Hi everyone,

I have been lurking this forum since about January pretty religiously because I had a really bad flare up and ended up having to have a colectomy. I am wanting to have the jpouch done and have to have a 3 step procedure due to the state I was in before the surgery. I had read most people had their steps done in 3 month increments but my surgeon has told me between my 1st and 2nd step they would do it at 6 months to a year at minimum. I understand his reasoning as they want me to be fully healed before they make an attempt. I would like to hear from others what their time between surgery was like and how bad your condition was before you got the surgery.  

Thanks! 

Original Post

I was in a pretty bad shape 1 month before my surgery. My weight had dropped from 46kgs from 54kgs. Though I've been working out till a week before my surgery. Got the jpouch in 2 steps, I had to wait upto 8-9 weeks , my colon was removed and the pouch created simultaneously and then takedown. My surgeon said 6 weeks was good enough for the pouch to heal but I waited just to be sure. Anyways if he had said 3 months I'd have taken 4 . So whatever time your surgeon recommended stick to it , they know whats best. 

Good luck 👍

I was in worse shape than expected. I was an elective surgery due to low grade dysplasia and was asked to lose 10 pounds for surgery. In the several months it took me to do that and then get a surgical appointment I deteriorated. When my colon was removed in surgery #1 my surgeon advised it was dissolving in his hands from the inflammation. I would have had toxic megacolon probably within weeks had I not proceeded.

For me 3 months exactly between step 1 and step 2. They do a pouchogram to make sure it doesn’t leak and you can’t have the second surgery until you pass the test so it’s not an arbitrary decision as your question implies. You either pass the pouchogram or you wait, it’s that simple. I passed first shot.

My UC diagnosis and colectomy were both fairly quick. I was diagnosed with UC in Feb. 2006, had a baby in March 2006, and a colectomy May 2006. Following the colectomy, my second surgery was in August  2006, and take down done in October 2006. I've since been re-diagnosed with crohns.

I also had a 3 step procedure, though mine was a little more protracted than most. Generally it's at least 6 months between steps 1 and 2. My step 1 was done as an emergency, in July 2005 due to what was described to me as "air bubbles" in the colon wall which suggested  I was at high risk for perforation.  At the time I was seriously ill and very underweight, and my recovery was also complicated by ileus. Given that my health was so poor at the time, it was recommended that I wait until I gained some weight back and was stronger until I considered further options, and then I also had to wait for referral to another surgeon who performed j-pouches. Unfortunately the UC in my retained rectal stump never went into remission so I was still dealing with other manifestations of UC the whole time.  I was finally able to go ahead with the j-pouch creation and step 2 was done in September 2007, over 2 years later. That surgery was complicated by a post opt obstruction. I finally had my step 3 done in March 2008, and that step was all smooth sailing.

I had two step procedure. I waited only 10 weeks between removal of colon and the creation of j pouch, to the reversal. I had very excoriated skin around my retracted stoma and the only remedy was reversal and freedom from wafers and bag. The pouchoscopy confirmed that I was well healed inside so we went ahead. Everything is fine now, except for occasional frequency but that is completely due to what I eat. 

While I had the temporary ileo I developed excoriated skin around the stoma as well. I could never get a good seal. A yeast infection set in and takedown was the only thing that saved me from a downward spiral for the skin around the stoma. I was told that things could be different with a permanent end ileo but fortunately J Pouch has held up for 27 years.

I had 2 step process, took 10 weeks between procedures.. in my case it was preventative operation so i was relatively strong and there was no need to wait any longer, apparently they like to wait at least 10 weeks, but ultimately it's reassur until you are ready... Docs are good at guaging that..

5 months between step 1 and 2, and two months after that for takedown.  I think it has a lot to do with your condition going into surgery.  I was super sick and underweight.  I would have waited even longer after the first surgery to get my health back but the UC was still throwing tantrums in my stump, so it had to go!  I had my final surgery last September and adjusting more everyday.  I feel like myself again!

Coffee, everyone’s situation is unique.

I recently heard a surgeon explain to a patient that the body needs a minimum of six weeks to heal anything serious.  Break a bone:  6 week of healing.  Gall bladder removal:  6 weeks of healing.  That is if things go well and you are starting from a healthy baseline.

You are post colectomy, yes?  How is your ostomy working?  We got my end ostomy dialed in pretty quickly after my colectomy.  Things weren’t perfect, but it was much better than when I was in a flare.  And I could eat the things I couldn’t eat for 20 years of UC!

But I was pretty sick when they took out my colon and I dehisced (https://medical-dictionary.the...onary.com/dehiscence) a week post op.  That led to a five month wait to form my J pouch.

Step 2 puts you into a loop or diverting ostomy.  Mine was the bane of my existence for four months.  I could not keep a reliable seal.  It was a miserable time. 

I was obese going into the process.  That was part of the problem with my loop ostomy.  Get as healthy as you can while you are waiting for your next surgery to include getting to the healthiest weight you can achieve.  If your current ostomy is working well, maybe you should discuss with your surgeon any health goals which will make the rest of the process go smoother.

 

I had a two step and chose to wait a full year between Step 1 and Step 2 even though my surgeon said I was ready for the takedown after three months.  I wanted to be sure I was well healed and for the first time in years I felt really healthy!  I had trouble giving up my ileostomy because it was a Godsend!  Even when I was on the table ready to be put under, I was weeping!  My surgeon told me I could change my mind.  I chose to go ahead. It's been a little over15 years since my takedown and I love my J-pouch!  I can eat and drink anything/everything!  Best wishes!

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