Post obstruction ileostomy

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Sara!!!!
Posts: 51
Joined: Wed Jul 19, 2017 9:57 am

Post obstruction ileostomy

Postby Sara!!!! » Tue Mar 20, 2018 9:10 am

Mum had a surgery 4 weeks back for small bowel obstruction which wasn't resolving conservatively. Has an ileostomy. she was eating normally but for the past 2, 3 days she gets fullness after eating. Heaviness. Not nausea or vomiting. But fullness. Even with small amount of food. Can anyone relate? Is it obstruction again?
Daughter to mom 67, colon cancer
Diagnosed Dec 16, bowel obstruction.
Hemicolectimy done,Dec 16.
4 lesions in liver on scan before chemo jan 17.
Folfox +Avastin 12 cycles,disease progression on pet Aug 17.
Attempted liver resection, failed. Mets peritoneam. Diffuse.
Mets to lungs, liver. Peri on scan Nov 17.
3 cycles of folfiri+ cetuximab. Cea down from 888 to 383.
Small bowel obstruction jan 18

risto
Posts: 54
Joined: Wed Jan 06, 2016 2:28 am
Location: USA

Re: Post obstruction ileostomy

Postby risto » Sat Mar 24, 2018 1:18 am

My wife had her surgery February 4, almost 7 weeks ago, for small bowel obstruction. She was in the hospital 37 days and is now on TPN at home, and can only eat very small amounts. I think for her it is more an issue of pain digesting food rather than fullness. She had a few days of vomiting around a week ago but that has resolved on its own. I keep hoping that she will be able to resume her normal eating and get off the TPN but I don't see much sign of that yet. After 7 weeks, she is still suffering from fatigue and digestive pain.
DW Dx 7/15, 41 yo, st IV, 3+ liver mets: 11.3 cm, 7cm, 3cm. MSS.
KRAS, APC, SMAD4, TP53 mut.
7/15-10/15: FOLFOX+bev. x8
11/15-12/15: SIRT (Y90)
1/16: Toxic Hepatitis, chemo break
4/16: Liver resec. fail
5/16-7/16: FOLFIRI x6
8/16: Liver resec.
8/16-11/16: FOLFIRI x6
2/17: IMRT/Xeloda x25
4/17: LAR
6/17: CT: Progression. Peri, Lung, Liver mets. FOLFIRI x6
9/17: FOLFIRI+Bev x5.
11/17: CT: Stable. 5FU+bev. maintenance x5
1/18-2/18: Surgery for SBO
5/18: ascites, acute liver injury

Sara!!!!
Posts: 51
Joined: Wed Jul 19, 2017 9:57 am

Re: Post obstruction ileostomy

Postby Sara!!!! » Sat Mar 24, 2018 4:59 am

Why was she in the hospital for so long? Did she have some complications? And is she on tpn cuz she can't eat much? Where does she feel the pain when she eats?
Daughter to mom 67, colon cancer
Diagnosed Dec 16, bowel obstruction.
Hemicolectimy done,Dec 16.
4 lesions in liver on scan before chemo jan 17.
Folfox +Avastin 12 cycles,disease progression on pet Aug 17.
Attempted liver resection, failed. Mets peritoneam. Diffuse.
Mets to lungs, liver. Peri on scan Nov 17.
3 cycles of folfiri+ cetuximab. Cea down from 888 to 383.
Small bowel obstruction jan 18

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

Re: Post obstruction ileostomy

Postby MissMolly » Sat Mar 24, 2018 9:13 am

I have a close friend who has widely disseminated cancer with peritoneal metastatis and bony lesions to her femur, humorous, and skull. She also has recurrent digestive distress and is able to take-in only a few bites of food due to feeling abdominal pressure and fullness. Her oncologist has explained her situation to her as one where cancerous cells are effectively coating her small intestine with a thin film - causing the small intestine to lose motility, losing the ability to squiggle and move, losing the ability to propel food material through the digestive tract, losing the ability to uptake nutrients and water. It is not a physical obstruction that she is experiencing (no large tumor mass) but rather a decline in the ability of the intestine to work/function. Her intestine is moving at a crawl.

I have know this friend since my earliest childhood days. A lifetime friendship. “It sucks,” she says, of her plight. I could not agree more.
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.

Sara!!!!
Posts: 51
Joined: Wed Jul 19, 2017 9:57 am

Re: Post obstruction ileostomy

Postby Sara!!!! » Sat Mar 24, 2018 10:26 am

MissMolly wrote:I have a close friend who has widely disseminated cancer with peritoneal metastatis and bony lesions to her femur, humorous, and skull. She also has recurrent digestive distress and is able to take-in only a few bites of food due to feeling abdominal pressure and fullness. Her oncologist has explained her situation to her as one where cancerous cells are effectively coating her small intestine with a thin film - causing the small intestine to lose motility, losing the ability to squiggle and move, losing the ability to propel food material through the digestive tract, losing the ability to uptake nutrients and water. It is not a physical obstruction that she is experiencing (no large tumor mass) but rather a decline in the ability of the intestine to work/function. Her intestine is moving at a crawl.

