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Hello all! I am having the first part of my two-procedure j-pouch surgery on 4/15/15.  Thank God I have already filed my taxes... I use humor a lot to alleviate tension. Anyway, I will be having a total proctocolectomy on 4/15 with j-pouch creation. I am just curious what to expect in terms of recovery.  I am a nurse, so I am realistic, just curious as to how long it took people to be able to go up/down stairs.  I have been sick for almost two complete years, so anything will be better than this!

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A lot depends on your physical condition prior to the surgery and if your surgery is open or laparoscopic.

I was very ill, my bowel ruptured, and I was in sepsis, needed TPN prior to surgery & had other complications that made recovery difficult from an open surgery.

In contrast, stage 2 of 3, also open, was much easier to bounce back from because I was in better physical condition.

Best advice anyone & everyone gives is to walk as much and as often as you can, but know it's a big operation that will require some time to heal.
ATXGuy

Lovetolive430, I use humor a lot too!  I can't take things too seriusly anymore.  What to expect.  Well, it's about an 8 hour procedure.  When you wake up most likely you will be in an who,e lot of pain.  At least my son was.  Use the pain pump whether you need it or not.  You will most likely be in the hospital 5-7 days.  Recovery time, about 6-8 weeks.  Now of course my son just plain had a difficult time with everything.  It's a tough surgery, it really is.  And it may not solve all your problems.  Sometimes it creates more than it solves.  You won't be able to drive for 6 weeks so stock up on books or knitting projects.  And figure you will lose weight, that's the bonus.  My son lost 110 pounds, but he had lots of issues.  How long are they going to leave the ostomy in place before they do the take down?  I'm sure you will know how to deal with that, or will learn rather quickly.  Jeff is 23 so he wanted no part of it and as a result, I was completely grounded!  It was a long beach less summer for me!  This is turning out to not be much better.  

 

Seriously, thats about the long and short of it.  Good luck to you and please le us know how you are doing.  It's a pretty friendly group here, so im sure we will want to cheer you along.

 

dianne

Jeffsmom
Most people don't have serious complications or issues.

It is a major surgery, but remember that most of the people here are people who had or are having complications or issues.

Because you're an RN, I expect you'll adapt to the ostomy pretty easily. I wasn't a big fan of having it, but I had very few problems with it. I also had an excellent wound care nurse, and that helped.

To answer your question about stairs, I'd say by the time you're released, you should be able to manage stairs slowly.
ATXGuy

A little more history--I am a 28 y/o female. Healthy otherwise after getting rid of the c diff.  No food allergies or other GI/autoimmune issues, and at this time, my colitis has subsided to the bottom third of my colon. My surgeon said my relatively better condition of my colon (compared to when it turns into pancolitis), and refusal to continue steroid or biologic use about four months ago will make my procedure easier and recovery smoother. I will be having a laparoscopic removal with small incision for ostomy placement.  His patients typically stay 3-5 days, but he suspects I will only want to stay for three and as long as there are no complications he is okay with that.

L

I'd predict that you'll be able to deal with stairs upon discharge. I slept in my brother's basement when I got out (and had no trouble with the stairs), but I was in for 10 days (with a post-op ileus) and had a one-stage procedure, so my experience isn't directly comparable. I suggest you make sure the bannister is secure.

 

And some surgeons do the procedure more quickly than others. Although I was asleep at the time, I'm told that mine took more like two hours.

Scott F

everyone is different with recovery. I had 3 step and I found the jpouch surgery recovery tougher than the first surgery when I had the subtotal colectomy when I was very sick.

 

expect anal discomfort for a good few weeks and allow a month to get used to the ileostomy in terms of finding the right appliance, diet and managing leaks etc.

 

usually by the time everything has settled you are ready for takedown

S

Hi, everyone!

 

My name is Megan and I am new to the group! I've struggled with a nasty case of UC over the last couple years and am headed into surgery this Friday, 4/10. Eeeeek!

 

The nerves are coming on strong! I am so ready to just get it over with and hopefully be on the road to recovery. The plan is a two step surgery and I'm hoping everything will run smoothly. I've been a slave to prednisone over the years but am currently not on it. I tried Simponi, Humira, and Remicade. None of which worked. Hopefully all that jazz is out of my system and won't complicate anything.

 

Unlike lovetolive, I have NOT filed my taxes! I better get on that!

 

My hospital stay is expected to be between 7-10 days! I wonder why so long in comparison with everyone else. Altho, I'm happy to except the extra care.

 

Any and all feedback is much appreciated!!

M

My personal experience with both of my surgeries (step 1 and 2) was that my bowels did not wake up for several days (very long surgeries do not bode well for bowel activity).  So I was very nauseous and sick and required an NG tube.  I'm not sure why all surgeons don't just put the NG tube in as a precautionary measure while you are alseep instead of having the patient go through having it inserted while awake and sick later.  I'm not sure what % of people get ileus after these types of surgeries, but it seems high to me.  I would advise asking for one during surgery.  They can always pull it if you're doing well and able to start eating and drinking without issue (they can clamp the tube so you can test it out).  Maybe ileus is not the norm, but that is my advice.

clz81

I always tell people to hope for the best possible outcome but plan for the worst. I had some complications after my first step (abscess/infection) that I never even considered could happen. So being that you're a nurse, I'm sure you know all about that. I just wished I was more prepared mentally than something could go wrong. But it was pretty short lived in the grand scheme of things and my j pouch is awesome! Best of luck! 

mgmt10

Megan, my son's hospital stay was the same.  Every surgery is different, but if you are having your entire colon removed and a j-pouch created, it's a long surgery, ours was 8 hours.  And pain management is difficult.  We are at the surgeon's office right now for a post op.  Good luck with your surgery and your taxes!

Jeffsmom

I'm 1 month out from the 1st step, and I've been doing pretty much whatever I want to for the last 2 weeks.  My surgery was done with a surgical robot, so I only had 6 small (less than 1") incisions, which I'm sure contributed to my somewhat quick recovery.  The worst part is this stoma and bag.  I just can't get it to work right because of the location and orientation of the stoma.  Takedown is in 2 weeks though, so it'll all be over soon.  Good luck with your surgery.  Make sure you eat and walk as much as you can.  Walking a lot is key, and don't try and skimp on the pain meds.....take anything they'll give you :-)

S
Good luck with it all.  I was so worried about the first step being so difficult as it was 6 hours and a lot being done, having said that .. I found it ok and never had any issues pain or otherwise and was home on day 7 and our bedrooms and bathrooms are upstairs and it wasn't a problem.  I was a bit tender but didn't take any pain meds.  Step 2 for me was not pleasant as I developed ileus and ended up with a NG tube which was only in for an hour as it coiled and I was still vomiting.  After 3 days the ileus passed thank god.  I am now a very happy j poucher - still get up once or twice a night and go maybe 6 times a day but it's better than steroids and flares! Wishing you all the best (PS the hardest part was getting to adjust to the stoma .. I hated the bag)
L

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