Another J pouch Question

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colitisresearch
Regular Member


Date Joined Mar 2018
Total Posts : 28
   Posted 6/12/2018 8:58 PM (GMT -6)   
Hi all,
I have more questions in my never-ending quest for information about the Jpouch experience..

It looks like I will likely undergo this surgery in August.. My surgeon says she's pretty sure she will be doing these surgeries in 2-steps based on my blood work.. but warns that it might have to be 3-steps based on what she sees..when "she gets in there."
Question: Did anyone else's surgeon say this?

Also, on recovery... after you come home from the hospital from Surgery #1.. what is the level of activity I should expect.. can I drive.. do light housework? Just trying to gauge what type of help I will need.
Also.. when did you go back to work? I work in an office at a computer.. so no heavy lifting.

One last one-- Did anyone here have their surgery at UCSF (Univ of CA San Francisco).. and if so, who was your surgeon.
Thanks so much for all of your advice.. you guys are an incredible resource for information.
45 yr old woman, diagnosed in fall of 2014 6 months after having 2nd baby. tried just about every drug under the sun with no luck. also tried probiotics, supplements and accupuncture

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16552
   Posted 6/12/2018 10:46 PM (GMT -6)   
I am sorry you're having to consider surgery. It's a tough blow to have to go to this extent to get things managed, but I can relate because it happened to me. Never at any point in my life did i think this was headed my way until it happened...

for your first question, yes, my surgeon said the same. He said he would hope for 2 steps, but that he thought it would probably be 3 in my case. I am sure you will get 2 steps since she seemed to insinuate that it was hopeful in your case. Mine was the opposite, more like, "i will try for 2 but i can't promise anything". I was on quite a bit of steroids since diagnosis, various doses, and I was holind extra weight from those courses. I guess 3 steps was my best and safest option, and it was a blow when I woke up and heard I would require 3, but in the bigger picture, I made it, I am happy with my outcome & I have my whole life ahead of me. So hope for 2, but don't be heartbroken if it's 3. You will get through it.

After my first step, I was in the hospital for about 5 days I think. I was pretty useless. I was trying to do basic chores around the house, but you can't lift more than a laptop, so about 10 pounds max. If you're on pain meds you can't drive. I was off them within a week, and I drove myself to my follow up. I am sure my surgeon thought I was nuts, but I had to get there and I wasn't on drugs, and I felt capable enough. It wasn't the most comfortable driving and parking at a meter and walking at a week post step 1. My insurance set me up with an at home nurse. I think she came 3x. she checked vitals and helped me learn how to use the appliance. I think it's smart to familiarize witht he products a bit, but don't order samples until you know the size of your stoma. Usually you meet with the stoma nurse once before surgery, she marks you and gives you a kit with some information and supplies. After that, you might see her in the hospital for your first change after surgery. Then you go home, and the at home nurse helps you. before you know it, you're a pro. You know what you like, you know what products work for you... things are pretty easy. Actually easier with the end ileo (in 3 steps). The loop was awful for me.

I didn't go to UCSF so i can't give any advice there, but i have heard good things. Perhaps someoen who went there will respond.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

colitisresearch
Regular Member


Date Joined Mar 2018
Total Posts : 28
   Posted 6/12/2018 11:49 PM (GMT -6)   
Thanks notsosicklygirl... you're insight and experience have been really helpful.
I never thought in a million years I would have my colon removed! It's still seems crazy to even write that. My GI recommended this surgery (because I haven't responded to any drugs) more than 2 years ago. I wasn't ready at the time.. but now I'm slowly getting more comfortable with the idea.
My guess is that it will be 2-step based on discussions with the surgeon.. I just think she wants me to be prepared if things don't look to good when she operates. I'm in fairly good health other than the UC and have a normal BMI... so I think that works in my favor.
45 yr old woman, diagnosed in fall of 2014 6 months after having 2nd baby. tried just about every drug under the sun with no luck. also tried probiotics, supplements and accupuncture

Bull101
Veteran Member


Date Joined Feb 2015
Total Posts : 552
   Posted 6/13/2018 7:14 AM (GMT -6)   
I had 2 step done. I was working from the hospital on my laptop the day after surgery I think. Depends on how extensive your job is or how much concentration you need. For me it was just some emails.

Back into the office was probably 2 weeks after surgery, I had a family member stay with me for about a month that helped me out and drove me the first 2 weeks or so. Didn't need the help for changing my bag or anything it was just really nice not having to worry about cleaning or cooking etc.

Kanva
Regular Member


Date Joined Mar 2017
Total Posts : 139
   Posted 6/13/2018 6:12 PM (GMT -6)   
I had three-step j-pouch surgery and had the third and final surgery five days ago.
Recovery after step one was a long haul for me because my body had been so depleted by ulcerative colitis. I don’t think I really got my strength back for months. It didn’t help that I had to wean off of prednisone for several months after the surgery, either. My work has a wonderful leave option, so I have been able to take six weeks of paid leave after every surgery.
Recovery from the second surgery was very similar for me. Even though my body was physically stronger, the anesthesia and surgery were harder for me.
What I found after both surgeries was that I really was not much help to my family for at least two weeks. I was not good at being a patient, and it made me really grumpy to watch my family do things without having any control over them. Both times, I felt that I really turned a corner after the first two weeks, but not to normal.
I don’t know yet what to expect from recovery this time around. I think I was unprepared for food restrictions, because I didn’t have to do much after the first two surgeries. Now I read stories about people who say they had to eat a low-residue diet for months and months, and I worry that will be me. I had come to love having access to fresh fruits and vegetables again, and I hope that isn’t too limited.
My best advice for anyone trying to prepare for surgery recovery is to be patient with yourself, because it will likely take longer than you would like to get back to normal. But if you take the time to do it well, you’ll reap the benefits for a long time afterwards.
Best of luck!
Diagnosed with ulcerative colitis in 2011. In remission until 2015 with Lialda and prednisone.
No response with Entyvio or Remicade, azathioprine.
Opted for three-step j pouch surgery. Completed step one (subtotal colectomy with ileostomy) May 2017. Completed step two (protocolectomy, ileal pouch anal anastomosis and loop ileostomy) January 2018. Completed step three (takedown) June 2018.

colitisresearch
Regular Member


Date Joined Mar 2018
Total Posts : 28
   Posted 6/13/2018 10:43 PM (GMT -6)   
Thanks you guys... I appreciate your stories and encouragement. It means a lot!
I have a lot of family support and my husband will take some time off work when I get home from the hospital to take charge of things around the house. With two young kids.. this will be no small task!
45 yr old woman, diagnosed in fall of 2014 6 months after having 2nd baby. tried just about every drug under the sun with no luck. also tried probiotics, supplements and accupuncture
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