Advice about resection and reconnection

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NYVET
Posts: 2
Joined: Sun Apr 11, 2021 10:41 pm

Advice about resection and reconnection

Postby NYVET » Sun Apr 11, 2021 11:16 pm

Hello All

I have stage 3B colo-rectal cancer, completed 5 months of chemo (mostly XELOX) and 5 radiation treatments. My cancer is low, in the rectum. I'm being treated at Sloan Kettering and have one of their top surgeons, I have a high degree of confidence in him.

I'm scheduled for surgery at the end of the month, plan is to remove the section of the colon and rectum, I get a temp ostomy bag, and in 2-3 months a reversal and he reconnects everything. We discussed the surgery and all of the side effects. What he described to me, 20+ BM''s a day, bowel incontinence, leakage, urgency, etc sounds like hell. I experienced some of those after radiation and it was hell, absolute torture, much worse that the chemo side effects. From what he told me there is a good chance those side effects might never get better and if they do get better I'm still probably looking at 4-8 BM's a day plus urgency and incontinence issues.

Those of you who had the resection and reversal, how bad were the side effects? How long did they last?

The surgeon offered me the option of skipping the reversal and just getting a permanent colostomy bag which is something that I am seriously considering.

Any thoughts or advice?

Thanks in advance
G
52M, NYC, 2 kids and too damn good looking for cancer to kill
8/20/20 Diagnosed, 3B normal CEA
8/25/20 At MSKCC
9/20-12/20 XELOX
1/21 rad
4/21 waiting for the knife

chadwick1
Posts: 26
Joined: Sat Oct 13, 2018 9:04 am

Re: Advice about resection and reconnection

Postby chadwick1 » Mon Apr 12, 2021 4:04 pm

Hi G,
I had a similar sounding situation: stage 3B, did radiation+5FU then had the rectal tumor resected at MSK, with a temp ileostomy. They reversed it about 6 months later (I did FOLFOX in the interim). My tumor was low-ish but not so bad that the surgeon was overly concerned--I think it was about 8 cm away from the anus. I've been "put back together" for about 3 years now and it's going really well I'd say. I definitely had, and still have, issues like having to go more often, though certainly not 20+/day. More like 3 to 5 times, maybe more early on. I had urgency issues bad at the beginning--it would come on suddenly and feel like I have to go RIGHT NOW, then I'd go and it'd be not much. Similarly I sometimes have "clustering" wherein I go, finish and stand up to leave, then suddenly have to go again. It's annoying but honestly it's not that bad all things considered. I've adjusted and otherwise live pretty normal. And it's certainly been improving over the years. Granted not everyone has the same experience so I have no idea how things would work out for you but there can be good results!
Hope that helps,
Chad
DX 6/17, 37yo father of two
Stage 3b RC (T3N1bM0) normal CEA
7/17 rad + 5FU
10/17 LAR w/ temp loop ileo. 2/33 lym
11/17-3/18 FOLFOX, 9 rounds
2-4/18 CT clear, ileo rev
10/18 CT mass in liver 1.7 cm, + lung 0.6 cm
MRI confirms liver, Stage 4
11/18 liver resec
1/19 CT lung n. ↓ to 0.3 cm
3-6/19 CT unch
10/19 CT lung n. ↑ to 0.6 cm + new 1.2 cm
11/19 lung resec
7/20 CT lung 3 n. consistent with mets
8/20-2/21 FOLFIRI, 13 rounds
10/20 CT all ↓
1/21 CT mixed, PET suspicious
3/21 lung resec, failed

itsfineimanurse
Posts: 3
Joined: Wed Apr 29, 2020 6:49 pm

Re: Advice about resection and reconnection

Postby itsfineimanurse » Mon Apr 12, 2021 6:59 pm

I was stage 3b also. My reconnection is like 2 cm from my sphincter. I had resection in September and ileostomy reversal I'm February.

The first month was awful, but so was the first month having my ileostomy. There's a learning curve to both.

I haven't had 20+ bowel movements a day, but there are days where it feels like it. Overall, I am so elated to have the damn bag off! It has definitely been worth it for me.

