Back after 10 years... recovering from surgery for cecal bascule, with a question

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SoCalSaz
Posts: 157
Joined: Sat Oct 30, 2010 10:38 pm
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Back after 10 years... recovering from surgery for cecal bascule, with a question

Postby SoCalSaz » Fri Oct 28, 2022 6:43 pm

Hi all,

Hello! :) I'm back after being gone for quite some time, and even though I don't have cancer this time around, I thought of no better place to check in!

I was around these parts a little over 10 years ago with Stage 2 rectal cancer. Successfully treated, though a lingering side effect was a chronic fissure, for which I had successful surgery in 2013. Things returned pretty much to normal (well, a new normal!) after that, until earlier this year, when I started having bouts of severe, unexplained stomach pain. Eventually diagnosed with a cecal bascule, a rare type of bowel obstruction. Had surgery (ileocolectomy) 2 weeks ago today (Oct. 14), followed by a second procedure two days later when there were concerns about leakage and unexplained surges in my blood pressure. Came home a week ago today (Oct. 21).

For most of the past week, have been dealing with increasing stools -- by two or three days ago, up to about 15x per day, accompanied by serious butt burn and severe rectal cramping/spasms. My doctor gave the go-ahead to start on Imodium; the first day I took 2, which did very little, then yesterday I took 4 over the course of the day, as well as started with a first dose of fiber after breakfast to try to slow/bulk things up. Last night was in so much pain that I took an oxycodone for the first time in several days. And all of it worked... too well! Because while I finally slept through the night for the first time in 2 weeks, I haven't had a bowel movement for about 18 hours (except for a very small amount passed maybe about four hours ago).

So it seems I flipped myself from diarrhea to constipation, which I now recall was often how things went for me. Because of my past history with a fissure, I'm very worried about staying constipated too long and then getting another fissure from straining.... but I'm also not sure of the best/gentlest way to get things going again. My doctor has been in surgery all day, so while I can leave a message for him, I don't know if it will rise to the level of him getting back to me right away (and then it's the weekend). Do any of you knowledgeable people have some thoughts? A full glass of Metamucil or Citrucel? A little Miralax? It's been awhile since I've dealt with this!

Thanks!
53; Ileocolectomy for cecal bascule, 10/2022

dx RC 3/2010
T3N0M0
5 wks chemoradiation 5/2010
LAR 8/2010, ileo rev. 10/2010
2 rounds XELOX 4 rounds Xeloda 11/2010-4/2011
LIS surgery for fissure 2013

Thyroid cancer 1997; bleeding/connective tissue/autoimmune disorders

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Back after 10 years... recovering from surgery for cecal bascule, with a question

Postby prayingforccr » Fri Oct 28, 2022 11:44 pm

Of all the issues that had me seriously considering bringing a swift end to it all, the constipation issue was #1 for me.

I was constipated for over a year with scans always showing a “heavy stool burden” in my colon/rectum.

I asked EVERYBODY for help and always got the same pat, bullshit answer…..” Take a couple of stool softeners”.

Didn’t work!

I did a mix of yakima fruit paste: 1 pound prunes 4 ounces senna tea leaves* 1 pound raisins, pitted 1 cup brown sugar
1 pound figs 1 cup lemon juice

But ended up in the hospital as this severely dehydrated and stripped me of enzymes and any gut bacteria that remained after chemo.

I finally settled on this which I found at a University of Michigan page:

https://medicine.umich.edu/sites/defaul ... recipe.pdf

You can titrate it as needed, and it works for me taken before bedtime with 2 stool softeners and a large glass of water.

I really, really hope this helps.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 sbrt and immunotherapy failed
12/22 TIL Therapy

stu
Posts: 1590
Joined: Sat Aug 17, 2013 5:46 pm

Re: Back after 10 years... recovering from surgery for cecal bascule, with a question

Postby stu » Sun Oct 30, 2022 1:38 pm

I remember you !

