Hi I am so glad I found this site although I do find there is so much info that some are hard to find, so I'm just going to put it out there and ask...
After the last three years of watching my daughter suffer and go in and out of the hospital, as I have said step 1 was done in Nov. I was told surgery would be approximately 8-10 hrs. 14 hours later the second surgeon emerged. I was lost.. They wanted her to go back to school the following week, Is that normal?? She was SSOOO sick, fatigued, listless, transfusions, learning how to mentally deal with a stoma, emptying, changing the bag, skin problems, WHAT were they thinking??!? I had to fight to keep her home!! Now in getting ready for the second step, I figure its better to ask here.. How long do we expect the surgery to take? WHat do we expect afterward? How long is she going to be hospitalized?? I'm a nurse, I'm not stupid, I know everyone is different and it depends on how it goes/how she recups... just looking for a 'ballpark'
I saw some say they needed another NG tube for step 2, PLEASE tell me not, they have never mentioned that again!! She will freak. I'm assuming she will be able to go back to school much quicker with this one, but what about learning to eat, go to the bathroom again, feeling, etc...??


Well, thanks for the info! Anything you can add is much appreciated!!

GO PATS!! :-)

I can't believe they were trying to send her back to school so quickly...was it the drs or the school officials?

The second step should be much less complicated. Mine was about 45 minutes long, no NG tube and only 3 days in hospital. The hospital stay depends on how quickly her bowels wake up.

As for going back to school that is going to be hard to predict. Everyone's body is so different. She might be lucky and fall into a good rhythm and control quickly (a few weeks) or it may take a few months to really get things under control. Not saying she'd need to be out the whole adjustment time, but until you learn how your new plumbing signals you to go and you get confident in your timing, it's hard to go any where.

We homeschool, so school wasn't an issue for us, but friends of ours have had their kids out of school for 4 to 6 weeks following their surgeries. Our daughter had a horrible first surgery due to it being emergency and other complications. Her first surgery took about 7 hours and she was in the hospital for 15 days. Our daughter didn't actually feel what she calls "better better" until just over 4 weeks following surgery.

Her second surgery (jpouch formation and pull through) took 4 hours because they said she had a lot of adhesions from the first surgery that they had to clean up. They prepared us for 5 to 6 hours, but everything went perfectly. She was only in the hospital for 6 days. She did have the NG tube, but no other drains besides the Foley catheter. They have to use the NG tube until the intestines are awake and pushing through the contents of the stomach which usually takes 2 to 3 days. She came out with a loop ostomy that was much harder to take care of than the end ileostomy after the first surgery.

Her third surgery for takedown took about 2 hours, but they also removed her port-a-cath at that time so it took a little longer. She was home 3 days after surgery. She was also in the bathroom 10 minutes after they brought her up to her room from recovery. She did really great with her surgeries.

Our daughter developed what we're pretty sure is pouchitis yesterday. Our GI first prescribed mesalamine suppositories but she is having allergic reaction to them, so we pick up some Flagyl for her tomorrow and see the GI doctor on Monday morning for blood tests and for her to get checked out.

She also has a procedure scheduled with the surgeon for next Thursday for dilitation (making sure that the anastomosis is not stricturing).

Is your daugther having her surgeries in 2 or 3 steps?

You can email me directly for more info. We're happy to help where we can.

Deverie

It amazes me that they would expect an 11 year old to go back to school a week after this major surgery, when they keep adults out of work for 6-12 weeks!! Simply shocking!

At the time, I was in Grade 10. And even though I was "sick", I did not like to think of myself that way. So going back to school as soon as possible, was a big thing for me. And against doctors orders, I was back in school 3 days after operation.

In hindsight, it was probably a bad idea. There were a few times, I almost passed out. But, I'd do it again. As I said, it was important for me. And I think it helped me recover and adapt to normal life again.

What I say, is it should be completely up to your daughter. She's 11. Missing some school isn't the end of the world. You can help her catch up, if she's behind. Play it by ear, don't make deadlines.

P.S.
I'm sorry this is happening to your daughter. It must be hard for you. I think my mum had a harder time than me. She was worried so much.

And the names of those drugs and TPN make me shudder. I'm glad that's all over.


Good luck.

Hi I found this site helpful too, my husband had step 3 in November 2006. Am unsure what step your daugher is taking in March. I think from what you have said she is taking her final step. If so my husband final op took an hour and he recovered quickly. Six weeks later he was back to work. Can't believe they expected your daugher to return to school so quickly. The good news is that although he still goes to the loo often (8 to 10 times a day) he feels more in control and is enjoying his life again and I hope your daugher returns to health as quickly as he did. I have a nine year daughter and can only imagine how difficult these last few years have been for you all. But remember there is always light at the end of the tunnel. Hope all goes well
Figit