does give an advantage. So with that said, it is understandable and not weird logic to feel better with an ileo. 

I can tell you I have had mine for 11 years, and had it young, when I had it, I wasn't even drinking age lol. So I couldn't even drink my sorrows away....those Besterds. However, interchangeably you asked two questions. Ok, I am not an oracle, although I wish I was....( Ok usually when I wish, I get the opposite, ) so I will just say I would be glad to be an oracle to see the future. However, your first question in regards to your surgery or number of surgeries. I don't know your case, and I won't have any provocation to pretend to. All I can tell you is I have had mine for 11 years...On point now, with regards to number of surgeries...most have 2 or 3. I would say 2 is best( if it renders it ). Also done Lapro by someone who is skilled at that...there is a difference between confident and skilled. Now, would both be a great quality for a Surgeon? Sure, and I doubt many lack confidence, but skilled is the word. What do they do by 2 step surgeries? Well, they create your pouch, and while it heals, you would get what is called a Loop Ileostomy. Now do note, a loop ileostomy, which I don't know if you have, but that ostomy is Loopy( think of it as a person you wanted to date long term, but in the back of your mind said no....this is just temporary...so it becomes just a FLING! ). Now this Loop ileostomy is just temporary( fling ). You would then be reconnected after. How long your tied down to this loop ileostomy relationship can vary. So after that time, typically people are reconnected to that J pouch that has been healing while your off dating this loop ileostomy.Typically loop ileostomies have more output, appliances fall off faster then end ileostomies. Now, there is also an end ileostomy. Now just because it is worded by "End", does not mean it is an end all. It just is not a loop ostomy. This ileostomy is someone who you can date long term, and might feel comfortable doing. Ok now, no one dates their ostomy....however, I am sure someone does, which would be weird. However, I think you may get what I am saying. The end ilesotomy is not a marriage, you might be able to have a J pouch with it, so it to can be temporary. However, what makes the end ileostomy more better( or date able..am I still giving dating analogies? ) is that it will have generally less output, is more manageable, and by default the supplies should last longer( less high maintenance, another analogy..ok I am done ). So, right now if you have a loop an end could be better if you decide to keep, but from your writing you may have an end.

Now, with an end( I know my writing never stops ), typically this is 3 surgeries. They have what is referred to as a subtotal colectomy, subtotal being..they are not taking out the entire colon..hence the word subtotal( at times they might take more, so it won't be a subtotal , this is just typically). So typically in this case you will have an end ilesotomy after the first surgery. Your pouch is not yet created at all. Just the initial surgery to remove things. I mention this because sometimes with a subtotal( if done that way ), people will see drainage from their Pelvic region and go bonkers. This is not a second ileostomy, it is what is left of the rectum( remember subtotal? ) and it is now close to the skin, and it put there for a reason, so if it does drain, it won't cause any complications inside the body. So if this ever happens to you and it's an end ileostomy, that could be why. So they let the person get a little healthier with the end ileostomy, and the person should be able to get on life better with this type because it is easier to manage far as output( see why you can date this one long term, if you didn't opt for a Jpouch ). After some variable time, they then typically will have a second surgery, to create the Jpouch, give you that Temporary Loop ileostomy, and yes...you finish were I left off at the two step. So essentially it's one more major surgery. However, if you have an End....it does not mean you have to have the J pouch surgery, nor does it mean, you will have it permanently and not have a Jpouch. If you qualify for a jpouch, then the "End" ileo is more than likely temporary (if you want it to be ). Am I making any sense? Then after the second sugery, you have everything reconnected for your third, in a typical situation. 

Whew....Now  to your second q.Far as if you waited a couple years is it possible to have a jpouch? Yes. However, your sphincter muscles have a chance to not be as strong, if you will, and a small chance they couldn't do it( not everyone can be like NIKE )....so there is that possibly, but they should be able to check that out. Also, weight gain. You might find it, as you put feeling well....so you might start eating a lot more, which is no problem. However, the jpouch surgery does go by easier if you have less weight around the abdominal section. So really those are possible complications for the jpouch, that I can think of if holding off.

