Mom's surgery is set for 10/17/17

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ocstacy
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Mom's surgery is set for 10/17/17

Postby ocstacy » Mon Sep 25, 2017 10:36 pm

Hi all!

We went to our follow up visit today with the Colorectal surgeon and went over the MRI results and surgery plans. We were so anxious prior to this appointment not knowing the unknown :? We prayed the whole drive there. She cried, I cried, and I prayed out very loud to be strong for my mom. The Dr. came to us with positive news in the beginning. He mentioned that the MRI looked good and he can save her sphincter muscle as the tumor stayed away from it and there was enough clearance to operate. He said that the outlook looked good, and there COULD be a cure but nothing is 100% of course. :mrgreen: My mom would have to continue Chemo (Xeloda) after surgery for 6 months which she is not very happy about and also the temp ileostomy which she was also VERY unhappy about.

Surgeon also mentioned that 99% of his patients end up with NOT a permanent colostomy and that the reversal is usually successful with time. The surgery is set for 10/17/17 which is coming up so soon. I'm even a l little anxious for my mom but I will be there for her and plan on spending the night at the hospital with her since we live far away. I will also stay the night at a friend's home while she is at the hospital. The nurse talked to us about the care, and how to use it, etc. The surgery will take about 4 hours. My mom has never had surgery her entire life so this will be a first. She is super nervous as it's approaching very soon. She cried on and off the whole way home. I gave her support, and told her how lucky she was to have found this wonderful surgeon! I really do trust him with all of my heart. The only negative thing that he had mentioned is that, 80% of the time, Cancer can come back...if not monitored following end of treatment :| I, of course, did NOT like hearing that, but it is what it is. I even recorded our conversation and replayed it in the car and he did say that. Boo, I hate the truth. :| I will take it as an honor and will spend as much time as possible with my mama and hope she gets a No Evidence of Disease or Complete Response! <3 She is very lucky, because I live right next door to her! :P (like My Greek Wedding movie :roll: :lol: ) We literally see each other like 3-4 times a week :!: For the most part, we BUTT heads :| :oops: 8) :roll: :idea:

Looks like I will be camping out with mom at the hospital. Hopefully they have some good food! :lol: :D Here are some questions about Temp Ileostomy:

1. How long did it take for you to get used to it?
2. How the healing process after surgery?
3. Did you have a reversal or perm colostomy after?
4. Did or can you travel? I really want to travel with my mama, maybe with the ileostomy it will be more comfortable not being it in the bathroom all the time?

I wanted to share with you our Colorectal Surgeon who I found on Yelp.com. Dr. Sang Lee from USC Keck Medical http://www.surgery.usc.edu/colorectal/d ... ancer.html
I have complete 100% faith and trust in him. He is one of the best Colorectal surgeons in the country!
Thank you for your time reading this :D
Last edited by ocstacy on Tue Sep 26, 2017 10:46 pm, edited 7 times in total.
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: Mom's surgery is set for 10/17/17

Postby Basil » Mon Sep 25, 2017 11:13 pm

Hello. I am/was stage iii. Im actually sitting in a bed at MD Anderson after having my temp ileo reversed today. First, I think there's some confusion about the 80% chance of recurrence. Either that or your mom has some strange circumstances I have never heard of. My onc had the number flipped. Said for my stage iii there was a 75-80% chance it would never come back. I had a very good response to pre-surgery chemo (I was on a trial with a non-standard treatment plan) and he said that number is bumped up well above 90%. I'd ask for some clarity on the percentages.

As to your questions, everyone handles the bag differently. Some people actually prefer it. The mechanics of it are pretty easy to learn. But to be honest I was in the category that never saw eye to eye with the bag. I got used to it but having it always bugged me. Part of that is my job requires a lot of long sit downs in quiet court rooms and meetings.

I felt like I'd been hit in the midsection with a baseball bat after surgery. With the meds, there was no acute pain but a lot of soreness. It hurts to flex your abdominal muscles after surgery so little things like getting out of bed were challenging. The good news is this got better after a few days. I was getting around pretty easily after a week and weaning off the pain meds.

My ileo was temporary, obviously. Whether it's permanent or not is largely determined by distance from the anal verge. Mine was 7 cm. I now people who went temporary at 5 cm. Your surgeon should have a pretty good fix on whether it's permanent or not but sometimes they just can't say for sure until they get in there.

