Frustrated, need your opinion

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ilovemyfrenchie
Posts: 23
Joined: Fri Nov 03, 2017 9:20 pm

Frustrated, need your opinion

Postby ilovemyfrenchie » Thu Dec 13, 2018 12:12 pm

Hello everyone!

Just wondering if anyone has any advice. Just saw the surgeon and no help. My mom has rectal cancer with liver Mets and a colostomy (no colectomy). Her colostomy is working fine but the past 2 months she’s been having rectal discharge and pain where she is running to the bathroom every 30 min. One time there was even a piece of vegetable in her rectal stool. The surgeon said it’s normal??? He didn’t even look at the CT because “it was down”. But I have it on the patient portal and the CT said the “bowel wall thickening” is worsening near the tumor site (no obstruction) compared to last months scan, with a possible stricture. My mom said this is taking a toll on her life, worse then the chemo that she’s been on for over 1 year now. He recommended seeing a GI doctor but the only available appt is in 2 months. The constant cramping and discharge is making her so weak. I feel like these doctors offer no help with Stage 4 cancer patients. When you suggest something, they brush it off. I feel like my mom is slowly giving up, she doesn’t wanna see more doctors.

Do GI doctors do scopes for possible stricture or surgeon?

My mom tried a water enema and helped a little and I asked both the oncologist and surgeon for a script for a steroid enema and they didn’t want to prescribe it. I’m so sad and frustrated.
Daughter to 59 yo w/ Stage 4 Mets to liver & peritoneal
10/1/17 ER trip for GI bleed found rectal tumor (CEA 71)
10/2/17 emergency colostomy (no resection, told tumor inoperable due to Mets found)
10/17 started Folfiri with Avastin (CEA 171)
8/18 CT = liver Mets continue to shrink (CEA 4)

“Chemo for life” hoping for surgery soon

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

Re: Frustrated, need your opinion

Postby MissMolly » Thu Dec 13, 2018 1:10 pm

Lovemyfrienchie:
With an end colostomy (also called a Hartman’s pouch/procedure) your mother will have what is referred to as a residual rectal stump.

The rectal stump is the portion of rectum that remains when the resection of her large intestine due to the tumor was closed.

The problem is disuse proctitis. Or otherwise, disuse atrophy of the rectum and it’s deep muscular layers and epithelial lining. The rectum is alive and unaware that it has been disconnected. It continues to produce mucus and intercellular secretions and slough off cells and metabolic byproducts - all of which need to exit via the anus.

Another issue is rectal stump inflammation due to an absence of short chain fatty acids. Fecal matter contains nutrients that are vital to the healthy maintenance of rectal tissue. Yes, “poop” has a physiological purpose. It is the short-chain fatty acids found in fecal matter that provides the rectum with the nutrition that it needs. Absent the passage of fecal matter, the remaining rectal stump becomes inflamed with loss of moisture. Bacterial overgrowth can become an ongoing issue, causing a foul smelling discharge, pelvic pain, and a low grade fever with general malaise.

Cramping and feeling the need to have a bowel movement are common. It is often helpful to quietly sit on the toilet to allow accumulated mucus to pass. Sitting on the toilet engaged the mind-body connection that will allow easier passing of accumulated mucus/secretions/cellular debris.

I am sorry that your mother is receiving less than attentive care for her likely disuse proctitis. Disuse proctitis, left untreated, is very uncomfortable and definitely negatively impacts one’s quality of life.

Your mother’s physicians do have options at hand to aide your mother and make her more comfortable. A few options:
1. Prescription for short-chain fatty acids as either an enema or suppository.
This will be a pharmacy compounding prescription. You will need to go to a compounding pharmacy. The short-chain fatty acid treatment usually lasts for 2-3 weeks, with administration of a 5ml-10ml suspension enema 1-2 times a day. It is helpful to retain the suspension enema for 10-15 minutes before expelling, lying on one’s side.

Short-chain fatty acid prescriptions are not normally covered by commercial insurance. Be prepared to pay out of pocket. About $250-$300 for a 3 week course of treatment.

The benefit of short chain fatty acids is that the treatment acts to corroect the basis of the problem, rather than masking symptoms.

2. Steroid suppositories or foam.
Corticosteroid suppositories or foam (ex. ProctaFoam) is another route to calm rectal stump inflammation. It provides temporary relief (several weeks) and may need to be repeated as symptoms reappear.

Corticosteroids do have negative effects on tissue integrity (tissue thinning). So care and monitoring are important to avoid tissue thinning that may cause bleeding or perforation if used long-term.

3. Antibiotics specific to colon flora
A course of Flagyl or Cipro can be helpful to tame bacterial overgrowth associated with disuse proctitis. 500 mg 2 x a day for 7-10 days, initially. Some people with rectal stumps use Flagyl or Cipro on a prophylatic basis to keep bacterial overgrowth in check (ex. 250 mg Flagyl daily or every other day).

4. Rectal stump irrigation
Regular irrigation of the rectal stump is a good approach to maintain hygiene. It can people to squirm initially at the thought, but it becomes as routine as brushing your teeth.

Get a baby nose irrigator/baby nasal baster used to clear nasal secretions of babies. Nasal basters have a narrow tube with suction bulb, perfect for gentle insertion in an otherwise unhappy recital atump.

Irrigation of a rectal stump is easily done while showering. Fill a plastic cup with warm water and a bit of liquid baby soap or aloe Vera or liquid castelle soap. Fill the nasal baster with the warm/soapy liquid and insert into the anus, compress the suction bulb to irrigate the water upward into the rectum. You can use the nasal blaster to suction the liquid out or allow the liquid to naturally exit the rectum/anus. Repeat 2-3 times.

