It’s today (with update) Take down scheduled

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tminor5
Posts: 40
Joined: Wed Jun 13, 2018 11:46 am

It’s today (with update) Take down scheduled

Postby tminor5 » Thu Mar 21, 2019 12:59 pm

My husbands take down is scheduled for next Friday March 29. A little nervous. But I hope it will all go good. He is a bit more nervous but ready to start the next chapter. He then has his scan on June 10. Then he gets to heal and have a hip replacement in July sometime.
DH DX at 46  pT4a,pN1a CEA 1.6
5/25/18 ER bowel obstruction
5/26/18 Colonoscopy couldn't insert stint
5/27/18 Surgery removed 18", not seen on any near by organs, colostomy due to infection
6/25/18 1st FOLFOX (12 cycles)
11/26/18 Last chemo
12/17/18 Colonoscopy clear
3/29/19 Colostomy takedown (temp illeo because of scaring)
5/23/19 Scan (sm node lung believe scar tissue)
6/20-7/25-8/9-8/20-9/5-9/26 Colon stretch for illeo takedown
10/3/19 Scan (node same)
10/25/19 Ileo takedown

tminor5
Posts: 40
Joined: Wed Jun 13, 2018 11:46 am

Re: It’s today (with update) Take down scheduled

Postby tminor5 » Fri Mar 29, 2019 1:20 pm

He’s been back there for almost 3 hours. They found a lot of adhesions. So the take down hasn’t even started yet (as of 50 min ago). They say he’s doing great. I’m just being a worry wart.
DH DX at 46  pT4a,pN1a CEA 1.6
5/25/18 ER bowel obstruction
5/26/18 Colonoscopy couldn't insert stint
5/27/18 Surgery removed 18", not seen on any near by organs, colostomy due to infection
6/25/18 1st FOLFOX (12 cycles)
11/26/18 Last chemo
12/17/18 Colonoscopy clear
3/29/19 Colostomy takedown (temp illeo because of scaring)
5/23/19 Scan (sm node lung believe scar tissue)
6/20-7/25-8/9-8/20-9/5-9/26 Colon stretch for illeo takedown
10/3/19 Scan (node same)
10/25/19 Ileo takedown

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: It’s today (with update) Take down scheduled

Postby CRguy » Fri Mar 29, 2019 3:59 pm

Sending POSI VIBES ++++++ to him

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

tminor5
Posts: 40
Joined: Wed Jun 13, 2018 11:46 am

Re: It’s today (with update) Take down scheduled

Postby tminor5 » Fri Mar 29, 2019 4:26 pm

Thank you. I’ll let him know when I finally get to see him. He’s still back there it’s been 6 hours now. I know they started with the robot but said they had to open him up a bit more.
DH DX at 46  pT4a,pN1a CEA 1.6
5/25/18 ER bowel obstruction
5/26/18 Colonoscopy couldn't insert stint
5/27/18 Surgery removed 18", not seen on any near by organs, colostomy due to infection
6/25/18 1st FOLFOX (12 cycles)
11/26/18 Last chemo
12/17/18 Colonoscopy clear
3/29/19 Colostomy takedown (temp illeo because of scaring)
5/23/19 Scan (sm node lung believe scar tissue)
6/20-7/25-8/9-8/20-9/5-9/26 Colon stretch for illeo takedown
10/3/19 Scan (node same)
10/25/19 Ileo takedown

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: It’s today (with update) Take down scheduled

Postby Punky44 » Fri Mar 29, 2019 6:44 pm

Any update? Thinking of you! I was recently in this position waiting 6 hours during my mom’s surgery so I can relate to the anxiety.
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

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

tminor5
Posts: 40
Joined: Wed Jun 13, 2018 11:46 am

Re: It’s today (with update) Take down scheduled

Postby tminor5 » Fri Mar 29, 2019 6:49 pm

Not what we expected. There was so much scar tissue and his rectum was stuck to his pelvis. When the dr was done with that he sent a “staple” up there to make sure it was ok. It didn’t come out the other side. So they had to open him up more. They did hook him up and the leak test passed. BUT he now has a illostomy so the other can heal. Because he said if he leaks with the reattach he will have a permanent colostomy. We did well with the colostomy hopefully he will do well with this. He said in about 8 weeks he will get this one reversed. He is still in recovery. He’s gonna be devastated.
DH DX at 46  pT4a,pN1a CEA 1.6
5/25/18 ER bowel obstruction
5/26/18 Colonoscopy couldn't insert stint
5/27/18 Surgery removed 18", not seen on any near by organs, colostomy due to infection
6/25/18 1st FOLFOX (12 cycles)
11/26/18 Last chemo
12/17/18 Colonoscopy clear
3/29/19 Colostomy takedown (temp illeo because of scaring)
5/23/19 Scan (sm node lung believe scar tissue)
6/20-7/25-8/9-8/20-9/5-9/26 Colon stretch for illeo takedown
10/3/19 Scan (node same)
10/25/19 Ileo takedown

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: It’s today (with update) Take down scheduled

Postby Punky44 » Fri Mar 29, 2019 7:49 pm

Oh no I’m sorry it didn’t go smoothly and that you have to deal with another reversal in the future. Glad it didn’t end in a permanent colostomy though.
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