Lastly, is this the wrong thinking? No, not really. As I said, I am assuming you have an end ileostomy, but I don't know your particular situation. I can tell you this, again I have had an ileostomy for 11 years.....a lot of things made me nervous as well. I qualify for the J pouch....However, do note my age, and also my weight training. If I was older and waited this long, it could be a different drum beat. The one thing that may happen, is of course Hernias while waiting. - I would not let that be a decision maker this early. I can say, that I did weight train with an ileo. Again, I would do 700lb leg movements, and was lifting 245 for repetition on chest. To help get to that point, I would pick brains of people I didn't really know( Hi ). So tbh, it's not weird thinking. Also, in every relationship( yep another analogy ) it's not all about the physical, it's also about the mental. Well, you also want to be mentally ready....that's why I said typically having a 2 step with Lapro is great bc it's just one major surgery....however, you do want to mentally ready as well.  I can also tell you, I could eat what I wanted, but not at first. However, as I found my way into the gym, my diet is bland anyway. Also, I didn't eat your typical 5-6 small meals. I eat...2 fillets of fish, garlic, ( Olive oil if your trying to gain weight back )...Also if you can use garlic clovers, bake it. Then I would cook 2.5 servings of rice, or a whole packet.....and then salad. That was dinner. So I would get my carbs, healthy fats, and protein. Then say the next day, I would eat 2 pieces of chicken, a few potatoes, with non trans fat butter...and I was good to go. You can really start eating what you want after awhile and you might learn what is or is not good for you.  Also you can take that further with Macro nutrtients. For every 1 gram of protein there are 4 calories. So if you ate 25 grams of protein, you are getting 100 calories from protein. 25 x4=100. Anyway, I can honestly say with all that said, there are times, I wish I went for it early. Oops remember what I said when I wish...I mean I sometimes in thought, think I should have had it early. Whew dodged a bullet. Also, there are many things for women for ileostomies to cover up. They have garments that you put at your waist and is long, but just looks like a shirt under your shirt. Guys can't really pull this off...well...they can, but i don't know what would be more awkward, explaining that, or the surgery itself. Also, women have dresses, again, A guy can try and pull that off...but...Lol. Women also have one piece bathing suits, etc

Finally parlaying on your other questions. I can tell you this, being mentally there is important, mentally ready. Also, there is indeed an adjustment period for everything, and just like anything...life events might calculate time If right now you may not have the time to adjust life to more surgery, or certain circumstances do not permit. Again, I don't know your situation exactly, but I do know that life circumstances can also play a role...and just like dating( yep another one ), sometimes being spontaneous is great, but sometimes rushing a relationship( surgery ) when your not ready, is not the best. This goes beyond that because it is a relationship with your own body. All I can say is what I have, and the typical procedures, it does not mean it applies to all. These are my two cents, but I could be missing a penny.  I hope this helps in anyway. 

If its any help I ve had my surgery for j pouch in 2007 - it was a challenging time at first post surgery  but I have recovered well and I ve had no issues at all in the past 9 years. 

Jan Dollar posted:

Andrés, I am not sure what resources are available to you in Peru, but if you can, a second opinion would be a good idea. It seems rather bizarre that you would need an indeterminate number of surgeries to complete your j-pouch, but I don't know what specific obstacles you have. I can tell you that it is extremely unusual to need more than a total of 3 steps (including the colectomy you already had).

Sometimes there is an issue of a too short mesenteric blood supply, making the reach to the anus for a j-pouch impossible. However, there are some techniques for lengthening the mesentery, but they are not done as separate procedures as far as I know.

It is not unheard of to delay completion surgery after colectomy. The only risks are continued UC in the retained rectum that could need trreatment, and weakening of the anal sphincters from disuse. If you do kegel exercises that should help maintain muscle tone.

Jan

Hi Jan, thanks for your comments and advices! I will find a second opinion before take a final decision. 

UC is not a common disease in Peru and there are not to many specialists in that field. However the few specialists we can find here are well known as a good professionals.

Regarding your point about too short mesenteric blood supply, i have been thinking about it and I believe that could be the reason why my surgeon wants to perform several surgeries because of that. As far as i know, when the entire colon was removed, the arteries were in poor conditions because of cortisone side effects, so the surgeon had to stretch one of the arteries in orther to keep blood supply.

