Surgery this Winter 2017

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ocstacy
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Surgery this Winter 2017

Postby ocstacy » Sat Sep 09, 2017 9:45 pm

Hi all,

My mom has been finished with her radiation and chemo for almost a month now. She has mentioned that she feels like there is tissue just hanging out whenever she goes. She also has mentioned that now she is constipated and she always has the urgency to go. She goes to the bathroom about 3 times in an hour. I feel so bad cause there is nothing that I can do except help her w/ pain meds, and cook her meals. I thought her surgery would be in Oct but now they are looking into Dec. Did anyone feel this way with Rectal cancer after treatment? She still has a rash on her feet. The type of surgery that she will have is called Laparoscopic Proctectomy coloanal "hand sewn" anastomosis & diverting loop ileostomy. She will have a temp bag for 5-6 months and reversal after that. What was your experience with temp bag? Was it a relief ? She will have an MRI done next Thursday to see the stage is, etc.
Please share your story with similar experiences :D
Caregiver/daughter to dear mother age 77, diag.5/09/17
Rectal CA Stage 3A Low grade adenocarcinoma- 6 cm
Neoadjuv. Chemo/Rad. start 7/10/17 ended 08/16/17
Xeloda 2600 mg daily Rad.Onc Mon-Fri (28 days) -3 mth break now
Lap. surgery @ Keck USC, Dr Sang Lee-chief- Winter 2017 temp colostomy
Chemo Xeloda post surgery following reversal
Any Stage 3A survivors out there? Please share your journey
Praying 4 "Complete Response" or "NED"
Love my mom, BUTT she is a horrible patient! :roll:

NHMike
Posts: 326
Joined: Fri Jul 21, 2017 3:43 am

Re: Surgery this Winter 2017

Postby NHMike » Sun Sep 10, 2017 6:26 am

Friday was my last day of radiation and chemo so I'm just starting to recover but I did spend a lot of time on the toilet yesterday. Sometimes there's something there and sometimes it's just gas and sometimes I sit there because I think that something will come along. Sometimes there's an urgency and I kind of need to run and then it turns out to be nothing. I expect to be in this mode for for a while.

I also tend towards constipation (as have others I've chatted with) and take MiraLax daily to help with that. I am using Depends Shields which provides me with some confidence to be out and about without worrying about leaks or accidents. So far I haven't had any accidents but they do help to keep my clothes clean.

Helping someone cook meals is a big assistance. Helping someone with meds is a big assistance. I asked my wife to stay with my mother for a while when she was recovering from her heart attack at home and those were two things that she did. Messing up on meds can have pretty bad consequences and any help when it pain is welcome. It may be that they've delayed surgery so that she can better recover. How is her blood work? I would not be happy personally for surgery being pushed out myself as I want to get this thing out of me - whatever is still there.

I have not really looked into the temporary bag stuff yet and it may be permanent for me. I will spend more time on it as surgery approaches and I have run into some threads about them - so I'll have to dig them up.
Mike in NH:
Rectal Bleeding biopsy June 23, 2017, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Chemo (Xeloda) and radiation from 07/31/17 to 09/08/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9 to 1.8 after treatment.
KRAS Mutant KRAS p.Gly12Asp

susie0915
Posts: 156
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Surgery this Winter 2017

Postby susie0915 » Sun Sep 10, 2017 8:12 am

I finished radiation end of July, 2015. I had a sigmoidoscopy a couple weeks later and a pet scan the end of August. After the sigmoidoscopy my surgeon scheduled the surgery for September 9, 2015. So that was about 6 weeks after finishing radiation. It does seem like a long time to wait for surgery.

I know the radiation continues to work for quite some time after completion. I didn't really have any problems with bowel movements during or after radiation, just the pain from skin being burned, and pain when urinating, felt like passing glass.

I had a temporary ileostomy and had to have it reversed 4 weeks later. I had a bowel blockage caused by scar tissue and the surgeon had to do surgery so he said he would reverse the ileo while doing that surgery. I had problems with the ileo as my stoma (which is the intestines that sticks out of the abdomen) would start to bleed for no reason. I had an appt with the ostomy nurse the day after I went into the hospital to talk to her. She came to see me in the hospital and removed the bag and we sat there and watch the stoma begin to bleed. She couldn't figure out why. Since I had the reversal it became a non issue. I was to originally keep the ileo until after adjuvant therapy, since chemo can cause diarrhea. So once I did have chemo, I did have issues with diarrhea. The bag was easy to empty and I did adjust, just had the issues with the bleeding. I know there can be some dietary issues with the ileo, as it is located higher up where the small intestines are, so it is mostly liquid. I got mixed responses, my home care nurse told me I could eat anything, while the directions given to me to take home from the hospital listed some foods to avoid.

