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What is surgery 2 of 3 like? (j-pouch)
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Date Joined May 2012
Total Posts : 2500
Posted 3/22/2013 10:41 AM (GMT -6)
Well, I'm starting to get closer to my second surgery, 40 days away (but who's counting?)... I'm having three steps so the second surgery is j-pouch construction, loop ileostomy, and removing most of the rectum (cuff remains for pouch anastomosis).
I'll most likely be having the surgery performed lapro again. My pre-op appointment is in a couple of weeks, but I was wondering if people who have had three steps (or 2 out of 3 thus far) could share what their experience was like. Is the recovery as hard (or harder?!) than the first surgery? Did you find your loop ileo was very different from your end ileo? Did you need to switch pouching systems? What about
the rectum removal -- do you actually feel healing pain like... in your butt? Is it painful to sit? Can you "feel" the j-pouch/do you have different sensations when you have to pass mucus? How long did it take you to return to work and exercise? How long did you have to wait before takedown? Did you have any different dietary issues with the loop ileo vs the end? If you still had inflammation in the rectal stump after step 1, did you feel an overall increase in energy/health from having the rest of the rectum removed?
Thanks so much, love you guys!
dx'ed UC pancolitis 5/12
past meds: asacol hd, VSL#3, apriso, rowasa, xifaxan, 6mp, cortifoam, pentasa, cimzia, canasa, butyrate, flagyl, cipro, prednisone, remicade, methotrexate, cholestyramine, cortenema
current meds: butyrate
step one: colectomy, end ileo 1/16/13
step two: j-pouch construction, loop ileo 5/1/13
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Date Joined Feb 2011
Total Posts : 4380
Posted 3/22/2013 11:58 AM (GMT -6)
I had two step surgery, not 3 so I had the proctocolectomy and the j pouch made at the same time. For me, that was a rough surgery and I was in the OR for 8 hours. I think you will find that it's going to be rougher on you than the first because its pretty involved but you shouldn't be under as long as I was. It's definitely the harder step. You will probably notice the loop ileo is a bit of a pain. I had my takedown 3 months after. It would have been sooner but I had some complications (abcsess/infection) so that set me back a bit.
DX UC in 2005. Family history of UC.
Tried every drug-even Remicade-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs!! Very happy j-poucher!! :)
Post Edited (ByeByeUC) : 3/22/2013 11:01:46 AM (GMT-6)
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Date Joined Jul 2012
Total Posts : 1685
Posted 3/22/2013 12:13 PM (GMT -6)
I've heard that it's harder to deal with. You go in semi-healthy and then have major surgery...so it feels like more of a drop in health afterward. It's also a physically tougher surgery in general. I haven't had mine yet, so I'm just repeating what I've heard from medical professionals.
Drug refractory UC
Colectomy with end ileostomy August 30th, 2012 - jpouch sometime
IBD related arthritis and peristomal pyoderm gangrenosome
Humira, finally off of steroids! Aiming to have Step 2 in August 2013.
Tried lots of drugs and diet, didn't work for me.
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Date Joined Jun 2011
Total Posts : 1912
Posted 3/22/2013 1:52 PM (GMT -6)
I had three steps, and the 2nd was definitely heftier than the colectomy. With the first OP, I healed up very fast and got sent home. No problems with stoma, just the usualproblems with finding the right bag system. Then just gradual recovery, going for walks, seeing how much new energy I had each day, etc.
The 2nd OP gave me a loop stoma, because he took the end stoma down to create my jpouch. It behaves a bit differently, and as soon as I got home I was loosing bags and bags of water and nearly dehydrated. I felt worse than I ever had in my life, could hardly move and friends had to go shopping for me because I wouldn't be able to get back up the stairs with such low blood pressure. Taking immodium helped enormously. Recovery over the month was similar to the first OP, but it took longer to get my energy back and as a whole this 2nd took the starch out of me much more than the first. But, I had the OP on Dec. 16th , was home on the 29th, and went to a New Years eve party, even danced a bit.
I would just watch out for how you feel at home, and make sure you don't dehydrate. Drinking more water won't help (you still need to drink 3 liters), if it's happening. You will need to take immodium.
UC Dx and then 7 years of no symtoms. But when they started, they didn't let up, ASA stopped working, pred stopped working, and azathioprin did nothing. The threat of much more radical drugs, plus the fact that a stricture was about
to shut down my colon, led to my decision for a total colectomy in April 2011, 2nd step December 2011 and ... TAKE-DOWN WAS ON MARCH 19, 2012.
