In dire need of help....

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KeriLeach
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Joined: Mon Nov 28, 2016 10:53 pm

In dire need of help....

Postby KeriLeach » Mon Nov 28, 2016 10:55 pm

Good evening! I am in dire need of help or suggestions. My Father-in-Law (FIL), 77 was recently diagnosed with colon cancer. He hadn't been feeling well for a few months and took himself to the ER last Friday due to no appetite and feeling "icky". Make a long story short, he had surgery the next day to remove the entire right side of his colon due to having a large mass and possible colon cancer. After surgery we find out there were three other spots, as well as the large mass, with one being in his lymph nodes. The pathology report did record them as being cancerous. Luckily all places were removed and he is to begin chemo soon after his recovery. This is where your help or suggestions are needed. He remained in the hospital for the next three days while being on a clear liquid diet until his last day, which was the following Wednesday. In my opinion he was released from the hospital way too soon. They didn't get him up to walk the halls until Tuesday, and his sugar (he is a diabetic) remained awfully high throughout his stay, which is unusual. Now that he is home, in my own opinion he has taken a turn for the worse. He has no appetite whatsoever, he has uncontrollable diarrhea, no energy (bad enough he will not get out of his recliner to walk to the mailbox and back), he won't drink anything hardly, he will sit there and stare off into space, and it is almost as if he is not here. He looks for excuses to not do anything, eat, or drink. When you tell him things like "you will end up back in hospital" he just ignores you. I personally think he has given up because he refuses to help himself get better by not taking care of himself. This is totally unusual for him, as he has always been a hard worker and normally works like he is 18! His color in his face is off, as it has a grayish tone to it. It is so frustrating because it is as if he has no want to get better. He is so out of character, that he is depressing to be around. My husband and I are at our wits end because we have tried everything we know to encourage him. We called the doctor today to express our concerns and he stated his appetite will take awhile to come back, his bm's will be out of the ordinary as well. He told us to continue to keep Gatorade in him to keep him hydrated...that was it!

Is this usual? Are we pushing him too hard and not giving it enough time? We know he won't be running miles and eating off of buffets but for example today, all he has had is one fried egg and a slice of ham. In return his sugar is severely low. Any advice is appreciated!!!

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WriterGirl1969
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Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: In dire need of help....

Postby WriterGirl1969 » Tue Nov 29, 2016 12:28 am

KeriLeach wrote:I am in dire need of help or suggestions.


Hi Keri. So sorry to hear that your family is going through this. It must be terribly difficult, especially having all happened so suddenly. I think that you did the right thing talking to the doctor. Was it the surgeon you spoke with, or the attending physician from the hospital? I'm just curious because it struck me as odd to have them jump into surgery so quickly. Was your dad obstructed or having other issues that made surgery happen so soon? I only ask this because my understanding is that upon finding the cancer there is generally a CT scan and/or PET scan to determine any other areas of involvement, possible pre-surgery chemo to shrink the tumor (depending on location), etc. Plus meeting with surgeon and/or oncology prior to surgery. Not sure what other mitigating circumstances may have affected your dad's situation.

If it wasn't the surgeon you spoke with, I'd see if you can speak with them. In my case, my surgeon was *much* more responsive to my post-surgical condition than the attending at the hospital was. If you did speak with the surgeon, consider also talking to his regular physician. Maybe something is interacting with his diabetes and it's causing his mood changes. Plus we all handle surgery and anesthesia differently, so that's a factor. And of course there's the biggie - finding out you have cancer.

It's wonderful your dad has you to look out for him. If you really feel in your gut something is wrong, then just keep pushing the doctors until someone listens. Hopefully he'll feel more like himself after he's had a chance to heal up a bit.

Keep us posted. Our hearts and prayers are with you.
Hugs,
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

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BeansMama
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Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: In dire need of help....

Postby BeansMama » Tue Nov 29, 2016 6:12 am

So sorry you have had to find us but glad you did. You will find a wealth of knowledge and lots of support from the members here.