Let me finish my reply with this question, if you were me or any other ostomy person who had the option to J-pouch, would you do it again? 

Thanks and regards.

Andrés.

Andres, I recommend you search the archives here for threads about whether people would go to a J-pouch if they could make the decision again. It's important to remember that most folks with well-functioning pouches aren't exchanging ideas on this (or any) support forum, so you'll get a biased response here. Nevertheless, getting a J pouch was one of the best decisions I've made in my life, even though in my case I have to take antibiotics every day. 

Crazy1 posted:

Thanks for the replies everyone. I will reply shortly, and with some news. However, I am posting early because I wanted to comment @ AARBOLEDAA.  It's no wonder why you feel that an ostomy is good, because 16 years with UC is no joke....even though I made a few in the original post. After 16 years, I am sure that is giving you relief depending on how bad it was, especially if you already have your career. Also, at 43 it is probably a small margin better to accept an ileostomy than say having this at say 18, not minimizing how tough it can be at any age, but I think that does give an advantage. So with that said, it is understandable and not weird logic to feel better with an ileo. 

I can tell you I have had mine for 11 years, and had it young, when I had it, I wasn't even drinking age lol. So I couldn't even drink my sorrows away....those Besterds. However, interchangeably you asked two questions. Ok, I am not an oracle, although I wish I was....( Ok usually when I wish, I get the opposite, ) so I will just say I would be glad to be an oracle to see the future. However, your first question in regards to your surgery or number of surgeries. I don't know your case, and I won't have any provocation to pretend to. All I can tell you is I have had mine for 11 years...On point now, with regards to number of surgeries...most have 2 or 3. I would say 2 is best( if it renders it ). Also done Lapro by someone who is skilled at that...there is a difference between confident and skilled. Now, would both be a great quality for a Surgeon? Sure, and I doubt many lack confidence, but skilled is the word. What do they do by 2 step surgeries? Well, they create your pouch, and while it heals, you would get what is called a Loop Ileostomy. Now do note, a loop ileostomy, which I don't know if you have, but that ostomy is Loopy( think of it as a person you wanted to date long term, but in the back of your mind said no....this is just temporary...so it becomes just a FLING! ). Now this Loop ileostomy is just temporary( fling ). You would then be reconnected after. How long your tied down to this loop ileostomy relationship can vary. So after that time, typically people are reconnected to that J pouch that has been healing while your off dating this loop ileostomy.Typically loop ileostomies have more output, appliances fall off faster then end ileostomies. Now, there is also an end ileostomy. Now just because it is worded by "End", does not mean it is an end all. It just is not a loop ostomy. This ileostomy is someone who you can date long term, and might feel comfortable doing. Ok now, no one dates their ostomy....however, I am sure someone does, which would be weird. However, I think you may get what I am saying. The end ilesotomy is not a marriage, you might be able to have a J pouch with it, so it to can be temporary. However, what makes the end ileostomy more better( or date able..am I still giving dating analogies? ) is that it will have generally less output, is more manageable, and by default the supplies should last longer( less high maintenance, another analogy..ok I am done ). So, right now if you have a loop an end could be better if you decide to keep, but from your writing you may have an end.

Now, with an end( I know my writing never stops ), typically this is 3 surgeries. They have what is referred to as a subtotal colectomy, subtotal being..they are not taking out the entire colon..hence the word subtotal( at times they might take more, so it won't be a subtotal , this is just typically). So typically in this case you will have an end ilesotomy after the first surgery. Your pouch is not yet created at all. Just the initial surgery to remove things. I mention this because sometimes with a subtotal( if done that way ), people will see drainage from their Pelvic region and go bonkers. This is not a second ileostomy, it is what is left of the rectum( remember subtotal? ) and it is now close to the skin, and it put there for a reason, so if it does drain, it won't cause any complications inside the body. So if this ever happens to you and it's an end ileostomy, that could be why. So they let the person get a little healthier with the end ileostomy, and the person should be able to get on life better with this type because it is easier to manage far as output( see why you can date this one long term, if you didn't opt for a Jpouch ). After some variable time, they then typically will have a second surgery, to create the Jpouch, give you that Temporary Loop ileostomy, and yes...you finish were I left off at the two step. So essentially it's one more major surgery. However, if you have an End....it does not mean you have to have the J pouch surgery, nor does it mean, you will have it permanently and not have a Jpouch. If you qualify for a jpouch, then the "End" ileo is more than likely temporary (if you want it to be ). Am I making any sense? Then after the second sugery, you have everything reconnected for your third, in a typical situation. 