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Date Joined Mar 2009
Total Posts : 572
Posted 3/22/2013 1:58 PM (GMT -6)
Liz. I was a 3stepper. You asked.. so here goes.
Is the recovery as hard (or harder?!) than the first surgery? For me step 2 was definitely the hardest. I think some of it was because I was healthy going into step 2, unlike step 1. Recovery was longer and more painful.
Did you find your loop ileo was very different from your end ileo? YES, much more output. And had significant dehydration issues. Was sent home after 10days with IV hydration and home nurses, but still ended up getting reaadmitted to the hospital for another seven days to get output more under control.
Did you need to switch pouching systems? YES. Also, it took some experimenting to get things to work, which I didn't really have to do with my end ileo after step 1.
the rectum removal -- do you actually feel healing pain like... in your butt? Is it painful to sit?I did have pain when sitting, but it was way up into the tailbone pain. It went on for several months I think.
Can you "feel" the j-pouch/do you have different sensations when you have to pass mucus? So, I wasn't passing as much mucousy stuff initially as the diseased rectum was finally gone. Maybe only once or twice a day intially after step 2. However, after a few months I developed severe diversionary pouchitis and then massive stricturing.. so basically the yucky mucous couldn't get out. This caused severe pain, fevers, joint pains, etc. Once my surgeon figured out what was going on, I had to have a dilation surgery.
How long did it take you to return to work and exercise? about
8 weeks after the 2nd hospital discharge.
How long did you have to wait before takedown? I had a mandatory 6month wait period, per my surgeon. However for socioeconomic reasons - I waited 11 months. Basically needed to schedule takedown to be able to take off more time from work.
Did you have any different dietary issues with the loop ileo vs the end? I don't recall. I do just remember I had to be significantly more focused on staying hydrated. Also, I did lose weight with the loop ileo, but I never did much about
If you still had inflammation in the rectal stump after step 1, did you feel an overall increase in energy/health from having the rest of the rectum removed? Initially yes, but then when the diversion pouchitis started, it was far worse than the rectal stump problems after step 1.
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Date Joined Oct 2009
Total Posts : 713
Posted 3/22/2013 4:47 PM (GMT -6)
I just had step 2 on Jan 11 and am hoping to have step 3 in the next 4 weeks.
Is the recovery as hard (or harder?!) than the first surgery? Yes, it was harder. I recovered very well in hospital to the point my surgeons were surprised I was really ready to go home after 5 days. I like others, had complications that put me back in the hospital for 3 days with antibiotics and a manual "stretching" of the pouch
Did you find your loop ileo was very different from your end ileo? Did you need to switch pouching systems? Yes and yes. Initially, I hated my loop because it points down onto my skin, but I do find it is able to pass more foods without any issues. I am actually eating more things than I did with my end ileo.
the rectum removal -- do you actually feel healing pain like... in your butt? Is it painful to sit? Yes and yes. Part of my complications involved lots of butt and back pain. After I left the hospital the second time it was much better. I still have some "discomfort"when I sit.
Can you "feel" the j-pouch/do you have different sensations when you have to pass mucus? Yes I feel it sometimes. Most often not. It just comes out when I sit to urinate, but I have it EVERY time I go to the washroom.
How long did it take you to return to work and exercise? Work 6 weeks - could've used longer given the complications. Exercise - I haven't done much yet, but that has to do with me and not because I can't. I do find I am still quite fatigued.
How long did you have to wait before takedown? I don't have my date yet, but it is meant to be 12 weeks.
Did you have any different dietary issues with the loop ileo vs the end? I eat more things than with my end ileo. I found whenever I ate salad with my end ileo, I would feel it moving along and there would be pressure as it came out. I have none of that with my loop.
If you still had inflammation in the rectal stump after step 1, did you feel an overall increase in energy/health from having the rest of the rectum removed? Nothing noticeable and I did have inflammation in my rectal stump -not much, but there was mucous and a bit of blood a few times per day.
F/43 • ON, CAN • UC Dx Sep/09- 50cm (far as flex went)
Step 1- Subtotal Colectomy w/end ileo - Nov. 16/11
Step 2 - Pouch creation w/loop ileo - Jan 11, 2013
Step 3 - Take down - April 2013
All UC meds and alternatives failed, including remicade and FT.
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