They didn't give a specific diet for your FIL to follow? After I had my colon resection I was placed on a low residue diet for quite some time while my bowel healed. I also had immediate surgery as my tumor was obstructing my colon and causing quite a few issues as well as a fair amount of pain. I'm wondering if what little he is eating is irritating his bowels and making him not feel well.

As Tracy asked which doctor did you speak to? Does he have any follow up appointments scheduled? I also had issues eating after surgery, my surgeon "yelled" at me regularly because I was not eating. It may be worth it to take him back to the hospital. It may be what he needs. I'm definitely not a doctor and this is just my opinion but I would be worried about a complication from the original surgery. It certainly wouldn't hurt to have him checked out by a doctor.

I will add your FIL to my prayer list. I hope you find what is wrong and he begins to get better soon.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

Utwo
Posts: 285
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: In dire need of help....

Postby Utwo » Tue Nov 29, 2016 9:50 am

After a similar surgery I was told that I could eat whatever I wanted.
It was up to me to figure out a proper diet.
BRAT diet may be a good starting point - please Google it.

What is a weight of your father in law?
Drinking/hydration may be more important than eating in the first few weeks.
Quite a few people on this forum reported that they lost several kilos in a first few weeks after a surgery, so this seems kind of normal.
Last edited by Utwo on Thu Dec 01, 2016 10:24 am, edited 2 times in total.
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

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: In dire need of help....

Postby jhocno197 » Tue Nov 29, 2016 2:54 pm

I second the drinking is more important than eating.

You might need to change your expectations. He is an elderly man who just had a HUGE surgery, which will take time to recover from, even if he was spry before. Please don't tell him he is depressing to be around. He is dealing with a cancer diagnosis, plus recovering, which is horrible - not everyone handles it perkily.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

Nik Colon

Re: In dire need of help....

Postby Nik Colon » Tue Nov 29, 2016 9:33 pm

Since it was done so quick and in the ER, I would find out if the surgeon was just a general surgeon. If so, I would try to get ahold of a colorectal surgeon. Also his Dr who deals with his diabetes. They should have given you a diet to follow after surgery (foods that are OK to eat, etc). Moving is important to recovery also, even if just a little. I would push to talk to someone (drs) who know specifically about colorectal surgery. Best wishes.

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BeansMama
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Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: In dire need of help....

Postby BeansMama » Tue Nov 29, 2016 11:25 pm

I just wanted to add as the other posters did - drinking is very important. I didn't think to mention it, it wasn't something I had an issue with. I drank at least 60 oz or water a day. It was all they could get into me without a problem.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

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

Re: In dire need of help....

Postby MissMolly » Wed Nov 30, 2016 2:31 am

Keri:
I think your intentions for your father-in-law are well-meaning but your approach is lacking.

I have had several open-abdominal surgeries. They are not a walk-in-the-park. The intestines do not like to be manipulated and maneuvered during surgery. The intestines are a sensitive organ and, quite frankly, one of the least respected organs of the human body.

The intestine's response to surgery is generally to s-l-o-w the motility of the GI tract. The constant wiggling and squirming of the small intestine slows considerably. The peristaltic waves of the large intestine are less frequently. In some cases, the motility of the intestines can stop completely (paralytic ileus), on a temporary basis.

Slowed GI motility is not something that you can objectively see in your father-in-law. Your father-in-law is likely experiencing some degree of bloating and general malaise with his intestinal tract - which equates to low appetite. The body does not want to ingest food that it cannot properly digest, absorb, and effectively move along.

My advice: Do not push the intake of solid food. Personally, I would have balked at eating a fried egg or ham at 2 weeks post surgery. The smells of many cooked foods was offensive. Meat, in particular, disagreed with me.

What to offer? Focus on liquids, both thin and thick liquids.

Thin Liquids: Fruit juices (grape juice, apple juice are generally easier to intake than highly acidic juices such as orange juice and grapefruit juice); lemonade; chicken broth; miso broth; popsicles (always a personal favorite of mine); frozen fruit-bars; hot and iced tea.

