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New here. 3 step J-pouch...

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Posted 9/28/2015 2:01 PM (GMT 0)
Hi all. First time poster here in the Ostomy forums. I am one week post op subtotal colectomy with ileostomy. I plan on doing the 3 step J-pouch, so I am a third of the way there. Still in quite a bit of pain but it's getting better every day. Just did my first appliance change, and I think all went well so we will have to wait and see. I am tapering off of Prednisone right now which doesn't make recovery any easier, really wish I wasn't dealing with that right now but oh well.
I was just wondering for those of you that are on the same path as me, which surgery needed the most recovery time of the 3? Which one did you find the most difficult? My first surgery was done laparoscopically so I guess I have to take that into consideration. Anyways I'm really just here to introduce myself and maybe learn a few things from everyone here, take care all.
Posted 9/28/2015 2:22 PM (GMT 0)
Hi there! I am a month out from step 1 of 2, so not in the same position as you. However, based on the research and the people I have communicated with who have gone through the 3-step process, everyone has told me that step 2 of 3 (removal of rectum and j-pouch creation) is the most painful/difficult.

Congrats on being well on your way!
Posted 9/28/2015 4:24 PM (GMT 0)
Good to know. I was hoping it got easier as you went along but I guess not. How long are you waiting to do the second step? I'm still trying to figure out how soon I want to do it. 8 weeks? 10 weeks?
Posted 9/28/2015 4:24 PM (GMT 0)
I had a two step not a three so I had the proctocolectomy and the j pouch creation in the same surgery. Step two for me was takedown. Not saying your step two will be any harder than your step one but, if one were to tougher than the other I would say step two is. The creation of the j pouch is the trickiest and most time consuming part so it's likely you'll be under anesthesia longer for step two. Takedown (for me) was a breeze. Best wishes and welcome to the club!
Posted 9/28/2015 5:51 PM (GMT 0)
My surgeon is having me wait for 12 weeks in between surgeries to allow the pouch to heal. I had my first pouchoscopy last week (its healing up pretty well), so I will come back in about two months for another pouchoscopy/contrast enema to determine if there's any leakage. If the pouch passes those tests, then I will have takedown in late November.
Posted 9/29/2015 1:08 AM (GMT 0)
I am doing 3 steps and i waited 3 months between 1 and 2. I just had step 2, and while it was difficult, I think I snapped back faster because my overall health was better going into it. I had it on Friday and I am home today, hopefully back to work on Friday. I work from home so my work is not as grueling as most, I work a lot of hours and it's a stressful position but not having to go into an office makes it much better for me. I was trying to find out how long the typical hospital stay was after surgery 2 (seems like most people have 2 steps total so it's not easy to find info on what to expect after step 2 of 3). The little info I found seemed like people had longer stays. My surgeon said it averages 5-7 days. I expected to be on the high end. I felt really bad initially. The pain is quite high but not anything shocking after having experienced step 1. My stoma started producing right away... The hardest part was getting up and sitting down the first day or two. Every time I had to go to the toilet, I was scared.
Posted 9/29/2015 1:39 AM (GMT 0)
All the steps have their own challenges; step-1 I had to deal with Predisone withdrawal and learning how to live with an ostomy. Step-2 was a major surgery (longer recovery time) and the loop ostomy was difficult to live with because of the high output, I lost a lot of weight (30 lbs). Step-3 your pouch has to learn how to empty, I also got an abscess which I had to treat.

All of these 3 surgeries were manageable but I couldn't imagine doing it in only a 2-step surgery.
Posted 9/29/2015 2:05 PM (GMT 0)
Thank you all for sharing your experiences. I agree I do read a lot more about people having it done in 2 steps rather than 3. I'm just looking forward to getting in better shape before going in for the 2nd surgery and hopefully gaining some weight back that I lost. This process is so up and down it's sometimes hard to wrap my head around it all. It sounds like the 8 weeks between step 1 and 2 sounds a bit quick but that is what my surgeon initially stated. I guess there is no rush, we will see how I feel at that time.
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