New here, my spouse colonscopy likely. Scared.

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Nycomomohead
Posts: 23
Joined: Sat Oct 30, 2021 7:34 pm

Re: New here, my spouse colonscopy likely. Scared.

Postby Nycomomohead » Sun Nov 21, 2021 9:32 am

Thank you.
Spouse, DX, 49F - Rectal Stage 1 - T2NOMO - 2CM - 7.8 from AV.
10.29.21 Rectal tumor 2cm, 10cm from AV | colonoscopy
11.01.21 Biospy - Malignant - adenocarcinoma
11.03.21 First consultation with Surgeon & Onc
11.04.21 CBC blood work looked good. CEA at 1.1
11.05.21 CT Scan. Good, no sign of spread. Precautionary Liver MRI scheduled.
11.09.21 MRI Pelvis. MRI Liver.
11.09.21 Staged as Stage 1. T2NOMO - 2CM - 7.8 from AV.

DarknessEmbraced
Posts: 3673
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New here, my spouse colonscopy likely. Scared.

Postby DarknessEmbraced » Sun Nov 21, 2021 11:03 am

I hope her surgery goes well. *hugs* I had an epidural put in whole in the OR which helped with pain while it was in. After that it was a dilaudid. I also was sent home with dilaudid. Hugging a pillow while coughing or sneezing helps it not pull as much on the incision. I had an open surgery in 2014 and had 23 staples.
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! :)

JJH
Posts: 352
Joined: Mon Apr 24, 2017 7:26 am

Re: New here, my spouse colonscopy likely. Scared.

Postby JJH » Mon Nov 22, 2021 12:20 am

Nycomomohead wrote:My wife and I have decided on to go with the original surgeon...

My wife's surgery is about 1 week out.

Any tips for me to help my wife for what is ahead is always appreciated.

Do you have a confirmed date for the surgery?
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Nycomomohead
Posts: 23
Joined: Sat Oct 30, 2021 7:34 pm

Re: New here, my spouse colonscopy likely. Scared.

Postby Nycomomohead » Mon Nov 22, 2021 1:06 pm

Yes, 11.30.2021
Spouse, DX, 49F - Rectal Stage 1 - T2NOMO - 2CM - 7.8 from AV.
10.29.21 Rectal tumor 2cm, 10cm from AV | colonoscopy
11.01.21 Biospy - Malignant - adenocarcinoma
11.03.21 First consultation with Surgeon & Onc
11.04.21 CBC blood work looked good. CEA at 1.1
11.05.21 CT Scan. Good, no sign of spread. Precautionary Liver MRI scheduled.
11.09.21 MRI Pelvis. MRI Liver.
11.09.21 Staged as Stage 1. T2NOMO - 2CM - 7.8 from AV.

JJH
Posts: 352
Joined: Mon Apr 24, 2017 7:26 am

Hospital tips

Postby JJH » Tue Nov 23, 2021 1:10 am

Nycomomohead wrote:... Any tips for me to help my wife for what is ahead is always appreciated...

