Reoccuring Digestive issues

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Hey Daddy
Posts: 37
Joined: Wed Nov 30, 2016 8:42 am

Reoccuring Digestive issues

Postby Hey Daddy » Thu Dec 07, 2017 6:14 pm

My son finished chemo last March and has been NED since. He has, however, had reoccurring bouts of severe abdominal pain and vomiting. During these bouts, which typically have lasted 2-4 days, he cannot keep anything down and throws up a neon-green bile. The first of these episodes happened 2 months post-chemo and the doctors (I believe unnecessarily) removed his appendix. The whole episode had him in the hospital for 2 weeks because he had an ileus post-surgery that took a long time to resolve. Since then he has had numerous episodes including two that landed him back in the hospital. Colonoscopy, CT scans, Endoscopy; none of these have pin-pointed a problem. He has lost quite a bit of weight as he has become scared to eat anything that might cause him harm. He has been staying away from gluten and heavy, rich or spicy foods and has been eating mainly veggies, fruits, soft bland foods and smoothies.

Has anyone out there had a similar experience? If so, how have you handled it?

Thanks,
Joe
DS dx CC Stage IIB (T4N0M0) 3Aug16, 21 yr old
poorly differentiated, lymphovascular and perineural invasion
CEA 29
Colon resection 4Aug16
CEA 2.5
Genetics testing negative
6 mo FOLFOX Sep16 - Mar17
CT Scan Mar17 clear
Colonoscopy Apr17 clear
CEA 1.8
NED
Emergency appendectomy Jun17
Adhesion surgery to clear small bowel obstruction Dec 17

Utwo
Posts: 270
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Reoccuring Digestive issues

Postby Utwo » Thu Dec 07, 2017 6:33 pm

Does he keep a food journal?
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

Hey Daddy
Posts: 37
Joined: Wed Nov 30, 2016 8:42 am

Re: Reoccuring Digestive issues

Postby Hey Daddy » Thu Dec 07, 2017 6:41 pm

Up until now we have just been going on memory. Earlier today we discussed the need to write it all down. I am going to try my best to help remind him until it becomes a habit.

Thank you
DS dx CC Stage IIB (T4N0M0) 3Aug16, 21 yr old
poorly differentiated, lymphovascular and perineural invasion
CEA 29
Colon resection 4Aug16
CEA 2.5
Genetics testing negative
6 mo FOLFOX Sep16 - Mar17
CT Scan Mar17 clear
Colonoscopy Apr17 clear
CEA 1.8
NED
Emergency appendectomy Jun17
Adhesion surgery to clear small bowel obstruction Dec 17

lauragb
Posts: 899
Joined: Sun Aug 28, 2011 5:25 pm

Re: Reoccuring Digestive issues

Postby lauragb » Thu Dec 07, 2017 7:30 pm

Has he had a CT scan while he is having the symptoms? It sure sounds like he is having bowel obstructions, those are the symptoms. The pain comes in waves, often across the diaphragm area. Does he have BMs during these episodes?
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

kiwiinoz
Posts: 1154
Joined: Thu Jan 03, 2013 11:44 pm

Re: Reoccuring Digestive issues

Postby kiwiinoz » Thu Dec 07, 2017 7:38 pm

Hey Joe,

Just like Laura suggests it sounds possibly like adhesions or something causing a blockage. I have had 5 years of similar issues, although not quite as severe.
Scans don't really show adhesions, and every time I had a scan I would simply be told I had severe fecal impaction. He could try a diet with a lot more laxative food, or even better, talk to his surgeon and ask about what is causing the issue and how to address it?

Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

Hey Daddy
Posts: 37
Joined: Wed Nov 30, 2016 8:42 am

Re: Reoccuring Digestive issues

Postby Hey Daddy » Thu Dec 07, 2017 8:51 pm

Thank you for the responses. He had a CT scan and x-ray the last time he had to go to the hospital. It only showed a lot of fecal matter. He does not have BMs (or very little) during these episodes. They kept him on fluids and pain meds for two days until things started to pass again. He stayed good for about a month and then it happened again. He was throwing up all night three nights ago and had an endoscopy yesterday. The doctor did not see anything negative in the upper tract but did see a small inflammation in the stomach. He took a sample to biopsy and will meet with us again next week, but it did not sound hopeful that this will reveal a solution to the main problem.
DS dx CC Stage IIB (T4N0M0) 3Aug16, 21 yr old
poorly differentiated, lymphovascular and perineural invasion
CEA 29
Colon resection 4Aug16
CEA 2.5
Genetics testing negative
6 mo FOLFOX Sep16 - Mar17
CT Scan Mar17 clear
Colonoscopy Apr17 clear
CEA 1.8
NED
Emergency appendectomy Jun17
Adhesion surgery to clear small bowel obstruction Dec 17