Thick Liquids: Carnation Instant Breakfast (use lactose-free milk to prevent undo gas and bloating) is one of my personal favorites; Orgain® nutritional drinks (an nutritional drink developed by a physician who himself was undergoing chemotherapy, it contains only organic ingredients with NO high fructose corn syrup as found in Ensure and Boost); vanilla pudding; tapioca pudding; sherbet; ice cream; creamed soups (split pea; cream of chicken).

You can also add in: Apple sauce; diced fresh fruit cup (remove all fruit skins, as on an apple, and remove all fruit membranes, as between sections of an orange). Dice the fruit into minute pieces for easier digestion.

I also enjoyed small slices of pita bread with hummus.

Worth noting: Offer small servings. Large portion sizes will detract from one's appetite when one's appetite is waning. Start with 1/2 cup or 1/3 cup. Cut semi-sold foods into tiny, tiny pieces. Slicing and dicing foods into small pieces makes digestion easier as the stomach and intestinal enzymes do not need to work as hard to break down the food into its metabolic components.

Macaroni and cheese. Again, a small serving. 1/2 a cup or less.

Finger foods are another good option. Animal crackers; Ritz crackers or saltines; bread sticks; small pretzels; hard candies to suck on (ex. peppermint candies).

I agree that movement and getting up and walking is important. The intestines are a long-tube of smooth muscle and they are influenced to move by general movement and activity of the skeletal muscles and body.

Take your father-in-law for a car ride to a local park. Get outside for some fresh air and a change of scenery. Just bundle him up in a warm coat if you live in a cold climate. Go for a ride to a local bookstore. Let him browse the book aisles and select a book. My family used to take me to Home Depot, simply so I could walk the aisles and get some exercise when I had surgery in December. Keep the outing to about 30-45 minutes. Getting out and about with people will also be helpful.

Above all, be an empathetic, loving, and patient daughter-in-law. Tough Love rarely is effective.

The effects of anesthesia can linger for several weeks, making someone somewhat lethargic and spacey.

I hope your father-in-law begins to feel more like himself in the day ahead,
- 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.

ChiMama
Posts: 34
Joined: Wed Jul 20, 2016 8:41 pm
Location: PHX

Re: In dire need of help....

Postby ChiMama » Thu Dec 01, 2016 1:36 am

Hi Keri

It can take some time to get appetite & energy back. The first week after I was home from the hospital, I was on the low residue plan but had no appetite... Almost everything tasted "off" or spoiled. Apparently that's an after-effect of anesthetic. The only things that tasted good to me were organic applesauce and Trader Joe's parchment crackers. So that's what I ate for days.

Maybe find a few things that taste good to him and go with those until his appetite returns.
4/21/16 First Colonoscopy @59
DX high grade dysplasia
Fibroid uterus, liver cysts, lung nodules
6/17/16 Open surgery: hysterectomy, X 12.5cm sigmoid, 29 LN
T2N0M0 Stage 1 Mod diff adeno 5.2cm x 4.1. Gyne benign, Lynch neg
CT 7/27/16 Ground Glass & spiculated lung nodules, thyroid nods, watching.
2017/18/19 Scopes: polyps. Scans stable
2019 Endo: hiatal hernia. 2 breast biopsies, benign
5/20 GGN 1.1cm. Biopsy: adenocarcinoma/primary lung cancer. Robotic VATS upper left lobe. 1A
Mama to a rescue Chihuahua

Utwo
Posts: 285
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: In dire need of help....

Postby Utwo » Thu Dec 01, 2016 10:41 am

MissMolly provided a lot of good recommendations.
She made just a couple of errors, because she has not dealt with right hemicolectomy [later comment: apparently this was a wrong assumption and MissMolly has a relevant experience] like your father in law.

MissMolly wrote:... use lactose-free milk to prevent undo gas and bloating) is one of my personal favorites; Orgain® nutritional drinks (an nutritional drink developed by a physician who himself was undergoing chemotherapy, it contains only organic ingredients with NO high fructose corn syrup as found in Ensure and Boost)
These are generic recommendations. Some people believe in this stuff. It may or may not be important for your father in law.

MissMolly wrote:... creamed soups (split pea ...
Beans are not recommended in case of right hemicolectomy.

