Reversal post-op nightmare :(

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Punky44
Posts: 318
Joined: Mon Oct 01, 2018 4:29 pm

Reversal post-op nightmare :(

Postby Punky44 » Sun Jun 30, 2019 3:15 pm

Sorry to keep creating new threads here but I am freaking out.

My mom had her takedown on Friday and my biggest worry then was just having her get used to the new bowel and all of the issues I see people post about here, but we aren’t even there yet.

It’s been 48 hours with no bowel movement and instead we have dark red blood (increasing in quantity and now with clots) coming out the back and she has violently vomited twice on Saturday and has a distended stomach so they are saying she likely has an “ileus” and now can’t eat or drink anything and has an NG tube.

I am freaking the eff out because neither of these things seem like the normal stuff that should be happening. I am so scared because I don’t know how long either is supposed to last and what it means for her future recovery.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1
6/28/19 Reversal and port out

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

boxhill
Posts: 265
Joined: Fri Apr 06, 2018 11:40 am

Re: Reversal post-op nightmare :(

Postby boxhill » Sun Jun 30, 2019 3:37 pm

I have no useful information, but I'm sorry your mother and you are going through this.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
5mm liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LNs shrunk to normal, Liver node stable
6/28/19 Keytruda paused, predisone for joint pain

erins
Posts: 43
Joined: Sun May 27, 2018 12:41 pm

Re: Reversal post-op nightmare :(

Postby erins » Sun Jun 30, 2019 4:05 pm

I did a quick search on ileus, and there may be a few helpful tips in several of the threads:

search.php?keywords=Ileus&terms=all&author=&sc=1&sf=all&sr=posts&sk=t&sd=d&st=0&ch=300&t=0&submit=Search

Hope things get better fast for your mom (and you!)
38 yr old female
Rectal bleeding for 1 month—>
5/4/18 colonoscopy found mass in sigmoid colon
5/21/18 LAR
stage 2a, 0/17 lymph, clean margins
T3N0M0 G1
LVI neg, PNI neg, MSS
9/21/18 CEA 0.8
11/16/18 CEA 0.8 & CT clear
12/7/18 iron infusion
2/1/18 iron improved, CEA stable.

jep
Posts: 133
Joined: Sun Jun 11, 2017 7:45 pm

Re: Reversal post-op nightmare :(

Postby jep » Sun Jun 30, 2019 9:56 pm

I’m not an expert on any of this, but my husband did experience similar situations post surgery (vomiting, ileus, NG tube)...it was all very scary and unexpected at the time. He ended up in the hospital for 22 days and even went home on TPN (IV nutrition) for weeks....this entire situation scared the hell out of me, and I didn’t leave his side while he was in the hospital....if I did have to leave, I made sure someone else was going to be there with him.... continue to ask questions and if something doesn’t seem/feel right, ask about it and seek out another nurse or doc. At one point I had to call family members to come in and help me advocate because I just wasn’t thinking clearly....that was a big help...prayers for you all...
jep
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (May 2019)

jep
Posts: 133
Joined: Sun Jun 11, 2017 7:45 pm

Re: Reversal post-op nightmare :(

Postby jep » Sun Jun 30, 2019 10:00 pm

Also, they had my husband chewing lots of gum and walking as much as possible to help with the ileus ....I don’t have any experience with the blood or clots, but just keep asking questions until you feel comfortable with the responses...
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (May 2019)

del
Posts: 108
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Reversal post-op nightmare :(

Postby del » Mon Jul 01, 2019 8:11 am

So sorry to hear what your mother is going through! I had an ileus during my recovery - lots of nausea and vomiting green bile and had the NG put back in, but it passed after a few days and I was eating solids within a week. The surgery shocks your digestive system and can cause it to become temporarily paralysed. I was told to walk as much as possible to "wake up" my digestive system. Also, opioids can constipate you and make the problem worse, so only press the pain relief button when it's really needed. I think ileus is a reasonably common complication of this type of surgery so try not to worry too much, but if you are still concerned then keep pestering the doctors - that's what they are there for. Wishing your mother a speedy recovery!
Male, 33 @ dx, stage 1 RC (T1N0M0 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE

AmyG
Posts: 185
Joined: Tue Dec 25, 2018 8:08 pm

Re: Reversal post-op nightmare :(

Postby AmyG » Mon Jul 01, 2019 9:29 am

How's she doing today?
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection next step!

