Question on recovery from ULAR ileo reversal

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Rock_Robster
Posts: 450
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Question on recovery from ULAR ileo reversal

Postby Rock_Robster » Tue Dec 31, 2019 10:39 pm

Hi all, I had a ULAR in July for a T3b rectal tumour that was around 12cm high. I’ve had an ileostomy since then, and am hopefully lining up for a reversal shortly.

I’m trying to get a sense for what recovery from this is likely to be like. I’ve read a lot of unpleasant stories about LARS, and my surgeon has definitely prepared me for the worst for the first few weeks. But I’m trying to get a handle on - what is realistic to be able to do say 4-6 weeks after reversal? Could you work (desk job)? Travel - by car or plane? Leave the house? Having continence issues, or just need prompt access to bathrooms?

Thanks for your thoughts
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: Question on recovery from ULAR ileo reversal

Postby Punky44 » Wed Jan 01, 2020 6:33 am

Just an anecdote but 4 weeks after surgery my mom was able to travel 1.5 hours by car to a wedding and besides a few trips to the bathroom that evening, her night was basically normal.
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: 450
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Question on recovery from ULAR ileo reversal

Postby Rock_Robster » Wed Jan 01, 2020 7:29 am

Punky44 wrote:Just an anecdote but 4 weeks after surgery my mom was able to travel 1.5 hours by car to a wedding and besides a few trips to the bathroom that evening, her night was basically normal.

Thanks Punky, that’s encouraging!
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

Gravelyguy
Posts: 282
Joined: Thu Jul 05, 2018 6:03 pm

Re: Question on recovery from ULAR ileo reversal

Postby Gravelyguy » Wed Jan 01, 2020 8:02 am

Hi Rob,

A great topic. Our reactions to take down surgery are so variable ranging from people who are basically home bound to pretty much back to normal. Several of us have tried different things with differing results so it is hard to answer what to expect.

I am a teacher and had reversal surgery at the start of our summer break. My wife broke her leg and wrist 5 days before reversal so I became her primary care giver for most of the summer.

I had to do the shopping and taking care of things around the house from day 1. I think this forced me to have sense of humor about all the “fun” early bowl issues.

At 4-6 weeks I was having some continence issues but not all day. I wore, and still do, pads just in case. I went to the bathroom often but usually could make it. I went back to work at 10 weeks and was able to manage ok.

I did not take any over the counter meds to help. I wanted to see if my bowls could figure it out on their own. Not sure if that was the best move or not but it seems to have helped in the long run.

I did and continue to take a good probiotic that for me seems to really help. I read somewhere where the change in anatomy messes with the small and large intestines’ flora.

I have some other ideas but, again, it seems that our bodies respond so differently to this surgery that I am not sure how helpful any of it would be.

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: 450
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Question on recovery from ULAR ileo reversal

Postby Rock_Robster » Thu Jan 02, 2020 2:59 am

Gravelyguy wrote:Hi Rob,

A great topic. Our reactions to take down surgery are so variable ranging from people who are basically home bound to pretty much back to normal. Several of us have tried different things with differing results so it is hard to answer what to expect.

I am a teacher and had reversal surgery at the start of our summer break. My wife broke her leg and wrist 5 days before reversal so I became her primary care giver for most of the summer.

I had to do the shopping and taking care of things around the house from day 1. I think this forced me to have sense of humor about all the “fun” early bowl issues.

At 4-6 weeks I was having some continence issues but not all day. I wore, and still do, pads just in case. I went to the bathroom often but usually could make it. I went back to work at 10 weeks and was able to manage ok.

I did not take any over the counter meds to help. I wanted to see if my bowls could figure it out on their own. Not sure if that was the best move or not but it seems to have helped in the long run.

I did and continue to take a good probiotic that for me seems to really help. I read somewhere where the change in anatomy messes with the small and large intestines’ flora.

I have some other ideas but, again, it seems that our bodies respond so differently to this surgery that I am not sure how helpful any of it would be.

Dave

Thanks Dave, that’s all really helpful! Glad you could manage to get back to work.

Cheers, 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

Gravelyguy
Posts: 282
Joined: Thu Jul 05, 2018 6:03 pm

Re: Question on recovery from ULAR ileo reversal

Postby Gravelyguy » Thu Jan 02, 2020 7:42 am

I would also add that for me, sitting triggered having to go to the bathroom. Even1 1 1/2 years out sitting on hard surfaces will often give me the urge to go. So if you have a desk job I would make sure you have a very cushioned chair and move around as much as possible.

