Hello, my name is Daniel, I'm 19 and I'm from Spain.

I'm going to face my second surgery, the J-pouch one. I've got an Ileostomy right now and I got my Colon removed but not my rectum. (This surgery was 1 month ago, I'm going to have the second one in November most probably)

I was really sick due to corticoids and I had really low nutritional values (anemia, low albumin, etc) so my surgeon told me that they will do everything on 3 stages.

Now that I have my Ileostomy, I feel much stronger and my values are perfect, no more anemia, albumin is fine, etc.

So I've been reading on the Internet that every J-pouch surgery where Rectum has not been removed on the first stage, will have a 3rd surgery..

I have two questions, this one is the most important for me :

If my nutritional values are good, no more medication(no corticoids anymore) my rectum doesn't bleed , I feel strong.. Is it possible for me to have only one more surgery where my rectum is removed, my J-pouch is created and I can start to use it? Or am I forced to have a third surgery?

I am doing this question because I see that some people has their J-pouch surgery in only 1 stage because they have good nutritional values, etc.. so if these people can have a surgery where Colon, rectum is removed, J-pouch is created and they can start using it without a temporal ileostomy, why wouldn't I be able to have a surgery where only my rectum is removed and my J-pouch created?

And this is the other question :

If im forced to have a third surgery, how much time has to pass between the 2nd surgery and the 3rd surgery?
How is the post-operatory of this surgery?

That's all.. I really would aprecciate a lot if you answer me this questions because I want to forget everything that involves this and I want to start my new life as soon as possible.. I hate living with an ileostomy and I want to know what I'm going to face during this time.

Thanks a lot for reading and sorry for my bad english.
Original Post
For me, it was emergency removal of colon June 2012 (step 1). Create the J-pouch Jan. 2013 (step 2). Connect the J-pouch and take down stoma April 2013 (step3).

Easiest of the 3 surgeries for me was the 2nd step. It is best to be healthy and strong and healed for any surgery.
Thanks for answering.. but do you know if I am forced to have a third surgery if I only got my colon removed on first one?

Isn't it possible to remove colon, create the J-pouch and don't have a protective ileostomy?
I think you need to do what your surgeon is comfortable doing. S/he may not do step 2 & 3 together. I'd ask but think you will end up with 3 stages.

I had the traditional 2 step and before my 2nd surgery my j-pouch was tested for leaks. The danger I see in having it built and used right away is it doesn't have time to heal before waste starts running through it plus it might leak.

Good Luck and please let us know how things go.
Your English is perfect.
This really has to be determined by your surgeon. I have heard some people getting j-pouch creation surgery and start using it immediately, but not often. Your surgeon may or may not give you that option.
I have wondered about the three stage surgery. Most people on this forum seem to have three stages. I had two. My colon was removed in the first. I had an end ileostomy. I had to regain health to have the second surgery. It was the creation of a j pouch. It has only been five months but so far has been successful. Not sure why some people get that in between surgery with a loop ileostomy (if I'm understanding it correctly).
Hopefully your surgeon will make the right suggestion for your situation and level of health.
quote:
Not sure why some people get that in between surgery with a loop ileostomy (if I'm understanding it correctly).


I think you are a little confused. The loop ileostomy can be done in two stages and was in my case. In fact most 2 step procedures are done with a loop ileostomy created at the time of step 1 surgery. 3 step procedures involve the creation of a J Pouch in a separate procedure. My J Pouch was created at the same time the colon was removed. The loop ileostomy was also created in step 1 and functioned for 3 months until I passed the pouchogram and had step 2 takedown. That is the usual 2 steps. People that need 3 stages are usually too sick to have it done in 2.
CT....if I remember correctly, you had a toxic mega colon correct? If yes, were you not also extremely sick? Did you "plan to have a J pouch when you had your colon removed, or was it an emergency removal?


I did not know what a J pouch was until 2 months after I lost my colon and had a follow up visit with my GI. I was so sick when I was admitted to the hospital, I really don't know what their plan of attack was to help me. By "their, I mean, my GI, GP, IC, and surgeon. I was originally admitted because, I had pulmonary embolisms.
I did not have toxic megacolon nor was I very sick at the time of step 1, or at least I did not feel any more sick than being in my usual flare. My last scope preceded step 1 by about 9 months and it showed dysplasia and inflammation of the entire colon. During that time I booked 2 appointments with my surgeon and the surgery date was delayed because he wanted me to lose weight. I weighed a solid 162 pounds and my appetite was good prior to surgery. My surgeon wanted me to lose 10 pounds, so I dropped from 172 to 162 which was hard taking 60 mg of Prednisone. During that time I began to deteriorate although the extent was not known until the colon came out.