Punky44
Posts: 318
Joined: Mon Oct 01, 2018 4:29 pm

Re: Reversal post-op nightmare :(

Postby Punky44 » Mon Jul 01, 2019 9:39 am

Thank you all. I’m pretty sure I read through all 29 pages of ileus stories on this site yesterday.

No one seems to be overly concerned about either the bleeding (which they said could actually be some watery stool mixed with blood that makes it look like all blood) or the ileus condition at this point (Day 3). However, last night they said they would try a clamping test with the NG tube this morning and then they decided against it bc there’s still too much output. It’s just so frustrating and hard to watch her not even be able to take a sip of water.

I am hoping that we are looking at days and not weeks here bc I have no idea how we are going to do this. Plus I am 4 hours away and have just been driving back and forth bc I have two small kids at home.

Is having an ileus indicative of all the other function problems down the road or are those things independent?
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1
6/28/19 Reversal and port out

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

NHMike
Posts: 1997
Joined: Fri Jul 21, 2017 3:43 am

Re: Reversal post-op nightmare :(

Postby NHMike » Mon Jul 01, 2019 1:09 pm

I did not experience this but we had someone from either Australia or New Zealand that went through this for about three weeks and then things woke up. He had the NG tube in for a long time.
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; 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, 2/12 1.2
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
2/19: Clean CT

Punky44
Posts: 318
Joined: Mon Oct 01, 2018 4:29 pm

Re: Reversal post-op nightmare :(

Postby Punky44 » Fri Jul 05, 2019 9:08 am

So she ended up having the NG tube in for 48 hours, the second day being a 3 hours off 1 hour on continuous clamping trial. It seemed to be going well so they removed it on Tuesday and had her on all liquids. Then moved to small portions of food on Wednesday and was released yesterday (Thursday.)

She seems to be feeling good now but the new problem is she hasn’t had a bowel movement in 24 hours since leaving the hospital. I’m having her call this morning because that doesn’t sound right to me and I’m worried her ileus is back.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1
6/28/19 Reversal and port out

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

jep
Posts: 133
Joined: Sun Jun 11, 2017 7:45 pm

Re: Reversal post-op nightmare :(

Postby jep » Fri Jul 05, 2019 9:30 am

Good idea to call....I always call when I am worried...hopefully things get moving soon!
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (May 2019)

Punky44
Posts: 318
Joined: Mon Oct 01, 2018 4:29 pm

Re: Reversal post-op nightmare :(

Postby Punky44 » Sat Jul 06, 2019 10:21 am

Her care team wasn’t super concerned when she called yesterday but they said if it doesn’t happen in 48 hours to try some Miralax. So around hour 47 she was on her way from the store with the Miralax and guess what happened.

But yay at least she’s okay :)
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1
6/28/19 Reversal and port out

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

jep
Posts: 133
Joined: Sun Jun 11, 2017 7:45 pm

Re: Reversal post-op nightmare :(

Postby jep » Sat Jul 06, 2019 10:40 am

That’s great! Sounds like things are improving....hope the rest of recovery is smooth :wink:
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (May 2019)

NHMike
Posts: 1997
Joined: Fri Jul 21, 2017 3:43 am

Re: Reversal post-op nightmare :(

Postby NHMike » Sat Jul 06, 2019 5:14 pm

I’m glad that she’s through this setback.
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; 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, 2/12 1.2
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
2/19: Clean CT

DarknessEmbraced
Posts: 3301
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Reversal post-op nightmare :(

Postby DarknessEmbraced » Sun Jul 07, 2019 1:55 pm

I'm glad she's doing better! :)
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18


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