I say try it. Give it a few months and if you don't like it, you can always go back to the bag.

Good luck!
34F, 2 kids (2.5 yrs old and 8 months)
Diagnosis pretreatment: T3b N1a rectal cancer (01/2020)
05/06 8 rounds FOLFOX complete
05/26 Started Xeloda and radiation
08/05 MRI "moderate" regression, tumor volume shrunk by 87%, lymph nodes clear
09/10/2020 Robotic assisted LAR with diverting ileostomy- pathology: no residual cancer,the remaining "tumor" was basically a polyp (hallelujah!!)

NYVET
Posts: 2
Joined: Sun Apr 11, 2021 10:41 pm

Re: Advice about resection and reconnection

Postby NYVET » Mon Apr 12, 2021 8:12 pm

Hi Chad

Thank you for the reply, it was helpful. My tumor and situation sounds very similar to yours. It's 7 cm from the anus. At MSK I'm being treated by Dr. Yaeger (oncologist), Dr. Rommesser (Radiation Oncology) and Dr Weiser (surgeon). From your signature I see you also have 2 kids, although I'm 52.

If you don't mind me asking, at the worst, how many BM's per day were you taking? Did you have issues with bowel incontinence or leakage? How long did it take for things to resolve? Has the urgency improved?

Most importantly, how did it affect your life? Were you able to work? Were you able to be active with your kids or were you chained to a bathroom? What about your social life?

I'm very active with my two sons, skiing, biking, boating, fishing, traveling, going to the beach, swimming, working on projects in the house, working on our boat etc. I work as a trial attorney and I'm frequently in court or meeting with clients. I have a active social life, dating, going out with friends, bars, restaurants, dancing, and singing karaoke (very badly). I'm very concerned that I'll be chained to a toilet and unable to live as I did before. (before cancer and before covid...)

This is what has me seriously considering the permanent colostomy. I'm sure it isn't a walk in the park, but I'm a very practical person and I'll endure whatever is necessary. Something I took with me from my time in the Army. So I am seriously considering the permanent colostomy to remove the uncertainty and allow me to get on with my life.

Thanks Again

George
52M, NYC, 2 kids and too damn good looking for cancer to kill
8/20/20 Diagnosed, 3B normal CEA
8/25/20 At MSKCC
9/20-12/20 XELOX
1/21 rad
4/21 waiting for the knife

Gravelyguy
Posts: 359
Joined: Thu Jul 05, 2018 6:03 pm

Re: Advice about resection and reconnection

Postby Gravelyguy » Mon Apr 12, 2021 10:03 pm

This is such a tough one. All of us that have the surgery have different experiences. My tumor was less than 1cm from the anal verge and I expected to come out of surgery with a permanent ostomy but my amazing surgeon was able to somehow reconnect everything. For me, there was steady improvement for the first year but it was a real challenge at times and a good sense of humor is needed. I am closing in on three years and my side effects are still slowly getting better. Not everyone is so lucky.

Today, a normal day is going twice a day. For a very long time I would have clustering in the evening but usually did pretty well during the day. The clustering is all but gone now. It coincided with packing rice crispy bars in my lunch a month or so ago. I tried an experiment and quit eating the bars for a few days and the clustering started back up.

There are people on here who have gone to a permanent ostomy because the side effects were a detriment to their quality of life. I am really not sure why we all react differently, but there are some of us who have adapted pretty well.

If you need more info ask away!

Save
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!

User avatar
Green Tea
Posts: 378
Joined: Mon Oct 24, 2016 10:48 am

Re: Advice about resection and reconnection

Postby Green Tea » Tue Apr 13, 2021 8:48 am

NYVET wrote:...I work as a trial attorney and I'm frequently in court or meeting with clients.

If you work as a trial attorney you might be interested reviewing the experiences of another rectal cancer trial attorney -- one who is now almost 4 years beyond his reversal surgery:

In 2021, Basil wrote:I am now four years past diagnosis and been NED since 7/31/17. My doc is going to discharge me from MDAnderson in September if everything remains clear. Thanks to you folks here who were absolutely wonderful when I came strolling in knowing nothing about rectal cancer, other than that I had it at age 40!