One piece of advise that I suspect others hear will strongly second: if you have any questions or doubts whatsoever, get a second opinion, preferably from a major cancer center.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

Mercy110
Posts: 118
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Re: Mom's surgery is set for 10/17/17

Postby Mercy110 » Mon Sep 25, 2017 11:44 pm

My mum is having a temp stoma and i think she accepted it alright. It is about 3 months from the surgery and she is able to take care of the stoma by herself. We did encountered lots of difficulties at first like red skin but we manage it well afterwards. 3 tips on that:
1. find a bag that is suitable and comfortable for use
2. can try stoma powder for red skin
3. seek opinion from the nurse when you are not sure

The healing process went well too. She has to eat enough and do some exercise day by day. It first started with sitting, the standing and walking. My mum said it would be hurt while moving the body around, but these activities are necessary.

The doc told us the stoma will last for 3 months originally, but then he told us it will be close after chemo. As my mum is having lung mets after 2 rounds of chemo, it seems that it is temporarily impossible for her to close the stoma. We have asked her how does she feel abt it, she is kind of discouraged but still she can manage it. Just hoping the chemo are now working.

Best wishes to your mum and your family too. God Bless.
My Mum (age 56), NRAS-mutate Q61R (from HK)
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda Only. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: CEA:178, started Irinotecan+Zaltrip+TS-1, 25 times radio with xeloda
2020: CEA up, Stivarga for 6 months
2021: CEA up, 7L O2 and 24-hour morphine, on pc care
At peace 2021.4.14

88kaw88
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Joined: Sun Sep 24, 2017 7:41 am

Re: Mom's surgery is set for 10/17/17

Postby 88kaw88 » Tue Sep 26, 2017 12:08 am

I have a temp (hopefully). Currently 1 month after surgery. The bag is tough for me because I feel like I can't currently do the things I did pre surgery (golf, shoot, carry my kids around) part of that is I'm still healing so quite limited. The biggest issue I have with the bag is changing it. I haven't quite mastered it, but hopefully it will come with time. I would suggest some type of home health help if available to assist in changing. I have been lucky with leaks, and it takes getting used to at night if you are a stomach sleeper. The surgery is very invasive, but they do a great job with meds, and as above said, the first few days are tough moving around and getting In and out of bed. They want you up and walking asap after surgery. My care was a bit limited at MD Anderson as the hurricane was hitting 2 days after my surgery and the staff was forced to stay there...couldn't have visitors, limited menu etc. I'm a it nervous as to handling the bag with effects of chemo, which starts Wednesday, but think I will just have to figure it out. One other thing, your diet is very limited at first, but I have been lucky as far as handling most foods I eat and output isn't that high. Best of luck to your mother. I had never had surgery before either (38 years old), so was having some of the same concerns as your mom...but here I am. :D

Aqx99
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Re: Mom's surgery is set for 10/17/17

Postby Aqx99 » Tue Sep 26, 2017 2:29 am

Your ostomy nurse is a wonderful resource, use her. Ask questions, go see her for the first pouch change out of the hospital. She can look at your mom's stoma and belly and figure out the best system for her. What works for one person might not work for her, it is a very personalized process. It takes some getting used to, having a piece of your intestine sticking out your belly. I was fascinated when I watched it move for the first time. I have a degree in biology and had learned about peristalsis (the muscle contractions in the digestive tract that move the food through), but it was amazing to see it in person on my own body.

Body image issues can be a problem after a surgery like this. I keep reminding myself that my ileostomy was a necessary part of saving my life. It may help to see if your mom's cancer center has an oncology counselor. I have been seeing mine for a couple months and she is wonderful.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

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Shana
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Re: Mom's surgery is set for 10/17/17

Postby Shana » Tue Sep 26, 2017 2:51 am

Sending my best wishes to your mom and to you. It sounds like you have found a gifted surgeon and a promising outcome. My only previous surgery was a c-section for my youngest child, totally different experience so I can understand her fear. My colostomy was life saving due to a blockage, I had very little time to worry and all went very well with no complications.

