Surgery scheduled, clinical study for Lifeseal, questions about recovery

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Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby Caat55 » Fri Feb 02, 2018 6:18 am

Thanks Mio. Hardest thing is getting feet up into bed, moving in bed as abdomen is so sore. Looking at Saturday or Sunday d/c. Supposed to met dietician.
Also so burby, gassy. I guess that's normal.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: Questions about recovery from surgery

Postby Caat55 » Sat Feb 03, 2018 1:11 am

The next time you see the Surgeon or the Resident, you can ask what they are looking for in order to know that you are ready for discharge. Normally, they have a checklist of conditions that have to be met before you will be discharged. For example, they need to know that your bowel is no longer under temporary paralysis from the anaesthesia. They also need to know that you are able to eat well and to excrete well. Sometimes they look at the color and amount of output in the drain-tube bag, etc.

My Doctor said my discharge is up to me. I am using toilet, emptying bag. I struggle with getting into and out of bed, at home I won't have benefit of armrests. This is a concern. How did you all manage. Go tomorrow or Sunday?
Went outside and enjoyed sunshine and some live music.

I tried a two piece unit today, it's much heavier. It's all a learning experience I guess.

Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

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O Stoma Mia
Posts: 1322
Joined: Sat Jun 22, 2013 6:29 am
Location: Crossing the Equator now,, 6/23/2018

Re: Questions about recovery from surgery

Postby O Stoma Mia » Sat Feb 03, 2018 2:43 am

Caat55 wrote:.. How did you all manage?

I managed by using an abdominal binder to protect my incision. I also used a one-piece ostomy device since I found the two-piece devices to be too cumbersome and too inconvenient.
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53704&p=426283#p426283

Image

About your pathology report -- Have they said when you will receive a copy? Will you be given a copy after you have gone home? If so, will you have the copy early enough so that you have time to review it before your next meeting with your doctor?

Adenocarcinoma of the Colon and Rectum -- Stanford School of Medicine
http://surgpathcriteria.stanford.edu/gitumors/colorectal-adenocarcinoma/printable.html

Staging Criteria for Adenocarcinoma of Colon and Rectum (Stanford Pathology Department)
http://surgpathcriteria.stanford.edu/gitumors/colorectal-adenocarcinoma/grading.html

Gastrointestinal Tumor Pathology Specifications (Stanford Pathology Department)
http://surgpathcriteria.stanford.edu/by_section.html#GItumors

Pathology Abbreviations
http://surgpathcriteria.stanford.edu/abbreviations.html
Last edited by O Stoma Mia on Sun Feb 04, 2018 1:40 pm, edited 1 time in total.

Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: Questions about recovery from surgery

Postby Caat55 » Sun Feb 04, 2018 12:17 pm

About your pathology report -- Have they said when you will receive a copy? Will you be given a copy after you have gone home? If so, will you have the copy early enough so that you have time to review it before your next meeting with your pathology report.

Mio,
They say it takes five working days, Shayne next Tuesday or Wednesday. I come back to clinic the following week. Probably talk about it then.
Coming home today, so excited. Learning to time eating and bag. I have a tracking sheet that all details go on. I put it on my self phone and can update from the AP.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

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Atoq
Posts: 231
Joined: Wed Oct 25, 2017 9:31 am

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby Atoq » Sun Feb 04, 2018 12:39 pm

So nice that you are going home today! Have a nice and smooth recovery! I have been home for 4 days now and it is so nice! To get out of bed you can roll first on the side and push you up with the arm against the bed. I don’t use the heavy belt around my belly because I cannot bear it, but I got some Comfizz panties that prevent the stomy bag to hang on the skin.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 VATS surgery scheduled

Lee
Posts: 5563
Joined: Sun Apr 16, 2006 4:09 pm

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby Lee » Sun Feb 04, 2018 3:11 pm

Glad you are out of surgery, and going home soon. Be sure to continue walking once you are home. It really does help in the healing process.

All the best,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby Caat55 » Sun Feb 04, 2018 6:53 pm

Atoq wrote:So nice that you are going home today! Have a nice and smooth recovery! I have been home for 4 days now and it is so nice! To get out of bed you can roll first on the side and push you up with the arm against the bed. I don’t use the heavy belt around my belly because I cannot bear it, but I got some Comfizz panties that prevent the stomy bag to hang on the skin.

Claudia

I wore a skirt home from hospital and wore a slip under the bag so it won't touch me. Is your belly still heavy? Mine is. The stoma nurse had me try a two piece bag, much longer and heavier, pulls more. There is a home nurse coming tomorrow to oversee bag change, check wounds. Did you have a nurse?
I climb into bed on my knees and do the two handed push up from my side to get out.
Glad you are home too Claudia, you were quiet for awhile.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby Caat55 » Sun Feb 04, 2018 6:55 pm

Lee wrote:Glad you are out of surgery, and going home soon. Be sure to continue walking once you are home. It really does help in the healing process.

All the best,

Lee

I have my Fitbit on at home. I have to go up and down stairs to bedroom. It is gorgeous here, mid 70s, so I sat outside and watched my husband do yard work. I won't get 10000steps but maybe a couple.
Thanks Lee. I appreciate all the good advice and support.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

User avatar
Atoq
Posts: 231
Joined: Wed Oct 25, 2017 9:31 am

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby Atoq » Mon Feb 05, 2018 1:35 am

Caat55 wrote:I wore a skirt home from hospital and wore a slip under the bag so it won't touch me. Is your belly still heavy? Mine is. The stoma nurse had me try a two piece bag, much longer and heavier, pulls more. There is a home nurse coming tomorrow to oversee bag change, check wounds. Did you have a nurse?
I climb into bed on my knees and do the two handed push up from my side to get out.
Glad you are home too Claudia, you were quiet for awhile.
S

My belly is not heavy anymore, it’s eleven days from surgery now. I woke up from surgery with a two piece bag, but after that I have used the Coloplast Sensura Mio and so far I have not experienced leakage. I use some barrier paste around the hole to help filling the gaps. I have had a stomy nurse visiting me at the hospital, but, since I already have had a colostomy for two months, there will be no follow up.