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: 450
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Question on recovery from ULAR ileo reversal

Postby Rock_Robster » Fri Jan 03, 2020 3:29 am

Gravelyguy wrote:I would also add that for me, sitting triggered having to go to the bathroom. Even1 1 1/2 years out sitting on hard surfaces will often give me the urge to go. So if you have a desk job I would make sure you have a very cushioned chair and move around as much as possible.

Dave

Thanks Dave, that’s really helpful. I used to have a standing desk so maybe I’ll see if I can get that back!
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

Rock_Robster
Posts: 450
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Question on recovery from ULAR ileo reversal

Postby Rock_Robster » Fri Jan 03, 2020 3:30 am

Gravelyguy wrote:I would also add that for me, sitting triggered having to go to the bathroom. Even1 1 1/2 years out sitting on hard surfaces will often give me the urge to go. So if you have a desk job I would make sure you have a very cushioned chair and move around as much as possible.

Dave

Also if you don’t mind me asking, I’d be interested in which pads you found best? Feel free to PM if you prefer.

Thanks
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

Gravelyguy
Posts: 282
Joined: Thu Jul 05, 2018 6:03 pm

Re: Question on recovery from ULAR ileo reversal

Postby Gravelyguy » Sat Jan 04, 2020 12:07 am

Hi Rob,

I just use the cheapest size 1 (smallest) underwear liners I can find. I use the slim ones not the thick kind. I also needed to switch from loose boxer type underwear to more compression short type after the surgery. The extra support helped and also helped keep liners where they needed to be. I don’t really need to wear them anymore but do because that is what I bought so I stayed with them.

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: 450
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Question on recovery from ULAR ileo reversal

Postby Rock_Robster » Sat Jan 04, 2020 1:17 am

Gravelyguy wrote:Hi Rob,

I just use the cheapest size 1 (smallest) underwear liners I can find. I use the slim ones not the thick kind. I also needed to switch from loose boxer type underwear to more compression short type after the surgery. The extra support helped and also helped keep liners where they needed to be. I don’t really need to wear them anymore but do because that is what I bought so I stayed with them.

Dave

Much appreciated - thanks Dave.
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

Rikimaroo
Posts: 268
Joined: Tue Dec 20, 2016 8:48 pm

Re: Question on recovery from ULAR ileo reversal

Postby Rikimaroo » Sun Jan 05, 2020 1:29 am

Rock,

This is what i used for in case of accidents:

https://www.amazon.com/gp/product/B008R ... UTF8&psc=1

Everyone is different, I know Gravelguy has had issue and posted as such. I have been up and down, most days are not great. Yes I can go places and do thing, but that is only if I have a large bowel movement/cleanout type. If it's clustering where I go everyone 10-20 minutes I can't really go anywhere. Most of the time, I am very nervous to go anywhere, with my family or anything else. I work from home thank god, own my own IT firm, however I do have to visit clients and had some bad experiences. There has been times I go to the bathroom several times while I am at the clinic/hospital. Then I start driving home and I have to poop and I poop my depends. Then I will stop at a gas station swap out depends and then start driving poop myself again. One time I left my friends house and had to stop somewhere to poop in the corner of the street. Then hop back in the car and 5 minutes later I had to go again, pooped myself then stopped at a mcdonalds which is 10 minutes from my house, pooped jumped in car and again it attacked me on the way home. It's rather frustrating. It's very uncomfortable to have poop in your butt while driving. Can you imagine driving home and have to poop several times and don't have time or opportunity to stop somewhere. STuck at a red light, your basically screwed. Can you imagine yourself, saying NONONONONONONONO, NOT now, oh thats me. LOL....It's really frustrating.

Going to the bathroom every 10-20 minutes after having a bowel movement is a huge inconvenience. This is called clustering. Also diarrhea and burning butt, which is very painful is another issue. To many bowel movements cause your skin to peel in your ahole area. I decided to get a permanent colostomy, honestly I don't think its permanent. I didn't get my butthole stitched up, basically I didn't get an apr. I got a low hartmanns. So I probably could get this reversed if I wanted to, but I have been super happy with it and can do anything. There are some annoyances having a colostomy, like poop getting stuck up top because the bag is air tight, so you have to shake it down, which is not a big deal. I just go to the bathroom and snap it off and clean it then snap it back on.

Honestly once you lose your rectum its hard to really enjoy normal bowel movements. You just don't get them often, sometimes you do though. You will have to see after you get your reversal and give it a year or two. I gave up after a year, but that is only because I had to get a surgery for recurrence in pelvic region and I figured just give me a bag. I didn't want to wait two years to see if things get better, and there are folks here over 2 years that have it rough.