Basil wrote:I'm a trial lawyer in Houston. My job description includes a lot of sitting on my butt doing research, taking depositions and sitting on wooden benches in courtrooms...

Rock_Robster
Posts: 559
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Advice about resection and reconnection

Postby Rock_Robster » Tue Apr 13, 2021 9:19 am

I recently watched this amazing 20 min interview which explained so many aspects of this in great detail, and also just how hard it is to predict who will be affected, and in what way. Perhaps might give some insights to help in this.

https://www.stmarksacademicinstitute.or ... ERuoJlR1Zk

I had a ULAR with ileostomy and reversal about a year ago; I work full time in a corporate gig now. Happy to share my experience if useful, although everyone’s is likely to be different.
39M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1, Dec-20: 2.3, Mar-21=2.5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (CT/PET/MRI/scope) - latest scans Mar ‘21

chadwick1
Posts: 26
Joined: Sat Oct 13, 2018 9:04 am

Re: Advice about resection and reconnection

Postby chadwick1 » Tue Apr 13, 2021 2:06 pm

NYVET wrote:If you don't mind me asking, at the worst, how many BM's per day were you taking? Did you have issues with bowel incontinence or leakage? How long did it take for things to resolve? Has the urgency improved?

Most importantly, how did it affect your life? Were you able to work? Were you able to be active with your kids or were you chained to a bathroom? What about your social life?

Honestly, I'm amazed at how little it affected my life (specifically the reversal! cancer on the whole very much changed my life of course). I've remarked to friends how crazy it is that they totally rearranged my bowels yet I get along almost as normal. Regarding urgency, I remember the day I left the hospital after reversal, in the car with my wife navigating Manhattan streets, and it hits me hard. What could I do? So I gritted my teeth, clenched up, and... the feeling passed. I realized I could beat it, hold it and it'd go away, at least long enough to plan a bathroom break. And it's definitely improved with time--I don't have the full teeth-gritting experience anymore, it's much more mild and less frequent. We're an active family too, skiing, hiking, road trips, going out (pre-pandemic), etc. my "new bowels" haven't gotten in the way at all, it just might take a bit more planning ahead. Regarding leakage, it has happened, but thankfully accidents have been really rare. Probably could count on one hand the number of times in 3 years. Of course as the others have said everyone has different experiences so who knows, but the situation does sound similar and FWIW I've been really happy with the results of the reversal.
DX 6/17, 37yo father of two
Stage 3b RC (T3N1bM0) normal CEA
7/17 rad + 5FU
10/17 LAR w/ temp loop ileo. 2/33 lym
11/17-3/18 FOLFOX, 9 rounds
2-4/18 CT clear, ileo rev
10/18 CT mass in liver 1.7 cm, + lung 0.6 cm
MRI confirms liver, Stage 4
11/18 liver resec
1/19 CT lung n. ↓ to 0.3 cm
3-6/19 CT unch
10/19 CT lung n. ↑ to 0.6 cm + new 1.2 cm
11/19 lung resec
7/20 CT lung 3 n. consistent with mets
8/20-2/21 FOLFIRI, 13 rounds
10/20 CT all ↓
1/21 CT mixed, PET suspicious
3/21 lung resec, failed

annieliz
Posts: 53
Joined: Fri Jul 26, 2019 5:13 pm

Re: Advice about resection and reconnection

Postby annieliz » Tue Apr 13, 2021 7:38 pm

My situation is similar to yours. Had chemo, radiation and surgery at MSK in NYC. Tumor was 7.8cm from AV. Had robotic LAR on 4/14/20 and reversal of ileostomy on 7/15/20. The first couple of weeks were a bit crazy with urgency and clustering, but no accidents, leakage, etc. I went back to work in person 3 weeks after reversal without any problems, but I did always pack extra clothes, wipes, etc. just in case! I would say that at this point I am about 80 - 90% normal and 100% better than I felt before I was diagnosed. Exercise helps a lot, along with figuring out which foods work best.