1~~ Private room - Request a private room, with a private toilet/shower. This is much better than being assigned to a general ward with shared facilities.
2~~ Amenity kit - Prepare a personal effects "amenity kit" containing basic necessities that the hospital doesn't provide. Ask your wife what she will need, make a checklist of these things, and put all of these things in a separate bag so that everything is ready to be packed, and nothing on the list is missing when she leaves for the hospital. For example, toothpaste, toothbrush, comb, brush, shampoo, shower gel, washcloth/wet-wipes, packet of Kleenex, shower clogs, slippers, etc. You may need to check with the hospital first to see what they do and do not allow to be taken into the rooms. (My hospital did not allow any medications or food to be brought in, for example. All required meds and food had to be provided by the hospital under doctor supervision.)
3~~ Convenience tray - Get a small tray or basket to be kept on the rolling bedside table so that all of the essential items that your wife will need while in bed can be kept in this tray and will be within easy reach without requiring her to make painful movements to access these items. The items to be kept in the tray would be things that she is likely to want to access, day or night, without having to call the nurse to fetch the items from elsewhere in the room. The things to be kept in the tray would depend on your wife's preference, but some possibilities might be: a pencil, a notepad, a cell-phone, a small flashlight or penlight (to see things after the lights have been turned off for the night), a small clock, eyeglasses case, eye mask, ear plugs, hand gel, small bottle of water, remote control for the TV, etc). The purpose of the tray is to have something with low sides that will keep the articles all in one place close at hand and keep the items from rolling off the table or falling on the floor. She might also want a small pillow/cushion to supplement the big pillow provided in the room.
4~~ Call button - The call button for calling the nurse should be placed close at hand and easy for her to reach without straining. It could be taped at eye level on the bed railing or in some other easy-to-reach place. This is so that the call button stays in the same place and she always knows where to find it when she needs it.
5~~ Messenger status - If you are allowed to visit her room during visiting hours, you could take this as an opportunity to go to the nurses station and talk to the head nurse to ask for whatever special assistance your wife may need (e.g., to request a wheelchair or walker for the room, or to negotiate a better meal menu, to make a request, or make a complaint, to ask when the drain tubes are going to be removed, or to ask when the doctor is going to arrive, etc.). Also, you could bring a box of chocolates to the nurse's station for all of the nurses to share.
6~~Tips for Being a Successful Caregiver - https://www.cancer.net/coping-with-cancer/caring-loved-one/tips-being-successful-caregiver
Last edited by JJH on Wed Nov 24, 2021 2:29 pm, edited 1 time in total.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Rock_Robster
Posts: 620
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: New here, my spouse colonscopy likely. Scared.

Postby Rock_Robster » Tue Nov 23, 2021 1:45 am

And a 10 foot phone charging cable :D
39M Australia
2018 Dx RC, 12cm from AV
Mod diff, EMVI+, LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then 2.0-3.1. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection #1
5/19 25x pelvic IMRT radiation
07/19 ULAR w ileo, 1/27 LN+
08/19 Liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection #2
02/20 Ileo reversed
03/20 NED since Dec ‘19
11/21 35mm liver lesion; celiac LN. Some v. small (<2-3mm) lung things
12/21 PVE
1/22 Planned liver & node resection (TBC)

Nycomomohead
Posts: 23
Joined: Sat Oct 30, 2021 7:34 pm

Re: New here, my spouse colonscopy likely. Scared.

Postby Nycomomohead » Tue Nov 23, 2021 11:27 am

Thank you so much, everyone. All your suggestions and guidance are appreciated.

I am following up on some of these, being mindful of not overstepping to "annoying".
Spouse, DX, 49F - Rectal Stage 1 - T2NOMO - 2CM - 7.8 from AV.
10.29.21 Rectal tumor 2cm, 10cm from AV | colonoscopy
11.01.21 Biospy - Malignant - adenocarcinoma
11.03.21 First consultation with Surgeon & Onc
11.04.21 CBC blood work looked good. CEA at 1.1
11.05.21 CT Scan. Good, no sign of spread. Precautionary Liver MRI scheduled.
11.09.21 MRI Pelvis. MRI Liver.
11.09.21 Staged as Stage 1. T2NOMO - 2CM - 7.8 from AV.

JJH
Posts: 352
Joined: Mon Apr 24, 2017 7:26 am

Re: New here, my spouse colonscopy likely. Scared.

Postby JJH » Wed Dec 01, 2021 11:38 pm

How is your wife's post-surgery recovery going now?
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Nycomomohead
Posts: 23
Joined: Sat Oct 30, 2021 7:34 pm

Re: New here, my spouse colonscopy likely. Scared.

Postby Nycomomohead » Thu Dec 02, 2021 6:28 am

Sorry for not posting sooner.

My wife had surgery on Monday. The surgery started at about noon. It was a long wait and continued prayer. Our Surgeon who is wonderful and caring, called me while wrapping up. He informed me all was going well, that he had good margins, and based on his experience is confident that this is a stage 1 pending biopsy. As expected, a temporary ileostomy was required.