It was not an emergency surgery - it was a planned surgery and the J Pouch was also planned. I did not feel much worse than I had in the prior 9 months. However, when the colon came out my surgeon said it was dissolving in his hands. He said the surgery could not have waited and it would have been an emergency due to toxic megacolon had it waited any longer. However since it was planned, I got lucky so to speak. My surgeon was Dr. Gelernt of Mount Sinai in NYC who at that time was considered the best J Pouch surgeon in the USA. He had done thousands of pouches by 1992, had done the first K Pouch in the USA and had studied with the famed Dr. Nils Kock in Sweden. I was simply lucky in my timing of a planned surgery and in having the best surgeon at that time.

If it had been an emergency I would have been a 3 step. Because I was planned they used the time to do the J Pouch since my ileum was healthy and my weight was solid. At that time, the surgery of step 1 of a 2 step took a long time to do both the colectomy and J Pouch formation. 2 surgeons were used (Dr. Steven Gorfine assisted Dr. Gelernt) and the entire procedure lasts many hours, so it has to be planned in advance. You cannot build a J Pouch "on the fly." They did not do the surgery laparoscopically at that time. I did lose 27 pounds after surgery from various post-surgical complications.

Many people delay surgery for various reasons, usually indecision, and the result is they deteriorate and go from 2 step candidates to 3 step or emergency surgery candidates. If emergency surgery is needed and you cannot be rushed to a Cleveland Clinic or other top notch facility in GI care, I believe the ultimate chances for a good result go down. My own deterioration was not something I actually felt or perceived in terms of feeling much worse, and it occurred during a period of months.
Last edited by CTBarrister
Hi Daniel, I agree with others that your surgeon usually determines how many stages you'll need to complete the J-Pouch procedure, as well as your health at time of first surgery. Also a factor is how long you've been off Prednisone. My surgeon does 2 and 3, and I thought I was healthy enough but due to prednisone, which make your tissues inside easy to tear/harder to work with so he decided a 3 step would be more successful. When I had blockages near the loop Ileostomy after #2 surgery, he had me tested to see if pouch was viable, and only 3 weeks out it was healed and considered "viable" but he still felt more comfortable waiting to 2 months, which is the earliest he's ever done takedown. I trusted his decision cause he's done so many if these, which is why I chose him as my surgeon. I know people on this site have had 1 and 2 step but there are so many variables that it's gonna be based in your surgeon and you. I truly understand your desire to have 2 step- I was also disappointed when woke up after first surgery to find out it would be 3- and I am in a different life stage than you. I do wish you the best, and hope you get this behind you and heal quickly! Laurie
Really thanks for all the answers.. I know my surgeon determines how many stages will be needed.. I hope I can do it in 2.. I just can't live with an ileostomy, I hate it.
Yep... Most of us agree that we hate / hated the idea of an ileostomy, but truthfully it's not as bad as you would think (except for sexual relationships... that I did not have to deal with).

Best part about an ileostomy.... you can fart in your bag and nobody will ever know. Nobody can blame you for the smell in the room and you really can blame the dog!

Worst part about an ileostomy: when your bag leaks in public, because you just went to an all you can eat buffet and skipped going to the restroom before leaving for home.

Both are true stories.. but just as you start to get used to a life with an ileostomy, it's over and you begin a whole new way of adapting.

That which does not kill you, makes you stronger! Thank goodness, I surrounded myself with supportive friends and family.

Hi Daniel

I've only just joined this group, so consequently have only just seen these posts!

Hopefully, by now, you will be the proud 'owner' of a j pouch?

My partner and I are are due to move to Spain within the next few months and my final surgery was carried out on 27th April (in the UK), following a few months of having a stoma.

I had ulcerative colitis, which didn't respond to an array of drugs; hence surgery!  Initially, my surgeon was going to aim for a two-stage process, but i became too unwell to have that have.  So, intial ileostomy on 16th June 2014, j-pouch formed and a temporary loop ileostomy on 24th February 2015 and the reversal/ j pouch 'gone live' on 27th April; a little over eight weeks between stage 2 and 3.

It's early days for me and although I'm finding the recovery process a little more challenging than the previous two stages (even though they were pretty major ops compared to the final bit!), I have no regrets about having it done and am looking forward to a new life in Spain.

I do hope things are working out for you.

te deseo lo mejor

Garry

Hello! Old thread but  im going to my surgery #2 this monday. My surgeon says I could be getting the takedown after 4-5 weeks (surgery #3) after surgery #2 if it all goes well, no leaks, infections etc. 
I really want to do it as fast as possible because I doubt a loop ileostomy will be much fun, and because I want the bag out of my belly. 

Wondering if anyone had a short time between surgery #2 & #3?

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