Hope you got a call back from your surgeon.
It is a tricky one ! We had many problems this year with my mum and constipation from codeine. Too much pressing caused her blood vessels in her gullet to rupture . Four endoscopes later and she is making progress .
However she takes daily stool softeners now and has a supply of suppositories at home to prevent any constipation. We are having to go very easy on stepping up pain relief !
I have not updated the signature line yet as a recurrence at this stage has been such a nasty surprise .

It is always good to see a familiar name pop up .
Take care and it’s good you are being cautious.
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

roadrunner
Posts: 312
Joined: Sun Jan 12, 2020 8:46 pm

Re: Back after 10 years... recovering from surgery for cecal bascule, with a question

Postby roadrunner » Sun Oct 30, 2022 8:47 pm

Stu: I hope things are going ok with the challenges your family has been facing. I wish you all the best!
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Chest CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear
11/9/22: Rectal exam/scope Clear (2 yrs.)

stu
Posts: 1590
Joined: Sat Aug 17, 2013 5:46 pm

Re: Back after 10 years... recovering from surgery for cecal bascule, with a question

Postby stu » Mon Oct 31, 2022 7:52 am

Oh thank you roadrunner!
Dad passed peacefully last week . It’s been sad with mum so sick but we got her home and trying to build her back up .
Juggling pain killers and bowels is tricky indeed .

Missing dad so much. Caught up in the arrangements and endless notifications at the moment .
Grateful for the length of time we had with him and for having him in our lives .
Hope you are ok .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

roadrunner
Posts: 312
Joined: Sun Jan 12, 2020 8:46 pm

Re: Back after 10 years... recovering from surgery for cecal bascule, with a question

Postby roadrunner » Mon Oct 31, 2022 11:01 am

Very sorry to hear that, stu. It feels very unfair that all of this happened at once. My thoughts are with you and your family. I hope your mum is holding up ok and continues to improve. She remains an inspiration to me and (I’m sure) many others in the Stage 4 club, and I wish her a speedy recovery and many more years of defying those pesky odds.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Chest CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear
11/9/22: Rectal exam/scope Clear (2 yrs.)

Luna18
Posts: 20
Joined: Mon Aug 01, 2022 12:22 pm
Facebook Username: piglesias

Re: Back after 10 years... recovering from surgery for cecal bascule, with a question

Postby Luna18 » Mon Oct 31, 2022 11:22 am

stu wrote:Oh thank you roadrunner!
Dad passed peacefully last week . It’s been sad with mum so sick but we got her home and trying to build her back up .
Juggling pain killers and bowels is tricky indeed .

Missing dad so much. Caught up in the arrangements and endless notifications at the moment .
Grateful for the length of time we had with him and for having him in our lives .
Hope you are ok .
Stu


Dear Stu,
I am really sorry to hear about your dad. I hope your mum gets better soon. As roadrunner said she has been always an inspiration to me.
You and your family are in my thoughts.
Sister DX July 2017 age 44
T4N2M1 G2/G3
MSS
July 2017- Colostomy and primary tumor resection
Aug 2017 Chemo started - Folfox
Nov 2017- Liver resection, and colostomy reversal
March 2017- Chemo ended
November 2018- Recurrence in liver- Liver resection- No chemo
Aug 2019- Recurrence in liver and lungs
Sep 2019- Chemo started- Folfiri +Avastin
Dec 2019 PET showed no activity- fully response to chemo
March 2020 PET showed no activity
2021 NED
2022 May NED

stu
Posts: 1590
Joined: Sat Aug 17, 2013 5:46 pm

Re: Back after 10 years... recovering from surgery for cecal bascule, with a question

Postby stu » Mon Oct 31, 2022 1:01 pm

Oh thank you . I am going to share these posts with her .

That will give her such a boost . I am a bit pained for her as they had stopped scanning over covid and I do wonder if this could have been nipped in the Bud .
However she is where she is and focusing on regaining her strength and independence. I did hear her say she is up for some form of treatment if offered but not Oxaliplatin!