Due to covid regs, limited visiting. However, I headed down there to wait to see if I could see her. They let me into the PACU at about 10:00 PM. The hospital was short on beds in rooms, so she would likely stay overnight. My wife looked good, after a long surgery. Some cramping, but she was feeling good after such a big surgery. She didn't have a spirometer, so I asked for one. My wife was tired, said she wanted to sleep, and asked that I go home.

I called at 6:00AM the next morning to check her status. The nurse said she was good but was complaining of pain. I headed down there, to see her again, and my wife was upset because she did not receive the PCA drip as I discussed with her as we prepped for surgery.

While I was there, I saw the Surgeon. Expressed my concerns, and when he thought a room may clear up. They got the PCA in and I helped her through the next couple of hours, including drinking some broth and a bit of jello. The PCA took effect, but I noticed perhaps a bit too much. My wife is sensitive to meds.

I gently texted the Surgeon when I had to leave, and advise this. He is wonderful. He said he would check. My wife informed me that he went down there and they adjusted the meds once he asssesed.

My wife was moved to a private room that evening. She presented a fever that night. They did an x-ray and gave Tylenol, and the fever has abated.

Yesterday was a day in which the meds were being adjusted, and she was assisted into a recliner (all day). Nutrition met her, stoma, and the new floor nurses, stoma nurse. PT had not arrived by the time I left at night, so walking I think should be on the agenda for today.

She did take her first steps from the recliner to the bed. It was really tough for her. Her catheter was also removed, so she will be encouraged to go to her bathroom when she needs to (another step).

That's the current status. I will post more when I get a chance.

Thank you all again, prayers for everyone.
Spouse, DX, 49F - Rectal Stage 1 - T2NOMO - 2CM - 7.8 from AV.
10.29.21 Rectal tumor 2cm, 10cm from AV | colonoscopy
11.01.21 Biospy - Malignant - adenocarcinoma
11.03.21 First consultation with Surgeon & Onc
11.04.21 CBC blood work looked good. CEA at 1.1
11.05.21 CT Scan. Good, no sign of spread. Precautionary Liver MRI scheduled.
11.09.21 MRI Pelvis. MRI Liver.
11.09.21 Staged as Stage 1. T2NOMO - 2CM - 7.8 from AV.

JJH
Posts: 352
Joined: Mon Apr 24, 2017 7:26 am

Re: New here, my spouse colonscopy likely. Scared.

Postby JJH » Thu Dec 02, 2021 2:45 pm

Nycomomohead wrote:... As expected, a temporary ileostomy was required.
... Her catheter was also removed, so she will be encouraged to go to her bathroom when she needs to ....

Thanks for the update. One more thing while I'm thinking about it:

Although your wife's colon will be off-line for the next six weeks or so because of the ileostomy, this doesn't necessarily mean that nothing will come out of the back passage for the next six weeks. Actually, during this time the colon and rectal stump will continue to secrete mucous, and this will eventually build up and have to come out. Maybe the nurses have already mentioned this to your wife, but if not you might tell her about it.

The mucous secretions might mix with food particles that could have been left over from an imperfect colon clean-out prior to surgery, and they might also mix with coagulated blood left over from the surgery itself. If these secretions come out eventually, they will probably be brownish or black in color, not necessarily white. This is not necessarily something to be worried about. It's just normal for the colon to purge itself every once in a while.

You can read more about mucoid plaque here:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=62646&p=493452#p493452
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

JJH
Posts: 352
Joined: Mon Apr 24, 2017 7:26 am

Re: New here, my spouse colonscopy likely. Scared.

Postby JJH » Thu Dec 02, 2021 5:06 pm

Nycomomohead wrote:...It was a long wait and continued prayer... prayers for everyone.

If your wife is interested in prayers and meditation, you might want to let her know about a 25-day devotional for the Christmas season. This book was written by a long-time Colon Club member and officer, and it is especially targeted for the Advent season, which started this week.

https://www.danielleripleyburgess.com/unexpected-advent-devotional/

If you wife is not interested in this, that's OK, too. I just wanted to let her know just in case she might be interested.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Nycomomohead
Posts: 23
Joined: Sat Oct 30, 2021 7:34 pm

Re: New here, my spouse colonscopy likely. Scared.

