Surgery is over

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Aqx99
Posts: 169
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Surgery is over

Postby Aqx99 » Sat Jun 17, 2017 1:43 pm

I'm home from the hospital! I still have a drain in, but hopefully that will be removed when I see my surgeon this week. I think I am going to make an appointment with the ostomy nurse for this week as well, since the nurse that put the bag on my ileostomy really didn't explain as she went and her hands were in the way most of the time. She wasn't an ostomy nurse (I looked at her name badge as she was bent over me), so I don't know why they sent her to put my bag on.
Anne, 39
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

Lee
Posts: 5185
Joined: Sun Apr 16, 2006 4:09 pm

Re: Surgery is over

Postby Lee » Sat Jun 17, 2017 3:47 pm

Glad to hear you are home, butt surprised that you did not see an ostomy nurse following your surgery. Have you seen one at all yet? Yes do make the appointment, the sooner the better. Do you have supplies if you need them?

Are you on a restrictive diet? Low fiber type diet?

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!

C2WAVE2
Posts: 24
Joined: Sun Apr 23, 2017 3:22 pm

Re: Surgery is over

Postby C2WAVE2 » Sat Jun 17, 2017 4:08 pm

Great! No place like home.
The ostomy bags are a little tricky..
I got good instruction before surgery and after on how to change them, and also on getting supplies..

Ive only changed two so far, on my own. The first one went well, but I think i forgot
to dry off the skin completely, before applying, and it didnt last as long as the others.. 4 days instead of 6-7 days
The second time, i had some trouble. Even though, I made sure I hadn't ate anything prior, so I was not outputting
I still did and all over the glue, made a mess and well, I had to waste a bag
and start over.. Next time I will be a little more patient to make sure I'm not in an outputting mode.. before sticking it on.
Again, Skin should be completely clean and dry when you stick it on.
4/24/17. 55yr Male, Dx RC near Retcum/Sigmoid junction
O4/28/17 Ct
O5/04/17 MRI
Prelim. T1 N0 M 0 CEA 3.2
O5/23/17 Surgery, LAR 4.5" incision to remove tumor Temp Ileostomy
6/1/17 Pathology report 6.5 x 4.3 x 1.7 cm tumor, Adenocarcinoma,
Moderately to Poorly Differentiated , 0/27 Lymph, T2N0M0
08/02/17 Ileostomy Reversal

Aqx99
Posts: 169
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Surgery is over

Postby Aqx99 » Sat Jun 17, 2017 4:31 pm

I saw an ostomy nurse before the surgery, but she said we would go over changing the bag in the hospital. This nurse was more interested in getting it done than teaching me anything. She even turned her back as she trimmed the wafer opening, without explaining what she was doing. I'm going to call on Monday and hopefully schedule the appointment for later that day or Tuesday. That way she can help with my first bag change. Otherwise, I'll do the best I can with the stuff I have learned on my own. Hopefully it will hold me over until I see her.

They have me on a low fiber diet. My mom is here and has already taken over meal planning with the diet in mind.
Anne, 39
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

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ANDRETEXAS
Posts: 560
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas

Re: Surgery is over

Postby ANDRETEXAS » Sat Jun 17, 2017 4:38 pm

Way to go....Drink, drink, drink......exercise when possible.....stay positive....and keep movin' forward.....
2014
2/10 - Colon resect
2/13 - DX- Stg IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT

ONE DAY AT A TIME !

C2WAVE2
Posts: 24
Joined: Sun Apr 23, 2017 3:22 pm

Re: Surgery is over

Postby C2WAVE2 » Sat Jun 17, 2017 4:55 pm

Good to get some help on first bag change..
I had nurse come to house and and she watched while i did it, and while
I did o k, it was still helpful having nurse there, she had suggestions ,like have a little bowl of soapy warm water in bowl
paper towels ready, good lighting, and mirror.

As far as diet. You may already know, but avoid skins of fruits, celery, seeds, nuts..
4/24/17. 55yr Male, Dx RC near Retcum/Sigmoid junction
O4/28/17 Ct
O5/04/17 MRI
Prelim. T1 N0 M 0 CEA 3.2
O5/23/17 Surgery, LAR 4.5" incision to remove tumor Temp Ileostomy
6/1/17 Pathology report 6.5 x 4.3 x 1.7 cm tumor, Adenocarcinoma,
Moderately to Poorly Differentiated , 0/27 Lymph, T2N0M0
08/02/17 Ileostomy Reversal