I find this recovery easier than the one I had two months ago, probably because my body learned how to compensate for weakened abdominal muscles and the transition before and after surgery was not so huge.
Moreover, the previous surgery was not planned.

All the best

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 VATS surgery scheduled

Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby Caat55 » Mon Feb 05, 2018 11:02 pm

First day home. I had a friend spend much of the day with me. She took me to the grocery store as we didn't have a lot of the foods the dietician recommended in the house. A home health nurse came today to open me up. She gave me some good tips. They actually have a stoma nurse who will check in on Wednesday. I am not sure how long they plan to come. The nurse thinks I am doing great. She went through the supplies they sent home from hospital with me, explained there use. I changed to a covered pouch from the clear ones they provided. It also has a vent, really cool. My husband is at work at day, and still not yet home, but he has a lot of work to make up being off all last week. He is also bringing our dog home from the friends who have been caring for him.
I ordered samples from the site O Stoma Mio recommended. I am going to get one of those wraps too so I can eventually go back to yoga. Just a lot of moving around today, Fitbit has me a little over 2000 steps. Belly isn't as swollen, can see my incision above my pubic area now. Emptying the bag is getting easier, even did it at friends yesterday while watching the Super Bowl.
I have to say that is was easier to sleep in the hospital bed, had a hard time finding a comfortable spot last night.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

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Robino1
Posts: 452
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Facebook Username: Robin.lawthers
Location: Florida

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby Robino1 » Tue Feb 06, 2018 8:15 am

After I had my resection (years ago) I slept in the guest bedroom and 'cradled' my body with pillows all around me to help keep in a comfortable position, once I found one.

I'm a side sleeper so I had a pillow to cushion my belly and one at my back that I could slightly be on my back'ish
Pillows at my head and back so I was slightly inclined

You're doing great!!! :D
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

Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby Caat55 » Tue Feb 06, 2018 1:28 pm

W[quote="Robino1"]After I had my resection (years ago) I slept in the guest bedroom and 'cradled' my body with pillows all around me to help keep in a comfortable position, once I found one.

I'm a side sleeper so I had a pillow to cushion my belly and one at my back that I could slightly be on my back'ish
Pillows at my head and back so I was slightly inclined


Thanks Robino I am a side sleeper too. Tried a pillow in last night, a two to prop me up. My dog snuggled in behind me as a prop too. Got the hot flashes going on top of it all. Never a dull moment.
Did a solo shower, put away laundry and ordered samples today. I am looking for a belt that's soft, flexible so I can do yoga eventually. Some of the wraps seem pretty rigid.
It's is the 70s here again today. Going to take in some Vitamin D.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

MissMolly
Posts: 507
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Surgery scheduled, clinical study for Lifeseal, questions about recovery

Postby MissMolly » Tue Feb 06, 2018 1:46 pm

Susan:
Take a moment and look at the line of ostomy designed undergarments and “belly bands” from a family owned company in England called ComFizz.

www.comfizz.com

ComFizz has been awarded several awards for innovative product excellence through the British NHS. I have worn their ostomy undergarments for 6 years and am a loyal customer. I particularly love the women’s camisole and belly band. I am also a regular practitioner of yoga and the ComFizz garments are extra comfortable to wear during practice.
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.

Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: Questions about recovery from surgery

Postby Caat55 » Tue Feb 06, 2018 5:18 pm

About your pathology report -- Have they said when you will receive a copy? Will you be given a copy after you have gone home? If so, will you have the copy early enough so that you have time to review it before your next meeting with your doctor?


Pathology report back. trying to decipher


Sigmoid colon demonstrate residual invasive low grade adenocarcinoma with rare small groups of cancer cells invading into the muscalaria corresponding to a near complete response(score 1) resection margins are negative. no metastatic disease in 26 lymph nodes, 0/26
Adenocarcinoma, Histologic Grade 1, well differentiated, tumor size ,0.2 x 0.1 x 0.1 cm, no tumor deposits

Classification: pT2 pNO
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

User avatar
O Stoma Mia
Posts: 1322
Joined: Sat Jun 22, 2013 6:29 am
Location: Crossing the Equator now,, 6/23/2018

Re: Questions about recovery from surgery

Postby O Stoma Mia » Tue Feb 06, 2018 11:49 pm

Caat55 wrote:Pathology report back. trying to decipher

Sigmoid colon demonstrate residual invasive low grade adenocarcinoma with rare small groups of cancer cells invading into the muscalaria corresponding to a near complete response(score 1) resection margins are negative. no metastatic disease in 26 lymph nodes, 0/26
Adenocarcinoma, Histologic Grade 1, well differentiated, tumor size ,0.2 x 0.1 x 0.1 cm, no tumor deposits

Classification: pT2 pNO

The pathology information that you posted above looks good -- no high-risk factors there at all.

Do you have access to the full pathology report? What you posted above is only an excerpt.

Before your next meeting with the doctor I think you need to go through the whole report, line by line, to see what is there.


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