Hope this helps,
Anne
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19-1.9, 12/6/19-2.3, 2/28/20-1.7, 11/27 - 1.9, 2/10/21 - 1.5
8/16/19 - 11/23/19 FOLFOX - 8 rounds
10/9 flex sig ~30% shrinkage 11/27/19-a bit more shrinkage
Neulasta 9/29/19, 10/27/19, 11/24/19
25 days Xeloda and radiation 12/17/2019 - 1/22/20
Robotic LAR 4/14/20 - clear margins - 0/15 nodes
Temp ileostomy - Reversal 7/15 - minor LARS
10/19/20 - clear colonoscopy
2/10/21 - clear CT

Rock_Robster
Posts: 559
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Advice about resection and reconnection

Postby Rock_Robster » Wed Apr 14, 2021 11:32 pm

I work mostly on M&A deals, so I also spend a lot of time in the office, and in meetings. So I wanted to try to give a rough objective timeline of how my function improved after reversal:

2 weeks: useless. Negligible control. 10+ movements a day. Painful. Wore adult diapers.

4-6 weeks: significantly improved. Started Imodium and Metamucil. Also started back at work at 6 weeks. If I stuck to the meds and did intermittent fasting, the mornings were fine. Afternoons a bit sketchy - would have to sprint to the bathroom a few times. Overnight very challenging still. I had one accident at the office (I always carried spare underwear and wipes). I’d also wear an underwear liner when I went out. Hardest part was commuting to/from work by train without bathroom access. Definitely couldn’t drink coffee in any form.

12 weeks: much, much better. I could probably keep to 3-5 movements per day if I managed it perfectly. Still wore the liners but no accidents during the day. I’d get a few minutes notice for a bathroom visit. Overnight was still rough - I might have an accident maybe once a week. Could go out for dinner, do sport, etc - just took Imodium and made sure I knew where the bathroom was. Restarted decaf coffee.

6 months: very similar to 12 weeks, but accidents of any kind very rare. I started doing enemas ad hoc which was my ‘insurance policy’ if I had something like catching a flight or a big event I didn’t want to risk disrupting. Restarted caffeinated coffee.

12 months, aka now: good days are 1-2 movements per day, usually in the morning and after lunch. No disruption to work really. Half the nights I sleep through, half I go at around 4am. Still take Imodium religiously and use enemas as backup. Haven’t had an accident in a long time.

I’m told this is a “good” outcome; sadly the full range is out there. But hope this gives you some idea of my experience.
Questions welcome.

Rob
39M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1, Dec-20: 2.3, Mar-21=2.5
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (CT/PET/MRI/scope) - latest scans Mar ‘21

Punky44
Posts: 476
Joined: Mon Oct 01, 2018 4:29 pm

Re: Advice about resection and reconnection

Postby Punky44 » Mon Apr 19, 2021 9:45 pm

I will just add another anecdote for your consideration—my mom’s tumor was fairly low and she had a temporary bag and dealing with the bag was the worst part of it all for her. She couldn’t count the days fast enough until reversal. Similar to others’ comments, the first weeks after reversal were “uncontrolled” but with time, things significantly improved and continued to improve the entire first year. She still has her days if she eats the wrong thing but for the most part, she has a completely normal existence and maybe makes an extra trip to the bathroom here and there.

Good luck to you with everything!
Caregiver to my amazing mom (68 at dx)
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
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4
Latest update: 3/22/21: CEA 3.4

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

jts
Posts: 53
Joined: Sat Aug 24, 2019 3:07 pm

Re: Advice about resection and reconnection

Postby jts » Thu Apr 22, 2021 7:07 am

Thanks to everyone who posted in the tread. I'm not the OP, but this is great information.

