RC - I don’t understand why J Pouch

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SilverWedding
Posts: 71
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

RC - I don’t understand why J Pouch

Postby SilverWedding » Wed Sep 25, 2019 2:12 am

3am and Brain won’t turn off. So wrong!

I’m so confused. I take it that the LAR and Ileostomy and j-pouch surgery last week means DH has no colon. Why did we do that?! It was a low tumor, but why not resection colon? I read nothing but bad bad bad about life with a reversal using J pouch. Couldn’t a pouch have been made with remaining colon? I feel like I was so much wanting the cancer tumor and affected lymph nodes out that we neglected to understand options. Now too late. I’ve watched videos and read but still don’t understand why entire colon was taken! Couldn’t a pouch have been made using remaining part of colon?
DH, 56, Sigmoid & rectum
Adenocarcinoma 2cm
 G2: Moderately differentiated
T3N2aM0
Stage IIIb
LN 6/22
5/19 Baseline CEA value - 18.9
Lymphovascular invasion (LVI): present
Perineural invasion (PNI): not identified
Surgical margins: proximal -negative; distal - negative 1.5cm; circumferential - negative 1mm)
MSI status: Waiting‬
Lynch status: ?
KRAS/BRAF: ?
Open Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileo w/Appendectomy
Neo-adjuvant Xeloda/radiation
Adjuvant Chemo: to begin 11/19

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SilverWedding
Posts: 71
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Re: RC - I don’t understand why J Pouch

Postby SilverWedding » Wed Sep 25, 2019 2:52 am

Still worrying. Wouldn’t a colostomy have been an option??
DH, 56, Sigmoid & rectum
Adenocarcinoma 2cm
 G2: Moderately differentiated
T3N2aM0
Stage IIIb
LN 6/22
5/19 Baseline CEA value - 18.9
Lymphovascular invasion (LVI): present
Perineural invasion (PNI): not identified
Surgical margins: proximal -negative; distal - negative 1.5cm; circumferential - negative 1mm)
MSI status: Waiting‬
Lynch status: ?
KRAS/BRAF: ?
Open Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileo w/Appendectomy
Neo-adjuvant Xeloda/radiation
Adjuvant Chemo: to begin 11/19

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: RC - I don’t understand why J Pouch

Postby Rock_Robster » Wed Sep 25, 2019 3:26 am

Of course do clarify with the surgeon, but if he had a LAR then they normally would have taken most of his rectum plus a small amount of the sigmoid colon - he should still have the vast majority of his colon left. A J-pouch is created to serve the role of the rectum (storage of stool), which has been shown to reduce the risk of LAR syndrome.

Most folk would prefer to avoid a colostomy and see how they go with a LAR first - although it’s perhaps underappreciated LAR syndrome certainly doesn’t affect everyone, and not always severely. I believe a colostomy can always be done later if LAR syndrome occurs and isn’t tolerable.
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

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SilverWedding
Posts: 71
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Re: RC - I don’t understand why J Pouch

Postby SilverWedding » Wed Sep 25, 2019 4:41 pm

Thank you! I updated my signature now that I’ve seen paperwork. If appendix is gone, sounds like entire colon gone.

Does anyone ever have good results after Ileostomy reversal do you think?
DH, 56, Sigmoid & rectum
Adenocarcinoma 2cm
 G2: Moderately differentiated
T3N2aM0
Stage IIIb
LN 6/22
5/19 Baseline CEA value - 18.9
Lymphovascular invasion (LVI): present
Perineural invasion (PNI): not identified
Surgical margins: proximal -negative; distal - negative 1.5cm; circumferential - negative 1mm)
MSI status: Waiting‬
Lynch status: ?
KRAS/BRAF: ?
Open Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileo w/Appendectomy
Neo-adjuvant Xeloda/radiation
Adjuvant Chemo: to begin 11/19

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CRguy
Posts: 10231
Joined: Sun Feb 10, 2008 6:00 pm

Re: RC - I don’t understand why J Pouch

Postby CRguy » Thu Sep 26, 2019 11:20 pm

SilverWedding wrote: I take it that the LAR and Ileostomy and j-pouch surgery last week means DH has no colon....

If appendix is gone, sounds like entire colon gone.

I don't think either of these is correct. You should probably confirm exact details with the docs.

LAR = low anterior resection = the type of surgical approach to the area
j-pouch = creating a "storage" area as noted in the post above
Ileostomy = if a loop ileostomy = a temporary change to divert intestinal wastes to an external "pouch" appliance, higher in the GIT
>>>> SO the lower resected area and j-pouch lower down can heal
appendectomy = removal of the appendix = NOT the entire colon

SilverWedding wrote:Does anyone ever have good results after Ileostomy reversal do you think?