I had total response to the radiation as all that was left was scar tissue. Hopefully, your mom will show complete response or a lot of shrinkage of the tumor. You are being great with your mom, such a help to her. My daughter was so helpful also. Depending what pain meds she is taking, it can cause constipation or issues with bowel movements. Good Luck to you and your mom and hopefully as she recovers from the radiation things will get better.
57 yr old mother of 3
5/15 DX T3N0MO Stage 2A
6/15 5 wks of radiation/xeloda
7/15 sigmoidoscopy/scar tissue only
8/15 Pet scan NED
9/15 LAR
10/15 Bowel blockage. 3 1/2 weeks in hospital.
early ileo rev since
surgery to repair blockage. c-diff inf
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nodule onc thinks scar tissue
7/17 no change lung nodule
Currently NED

DarknessEmbraced
Posts: 2719
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Surgery this Winter 2017

Postby DarknessEmbraced » Sun Sep 10, 2017 10:11 am

I hope your mother's surgery in December goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17

Lee
Posts: 5076
Joined: Sun Apr 16, 2006 4:09 pm

Re: Surgery this Winter 2017

Postby Lee » Sun Sep 10, 2017 1:23 pm

Please understand I did treatment in 2004-2005. I had my surgery about 6-7 weeks after finishing radiation. I've heard where they like to push it out further than my 6-7 weeks because radiation is still doing it's job. You might want to ask why December. 4 months out seems like a long time.

Why is your mom on pain medicine? Pain medicine can cause constipation. Maybe increasing her liquid intake might help elevate the constipation some. Is your mom able to move around, walking might help too. Not to mention, it will help her prepare for her upcoming surgery.

Some people have problems with the ileo as it deals with liquid output and digestive liquid that can irritate the skin if it leaks. Finding the perfect wafer will help a lot there. Having an ileo will help if your mom need chemo. Chemo can cause exploding diarrhea. Here is a website you might want to check out.

http://www.ostomy.org/Home.html

They are the United Ostomy Association and can give you a lot of information about ileostomy. They too have a wonderful discussion board.

Hope this helps,

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!

MissMolly
Posts: 381
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Surgery this Winter 2017

Postby MissMolly » Sun Sep 10, 2017 5:43 pm

Ocstacy:
As someone with a permanent ileostomy, I can say that one of the most important aspects of adapting to a stoma is researching and finding the pouching system that is the best "fit" for each person's body type, abdominal typography, and skin characteristics.

Your mother will want to work with an ostomy nurse (called a WOCN - wound care and ostomy nurse) before and after her surgery. Pre surgery the WOCN can mark suggested sites for the stoma placement taking into account the type of clothing your mother wears and her body movements in sitting and standing. After surgery the WOCN can help make suggestions about pouching systems (wafers and bags). But recognize that WOCNs have their own personal preferences and that hospitals typically only stock one brand of ostomy supplies.

Your mother will also want to contact each of the major ostomy manufacturers to get an assortment of samples of wafers, pouches, and accessory supplies. Coloplast, Hollister, ConvaTech, and CyMed are the major ostomy product manufacturers.

There are literally hundreds of different ostomy supplies. The availability is mind-boggling. There is a perfect "fit" of a pouching system for everyone. Sometimes it takes trial and error and requesting samples of products to find the right "fit."

If your mother is short or petite in size, I recommend the Colopast Mio and CyMed lines. Both companies provide small mini pouches and smaller wafer circumferences. You can also look at pediatric ostomy supplies. I am a petite person, 5' 2" and 85 pounds, and use the Coloplast Mio mini pouch. It fits like a dream and is flexible and pliable. I barely notice that I am wearing an ostomy pouch. I have also used the Hollister pediatric wafers and pouches. They are nicely sized for an adult with a small body frame. Do not be afraid to think out of the box.

A critical accessory supply for anyone with an ileostomy is an adaptic ring. These serve like a gasket in a faucet and limit the potential for leaks. Adaptic rings go by the names: Ekin Cohesive Seal (ConvaTech) and Brava Adaptic ring (Coloplast) and Adapt Ring (Hollister). Ekin Cohesive Seals are the dominant favorite.

An ostomy wafer adheres to the skin by means of a hydrocolloid matrix that bonds to the skin by virtue of body temperature. Ostomy wafers do not have any glue or adhesive on their backing. To advoid undue skin irritation when removing a wafer, do NOT pull the wafer off of the skin. Rather, use your finger tips to push into the skin around the margin of the wafer thereby pushing the wafer away from the skin in small incriments.

