Ileostomy?

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SGNYC
Posts: 9
Joined: Mon Sep 03, 2018 9:20 pm

Ileostomy?

Postby SGNYC » Mon Oct 01, 2018 10:07 am

Hi,

Somewhat new poster - first time topics starter!
DH diagnosed Stage IV early July 2018. He has had great response to Folfox which we're incredibly grateful for and was told at outset (pre-chemo) they view as curable bc tho mets, only one each in liver and lung and they were small/resectable day 1, He did have the Neo-adjuvant Folfox treatment (5 rounds). Colon tumor and mets are about 70% smaller than at diagnosis and CEA dropped about 70% as well. He will have another 7 rounds post surgery.

On to the question:

My husband is having colon/liver/lung resection at MSK on Wednesday and was given choice of whether to do temp stoma which he opted for bc 1) no potential delay in mopup chemo and 2)nearly 100% reversal v potential reversal problem is emergency stoma needed due to leak etc.

My question (and I have a call into doc but this board is so knowledgeable I wanted to get your info!) is that his resection is at that recto sigmoid area but he is getting a temp ileostomy (rightside, and this is small intestine)? This seems like two incisions instead of one and so I'm seeking some understanding into this process.

Thank you!

KimT
Posts: 596
Joined: Sat Feb 20, 2010 8:53 pm

Re: Ileostomy?

Postby KimT » Mon Oct 01, 2018 12:10 pm

There are going to be two incisions with this surgery no matter where the cancer is located. They will do one to remove the cancer and a second one to bring the small intestine to the surface and outside the body.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

SGNYC
Posts: 9
Joined: Mon Sep 03, 2018 9:20 pm

Re: Ileostomy?

Postby SGNYC » Mon Oct 01, 2018 12:31 pm

Hi - thanks for the quick reply. So the colon is just sort of disconnected entirely then while it heals?

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Ileostomy?

Postby O Stoma Mia » Mon Oct 01, 2018 1:44 pm

SGNYC wrote:...
My question (and I have a call into doc but this board is so knowledgeable I wanted to get your info!) is that his resection is at that recto sigmoid area but he is getting a temp ileostomy (rightside, and this is small intestine)? This seems like two incisions instead of one and so I'm seeking some understanding into this process.

Thank you!

Yes, there will be at least 2 incisions, but if you say they are also going to deal with the liver and lung mets at the same time, then this sounds like a much more extensive surgical procedure. Are you sure that they are going to do all 4 of these procedures in the same operation (i.e., rectosigmoid resection, liver resection, lung resection, ileostomy)?

It also seems to me that there will have to be a delay in starting the mop-up chemo because they will first need to give the body some time to recover from major surgery before starting any further treatment regimen. That's just my opinion.

SGNYC
Posts: 9
Joined: Mon Sep 03, 2018 9:20 pm

Re: Ileostomy?

Postby SGNYC » Mon Oct 01, 2018 7:11 pm

Yes - he is having all three (colon, liver and lung). Liver resection is under 10% and lung met is 5mm and will be removed via Vats wedge resection.

Ileostomy was his choice but oncology was happy he made that choice because no delay in mop-up which will resume ~4 weeks after surgery.

It's a lot but I take confidence in MSK's opinion. Thoracic and Liver deferred to our amazing colorectal surgeon and my husband is otherwise young and very healthy (he goes to spin class on his off weeks!), so I think they feel able to knock it out.

Gravelyguy
Posts: 39
Joined: Thu Jul 05, 2018 6:03 pm

Re: Ileostomy?

Postby Gravelyguy » Mon Oct 01, 2018 7:18 pm

I had rectal and liver done at the same time with an ileostomy. I had a long incision from sternum south and the a smaller incision on my lower right abdomen. I recovered fairly quickly but did wait 6 weeks before resuming chemo.

I now can win the longest scar contest in just about any setting but it was worth it!

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me

SGNYC
Posts: 9
Joined: Mon Sep 03, 2018 9:20 pm

Re: Ileostomy?

Postby SGNYC » Mon Oct 01, 2018 9:25 pm

Definitely worth it! So thrilled to see you're NED - helps us be courageous in this fight!

Thanks so much to all for The quick replies, detailed information and encouragement. Great community and I appreciate it so much.

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

Re: Ileostomy?