Whew....Now  to your second q.Far as if you waited a couple years is it possible to have a jpouch? Yes. However, your sphincter muscles have a chance to not be as strong, if you will, and a small chance they couldn't do it( not everyone can be like NIKE )....so there is that possibly, but they should be able to check that out. Also, weight gain. You might find it, as you put feeling well....so you might start eating a lot more, which is no problem. However, the jpouch surgery does go by easier if you have less weight around the abdominal section. So really those are possible complications for the jpouch, that I can think of if holding off.

Lastly, is this the wrong thinking? No, not really. As I said, I am assuming you have an end ileostomy, but I don't know your particular situation. I can tell you this, again I have had an ileostomy for 11 years.....a lot of things made me nervous as well. I qualify for the J pouch....However, do note my age, and also my weight training. If I was older and waited this long, it could be a different drum beat. The one thing that may happen, is of course Hernias while waiting. - I would not let that be a decision maker this early. I can say, that I did weight train with an ileo. Again, I would do 700lb leg movements, and was lifting 245 for repetition on chest. To help get to that point, I would pick brains of people I didn't really know( Hi ). So tbh, it's not weird thinking. Also, in every relationship( yep another analogy ) it's not all about the physical, it's also about the mental. Well, you also want to be mentally ready....that's why I said typically having a 2 step with Lapro is great bc it's just one major surgery....however, you do want to mentally ready as well.  I can also tell you, I could eat what I wanted, but not at first. However, as I found my way into the gym, my diet is bland anyway. Also, I didn't eat your typical 5-6 small meals. I eat...2 fillets of fish, garlic, ( Olive oil if your trying to gain weight back )...Also if you can use garlic clovers, bake it. Then I would cook 2.5 servings of rice, or a whole packet.....and then salad. That was dinner. So I would get my carbs, healthy fats, and protein. Then say the next day, I would eat 2 pieces of chicken, a few potatoes, with non trans fat butter...and I was good to go. You can really start eating what you want after awhile and you might learn what is or is not good for you.  Also you can take that further with Macro nutrtients. For every 1 gram of protein there are 4 calories. So if you ate 25 grams of protein, you are getting 100 calories from protein. 25 x4=100. Anyway, I can honestly say with all that said, there are times, I wish I went for it early. Oops remember what I said when I wish...I mean I sometimes in thought, think I should have had it early. Whew dodged a bullet. Also, there are many things for women for ileostomies to cover up. They have garments that you put at your waist and is long, but just looks like a shirt under your shirt. Guys can't really pull this off...well...they can, but i don't know what would be more awkward, explaining that, or the surgery itself. Also, women have dresses, again, A guy can try and pull that off...but...Lol. Women also have one piece bathing suits, etc

Finally parlaying on your other questions. I can tell you this, being mentally there is important, mentally ready. Also, there is indeed an adjustment period for everything, and just like anything...life events might calculate time If right now you may not have the time to adjust life to more surgery, or certain circumstances do not permit. Again, I don't know your situation exactly, but I do know that life circumstances can also play a role...and just like dating( yep another one ), sometimes being spontaneous is great, but sometimes rushing a relationship( surgery ) when your not ready, is not the best. This goes beyond that because it is a relationship with your own body. All I can say is what I have, and the typical procedures, it does not mean it applies to all. These are my two cents, but I could be missing a penny.  I hope this helps in anyway. 

Thank you very much indeed for your time and comments. Very helpful at the right time!

Andrés, hard to say what I would do in your situation. For me, the main factors would be how I was doing with the ileostomy (it seems you are doing well), and the available surgical resources (which seem limited in your area). 

It is easy to say to seek "the best of the best" in the way of surgeons, but most of us cannot travel to different countries or continents. Plus, you need to think of follow up care. I'd be loathe to sign up for numerous complex surgeries with an unknown outcome.