We have however booked two local holidays for next year . Pushing those boundaries and living a good life in spite of a difficult diagnosis and circumstances.
Hope you are both doing well .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

SoCalSaz
Posts: 157
Joined: Sat Oct 30, 2010 10:38 pm
Contact:

Re: Back after 10 years... recovering from surgery for cecal bascule, with a question

Postby SoCalSaz » Tue Nov 01, 2022 2:10 pm

thanks for the good thoughts, prayingforccr and stu! I send my best to you, too.

The constipation wound up resolving itself within a day or so, and now I'm back to trying to balance imodium/fiber to slow things down. Hemorrhoids have flared up something awful, but I saw my surgeon yesterday and he doesn't think that I'm dealing with a fissure. He said I'm doing pretty well, all things considered. I've only been home from the hospital for about 10 days, so I am trying to remind myself to be patient... though I am a little sad that I've had to concede that a couple of concerts I was planning to go to in the next few weeks are just not in the cards for me after all (there's no way things will be predictable enough that I'll feel comfortable attending).
53; Ileocolectomy for cecal bascule, 10/2022

dx RC 3/2010
T3N0M0
5 wks chemoradiation 5/2010
LAR 8/2010, ileo rev. 10/2010
2 rounds XELOX 4 rounds Xeloda 11/2010-4/2011
LIS surgery for fissure 2013

Thyroid cancer 1997; bleeding/connective tissue/autoimmune disorders

Claudine
Posts: 747
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Back after 10 years... recovering from surgery for cecal bascule, with a question

Postby Claudine » Wed Nov 02, 2022 1:16 pm

All my condolences, Stu... You've always been such a positive force here, now it's our turn to try and do our best to be present for you and your mom. She seems like a wonderful, strong person, I hope treatment goes well (my husband would agree on saying no to Oxaliplatin, that was a really rough one) and that you can enjoy your holidays together XXXXXX
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 vertebrae 04/18; left adrenal gland & small lung nodules 03/19;
rectum 02/22 (pT3 pN0 stage 2A); L3 vertebrae 09/22

Surgeries: intestinal resection 05/18 (no cancer - Crohn's); adrenalectomy 02/20;
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22;
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20;
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22

stu
Posts: 1590
Joined: Sat Aug 17, 2013 5:46 pm

Re: Back after 10 years... recovering from surgery for cecal bascule, with a question

Postby stu » Thu Nov 03, 2022 8:55 am

So sorry you can’t get to your concert . But I did get caught out once at a concert having not realised cough sweets are full of artificial sweeteners . Big mistake and never wanted home so much in all my life .
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

stu
Posts: 1590
Joined: Sat Aug 17, 2013 5:46 pm

Re: Back after 10 years... recovering from surgery for cecal bascule, with a question

Postby stu » Thu Nov 03, 2022 8:58 am

Thank you Claudine .
He lived a full and very happy life . That gives me great comfort . He had such a tough few weeks but I keep reminding myself that his health was good for the majority of his life .

I am seeing such a difference in mum . Getting a bit stronger and forging ahead getting nutrition sorted .
Still needs a lot of support but she is starting to look better .
Hope your husband is doing ok .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

DarknessEmbraced
Posts: 3731
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Back after 10 years... recovering from surgery for cecal bascule, with a question

Postby DarknessEmbraced » Sat Nov 05, 2022 7:00 am

I'm very sorry for the loss of your Dad and that your Mom is having such a hard time. *hugs* I hope things get better for the both of you soon.
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
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

stu
Posts: 1590
Joined: Sat Aug 17, 2013 5:46 pm

Re: Back after 10 years... recovering from surgery for cecal bascule, with a question

Postby stu » Wed Nov 09, 2022 5:12 am

Thank you .
We are holding up .
Mum is being incredibly strong .
Hope you are doing ok .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .


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