My colostomy is transverse located to the right of my navel so very close to iliostomy site. I'm not sure why surgeons choose to do one over the other but from what I have read on these boards it sounds like temporary iliostomies are very common. Mine is permanent unless I can go NED long enough to warrant removal and resection of the primary tumor so I'm learning to live with BB, I named her because she has a will of her own and I sorta talk to her when I get frustrated! Hopefully your mom will manage all the challenges ahead with your help and care. Your devotion to her is a beautiful thing :)

(((Hugs)))
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

DarknessEmbraced
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Re: Mom's surgery is set for 10/17/17

Postby DarknessEmbraced » Tue Sep 26, 2017 12:19 pm

I hope that your mother's surgery goes well!*hugs* Wonderful her tumor has shrunk! She's lucky to have such a caring daughter who lives nearby! :)
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
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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juliej
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Re: Mom's surgery is set for 10/17/17

Postby juliej » Tue Sep 26, 2017 5:37 pm

ocstacy wrote:Here are some questions about Temp Ileostomy:

1. How long did it take for you to get used to it?
2. How the healing process after surgery?
3. Did you have a reversal or perm colostomy after?


1. I got used to it pretty quickly. Having an ileostomy is actually a good thing during chemo because you don't have to worry about finding a bathroom when diarrhea hits in a public setting! :shock:

2. There are two tricks to healing quickly after surgery. One is walking. Make sure she walks as soon as possible after surgery and later on at home. Walking stimulates blood flow and sends growth hormones to the surgical incision so it closes up faster. The other trick is to eat lots of protein (after she is cleared for regular meals). Eating lean, low fat protein helps your body repair itself.

3. I had an ileostomy and then a reversal about 3 months later. I named my stoma "belly butt"! :D

Arrange for a visit with an ostomy nurse before your mom's surgery. She can mark the site for the ileostomy and make sure it doesn't interfere with the waistband of pants, skirts, underwear, etc. She can also give you a ton of info on how to look for problems, how to change the appliance, etc. Also, make sure you take some loose-fitting pants (like sweat pants) for her to wear home from the hospital. After a few weeks she can wear something like a maternity belly band if she wants to hold the bag more firmly to her body. It's kind of like wearing a running bra for your ileo -- just feels more snug and comfortable.

I also never had surgery before so I can empathize with your mom's feelings. Tell her to trust her docs and that her job is just to take a nice long nap and let them do their job. Make sure she gets all of her questions answered before 10/17 so she feels like she knows everything that's going to happen. And feel free to ask more questions here!

Hugs to you and your mom!
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

Aqx99
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Re: Mom's surgery is set for 10/17/17

Postby Aqx99 » Tue Sep 26, 2017 7:53 pm

ocstacy,

I think you need to clear more messages out of your inbox. I have another pm to you waiting in my outbox. Sorry to keep bugging you about this!
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

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ocstacy
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Re: Mom's surgery is set for 10/17/17

Postby ocstacy » Wed Sep 27, 2017 3:20 pm

think you need to clear more messages out of your inbox. I have another pm to you waiting in my outbox. Sorry to keep bugging you about this!


I don't know how :-(
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Mom's surgery is set for 10/17/17

Postby NHMike » Wed Sep 27, 2017 6:46 pm

Hello Stacy,

You're mom is ahead of me by one to two weeks (I get a date around October 6 after MRI) and I'm obviously asking the same questions that you are. Your mom sounds like me in not going to hospitals but I've accepted that I may have a permanent or temporary. I may not like or want it but I try to be pragmatic. Best wishes for your mother and I completely understand your prayer parts and I have many to pray for here and elsewhere.

mike
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

SweetC80
Posts: 103
Joined: Fri Sep 01, 2017 1:28 pm

Re: Mom's surgery is set for 10/17/17

Postby SweetC80 » Thu Sep 28, 2017 8:25 am

1. How long did it take for you to get used to it? My mom got a perm ileostomy, but she got use to is pretty quick she still hates dealing with it though. She says it's easy to take care of but a pain. She was trained in the hospital and has asked for some retraining at times with new equipment. It does take getting use to and getting the best seal, so don't be surprised if there are leaks and things to work through.
2. How the healing process after surgery? My mom had her entire colon, rectum, and anus removed. Also a total hysterectomy and some reconstructive surgery on her bum, and she did fantastic. She was in the hospital only 6 days and was feeling pretty good within a couple weeks.
3. Did you have a reversal or perm colostomy after? My mom's is perm since they couldn't save anytging small intestine down.
4. Did or can you travel? I really want to travel with my mama, maybe with the ileostomy it will be more comfortable not being it in the bathroom all the time? Yes you can. My mom is learning what she can eat and when and what kind of output to expect. If she knows she's going to be out for awhile she might not eat more then so much and take immodium and just some other tricks she learns along the way so she isn't stuck in a pickle with a full or bloated bag.