Postby Nycomomohead » Thu Dec 02, 2021 10:08 pm

You are so kind, thank you.
Spouse, DX, 49F - Rectal Stage 1 - T2NOMO - 2CM - 7.8 from AV.
10.29.21 Rectal tumor 2cm, 10cm from AV | colonoscopy
11.01.21 Biospy - Malignant - adenocarcinoma
11.03.21 First consultation with Surgeon & Onc
11.04.21 CBC blood work looked good. CEA at 1.1
11.05.21 CT Scan. Good, no sign of spread. Precautionary Liver MRI scheduled.
11.09.21 MRI Pelvis. MRI Liver.
11.09.21 Staged as Stage 1. T2NOMO - 2CM - 7.8 from AV.

JJH
Posts: 352
Joined: Mon Apr 24, 2017 7:26 am

Re: New here, my spouse colonscopy likely. Scared.

Postby JJH » Fri Dec 03, 2021 12:25 am

Nycomomohead wrote:... PT had not arrived by the time I left at night, so walking I think should be on the agenda for today...

Another point: When your wife sees the physical therapist this week she could ask about clinics nearby that do pelvic floor muscle rehabilitation. This is something that your wife will eventually have to deal with since she will likely have some LAR Syndrome effects after her reversal surgery.

In about 2 weeks or so she should probably start doing Kegel exercises to maintain the muscle tone of the pelvic floor muscles. She may even want to look into registering with a nearby clinic that specializes in pelvic floor rehabilitation and that has the various bio-feedback devices that will help facilitate the rehabilitation of the sphincter muscles, pelvic floor muscles, neural connections, etc., that underly the synchronization of the normal defecation process. She could talk to the physical therapist to see if she can get some useful tips on how to handle LARS when the time comes to deal with it.

https://pelvicrehab.com/
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Rock_Robster
Posts: 620
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: New here, my spouse colonscopy likely. Scared.

Postby Rock_Robster » Fri Dec 03, 2021 1:29 am

Great to hear she made it through the surgery without major complications! Now on to recovery and healing.

Hopefully she is adjusting ok to the ileostomy, and likely for the next few weeks there will be some trial and error in getting these things right, as her stoma shrinks and bowel movements normalise. Also very important to avoid dehydration during this time, as she will not be absorbing water through her colon.

As JJH mentions, the next challenge she may face after ileostomy reversal is dealing with some degree of LARS at least for a period. How bad and how long will depend on many factors, particularly how high the original tumour was and hence how much of a “neorectum“ she has left. There is not a huge amount that can be done about this now, with the exception of a couple of things:

1. Research suggests that shorter ileostomy durations are better than longer, so good to discuss with the surgeon how long they expect to keep it (I have seen some studies suggesting <6 months is better than >6 months; and the shorter the better).

2. The rectal muscles have been traumatised, and will atrophy fast if not used. Likewise many nerves have been severed, and need to learn to work together again. When the surgeon agrees, Kegel exercises and/or pelvic floor therapy can be very helpful - as JJH suggests.

My tumour was ~10cm high, leaving me with about 1/3rd of a rectum. I describe my experience after reversal as “2 weeks useless, 6 weeks very unpleasant, 3 months manageable, 12 months pretty good, and 18 months pretty close to normal (I now just take Imodium and avoid some foods).

Best of luck for a nice quick discharge home!
39M Australia
2018 Dx RC, 12cm from AV
Mod diff, EMVI+, LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then 2.0-3.1. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection #1
5/19 25x pelvic IMRT radiation
07/19 ULAR w ileo, 1/27 LN+
08/19 Liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection #2
02/20 Ileo reversed
03/20 NED since Dec ‘19
11/21 35mm liver lesion; celiac LN. Some v. small (<2-3mm) lung things
12/21 PVE
1/22 Planned liver & node resection (TBC)

DarknessEmbraced
Posts: 3673
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New here, my spouse colonscopy likely. Scared.

Postby DarknessEmbraced » Sat Dec 04, 2021 8:27 am

I'm glad she's doing well. :) Walking does help. I started out in the recliner next to my bed after my surgery in 2014. I slowly started walking around the floor by the nurse's station etc. A robe and slippers were nice to have.
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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