Some people have tried enemas and it works for them, but its a ritual and takes time and honestly I think its hassle for me. Also even folks that take enemas still have bad days every now and then, but its less then not doing it. I don't enjoy having a bag, but it is what it is. I can eat anything and not worry about any issues. Sorry if I am not as encouraging as others, but I rather tell you the truth. It won't be fun after reversal.

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
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left seminal vescial/pelvic sidewall - 10/7/2019 resection surgery, perm bag, requested
FolFiri 11/6 - 5 rounds

Rock_Robster
Posts: 450
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Question on recovery from ULAR ileo reversal

Postby Rock_Robster » Sun Jan 05, 2020 2:20 am

Rikimaroo wrote:Rock,

This is what i used for in case of accidents:

https://www.amazon.com/gp/product/B008R ... UTF8&psc=1

Everyone is different, I know Gravelguy has had issue and posted as such. I have been up and down, most days are not great. Yes I can go places and do thing, but that is only if I have a large bowel movement/cleanout type. If it's clustering where I go everyone 10-20 minutes I can't really go anywhere. Most of the time, I am very nervous to go anywhere, with my family or anything else. I work from home thank god, own my own IT firm, however I do have to visit clients and had some bad experiences. There has been times I go to the bathroom several times while I am at the clinic/hospital. Then I start driving home and I have to poop and I poop my depends. Then I will stop at a gas station swap out depends and then start driving poop myself again. One time I left my friends house and had to stop somewhere to poop in the corner of the street. Then hop back in the car and 5 minutes later I had to go again, pooped myself then stopped at a mcdonalds which is 10 minutes from my house, pooped jumped in car and again it attacked me on the way home. It's rather frustrating. It's very uncomfortable to have poop in your butt while driving. Can you imagine driving home and have to poop several times and don't have time or opportunity to stop somewhere. STuck at a red light, your basically screwed. Can you imagine yourself, saying NONONONONONONONO, NOT now, oh thats me. LOL....It's really frustrating.

Going to the bathroom every 10-20 minutes after having a bowel movement is a huge inconvenience. This is called clustering. Also diarrhea and burning butt, which is very painful is another issue. To many bowel movements cause your skin to peel in your ahole area. I decided to get a permanent colostomy, honestly I don't think its permanent. I didn't get my butthole stitched up, basically I didn't get an apr. I got a low hartmanns. So I probably could get this reversed if I wanted to, but I have been super happy with it and can do anything. There are some annoyances having a colostomy, like poop getting stuck up top because the bag is air tight, so you have to shake it down, which is not a big deal. I just go to the bathroom and snap it off and clean it then snap it back on.

Honestly once you lose your rectum its hard to really enjoy normal bowel movements. You just don't get them often, sometimes you do though. You will have to see after you get your reversal and give it a year or two. I gave up after a year, but that is only because I had to get a surgery for recurrence in pelvic region and I figured just give me a bag. I didn't want to wait two years to see if things get better, and there are folks here over 2 years that have it rough.

Some people have tried enemas and it works for them, but its a ritual and takes time and honestly I think its hassle for me. Also even folks that take enemas still have bad days every now and then, but its less then not doing it. I don't enjoy having a bag, but it is what it is. I can eat anything and not worry about any issues. Sorry if I am not as encouraging as others, but I rather tell you the truth. It won't be fun after reversal.

Riki.

Thanks Riki, really appreciate the honesty and also the link. Sorry you hear you had to go through that but I’m glad you’ve found a workable compromise.
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

Gravelyguy
Posts: 282
Joined: Thu Jul 05, 2018 6:03 pm

Re: Question on recovery from ULAR ileo reversal

Postby Gravelyguy » Sun Jan 05, 2020 9:40 am

Rikimaroo wrote:Rock,

This is what i used for in case of accidents:

https://www.amazon.com/gp/product/B008R ... UTF8&psc=1

Everyone is different, I know Gravelguy has had issue and posted as such. I have been up and down, most days are not great. Yes I can go places and do thing, but that is only if I have a large bowel movement/cleanout type. If it's clustering where I go everyone 10-20 minutes I can't really go anywhere. Most of the time, I am very nervous to go anywhere, with my family or anything else. I work from home thank god, own my own IT firm, however I do have to visit clients and had some bad experiences. There has been times I go to the bathroom several times while I am at the clinic/hospital. Then I start driving home and I have to poop and I poop my depends. Then I will stop at a gas station swap out depends and then start driving poop myself again. One time I left my friends house and had to stop somewhere to poop in the corner of the street. Then hop back in the car and 5 minutes later I had to go again, pooped myself then stopped at a mcdonalds which is 10 minutes from my house, pooped jumped in car and again it attacked me on the way home. It's rather frustrating. It's very uncomfortable to have poop in your butt while driving. Can you imagine driving home and have to poop several times and don't have time or opportunity to stop somewhere. STuck at a red light, your basically screwed. Can you imagine yourself, saying NONONONONONONONO, NOT now, oh thats me. LOL....It's really frustrating.