C2WAVE2
Posts: 24
Joined: Sun Apr 23, 2017 3:22 pm

Re: Surgery is over

Postby C2WAVE2 » Sat Jun 17, 2017 4:58 pm

As Andre mention, drink more than normal amount of water, as you not absorbing as
much since big colon not in equation.
4/24/17. 55yr Male, Dx RC near Retcum/Sigmoid junction
O4/28/17 Ct
O5/04/17 MRI
Prelim. T1 N0 M 0 CEA 3.2
O5/23/17 Surgery, LAR 4.5" incision to remove tumor Temp Ileostomy
6/1/17 Pathology report 6.5 x 4.3 x 1.7 cm tumor, Adenocarcinoma,
Moderately to Poorly Differentiated , 0/27 Lymph, T2N0M0
08/02/17 Ileostomy Reversal

Lee
Posts: 5185
Joined: Sun Apr 16, 2006 4:09 pm

Re: Surgery is over

Postby Lee » Sat Jun 17, 2017 5:48 pm

C2WAVE2 wrote:As far as diet. You may already know, but avoid skins of fruits, celery, seeds, nuts..


And stick with a low fiber diet while you ostomy is healing.

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!

User avatar
BeansMama
Posts: 952
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Surgery is over

Postby BeansMama » Sun Jun 18, 2017 1:32 am

So glad your surgery went well and you are up and moving already. I hope the loss of your ovaries wasn't too much of a shock and that you already had the family you intended to have (whether it included children or not).

I sometimes wonder why surgeons make these decisions without at least discussing the possibility first. Prior to surgery it wouldn't be too difficult to say while I am in there if x, y, or z looks dodgy I will take it out, is that OK with you? That way you have some advance notice and you can take measures if you need to such as having eggs frozen etc.
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

Aqx99
Posts: 169
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Surgery is over

Postby Aqx99 » Sun Jun 18, 2017 5:11 am

My surgeon had discussed the possibility with me. I had even discussed it with my mom the night before my surgery. When my surgeon called the waiting room to speak to my husband, he passed the phone to my mom because he was overwhelmed. My mom assured the surgeon that I was ok with removing my ovaries because I had told her so the night before. I told her anything he felt needed to be cut out should be cut out. My ovaries have never worked right anyway. I have Polycystic Ovarian Syndrome. Then the radiation for my cancer shut them down and sent me in to menopause. So losing them was no big deal.
Anne, 39
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

Aqx99
Posts: 169
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Surgery is over

Postby Aqx99 » Mon Jun 19, 2017 4:23 pm

I have an appointment with the ostomy nurse tomorrow to help with my first bag change. We plan on taking it as slow as possible, to make sure we learn correctly.
Anne, 39
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

AbbyDoo
Posts: 131
Joined: Wed Jun 29, 2016 2:25 am
Location: So.Ca.

Re: Surgery is over

Postby AbbyDoo » Tue Jun 20, 2017 1:41 am

Congratulations on your surgery and making it home.
I think it's terrible they sent you home not knowing how to change a bag. I had to do one with the he nurse watching before I was discharged. Make sure you drag your husband to your appointment today. It' is so much faster and easier to change a bag with an extra set of eyes and hands. I use to get everything ready and layed out. Jump in the shower,get all cleaned up and dry then my wife would come in an place the wafer and bag for me. :shock: I could do it butt it was a lot faster and easier when she helped.
Your stomach is going to be pretty sore for a couple week so ask for help getting out of chairs and the bed.
With your colon being bypassed it easy to get dehydrated and you don't want to go there. Drink lots of water and sport drinks.
Keep up the good positive attitude
53 yrs old
4/30/15 colonoscopy Mass found
5/21/15 staged 3 C rectal cancer
7/3/15 finished xeloda and radiation 28 rounds
9/30/15 LAR
10/29/15 picc line installed
11/2/15 start chemo 5 fu Oxaliplatin
3/7/16 Finish Chemo
4/29/16 Ileostomy Reversal.
7/13/16 colonoscopy clear.
CRC survivors know there Sh%t

Maelleous
Posts: 105
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Surgery is over

Postby Maelleous » Tue Jun 20, 2017 4:49 am

Good luck! Keep walking, your sig bio sounds similar to mine (except I didn't do the chemo first.) The ileostomy takes a while to get used to, but after having mine for 8+ months, you get more used to it than you would think. Will be happy to have it reversed though!
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!

michelle c
Posts: 1844
Joined: Wed Dec 02, 2009 3:58 am

Re: Surgery is over

Postby michelle c » Tue Jun 20, 2017 9:19 am

Have you been counselled or advised regarding HRT due to having your ovaries removed? Best wishes.
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

laura11103
Posts: 3
Joined: Wed Jun 14, 2017 2:22 pm

Re: Surgery is over

Postby laura11103 » Tue Jun 20, 2017 12:19 pm

Great news! I pretty much am to the point where they can remove any unnecessary body parts lol... I am a breast cancer survivor and don't miss them at all :-)


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