May prayers to you and your mother for a successful surgery and NED from then on.
My Mom
12/16 Stage IIIb Rectal Ca CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon, Rectum & Anus removed Perm Ileostomy Bag
7/17 FOLFOX
9/17 Stage IVb 9cm Liver Met & 7mm Lung Nodule CEA 197
9/17 FOLFIRI CEA 160
10/17 Confirmed KRAS Pos CEA 210
11/17 Met growths Liver 10cm & Lung 8mm CEA 425
12/17 FOLFOX again Met growths Liver 13cm & Lung 1cm CEA 405
12/17 Xifaxan due to Hepatic Encephalopathy
12/17 New 2cm liver Met
1/18 CEA 992
2/8/18 Passed Peacefully

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JJH
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PM Inbox management

Postby JJH » Thu Sep 28, 2017 11:07 am

ocstacy wrote:
think you need to clear more messages out of your inbox. I have another pm to you waiting in my outbox. Sorry to keep bugging you about this!


I don't know how :-(

Once you delete some old Inbox messages there will be room for new ones to arrive.(Do you still need help on how to delete Inbox messages? Normally what you do is Mark each message you want to delete then go to the bottom of the Inbox and select the Delete option, tnen click on GO)

You can also create up to 4 extra folders to hold even more incoming Messages. The page for setting up extra folders and rules is here:

http://coloncancersupport.colonclub.com/ucp.php?i=ucp_pm&mode=options
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
●●●

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ocstacy
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Re: Mom's surgery is set for 10/17/17

Postby ocstacy » Fri Sep 29, 2017 1:13 am

As to your questions, everyone handles the bag differently. Some people actually prefer it. The mechanics of it are pretty easy to learn. But to be honest I was in the category that never saw eye to eye with the bag. I got used to it but having it always bugged me. Part of that is my job requires a lot of long sit downs in quiet court rooms and meetings.


I really hope that is the case for my mom since she pretty much lives in the bathroom. I hope this will have some type of relief. She has lost 4 pounds after chemo/radiation which is weird. I know why now. She said she stopped drinking her "Ensure" drinks.

Do you drink those too?
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

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ocstacy
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Re: Mom's surgery is set for 10/17/17

Postby ocstacy » Fri Sep 29, 2017 1:24 am

You're mom is ahead of me by one to two weeks (I get a date around October 6 after MRI) and I'm obviously asking the same questions that you are. Your mom sounds like me in not going to hospitals but I've accepted that I may have a permanent or temporary. I may not like or want it but I try to be pragmatic. Best wishes for your mother and I completely understand your prayer parts and I have many to pray for here and elsewhere.


Hi Mike,

Yes I do remember you. How are you doing with the chemo/radiation? Have you by any chance had her last week of radiation? My mom handled the chemo radiation pretty good, but the last week was the most intense for my mom. It was more like the 2-3 weeks after her last treatment that really hit her hard. She said her pain level was a 9 couple weeks after. I felt so bad for her, but now she just camps in the bathroom. For the MRI, she had to do the KY injection in her BUTT, and enema prior. She has lost some weight after the radiation.. like 4 pounds. I told her to keep drinking the Ensure drinks cause she she stopped. Have you lost weight? I am trying to fatten her up for her surgery. The dr. gave us some special "Ensure surgery drink" to take before and on the day of surgery https://ensure.com/nutrition-products/e ... re-surgery Also he wants her to drink Enhanced recovery https://www.nestlehealthscience.us/bran ... d-recovery

Also, she will get a temp ileostomy for 6 months (which I thought was a long time) then have the reversal after that. I sure hope that she is in "less pain" than she is now.
Read:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3604918/

Many prayers to you and everyone. PS) I read about the ilestomy
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.


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