ULAR recovery process

Please feel free to read, share your thoughts, your stories and connect with others!
Rock_Robster
Posts: 454
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

ULAR recovery process

Postby Rock_Robster » Mon Feb 10, 2020 1:29 am

Hi all,

For those who’ve had a ULAR...

I had my reversal a week ago, following an ileostomy for 6 months after a ULAR for a mid/high rectal tumour. My surgeon said I have about 6cm of rectum left, so not a great deal.

I’ve read a lot about the recovery and LARS, and I’m pretty apprehensive about the whole thing. My bowels started up about 4-5 days ago, and I’m trying to get a handle on how things are likely to progress from here. To be honest, at the moment it’s not actually that bad. I have urgency to go to the bathroom perhaps every 2-3 hours, and when I do it’s only small amounts. I have some tenesmus/spasming in between, but generally not intolerable. I haven’t really had any incontinence or severe diarrhea. I can do most things - the only thing that is hard is standing for long periods (the pressure gets uncomfortable). Obviously it isn’t great, but I was also fearing much worse and if this trend continues then I might even be ok... Do things tend to get worse before they get better however?

My company doc wants me to start some part-time/virtual work in early March. I think this could be doable if I don’t have to commute too much. Surgeon recommends 6 weeks off work, so I guess we’ll see.

Thanks for any insights.
Rob
Male 37; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed a liver spot
08-11/19 - FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 - Liver resection #2
02/20 - Ileostomy reversed

Punky44
Posts: 431
Joined: Mon Oct 01, 2018 4:29 pm

Re: ULAR recovery process

Postby Punky44 » Mon Feb 10, 2020 1:41 am

Sounds like you are having a good recovery, which is great! I can only speak for my mom’s experience but things only got better weeks/months after reversal. She had and continues to have her “bad days” but they become less frequent as the months go by. I think they say it can take up to a year to find a new normal, so even we have 5 more months to go to hopefully see more improvement. If you are doing well now, chances are it will only get better from here on out!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 2.1; 1.9; 2.6; 2.8
6/28/19 Reversal and port out
10/22/19: CT showed new nodules
1/28/20: CT showed nodules shrinking

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Rock_Robster
Posts: 454
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: ULAR recovery process

Postby Rock_Robster » Mon Feb 10, 2020 2:23 am

Punky44 wrote:Sounds like you are having a good recovery, which is great! I can only speak for my mom’s experience but things only got better weeks/months after reversal. She had and continues to have her “bad days” but they become less frequent as the months go by. I think they say it can take up to a year to find a new normal, so even we have 5 more months to go to hopefully see more improvement. If you are doing well now, chances are it will only get better from here on out!

Thanks Punky, that’s encouraging! Appreciate the response, and hope things continue to improve for your mum as well :)
Male 37; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed a liver spot
08-11/19 - FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 - Liver resection #2
02/20 - Ileostomy reversed

User avatar
CRguy
Posts: 10096
Joined: Sun Feb 10, 2008 6:00 pm

Re: ULAR recovery process

Postby CRguy » Mon Feb 10, 2020 12:46 pm

Sounds typical of what I recall Rob. The repeat BMs ( clustering ) is likely due to not having that "storage" in the sigmoid any more :shock:

Things will tend to oscillate with days and weeks being better, then maybe not as good, depending upon diet, exercise, stress etc.
Maybe keep a journal for a while to see if you can identify any specific triggers for bad days ???

The surgeon's "6 weeks" from takedown is due to the healing of the temp ileostomy surgery site, abdominal muscles. They want you to avoid ANY heavy lifting as these are more prone to herniation and breakdown than the midline primary incisions in most cases.

Best wishes and keep us ... "in the loop !" :oops:

Cheers buddy
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Gravelyguy
Posts: 285
Joined: Thu Jul 05, 2018 6:03 pm

Re: ULAR recovery process

Postby Gravelyguy » Mon Feb 10, 2020 1:01 pm

Hi Rob,

Glad you are doing pretty well. You will more than likely have some rough patches as you try new foods and become more active. A sense of humor will go a long way to getting through it. Glad you have control. If you can manage now you will definitely feel even better the farther out you go.

A week or so back I thought I was going backwards with less control and lots of frequency. It turns out having a little popcorn at work was causing havoc with my bowels. I stopped eating that and also went off my magnesium supplement for a bit and I honestly feel close to before cancer.

Again glad to hear you are doing so well!

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 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!

Rock_Robster
Posts: 454
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: ULAR recovery process

Postby Rock_Robster » Mon Feb 10, 2020 9:00 pm

Thanks for all the comments guys - much appreciated. I’m cautiously optimistic about things from here. I feel like I’m doing surprisingly well at the moment, but then again I’m also living a very “careful” lifestyle at the moment. Low res diet, never more than 30 feet from the bathroom unless I’m walking the dogs, etc :). I guess the real test will be when I have to go back to working out, commuting, eating a normal adult variety of foods etc.

Will keep updated!
Rob
Male 37; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed a liver spot
08-11/19 - FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 - Liver resection #2
02/20 - Ileostomy reversed


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



Who is online

Users browsing this forum: Abb1981, Google [Bot] and 64 guests