I had my reversal in Feb 2008 and it is now Sept 2019 ... you be the judge ! :shock: :mrgreen:

Best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Rob in PA
Posts: 2004
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: RC - I don’t understand why J Pouch

Postby Rob in PA » Fri Sep 27, 2019 3:38 pm

Ditto what CRguy said.

I had an LAR with colonic J-pouch and temporary loop ileostomy. Had my reversal done (although it failed the first time and had to have another ileostomy put in) and am going on 8 or 9 years with no ostomy. I have good days and bad days. I do have LAR syndrome and have discussed a permanent colostomy with my docs, but I'm not ready to commit to that just yet as that would have some potential risks with existing scar tissue from all of my surgeries.

I still have a good bit of my colon so, no, I do not believe your husbands entire colon is gone...otherwise they wouldn't call it a temporary ileostomy because there wouldn't be any "plumbing" left to connect to the J-pouch.

My J-pouch is made out of my colon. They prefer to make a J-pouch, butt during surgery there is always the potential that a J-pouch can't be done and they have to do a straight pouch....which doesn't have as much storage capacity.

Hope this helps.

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

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SilverWedding
Posts: 71
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Re: RC - I don’t understand why J Pouch

Postby SilverWedding » Sat Sep 28, 2019 11:59 pm

Thank you all - this is encouraging and informative. I will get my questions ready for this week’s meeting with the surgeon!

Cynthia
DH, 56, Sigmoid & rectum
Adenocarcinoma 2cm
 G2: Moderately differentiated
T3N2aM0
Stage IIIb
LN 6/22
5/19 Baseline CEA value - 18.9
Lymphovascular invasion (LVI): present
Perineural invasion (PNI): not identified
Surgical margins: proximal -negative; distal - negative 1.5cm; circumferential - negative 1mm)
MSI status: Waiting‬
Lynch status: ?
KRAS/BRAF: ?
Open Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileo w/Appendectomy
Neo-adjuvant Xeloda/radiation
Adjuvant Chemo: to begin 11/19

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: RC - I don’t understand why J Pouch

Postby Rock_Robster » Sun Sep 29, 2019 12:35 am

No worries at all, glad it’s of some help. Also just for interest, I asked for a J-pouch but during surgery there wasn’t enough room in my pelvis to create one, so I also have an end-to-end anastomosis. Apparently after the first year the outcomes are similar, but the first year is more pleasant with a J-pouch. So the fact that your husband could have one is a bonus!
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

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Jacques
Posts: 579
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: RC - I don’t understand why J Pouch

Postby Jacques » Sun Sep 29, 2019 12:26 pm

SilverWedding wrote:Thank you all - this is encouraging and informative. I will get my questions ready for this week’s meeting with the surgeon! Cynthia

For your meeting with the surgeon, I would suggest that you treat this meeting mainly an opportunity for obtaining "informational support", not so much for "emotional support." Just focus on the FACTS.

There are two areas of factual concern to focus on.

1. The FACTS about the diagnosis and staging. In other words, what were the scan reports, bio-marker tests, lab tests, etc., all saying about your husband's cancer?. What tests/procedures did they do, and what tests/procedures did they not bother doing at all for whatever reason? What was the full set of factual data points and results that they had at their disposal before they started any treatment procedure? For example did they do the highly recommended "MRI with contrast" procedure, or did they just decide to forget about it? You need to know all of the FACTS.

2. The FACTS about the full range of treatments and procedures available to treat such a cancer, and the FACTS about which surgical procedures the surgeon finally decided on doing, and why.

One way to approach the latter issue is to focus on the Medicare CPT billing codes for the various kinds of colorectal surgeries available. When a surgeon files his official report about the surgery, he must surely be required, for billing purposes, to list each and every surgical procedure that he performed. The insurance company will require this for sure. The surgeon has this information, so you can ask for the information, and ask for explanations as well. And be sure to pay attention and write down everything, because you might not get another chance to get this information.

Here is a link to download a PDF with the different codes for various types of available surgeries.

2019 COLORECTAL SURGERY MEDICARE REIMBURSEMENT CODING GUIDE
https://www.medtronic.com/content/dam/covidien/library/us/en/services-support/reimbursement/reimbursement-coding-guide-medicare-colorectal-surgery.pdf

CPT CODES FOR VARIOUS APPENDECTOMIES
https://www.aapc.com/blog/36081-reporting-appendix-procedures/


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