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Reoccuring Digestive issues

Postby MissMolly » Thu Dec 07, 2017 9:16 pm

Hey Daddy:
Your son’s case sounds similar to my own situation of recent. I do not have colon cancer but have had extensive abdominal surgeries due to a severe perforation.

I have been and out of the hospital 4 times in the last three months with unrelenting bouts of vomiting and severe abdominal pain. The last hospitalization I underwent a laparotomy for lysis of adhesions.

It sure sounds as though your son is dealing with scar tissue/adhesions that is tethering itself to the small intestine, causing a transient “closed loop” partial bowel obstruction.

I am now on a strict protocol of MiraLax and magnesium citrate, and it is definitely helping. The intent is draw water into the digestive tract to keep fecal output highly liquid (I have a permanent ileoatomy) so that fecal matter does not get back-logged due to intestinal narrowing or kinks due to scar tissue/adhesions. I monitor what I eat closely and eat small portion sizes. I monitor my Ostomy output and when I sense it is lessening I act proactively and increase the intake of MiraLax and/or magnesium citrate.

I would suggest that your son try adding in MiraLax daily (or magnesium citrate). If he has scar tissue that is tethering the small intestine, it will serve him well to keep the consistency of his bowel movements loose/soft/watery.

Yoga postures and stretches can also be helpful. They act to elongate and rotate the torso/pelvis, acting as a form of intestinal massage.

Magnesium citrate is available as a powder in a homeopathic product called “Natural Calm” by Vitality Holistics. It is available at Whole Foods and Amazon.

Best wishes for renewed well-being for your son,
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Hey Daddy
Posts: 37
Joined: Wed Nov 30, 2016 8:42 am

Re: Reoccuring Digestive issues

Postby Hey Daddy » Fri Dec 08, 2017 10:03 pm

Thank you, Karen. Neither the endoscopy nor the colonoscopy showed adhesions, however, the latter was performed right after chemo and before these problems started happening so we might have to repeat. The symptoms do seem to be the same. The gastro called this morning to say that he has scheduled another CT scan next week. I will check out the magnesium citrate. His oncologist recommended that he cut down on his running thinking maybe that degree of jostling is exacerbating his problems so the yoga/stretching may be a kinder, gentler alternative at least until we get this under control.
DS dx CC Stage IIB (T4N0M0) 3Aug16, 21 yr old
poorly differentiated, lymphovascular and perineural invasion
CEA 29
Colon resection 4Aug16
CEA 2.5
Genetics testing negative
6 mo FOLFOX Sep16 - Mar17
CT Scan Mar17 clear
Colonoscopy Apr17 clear
CEA 1.8
NED
Emergency appendectomy Jun17
Adhesion surgery to clear small bowel obstruction Dec 17

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henry123
Posts: 214
Joined: Sun Oct 08, 2017 3:25 am

Re: Reoccuring Digestive issues

Postby henry123 » Sun Dec 10, 2017 11:13 am

Have you considered dairy free vegan diet?
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
6/19 .9 CT clear
1/20 NED Opdivo stop

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mypinkheaven
Posts: 459
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Facebook Username: Sally Cunningham
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Re: Reoccuring Digestive issues

Postby mypinkheaven » Sun Dec 10, 2017 1:08 pm

I've had 3 abdominal surgeries plus pelvic radiation and have dealt with digestive issues daily for 5 years. Like Miss Molly, I would recommend Miralax. I take it once every day. I also have to stay way from too many vegetables. Well cooked ones are OK. The low fiber diet is easier to digest and the Miralax keeps things moving. This regiment has helped me the most and I really hope this may help your son.
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

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CRguy
Posts: 10264
Joined: Sun Feb 10, 2008 6:00 pm

Re: Reoccuring Digestive issues

Postby CRguy » Sun Dec 10, 2017 1:18 pm

Another option could be asking your docs about trying an IBS diet ( low FODMAP )
FODMAPs : They are a type of carb. But this is not your typical low-carb diet.
The diet only limits carbs that are "fermentable oligo-, di-, monosaccharides and polyols."