I was also 3b RC. I have a temporary iletomy, and 18 months after my surgery I'm still reluctant to get it reversed. The main thing in my case was, for the first 6 months I was on chemo. Then they found a met in my lung. The prognosis at that point gets a lot worse. If I only have limited time, I don't really want to spend a year or more potty training myself. And for most purposes the ileostomy is pretty convenient. It's extremely predictable and there is no uncertainty or surprises. The big drawbacks are with things that would normally be without a shirt (swimming), the problem that the sticker loosens up after hard sweaty exercise, or having to change the sticker in a situation where you don't have a private bathroom (campground).

If your surgery goes well and your don't have signs of recurrence after the surgery and adjuvant treatment, I would totally do the reversal, though.
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8

Rikimaroo
Posts: 341
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Advice about resection and reconnection

Postby Rikimaroo » Wed Apr 28, 2021 1:35 pm

I am going to chime in and mine will be on the other spectrum of everyone else who posted here. Like you I had RC and 9cm from anal verge. I had LAR and had ileo for about 6 months and reversed. Once you lose your rectum the challenge is holding your poop and if you have to go, you don't have that muscle anymore to hold your poop. So you going to be force or have accidents no matter what. After my reversal that first month was terrible, the first day 40 times, but during that month it gradually decreased to 25 times and less.

I will be straightforward with you, its not easy. Yes it can get better for some, but for me it didn't. I had issues where I felt chained to the toilet. Some days, were amazing I went once for the whole day, other days I had burnt ass from going too many times. Too many times meaning 6-8 times, first you get the normal blow out poop which is nice and sometimes you don't have to go again, but the problem is when you have to go 5 times after that, your ass will be on fire and it hurts.

After a year of dealing with it, pooping myself in the car, wearing diapers all the time, can't spend time with my family because I feel that I will have to go and spend 1 hour in the toilet or going back and forth and have pain if I go to much I got a permanent colostomy and it has changed my life to the better. I own an IT business and one time I met with a client to pitch my deal and I had to go to the bathroom while we were talking. I went and spent 30 minutes on his toilet. Then I came back started talking to him and had to stop 5 minutes and go back to the bathroom. This was maybe 3 times running back and forth, it was embarrassing, interrupting, and honestly I had to tell the client my personal business of why this was happening. He never signed, but not because of that I Think LOL...

Everyone is different and everyone will tell you something different. I read all the posts here, and honestly I don't want to go to the bathroom 5-6 times a day and clustering SUCKS. Clustering basically means you don't clean out and you have to take multiple trips several times. I tried Metamucil/Imodium but that have there own problems. Imodium can cause constipation which is another pain in the ass, and Metamucil can make you clean out better, but sometimes you still have clustering and residual shitting, which hurts when you go to many times. Personally I hate having a bag, I don't want it, but it gave me my life back and its easy to snap off and put another one. It bulges a little out of my shirt, but you can barely see it. If you fatter might be harder to hide, if your thinner probably won't show as much through your clothes. Honestly I don't give a F if someone sees or knows I have an ostomy. I got no one to impress.

So if you lose your rectum, it won't be easy and you won't be normal ever again. Like the others here who posted, they adapted as much as they can, but I guarantee you none of us is happy with our situation but we take what we get and live with it, some don't want a bag just because.

I know its a hard choice, get the reversal and see for yourself what you think. Everyone is different but I know 3 people that got the reversal and even though things are better they still poop 3-5 times a day, or sometimes, SOMETIMES if your lucky its one big blowout and your good, but that doesn't happen all the time. I think a lot of people play down the pooping and burning and complications, because there just adapting to it, but its not easy. AS a trial lawyer you don't have the convenience to tell the judge several times you have to run out to the bathroom.

Its a tough choice again, I hope my story helps you make a decision. Some people just don't want the bag again, because of psychology, feeling less attractive (I definitely do, but my wife loves me unconditionally).

