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Crohn's Disease Forum » Parents of Kids with IBD » Appt with surgeon on Monday, what to ask?


01-07-2012, 10:58 AM   #1
G's mom
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Appt with surgeon on Monday, what to ask? Update surgery on 2/1

Garrison started hurting again on Tuesday, so he had a MRE on Wed. The dr. said to keep him on a very soft, liquid diet until we talk to the surgeon. (It looks like the TI is matted again) Our appt is on Monday for the surgeon and Wed. with the gastro. We have started our list of questions. But, I am coming to the experts for advice. What all do we need to ask?

Take care,
Vicky

Update, surgery is scheduled for 2/1. Garrison is back to a liquid diet and, while very nervous, ready to get it over with. The nurse was great to work with and we were able to schedule it so Garrison will be able to attend the district band workshop and take his SAT's before starting the cleanse.
The surgeon said he may not receive TPN while there, but Garrison has lost so much weight I may request that he go ahead and get a PICC line just in case. Hopefully he will get his Remicade treatment while in the hospital as well. We have already started collecting suckers and hard candy for him to suck on, and have plenty of gum leftover from our last stay. Any other suggestions for items that will make the stay easier?

Thanks,
Vicky

Last edited by G's mom; 01-23-2012 at 11:47 AM. Reason: update
01-07-2012, 01:14 PM   #2
Dexky
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Hey Vicky, did you post this in the Surgery section? I'm sure Dusty will have a great deal of insight for you. I'm not sorry to say we have no experience here. Good luck!!
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01-07-2012, 04:34 PM   #3
DustyKat
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Hey Vicky,

Okay...

1. Is surgery the only treatment option? Ask your GI this one as well

2. Based on his symptoms and scans what sort of surgery are you expecting to do? (open or laparscopic)

3. How much bowel do you think he will need removed and what will be removed?

4. How long will the surgery take?

5. How long will he be in recovery?

6. What tubes and drains can we expect him to have in when he returns to the ward?

7. How long will they be in for?

8. What pain management and other IV mediations will he receive?

9. What pain management will he receive when he goes to oral medication?

10. All going well, how long will he be in hospital for?

11. How often will you visit and what time do you do your rounds?

Quetsions 2, 3, 4, 5 & 6 will depend on what they find when surgery commences so at least get him to give a general answer.

I wouldn't ask the surgeon about long term treatment post op as most surgeons, , think that their handiwork has cured you. Sorry, couldn't resist adding that in! Mind you Matt's surgeon didn't think that way. Ask your GI about the ongoing treatment.

I would leave the...what can he do when post operatively until you see the surgeon a couple of days after surgery as it will depend on whether he has open or laparscopic surgery.

Plus have a look at this thread...

http://www.crohnsforum.com/showthread.php?t=27387

Hope that helps!

Dusty. xxx
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01-07-2012, 05:27 PM   #4
G's mom
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I knew the experts would reply.

Dexky, I too am glad you don't have experience in this area and I hope you never do.

Dusty, Thank you, thank you, thank you. That is exactly what I was looking for. Garrison has already started a list, he wants to ask the questions. I spoke with a friend who is a vascular surgeon and she added a few. Garrison will be thrilled to have such a complete list. That poor surgeon is not going to know what hit him. As for the GI dr., he already knows we are a pain!

Thanks again,

Vicky
01-07-2012, 05:33 PM   #5
DustyKat
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... Oh well, at least he will earn his money that day!

Oh yes, and one more...

If he has open surgery what method of closure do you use? (staples, continuous suture, glue etc)

Dusty.
01-07-2012, 05:40 PM   #6
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Oops and again...

This is for later...

Ask when he has his post op review, it is usually 6 weeks after discharge, and ask if a copy of his pathology report from the surgery can be sent to you prior to this so you can have a chance to look over it and then discuss at his review.
The surgeon would normally discuss it with you anyway but it's always helpful if you have had a chance to actually see it beforehand.
Also they generally take photos during surgery of the resected bowel so if you or your son are interested ask for copies of those.

Dusty.
01-07-2012, 07:00 PM   #7
kimmidwife
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Vicky,
Ask them if they can use an epidural for anesthesia (yes similar to what they use for childbirth) For my daughter it was the biggest blessing. SHe had almost no pain after the surgery. They kept the epidural in for 4 or 5 days (I can't remember exactly how many right now.) If the surgeon says no or is unsure ask to speak with the anesthesiologist.
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01-07-2012, 08:46 PM   #8
G's mom
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Thanks for all the suggestions. Garrison's notebook is getting full.

Take care,
Vicky
01-13-2012, 12:44 PM   #9
G's mom
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We have seen both the surgeon and GI dr and it looks likes surgery is our next step. Garrison has started back on solid foods and the next time he has pain we are to set a date for surgery. We really liked the surgeon, he answered all our questions and talked to Garrison as well as us. It looks like they will have to open him up again using the old incision line. The surgeon is hopeful that he won't have to take much out (about 10 cm) but kept reminding us that they don't know what they will find when they get in there. He thinks he will be able to reattach immediately, but would not guarantee it. (Which I found strangely reassuring.)
Now the problem is Garrison. Once he started eating he was feeling discomfort and said he could feel the food 'moving around in there.' That's when the GI said to go ahead and book the surgery. Now Garrison is feeling much better, no problems at all. But he wouldn't take a sandwich in his lunch, just soup, yogurt and peaches. Poor kid, I know he dreads the surgery, but knows he needs it. Do I go ahead and book it and take the decision out of his hands, or do I let him have a say?

Thanks for being my sounding board,
Vicky
01-13-2012, 12:47 PM   #10
Lisa
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The poor kid! I can fully understand him not wanting to go under the knife (again).....

What I would do, depending on the wait time for surgery bookings is to get a date booked now if the wait is going to be more than a week or so....that way, if/when he does have a problem you don't have to wait that extra time.....and then cancel if you need to?
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01-14-2012, 03:38 AM   #11
DustyKat
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Hey Vicky,

So good to hear the appointment went well! What a relief for you both.

I agree with paso, if it looks like there is a bit of a wait I would be booking now. I'd sit down with Garrison and explain that you can see he is still having difficulties and there is, for example, a 3 week wait. You feel it would be best to get him booked him now because the problem isn't going to get better in that time.

Good luck hun, I know how hard this is...

Dusty.
01-14-2012, 08:41 PM   #12
kimmidwife
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Vicky,
Good Luck. Just know we are thinking of you guys!
01-23-2012, 11:51 AM   #13
G's mom
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I posted an update on the first entry. Another question I had concerns school. Has anyone had a kid miss at least 3 weeks consecutively during the school year? I am trying to decide if we do homebound or not. Crohn's just keeps getting better and better. LOL
01-23-2012, 01:29 PM   #14
kimmidwife
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My daughter missed almost half the school year this year. If you can get homebound I recommend it. unfortunately Missouri does not offer it. We have met with her teachers and they are great. What they have learned to do from the psychologist who spoke with them is just give Caitlyn the "meat" with out the "potatoes" In other words scale everything down to the main points and get rid of the extra busy work. This has helped a lot.
01-23-2012, 02:10 PM   #15
DustyKat
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Hey Vicky,

I can't comment about the school side of things but the other...bearing in mind I don't know what Garrison has IYKWIM...

The life savers for my kids were:

Ear plugs
Ipod
mobile phone
laptop with DVD's and headphones
TV
magazines/books
loose fitting pyjamas, long boxer short style
slip on shoes/slippers
short visits from friends if possible (psychologically makes the world of difference!)

and don't forget all the chargers!

Dusty. xxx
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