WebMD article
Google search = ibs diet

Wifey is currently testing this out along with a trial of Align probiotics, so we shall see ! ... BUTT she is not a post resection patient.
...... also be aware of this disclaimer which not all probiotic sources will acknowlegde :
Still, probiotics may be dangerous for people with weakened immune systems or serious illnesses. One study found that patients with severe pancreatitis who were given probiotics had a higher risk of death.
Reference: http://www.webmd.com/digestive-disorder ... probiotics

We are also using a doctor recc'd Ultra-Purified Peppermint oil ( IBgard )
YMMV so keep the docs in the loop !

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

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reoccuring Digestive issues

Postby susie0915 » Sun Dec 10, 2017 1:53 pm

I met with a dietician and she recommended that low FODMAP diet. It is restrictive no gluten, limited dairy, no high fructose corn syrup. Once you follow for awhile you can slowly add foods back into your diet one at a time to see what may give you problems. It did help me figure out what foods I should avoid.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

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CRguy
Posts: 10264
Joined: Sun Feb 10, 2008 6:00 pm

Re: Reoccuring Digestive issues

Postby CRguy » Sun Dec 10, 2017 3:22 pm

Very good point I think, susie

An elimination diet and a good food diary will help to identify a lot of issues...
especially for us semi-colons :shock:

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

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Reoccuring Digestive issues

Postby MissMolly » Sun Dec 10, 2017 4:45 pm

Hey Daddy:
Adhesions (scar tissue) is a common finding after any abdominal surgery.

Adhesions/scar tissue is not visualized or seen on imaging studies (not by x-ray and not by CT scan and not by MRI), unless there is an acute kink or blockage which causes dilation of the trapped or tethered segment of intestine proximal to the adhering scar tissue. Scar tissue will not be seen in endoscopy or colonoscopy as it is scar tissue within the abdominal cavity.

I was hospitalized 4 times over a 3 month period (this past August - October) for recurrent non-relenting vomiting and severe abdominal pain. CT scans showed retained fecal matter and some small intestine dilation in the same area with each episode. I was given IV fluids, narcotics for pain, and gastrograffin (a nuclear-powered laxative) via an NG tube. Each of 3 episodes cleared with conservative management. The 4 th episode was recalcitrant. After 6 days with an NG tube the surgeon decided it was prudent to snip away at the adhesions (called lysis of adhesions).

Adhesions cause partial small bowel obstructions by tethering to a portion of the small intestine and “kinking” the segment of intestine - like a kinked garden hose. Adhesions tether to other organs, to other portions of the small intestine, and to the abdominal wall.

The small intestine is prone to partial (or full/complete) small bowel obstructions due to the nature of the small intestine. The small intestine is constantly slithering and gliding like a snake under the moist layer of fat called the omentum. It is the constant motility if the small intestine that makes the effects of a kink due to adhesions painful and symptomatic. Nausea/vomiting; little to no fecal output, or only liquid/diarrhea output that is able to pass through the narrowing; severe pain that typically comes as waves. The large intestine, given its larger diameter and lacsidasical pariataltic waves is less prone to obstruction symptoms.

I am surprised that your son’s medical team is not considering the possible role of adhesions/scar tissue. My surgeon told me that the risk of obstruction is greatest during the first year after surgery. This was my second bout of adhesions requiring surgical decompression. Surgery is to be avoided when possible because surgery will likely cause additional adhesions to develop.

The role of MiraLax or magnesium citrate (as in the product Natural Calm) is to draw water into the intestinal tract to make the fecal matter thinner in consistency and easier to pass through possible kinks or narrowed intestinal passageways. Yoga is a good activity to stretch adhesions and to prevent symptomatic obstructions.

Even with surgery last month to snip adhesions, I am having to be careful in monitoring my food choices and making sure that I keep to a regular intake of MiraLax. Like mypinkheaven mentioned, keeping to a low fiber diet (white bread, saltines) and cooked/soft vegetables (cooked carrots, mashed sweet potatoe) is important. I keep to clear liquids only when symptoms are present. Keeping well hydrated with clear liquids is also key. I drink water flavored with a Nunn’s Electrolyte Tablet.

Adhesions/scar tissue can be elusive despite causing partial obstruction symptoms. They are not readily seen on most imaging studies.

I hope that your son’s symptoms ease with time,
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.


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