Good luck on your decision and I am more then happy to discuss anything you like. My surgeon is one of the top surgeon in the US Dr. Steven Wexner of Cleveland Clinic. So for me to have decided to switch back to a bag after him doing a surgery tells you that its just the life without a rectum is not as easy. Here is the definition of the rectum:

The rectum is a straight, 8-inch chamber that connects the colon to the anus. The rectum's job is to receive stool from the colon, let you know that there is stool to be evacuated (pooped out) and to hold the stool until evacuation happens. The sigmoid and traverse and other parts of the colon doesn't have this capability. It can't hold your stool, you can squeeze your butthole as hard as you can but I promise you that its going to come out no matter what and at the most inconvenient time in your diaper and nobody wants to feel shit up there ass and on diaper, its super uncomfortable, trust me its happen to me multiple times. Why do you think animals hate being in there poo, we humans hate it too (LOL). Couple times I had to pull over in the side of the road to poo, it was dark thank god, but still after all this shit, hostage feeling to the toilet, hard to spend time with my family, burn butt from going multiple times I decided to get a colostomy. If you do all those things with your kids, its going to be hard without a rectum.

Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

ab123
Posts: 121
Joined: Tue May 21, 2013 12:25 pm
Location: Boston

Re: Advice about resection and reconnection

Postby ab123 » Fri Apr 30, 2021 8:36 am

I had a very similar experience to Chad, I think. My tumor was about 5cm above and I currently have near pre-cancer function - really doesn't disrupt my life at all. For the first couple years I took Metamucil daily, which really helped bind stuff together and more completely get stuff out all at once - I recommend that highly. I also used to bring Immodium with me whenever I traveled and had it on hand at work - but not anymore. Today I have maybe 3 BMs a day - which is higher than it used to be - but not disruptive at all.
Aug 2012: RC DX Stage IIIC, T3N2M0 by MRI - 38M
Fall 2012: Chemorad
Nov 2012: LAR - Path report: 0/13 LNs, tumor reduced to "microscopic foci"
Jan-Apr 2013: 8 rounds FOLFOX
May 2013: Ileostomy takedown, port removal
July 2013 (and since): NED!

cucaracha
Posts: 8
Joined: Sat Oct 17, 2020 1:45 pm

Re: Advice about resection and reconnection

Postby cucaracha » Mon May 17, 2021 10:03 am

I think Gravelguy hit the nail on the head, everyone is going to experience it differently.
I knew the surgery and ileostomy were going to be difficult from what I read. So, I asked for the ileostomy reversal ASAP. I wanted to start my road to recovery immediately. My surgeon did it within 3 months. I had to wait an extra month since I had to do 4 more rounds of chemo on top of the 1st installment. At the moment, I am almost 5 months post reversal. Another thing to consider is how much rectum you will have left or not; and if the area that received the radiation is still present. My surgeon told me part of my rectum is still healing from the radiation burn at the same time as everything else. In his words, "The good thing about radiation is the body will heal eventually". Good one doc. I can't help but think my radiation oncologist gave me the maximum amount.

I have had similar experiences to others that have posted here. It's getting better, but it will take time. Patience will go a long way. Besides Imodium, psyllium husk, enemas and other remedies, I recommend to exercise a good amount to promote blood flow so you can heal faster and to keep a healthy mindset. Before i had surgery, I searched out a 'cancer buddy" because I was losing my shit about the radical surgery. https://www.ccalliance.org/patient-fami ... dy-program

I returned to work 2 weeks ago, and decided to fast while I am there. I figure there is less of a chance for an accident, and keeps it stress and anxiety free. I still have a light breakfast in the morning and then protein shakes while working.

Good luck
45 yrs old at diagnoses
12/19 CEA 1.8
1/7/20, Stage IIIA rectal cancer, T3N1. 5.8cm from AV
5.8cm AV, 3mm beyond the rectal wall, 2 involved mesorecrtal lymph nodes
neoadjuvant:
1/19 - 5/19 chemo - XELODA, FOLFOX - 8 rounds
5/19 - 6/19 radiation w/ Capecitabine
9/24/20 EUS, Pathology, 6-7cm from AV
Residual moderately differentiated rectal adenocarcinoma.
11/3/20 LAR, TME
Results: 11/5/21, 1 out of 12 lymph nodes positive
12/20-1/21 chemo -XELODA, FOLFOX - 4 more rounds
2/1/21, resection & port removal


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