Here in the US, if there is an issue of mesenteric reach, the mesenteric lengthening is done at the time of the j-pouch surgery. If it turns out to be unfeasible, the pouch surgery is aborted and you stay with the ileostomy. If there is just minor tension, then the time with the diverting ileostomy is supposed to allow for some stretch and strengthening of the connections before the ileostomy is taken down.

Bottom line, I'd get the second opinion, ask lots of questions, then go from there. Every case is different. But, based on what you describe, I'd probably stick with an end ileostomy. 

Jan

Thanks for the replies, and also the replies to help others. I will post some news, but just holding back until I get definite answers. Break down: I was suppose to weight train with a former Nfl football player from the Ravens....then things happened to me. He thought I was primed for Bodybuilding. As a stated with an ileo I was able to go from 129lbs to 207lbs at 5ft8( and that is in shoes lol ). However the last 5 months been the most sedative in a long time. I have always pondered he Jpouch, and yes even after 11 years, I still qualify for it, and a possible 1 step, it's not highly recommended for people to have this, but expressing my concerns.....surgeon mentioned I was a candidate for it, only a few hundred were ever done. 

    On topic. I have had 3 M.Ds- one a general surgeon, one a colo surgeon, and a gastr...say I do no have a hernia. Also, on C.T. i did not show a hernia. In the report, it does not indicate hernia, but at the time, hey were checking for obstruction, had a partial. So C.T was not hernia specific. I looked t my own CT( and seen 2 slides, that showed something, but could have been the ileo ). I looked at it from a sag. view, not posterior, and still seen something. However, I have had another Surgeon, and their nurse practioner say I have a hernia....So now I am perplexed. Way different opinions. Understand my lifestyle and where I want it to be. The surgeon who said yes, comes from a Highly regarded Hospital. I will give an update on that, but I need some luck lol. Since June of 2k15, it's been one thing after another. Also, any inputs on a one step( not saying I am doing it ).- I fear NG tube, plus more trauma to body. Also, no I did not get " Possibe " hernia from lifting, I actually got it( if I have one ), when not training. Got so many conflicting reviews if I do or don't have one. 1 sugereon looks at CT, shows me on Ct why there is no hernia..another Surgeon, looks at it and sees it on CT? All were convicted in their answers lol.

The hernia issue will sort itself out when they go in to complete your surgery (if you decide to move forward). Imaging is not perfect and unless there is a glaring defect, it is open to interpretation. I had multiple CTs that visualized a presumed adrenal tumor. I even had modest hormone elevations to support it. I had my adrenal gland removed and it turned out it did not contain a tumor. There was just a ganglioneuroma nearby. The point? They don't REALLY know until they get in and have eyes on it.

Also, don't be so sure of yourself about heavy lifting not being a contributing factor. Unless you experienced a sudden snap or pain, this likely did occur during lifting, and only became apparent after you stopped working out and the muscles softened enough.

I wouldn't worry too much about this being a 1-step, as you already had the first step of colon removal more than a decade ago. That said, you are also saying there is enough difficulty with your anatomy to require multiple procedures to repair. How on earth is that a single step? If you need mesenteric lengthening, either separately or at the time of your j-pouch surgery, it would be prudent to have the diverting ileostomy. 

Hopefully, you'll get more information once you decide to go forward.

Jan

Thanks Jan for the reply, and I will reply back. I guess 1 isn't going to be a problem, as long as I am mentally ready( If I decide ) for what it entails. Something about more possible complications( not failure ), no specifics were given. My fear would be an NG Tube, and your laid up not drinking anything for awhile. - Didn't get that deep into the conversation, I was so tired, I should have rescheduled, as I was putting all my thought on hernia( more on my reply later ). I literally had 3 hours of sleep, then over an hour half drive, a 45 min wait, so I was so tired and drained before any convo took place. There is a lingering question, two top surgeons had difference opinions....."Possibe Hernia" can get worse lifting weights, or....it was bc the age of ileo, and just loosening of the muscle wall....and weights will not effect it....Also with a revision, and further look, sent to a specialist based upon My Lifting Goals. They said it's not common for someone to lift like I do with an Ileo and to do it for so long, that the top surgeon is referring me out bc of my lifestyle.