For me, having an ostomy has not been a big deal. Having a gentle sense of humor can be helpful as stomas can be spontaneous like a geyser in releasing output. For all of the health challenges that I have faced, having an ostomy has not been that arduous.

The United Ostomy Association of America (UOAA) has a valuable support forum. Lee has been nice enough to include its internet link. Feel free to visit the UOAA support forum and seek support and wisdoms from a broad cross section of individuals with ostomies. Like the Colon Club, it is composed of a nice group of people who can help make life with an ostomy easier.
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

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ocstacy
Posts: 129
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Facebook Username: stacy

Re: Surgery this Winter 2017

Postby ocstacy » Mon Sep 11, 2017 2:46 am

I had my surgery about 6-7 weeks after finishing radiation. I've heard where they like to push it out further than my 6-7 weeks because radiation is still doing it's job. You might want to ask why December. 4 months out seems like a long time.


Thank you for sharing. Since my mom has a hard time with a receptive language, I will be going with her to her surgeon appt next Monday to talk to the Dr. about the MRI results and surgery plans. My mom has a hard time understanding anything these days. She is from Japan, and lately I have noticed that she has a harder time with memory, understanding things, paying bills, etc. etc. When I first surgeon back in June, he mentioned surgery 6-8 weeks after Chemo so we will know more in a couple of weeks. I think it's cause my mom was in too much pain for a rectal exam. Maybe he does want her to heal more, who knows. I hate waiting :cry:
Caregiver/daughter to dear mother age 77, diag.5/09/17
Rectal CA Stage 3A Low grade adenocarcinoma- 6 cm
Neoadjuv. Chemo/Rad. start 7/10/17 ended 08/16/17
Xeloda 2600 mg daily Rad.Onc Mon-Fri (28 days) -3 mth break now
Lap. surgery @ Keck USC, Dr Sang Lee-chief- Winter 2017 temp colostomy
Chemo Xeloda post surgery following reversal
Any Stage 3A survivors out there? Please share your journey
Praying 4 "Complete Response" or "NED"
Love my mom, BUTT she is a horrible patient! :roll:

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ocstacy
Posts: 129
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: Surgery this Winter 2017

Postby ocstacy » Mon Sep 11, 2017 2:49 am

If your mother is short or petite in size, I recommend the Colopast Mio and CyMed lines. Both companies provide small mini pouches and smaller wafer circumferences. You can also look at pediatric ostomy supplies. I am a petite person, 5' 2" and 85 pounds, and use the Coloplast Mio mini pouch. It fits like a dream and is flexible and pliable. I barely notice that I am wearing an ostomy pouch. I have also used the Hollister pediatric wafers and pouches. They are nicely sized for an adult with a small body frame. Do not be afraid to think out of the box


She is 5 foot 1, 115 pounds, petite. She is very stubborn. Thank you for sharing
Caregiver/daughter to dear mother age 77, diag.5/09/17
Rectal CA Stage 3A Low grade adenocarcinoma- 6 cm
Neoadjuv. Chemo/Rad. start 7/10/17 ended 08/16/17
Xeloda 2600 mg daily Rad.Onc Mon-Fri (28 days) -3 mth break now
Lap. surgery @ Keck USC, Dr Sang Lee-chief- Winter 2017 temp colostomy
Chemo Xeloda post surgery following reversal
Any Stage 3A survivors out there? Please share your journey
Praying 4 "Complete Response" or "NED"
Love my mom, BUTT she is a horrible patient! :roll:

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ocstacy
Posts: 129
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: Surgery this Winter 2017

Postby ocstacy » Mon Sep 11, 2017 2:40 pm

I also tend towards constipation (as have others I've chatted with) and take MiraLax daily to help with that. I am using Depends Shields which provides me with some confidence to be out and about without worrying about leaks or accidents. So far I haven't had any accidents but they do help to keep my clothes clean.


When my mom doing the radiation/chemo, she experienced Diarrea, now she is experiencing opposite, constipation. The rad oncologist suggested Miralax too. I suggested stool softneres and prunes. She goes in for MRI this Thur and has to fast and do an enema prior. Hopefully they will have good news for us! Thank you for sharing
Caregiver/daughter to dear mother age 77, diag.5/09/17
Rectal CA Stage 3A Low grade adenocarcinoma- 6 cm
Neoadjuv. Chemo/Rad. start 7/10/17 ended 08/16/17
Xeloda 2600 mg daily Rad.Onc Mon-Fri (28 days) -3 mth break now
Lap. surgery @ Keck USC, Dr Sang Lee-chief- Winter 2017 temp colostomy
Chemo Xeloda post surgery following reversal
Any Stage 3A survivors out there? Please share your journey
Praying 4 "Complete Response" or "NED"
Love my mom, BUTT she is a horrible patient! :roll:


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