Going to the bathroom every 10-20 minutes after having a bowel movement is a huge inconvenience. This is called clustering. Also diarrhea and burning butt, which is very painful is another issue. To many bowel movements cause your skin to peel in your ahole area. I decided to get a permanent colostomy, honestly I don't think its permanent. I didn't get my butthole stitched up, basically I didn't get an apr. I got a low hartmanns. So I probably could get this reversed if I wanted to, but I have been super happy with it and can do anything. There are some annoyances having a colostomy, like poop getting stuck up top because the bag is air tight, so you have to shake it down, which is not a big deal. I just go to the bathroom and snap it off and clean it then snap it back on.

Honestly once you lose your rectum its hard to really enjoy normal bowel movements. You just don't get them often, sometimes you do though. You will have to see after you get your reversal and give it a year or two. I gave up after a year, but that is only because I had to get a surgery for recurrence in pelvic region and I figured just give me a bag. I didn't want to wait two years to see if things get better, and there are folks here over 2 years that have it rough.

Some people have tried enemas and it works for them, but its a ritual and takes time and honestly I think its hassle for me. Also even folks that take enemas still have bad days every now and then, but its less then not doing it. I don't enjoy having a bag, but it is what it is. I can eat anything and not worry about any issues. Sorry if I am not as encouraging as others, but I rather tell you the truth. It won't be fun after reversal.

Riki.



Oh my word Riki,

How did you manage so long? I am sure your QOL has improved leaps and bounds since the colostomy at least I sure hope so. If I was dealing with lars that badly I would be all over the bag.

Glad you are doing better.

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!

NHMike
Posts: 2381
Joined: Fri Jul 21, 2017 3:43 am

Re: Question on recovery from ULAR ileo reversal

Postby NHMike » Sun Jan 05, 2020 10:37 pm

I drove 12 hours from Boston to DC last week and drive back tomorrow morning. My typical routine is to fast from 24 to 48 hours before a major trip, important meeting, etc. Or ensure a cleanout with Miralax (one or two doses). I take Slippery Elm and Nopalina to encourage things to come out faster and to bulk up so that clustering is minimized but I still have problems. In general, things are smoothest if I fast for 24 hours three to four times a week.

My distance was 5 cm and yours is 12 cm so you may have far better results than I've had.
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

KMC21
Posts: 6
Joined: Thu Oct 25, 2018 8:14 am

Re: Question on recovery from ULAR ileo reversal

Postby KMC21 » Tue Jan 14, 2020 3:34 pm

Hi Rob: I am coming up on 1 year since my ileostomy was reversed after total removal of my rectum in Fall 2018. I did tons and tons of reading on LARS and what to expect, so I was absolutely terrified. The first few months were quite rough and unpredictable, but it did get better. I went to Florida within 6 weeks of the surgery and was forced to eat very little (lest disaster strike) and sometimes was tethered to the hotel room. With the help of Imodium and occasional fasting, I was able to start traveling for work by April 2019 (reversal was 1/29/19) and I took an international trip in June. I now find that I rarely need Imodium and only have an occasional bad day where I am constantly running to the bathroom. In short, it has not been nearly as bad as I expected it to be, and I hope the same will hold true for you. I went into the surgery focused on the horror stories, and I have no doubt that many, many people struggle long term. But I wanted to share my fairly positive experience. My surgeon says it could continue to improve over the next several months.
ER visit 9/25/18 with dizziness and rectal bleeding
Colonoscopy 10/2/18
Diagnosed with rectal adenocarcinoma, 10/4/2018
Moderately to poorly differentiated, 8.1 cm from verge, T3 on imaging
Low anterior resection/total proctectomy w/ temp ileostomy 11/27/2018
Downstaged to T1, no lymph node involvement, no adjuvant therapy recommended
Reversal 1/29/2019
CT scan 4/2019 clear, CEA 1.0


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