Post Surgery Issues

Please feel free to read, share your thoughts, your stories and connect with others!
Bwat811
Posts: 2
Joined: Thu Apr 01, 2021 12:36 pm

Post Surgery Issues

Postby Bwat811 » Thu Apr 01, 2021 1:13 pm

All,
I was diagnosed with stage 3c Colon cancer last year. I had a lovely time with chemo and radiation, doing a few months of both together followed by 4 months of infusions. I nearly died from a massive pulmonary embolism which required surgery to remove 39 clots from my lungs (this is a very risky part of chemo so please look out for symptoms if you are not already) The chemo/radiation combo seemed to be the 1-2 punch necessary to reduce my tumor to nearly the size of....something too small to find on a CT scan. My team of Oncologists strongly recommended that I have surgery for a resection just for laughs (actually they said a bunch of fancy doctor gibberish that I understood as "blah blah blah, you will get cancer again without surgery")

So off I go to surgery. I feel like this would be a good time to note that my surgery was specified as an "ultra low colon resection" which is doctor for "this will probably suck a lot" Lucky for me, I had worn my lucky underpants the day I met my surgeon and got in on a new "never been done in the US" trial procedure. I won't get into that too much, but the short version is I did not get the normal illeostomy or diverted whatchamacallit. I had an implant that gave me 10 straight days of unbelievable fun and games before it was taken out and then I was supposed to be on the fast track to recovery. If you want that story you will need to ask, Its a real good bedtime story for the kids.

Now the real reason I am here: Is there anyone else suffering from post surgery/resection bathroom issues? I of course have reached out to my surgeon and oncologist who are great with cutting me up and filling me full of questionable chemicals but have been no help whatsoever with my current problems. I have terrible days where I need to #2 every 30-40 minutes for 12 hours at a time. This is great because it has the added bonus of turning my backside into the set of a horror film. I have tried fiber, OTC IBS meds, some luck with Zophran....can anyone help with this? Ideas? Am I the only one?

User avatar
beach sunrise
Posts: 1027
Joined: Thu Mar 05, 2020 7:14 pm

Re: Post Surgery Issues

Postby beach sunrise » Thu Apr 01, 2021 10:33 pm

Hi, do you take a pre or probiotic?
I take both and also IV vitC for gut health. Milk Thistle is also good.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: Post Surgery Issues

Postby Gravelyguy » Thu Apr 01, 2021 10:50 pm

Sorry you are going through this. Glad you still have your sense of humor. Unfortunately you will need it a while longer, but it will get better.

Smaller meals more often seemed to help for me and I took extra probiotics during this phase and still do. For the back side I would suggest Dreft soaks in the tub.

You can do a search about LAR syndrome on here find some very good discussions. All of us who had LAR surgery have some form of it.I am coming up on 3 years since reconnection surgery and am still getting better and finding new tricks. My latest is rice crispy treats for lunch. It seems to slow things down and tastes good too!

Hang in there. It takes a while to get a better normal.

And please tell about the new surgery.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

Bwat811
Posts: 2
Joined: Thu Apr 01, 2021 12:36 pm

Re: Post Surgery Issues

Postby Bwat811 » Fri Apr 02, 2021 5:32 pm

Thank you for the recommendations! I am taking a pre and pro biotic, I have not seen notable results just yet. I will look into the LAR syndrome topic. Thanks again!

As for the resection; it was done robotically. I had a new device implanted in my colon. Don't quote me on this, but I think it was called a cologaurd cg2000? Something like that. Not sure if this is all top secret, so keep this between us :wink:
Here's the gist of it: they place a sleeve that attaches above the resection site and extends through the anal opening which allows the stool to safely pass through while protecting the surgery site. After 10 days, they fill your bottom up with cool deyes, flip you upside down on what I am guessing is an 8 million dollar x-ray scan and torture bed to check for leaks. If there's no leaks, they yank it out. Yes...yank is the medical term for that process. It's great! After that it's adios tubes and good luck not crapping your pants for the rest of your days.
Bonus things:
They stitch the dangly cables needed to operate the sciency part of the device to the inside of your thigh....you know....the sensitive part. So when it gets all poopy you pull on it to clean it up...so fun!
The poop chute extended down a few inches and liked to roll up into a poop trap that was impossible to clean by yourself. My poor wife now has a Porsche and a house on the beach for her pain and trauma.
As you can imagine there is no stopping anything, so you get to play digestive chutes and ladders for the time being. It's hard to look handsome in a giant man diaper hobbling around post surgery, but I of course pulled it off. My wife couldn't keep her hands off me. Her dirty dirty hands.

I had kidney cancer in 2019 and they removed the whole thing. I would definitely rather do that again than anything with my colon. However, I am sure it is better than most and I cannot complain about the end result. No bags, or second surgeries.

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

Re: Post Surgery Issues

Postby NHMike » Sat Apr 03, 2021 6:06 pm

I had rectal cancer and surgery so quite a bit of a difference in anatomy but your problems have some similarities. You still have a rectum (my presumption), so, when things are back to normal, it should act as a cache to grab waste, extract water from it so that you have normal stools.

I had an ileostomy where they pull out a bit of small intestine outside your body so that it deposits waste in a bag which you wear around. The idea was to let the large intestine and everything lower recover from surgery. So everything went into the bag and you emptied it at your convenience. After the end of chemo, they do a reversal and reconnect everything. Stuff comes out mostly in liquid form as the large intestine isn't used to extracting the water. I don't have a rectum so that won't work for me but you'll have yours back after the tube is removed. But it may still take time for it to get back to doing its job.

If you have skin burning issues from the caustic waste coming out of you, then I recommend using a barrier product. Examples are Lantiseptic Cream, Cavilon Cream, and Cavilon Spray. These products will protect your skin against acid burns from waste. Someone here told me about the Cavilon Spray to deal with burning issues with the Ileostomy. The creams were suggested after the reversal when I had the problem with burning skin from runny stools.

The problem with stools every hour or so for a long period of time is called clustering. Normally your rectum could collect a lot of stool coming from the colon and hold onto it for some time and then you'd release it all in the bathroom. But your rectum is bypassed with the tube which is why you have the situation that you have. So diapers, incontinence pads where you sleep and I recommend a kit when you go out. I have what I call my cancer kit. It holds two diapers, a bunch of pads, water bottles (toilet paper becomes abrasive if you use enough of it), alcohol wipes, Hypafix tape, a small roll of toilet paper, and waste bags. The kit allows me to travel without having to fast for two days.

If I have a doctors appointment or something important where travel is required. I just fast for two days. Everything comes out by then and I'm empty so I can function in the real world.

There are OTC drugs to speed things up or slow them down. I sometimes take things to speed things up. I can't take the stuff to slow things down because I have scar tissue so slowing things down could get very painful.
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

Rock_Robster
Posts: 1021
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Post Surgery Issues

Postby Rock_Robster » Sat Apr 03, 2021 8:26 pm

Hey Bwat, sorry about your experiences. I too have LARS, although not as bad as some. NHMike is clearly the foremast authority, however there’s also an awesome Facebook group called Living With Low Anterior Resection Syndrome (LARS), which is hugely helpful and I’ve learned a LOT from.

Best of luck,
Rob
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 28 guests