Your mother’s colon surgeon should be able to perform a quick proctoscope of your mother’s rectal stump in his/her office. A simple 6 minute procedure. To get a visual look of the offended tissues and the degree of inflammation/drying/atrophy.

Disuse proctitis can truly make a person feel “sick” as though having a case of the flu. Passing “mucus poops” can be upsetting and painful, especially when physicians provide no patient education up front as to what is happening. Loving with an ostomy can often entail a lot of self-learning.

Members of the United Ostomy Association of America support forum frequently dispense helpful advice on healthy maintenance of rectal stumps. It is a supportive group of individuals, just as is his forum. Do not hesitate to visit the UOAA ostomy support forum (general section has the most foot traffic). http://www.uoaa.org
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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GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Frustrated, need your opinion

Postby GrouseMan » Fri Dec 14, 2018 11:21 pm

Your mom is in need of a second opinion I feel. In your signature is:

10/2/17 emergency colostomy (no resection, told tumor inoperable due to Mets found)

That's a load of BS. Granted my wife didn't have rectal cancer but they still removed her primary colon tumor despite her having mets to her liver and spleen and at the time they thought perhaps lungs. It doesn't sound like they are making much of an effort to reduce the size of her tumor other than through chemo. Usually they at least try to shrink the rectal tumor via radiation therapy with chemo prior to doing a resection. Sounds like her liver mets are responding well to chemo like my wife's did. One would think they would try to make her quality of life a little better than this. My wife's quality of life was very good up until 2 months before she passed away. She fought this for 4 years.

I don't know where you live or what resources you have available but I would seek out another opinion from a larger cancer center.

Good Luck!

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

ilovemyfrenchie
Posts: 23
Joined: Fri Nov 03, 2017 9:20 pm

Re: Frustrated, need your opinion

Postby ilovemyfrenchie » Sat Dec 15, 2018 7:50 pm

Thank you for your replies Molly and Grouseman. I researched so much before seeing the doctors and suggested the diversion colitis and they did not want to prescribe any steroid or enema, just antibiotics for one week. Which didn’t help. We finally saw the oncologist again yesterday and they are referring her to a radiation oncologist and a Rectal MRI, which she never had since diagnosis over a year ago. They think her primary rectal cancer is growing causing her current symptoms. Since diagnosis, they only focused on her liver mets.

Grouseman,
Yes last year we felt like all the doctors brushed her off and said chemo only. I did take her to Moffitt for a second opinion and they said the same thing, with the Mets surgery is not an opinion. She tolerated chemo really well for over a year now. We also tried to see if someone can do a liver radiation type of procedure, but refused because her possible peritoneal Mets which I’m not even sure she has because they never did any other imaging other than a CT.
Daughter to 59 yo w/ Stage 4 Mets to liver & peritoneal
10/1/17 ER trip for GI bleed found rectal tumor (CEA 71)
10/2/17 emergency colostomy (no resection, told tumor inoperable due to Mets found)
10/17 started Folfiri with Avastin (CEA 171)
8/18 CT = liver Mets continue to shrink (CEA 4)

“Chemo for life” hoping for surgery soon

User avatar
GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Frustrated, need your opinion

Postby GrouseMan » Sat Dec 15, 2018 10:30 pm

They probably could see the Peri Mets when they did the colostomy. if they could be seen then its probably advanced. Peri Mets are what did my wife in. The very good surgeon that did her colon resection could see her Liver mets that the CT scan had shown, but didn't see any Peri mets. I am sure they were there just microscopic in size at that point. It was the peri mets that did her in. Her CEA started to rise and she was having some loss of kidney function. No new mets were seen, and her existing Liver mets had calcified and the spleen met disappeared completely. Nodes in her lungs NEVER changed from diagnosis, so were likely not due to mets. The peri met tumor that finally showed up in CT scans was difficult to visualize by CT. It started to pinch off her right kidney ureter so they had to put a stent in to keep it open. Eventually the tumor caused a fissure. It was pretty much inoperable. It was still difficult to see until the radiologist that was doing her follow up CT scans for a clinical trial she was in noted that it might be blocking her colon It was pressing on it. Not growing into it. This was about 4 weeks before she passed away. We tried a colostomy but the blockage was too far up her GI track and little nourishment or for that matter water was getting through. In the end all I could do was keep her comfortable

Peri Mets are very hard to treat because they are not very well vascularized and systemic chemo doesn't get to them very well. Still - I can't see why your mom's team of doctors are not at least trying to make her more comfortable. This is called Palliative Care. They should be trying to make her quality of life as good as they can. It sounds like her liver mets are shrinking with chemo.

Its not easy to deal with this sort of stuff. I was very realistic about all this while my wife was going through it. I was a cancer researcher so I knew the odds but I kept it to myself. My wife tried to be optimistic and proactive in her care. I hoped against the odds that for her things would be different. Spent money on a horse trailer with living quarters to enable her to go to watch her dogs compete in dog horse back trials for instance something we wanted to do in retirement. She took the trailer, her horse and a couple of the dogs across the state and later judged a field trial on horse back just 6 weeks before she passed away. Wasn't the wisest use of money but it made her happy. If I were you - I would focus on making your mom's quality of life better. Try to go and do as many of the things she enjoys doing together while you can. Make some memories.

Good Luck and take care on your journey.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017


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