Search this site or google for "right hemicolecyomy diet" for a complete list of food to avoid.
Last edited by Utwo on Thu Dec 01, 2016 4:30 pm, edited 2 times in total.
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

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

Re: In dire need of help....

Postby MissMolly » Thu Dec 01, 2016 11:54 am

Utow:
I can speak with understanding of a right hemicolectomy. I had the total of my large intestine removed as well as one foot of small intestine removed due to a severe perforation. Split pea soup was one of my favorites during my recovery and caused me no undue GI distress.

High fructose corn syrup is a main ingredient in the pseudo-nutrition drinks Ensure and Boost. It's inclusion is troublesome to many as it can affix to the wall of the intestine like glue. High fructose corn syrup is a culprit in the country's rising rates of type II diabetes and metabolic syndrome. High fructose corn syrup is not a benign food additive. People would be wise to be choose a nutritional supplement other than Ensure or Boost. There are better alternatives available.
- 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.

Utwo
Posts: 285
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: In dire need of help....

Postby Utwo » Thu Dec 01, 2016 4:26 pm

Thank you MissMolly for your comments.
I agree with most of your recommendations.

Even a bit of beans/peas was detrimental to my digestion after my surgery.
Prior to my right hemicolectomy I tolerated beans/peas OK.

At the same time milk was OK prior and after my surgery.

Eating "healthy" is the least of concerns right after a surgery.
The first priority is to figure out a diet that can be tolerated (regardless of how much lactose, gluten, HFCS, GM are there).
After a bowel movements pattern has stabilised, it makes sense to adjust your diet and make it "healthier" (according to your understanding of the meaning of this term).
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

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: In dire need of help....

Postby TXLiz » Fri Dec 02, 2016 8:59 pm

I have had a c section with a 10 lb baby in my 20s, open, and in August had open surgery on my right side due to a cancerous bowel obstruction. I am 46. The right hemicolectmy was way worse than the c section.

I was shaky, weak, off balance, tired, and plain terrified for 3 months. My appetite and bowel movements were variable.

The surgery and diagnosis are mind blowing mentally and physically. At 77, your FIL probably will recover slower, and have a harder time doing so. I can imagine at 77, after this ordeal, the recliner is very appealing.

I am sorry for his (and your) troubles. It's no fun for anybody. I can remember being out of the hospital a few days after surgery and sitting at my computer for the first time and blanking on my password. And then trying to recall the bills I had to pay, and the amounts. It was like starting over again for a few weeks.

Perhaps your FIL can go to his PCM and get an antidepressant and see a nutritionist? I know it has the be frustrating to care for him, you need support. Good luck.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

Nik Colon

Re: In dire need of help....

Postby Nik Colon » Fri Dec 02, 2016 9:14 pm

Sorry, just reading replies again got me thinking. 2005, my dad left wk, collapsed on the side of the Rd. Was considered dead at first (long story short) aortic aneurysm, 830 he left. Not til 11pm Dr arrived who had to be called in. Ruptured, dead, etc. He survived, miracle. What am I getting at...it took months to get everything to somewhat normal. He couldn't taste, etc. Now over 10+ yrs he is almost 100% except his short term memory. My point being, things take awhile, in time they will get better. Be patient. (He is 73 now)

PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

Re: In dire need of help....

Postby PainInTheAss » Sun Dec 04, 2016 7:40 am

For many weeks after my surgery, I couldn't eat more than a couple of bites of anything. I couldn't eat anything dry like bread or meat. There's no way I would have eaten what you said he had.

I kept snacks by my bed like applesauce cups, jello and peanut butter. I tried to just take a bite or two every hour. I drank sweet tea and carnation instant breakfast just to have calories. Nothing tasted good. My mainstay was Stouffer's Mac and cheese, but I couldn't eat the whole thing.

I had no energy and didn't want to do anything either. Walking was incredibly painful.

I lost a lot of weight, but I didn't starve to death. Protein helps with healing so try giving him any moist food that is high in protein like cottage cheese and Greek yogurt.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation


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