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

tminor5
Posts: 40
Joined: Wed Jun 13, 2018 11:46 am

Re: It’s today (with update) Take down scheduled

Postby tminor5 » Fri Mar 29, 2019 10:36 pm

He was pretty out of it when we finally got to see him. It was also pretty late. 7 hour surgery plus being there early and then recovery. He did ask about his surgery. When I told him about the new bag he asked so it can’t be fixed. So he was atleast glad when I told him this is just 8 weeks enough time for the other one to heal so it shouldn’t leak and it will take. But now he will have 3 surgeries this year. He was going to get his hip replaced later this summer.
DH DX at 46  pT4a,pN1a CEA 1.6
5/25/18 ER bowel obstruction
5/26/18 Colonoscopy couldn't insert stint
5/27/18 Surgery removed 18", not seen on any near by organs, colostomy due to infection
6/25/18 1st FOLFOX (12 cycles)
11/26/18 Last chemo
12/17/18 Colonoscopy clear
3/29/19 Colostomy takedown (temp illeo because of scaring)
5/23/19 Scan (sm node lung believe scar tissue)
6/20-7/25-8/9-8/20-9/5-9/26 Colon stretch for illeo takedown
10/3/19 Scan (node same)
10/25/19 Ileo takedown

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: It’s today (with update) Take down scheduled

Postby boxhill » Sat Mar 30, 2019 10:25 am

Don't despair on the ultimate fix yet.

I have a very good friend who had a really dreadful case of diverticulitis, was in the ICU on a respirator for weeks, septic, multiple surgeries, came very, very close to dying. Was ultimately released from the hospital with an ostomy. After several months, that one was replaced with another in order to take pressure off the first. Her innards were a mess. Significant amounts of intestine removed, tons of scar tissue, much damaged tissue. Only one surgeon in our area would agree to try to reverse the ostomy. It was touch and go, but she succeeded.

Your husband must be very, very disappointed, but I hope things work out for him in the long run.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

tminor5
Posts: 40
Joined: Wed Jun 13, 2018 11:46 am

Re: It’s today (with update) Take down scheduled

Postby tminor5 » Fri Jun 14, 2019 3:08 pm

Thought I’d post an update. Roger had a barium test done to test for leaking. The barium didn’t go up far enough. So we got to visit the surgeon earlier this week. He said he could “see” a pin hole opening so he was sending us back for another barium type test. He had us go with his cell number so he could talk to the tech about exactly what he wanted done. In the mean time he said we should try to move up my husbands hip replacement, since this was gonna take a bit. So we did get that moved up to June 27. The surgeon office finally called today and said yes they can see everything is connected correctly and no leaks so to the gastroenterologist we will go to put a ballon in and open that pin hole up. That is being done next Thursday June 20. So he’s slowly getting there. We are just going with. We’d rather go slow and make sure no problems then rush it and have issues.
DH DX at 46  pT4a,pN1a CEA 1.6
5/25/18 ER bowel obstruction
5/26/18 Colonoscopy couldn't insert stint
5/27/18 Surgery removed 18", not seen on any near by organs, colostomy due to infection
6/25/18 1st FOLFOX (12 cycles)
11/26/18 Last chemo
12/17/18 Colonoscopy clear
3/29/19 Colostomy takedown (temp illeo because of scaring)
5/23/19 Scan (sm node lung believe scar tissue)
6/20-7/25-8/9-8/20-9/5-9/26 Colon stretch for illeo takedown
10/3/19 Scan (node same)
10/25/19 Ileo takedown

tminor5
Posts: 40
Joined: Wed Jun 13, 2018 11:46 am

Re: It’s today (with update) Take down scheduled

Postby tminor5 » Wed Aug 21, 2019 10:27 pm

Thought I’d post an update. When he went in June 20 we found out his opening was only 1 mm. So very tiny. They opened it up to about 11 mm. We were told the average diameter of the colon is 30mm. So the gastroenterologist thought we might have to go to a specialist. He even talked to one about his case. He told the gastroenterologist what to do for the next procedure. Roger had his hip replacement on June 27 (he is doing awesome with that). So we had to wait about a month to go in the next time. Because it is his left hip and that is the side you lay on we had to be very careful, he did get permission from the ortho to continue with these procedures. He went back on July 25. It had shrunk to 6 mm but he was able to stretch it to 13mm. At this point he could get the scope past the connection. Low and behold his colon diameter is only 15 mm. So we shouldn’t need a specialist, we just need to get the stretching to stay open. He’s been going back every 2 weeks for more stretching. They were hoping to put a stint in to help keep it open. But his staples seem to be making his colon shrink back down (causing scar tissue) and they were worried a stint would get stuck in them and rip his colon. So they decided it was ok to pull some of them out. He goes back again in 2 weeks. Hopefully it will not have shrunk back down. But man I am so thankful the surgeon was worried this would happen with my husband and had given him the temp illeostomy while this one was healing. On we go.
DH DX at 46  pT4a,pN1a CEA 1.6
5/25/18 ER bowel obstruction
5/26/18 Colonoscopy couldn't insert stint
5/27/18 Surgery removed 18", not seen on any near by organs, colostomy due to infection
6/25/18 1st FOLFOX (12 cycles)
11/26/18 Last chemo
12/17/18 Colonoscopy clear
3/29/19 Colostomy takedown (temp illeo because of scaring)
5/23/19 Scan (sm node lung believe scar tissue)
6/20-7/25-8/9-8/20-9/5-9/26 Colon stretch for illeo takedown
10/3/19 Scan (node same)
10/25/19 Ileo takedown


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