Postby NHMike » Tue Oct 02, 2018 7:24 am

There's a moderate amount of adjustment to living with an ileostomy but it makes life easier with adjuvant chemo.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

rtcasper
Posts: 35
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: Ileostomy?

Postby rtcasper » Tue Oct 02, 2018 11:56 am

Hi SGNYC, yes, the colon is basically "offline"to heal after the ileostomy. Think of the temp loop ileostomy as a garden hose that has been sliced almost halfway through, then folded over and pulled out your abdominal wall. So, the stoma will be 1 hole, but small intestine that is pulled through will actually have 2 holes, but only 1 will be excreting stool, the other hole will be still be attached to the large intestine/colon, but obviously nothing passes through, as this gives the surgical repairs a chance to heal. Later on, after any needed treatments arecomplete, the second surgery, or reversal, is done and is generally a much quicker surgery. Issues with the reversal tend to be getting the system working all together again, as it's been out of commission for some time, basically relearning/reestablishing bowel function again. Hope this helps a little and good luck to you! Keep us all posted through the journey.
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
5 days radiation, surgery 2 weeks later, followed by chemo
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-stage T1N0M0

SGNYC
Posts: 9
Joined: Mon Sep 03, 2018 9:20 pm

Re: Ileostomy?

Postby SGNYC » Tue Oct 09, 2018 9:28 pm

Hi and thanks for all replies!

Following up to provide update

My DH went thru surgery to resect colon/lung/liver and has been discharged from the hospital. It seems to have gone very well from what surgeons have told us and he was discharged a day early, as he has recovered very quickly. We wait for pathology, which is stressful, but the best news was that liver met looked like it was totally gone from 5 Folfox rounds and just scar tissue....colon resection was likely almost entirely scar tissue as well. Hoping for clear nodes (largest in pre-surgery contrast MRI was 4mm) so that no need to step up mop-up treatments to anything more than the planned Folfox.

DH did get the loop ileostomy which has been an adjustment but there is mental relief in knowing no delays in mop-up and colon has time to really heal.

sethshae
Posts: 1
Joined: Sun Oct 14, 2018 10:14 am
Facebook Username: Josh Little

Re: Ileostomy?

Postby sethshae » Sun Oct 14, 2018 10:39 am

This is my first time actually joining any kind of forum, so I hope I'm posting correctly.

I just wanted to let everyone know how much I appreciate them sharing their experiences. I was recently diagnosed with Ulcerative Colitis, Pyoderma Gangrenosum, and Psoriatic arthritis. My GI told me I may want to seriously consider getting a Ileostomy due to the fact that that I've become resistant to 2 types of medication and the severity of my UC. I really have no idea what surgery would mean for me, what kind of quality of life I could expect, etc. This forum answered a lot of my questions and what I could possibly expect. I'm going to try one more medication (Remicaid), but if I become resistant to it as well I'm not wasting any more time. I'll get the surgery.

Thank you again for this forum and everyone's posts. It helped a lot and made me more comfortable with the idea of surgery.

Capercrohnieileo
Posts: 17
Joined: Wed Apr 11, 2018 12:42 pm
Facebook Username: Jayne Olson
Location: NS, Canada

Re: Ileostomy?

Postby Capercrohnieileo » Sun Oct 14, 2018 6:45 pm

@sethshae

I had a total proctocolectomy with end ileostomy in May 2017 because of Crohn's. I am not drug resistant but I had nasty nasty fistulas that Remicade didn't heal (only drug that works for fistulas). If I could go back in time I would have had it done right at diagnosis. I was too scared. Remicade did help the Crohn's itself though ot took 8 months to see a difference. The surgery is usually done in 2 or 3 (if you decide on j pouch but I didn't have that option because they don't do them for Crohn's) but because of how bad my fistulas he did it in one long surgery. Recovery was painful but my quality of life Crohn's wise is so so much better. I love not being tied to the bathroom.
Severe Crohn's colitis jan 2015
Developed fistulas feb 2015
Open total proctocolectomy with end ileostomy (bye bye colon and rectum hello barbie butt) because of fistulas, Crohn's and crc risk May 5, 2017
Gastroduodenal Crohn's Nov 1, 2017
Severe Gastroparesis (delayed gastric emptying) Nov 9, 2017 GES showed 70 % remaining in stomach at 4 hrs. Normal is <10%
Jejunostomy (J tube) surgery sometime in Oct 2018


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