I have know this friend since my earliest childhood days. A lifetime friendship. “It sucks,” she says, of her plight. I could not agree more.
Karen

Does she have an ileostomy as well?
Daughter to mom 67, colon cancer
Diagnosed Dec 16, bowel obstruction.
Hemicolectimy done,Dec 16.
4 lesions in liver on scan before chemo jan 17.
Folfox +Avastin 12 cycles,disease progression on pet Aug 17.
Attempted liver resection, failed. Mets peritoneam. Diffuse.
Mets to lungs, liver. Peri on scan Nov 17.
3 cycles of folfiri+ cetuximab. Cea down from 888 to 383.
Small bowel obstruction jan 18

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

Re: Post obstruction ileostomy

Postby MissMolly » Sat Mar 24, 2018 5:44 pm

Hi Sara:
My BFF (Chrissie, age 52) had a diverting loop ileostomy placed about 4 months ago. This was done as a Palliative option. Her intestinal slowing was more and more problematic with obstruction-like symptoms (nausea/vomiting; pressure; wave-like pain that would wax and wane). This did provide her with a measure of relief.

At the end of February, she had a GJ tube placed (gastric-jejunial). This allows her to vent her digestive tract, reducing internal pressure.

Unfortunately, Chrissie’s metastatic disease has continued to progress. She opted for hospice last week after an upsetting fall with injuries. She suffered a pathological fractured of her femur due to cancerous bone lesions.

The gastric venting did provide Chrissie with a better quality of life. She has never regretted the GJ tube and gastric venting.

I wish I had a more uplifting post. But this information may be helpful to someone in its blunt honesty in sorting through difficult decisions of treatments/procedures and overall quality of life.
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.

User avatar
Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Post obstruction ileostomy

Postby Robino1 » Sat Mar 24, 2018 5:57 pm

Miss Molly,

I am truly saddened by your dear friend's progress. I am so sorry. {{{ Hugs }}}
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

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

Re: Post obstruction ileostomy

Postby MissMolly » Sat Mar 24, 2018 6:26 pm

Thank You Robin. That is very gracious of you to wrap me in a hug. I believe strongly in the power of collective GoodWill and healing energy flows.

Chrissie and I have known each other since our earliest childhood days against the backdrop of strollers and a playpen, as our mothers were bestie friends. We went to grade school and high school together . . . Always staying in touch . . . A lifelong friendship between us. It really is the meaningful relationships in our lives that are important when times are difficult.
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.

Sara!!!!
Posts: 51
Joined: Wed Jul 19, 2017 9:57 am

Re: Post obstruction ileostomy

Postby Sara!!!! » Sat Mar 24, 2018 6:53 pm

I am so so sorry about your friend. I hate cancer!
Daughter to mom 67, colon cancer
Diagnosed Dec 16, bowel obstruction.
Hemicolectimy done,Dec 16.
4 lesions in liver on scan before chemo jan 17.
Folfox +Avastin 12 cycles,disease progression on pet Aug 17.
Attempted liver resection, failed. Mets peritoneam. Diffuse.
Mets to lungs, liver. Peri on scan Nov 17.
3 cycles of folfiri+ cetuximab. Cea down from 888 to 383.
Small bowel obstruction jan 18

risto
Posts: 54
Joined: Wed Jan 06, 2016 2:28 am
Location: USA

Re: Post obstruction ileostomy

Postby risto » Sat Mar 24, 2018 7:56 pm

Sara!!!! wrote:Why was she in the hospital for so long? Did she have some complications? And is she on tpn cuz she can't eat much? Where does she feel the pain when she eats?

My DW was admitted to the hospital January 23 and didn't get the surgery till Feb 3, which was something like 11 of the 37 days. What we were told is that because her intestine were distended so long it takes that much longer to recover. I'm not sure whether that is something they would consider to be a complication, but it did seem it took her a lot longer to recover than they expected. In fact they even stopped the TPN and took out the PICC line thinking she would be good to go, then she started vomiting again, so they put it all back. They initially presented it as a choice to my DW to stay in the hospital longer or go home with TPN; at first she was reluctant to go home with the TPN, but once we learned how it would work at home, she decided that she really would be better off at home, which I think she is. In my mind I was thinking, OK, maybe a 2-3 weeks of home TPN but now that it's been almost 4 weeks with no end in sight I'm beginning to wonder whether this is going to be going on for months or longer. The scary thing is that we learned that the median survival on TPN is 5 months - not because TPN is the cause of death usually, but because the inability to obtain necessary nutrition by mouth is often a sign of advancing disease processes. That is hard for me to believe in her case because just in January we were traveling, going on hikes, and what-not, and the small bowel obstruction was caused by an internal hernia, not by tumors. Now she can only eat small meals, has non-specific abdominal pain after eating, and is getting at the most 500 calories per day from food, so the TPN is keeping her going somewhat, though she does have a lot of fatigue.
DW Dx 7/15, 41 yo, st IV, 3+ liver mets: 11.3 cm, 7cm, 3cm. MSS.
KRAS, APC, SMAD4, TP53 mut.
7/15-10/15: FOLFOX+bev. x8
11/15-12/15: SIRT (Y90)
1/16: Toxic Hepatitis, chemo break
4/16: Liver resec. fail
5/16-7/16: FOLFIRI x6
8/16: Liver resec.
8/16-11/16: FOLFIRI x6
2/17: IMRT/Xeloda x25
4/17: LAR
6/17: CT: Progression. Peri, Lung, Liver mets. FOLFIRI x6
9/17: FOLFIRI+Bev x5.
11/17: CT: Stable. 5FU+bev. maintenance x5
1/18-2/18: Surgery for SBO
5/18: ascites, acute liver injury


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