Another post-reversal output issue thread

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mandosquiddy
Posts: 32
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
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Another post-reversal output issue thread

Postby mandosquiddy » Fri May 24, 2019 4:30 pm

I had my temporary illeostomy reversed back on January 3. The first few weeks were rough but not unexpected. I had very loose stool and bouts of clustering. Things seemed to settle down after about a month and a few Immodium a day seemed to keeps things relatively calm. I would still have bad days but seemed to average about 3-6 bathroom trips a day. Then at the beginning of April I did a little overeating and believe some non-soluable fiber caused a blockage. I ended up in the hospital for two nights and the blockage cleared on it's own. Since then I've been careful about my diet and have gotten back to a somewhat predictable pattern. This week however has been rough and I can't pinpoint what is causing it.

I've been jogging a few times a week and on my Tuesday run I could tell my tummy was not happy so I stopped and walked home where I spent some time on the toilet but had fairly regular output. Then Wednesday I spent what seemed like 50% of my workday on the toilet again with mostly normal output except it felt like I was releasing fragments from a nuclear explosion. It continued into the evening and I had to miss my son's orchestra concert. Yesterday (Thursday) I continued to have some output in the morning and that old Chernobyl feeling on my bum so I stayed home from work. I did have more output later in the day that wasn't so painful followed by another painful round in the evening.

Now today has been the most fun of all! I have had 6 or 7 very large solid outputs. They don't burn butt I feel like an anaconda has crawled out of me slowly over the course of the day. I did up the immodium some yesterday and am wondering if that is what is causing this. I also have no idea where all this output is coming from. The math doesn't add up. Is it possible I had a partial blockage that cleared and is now flushing itself out. I know at this point I should be contacting my surgeon but I wanted to see if anyone here had thoughts or similar experiences?
4/2017 DX: sigmoid colon cancer
colectomy/colostomy
stage II with one positive margin
5/2017 - 11/17 12 rounds of FOLFOX
11/17 - 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 - 2/18 25 rounds of radiation treatment
5/18 surgery, interoperative radiation, bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on outside of small intestine
10/18 Debulking surgery/illeostomy
1/19 Ostomy reversal

mandosquiddy
Posts: 32
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

Re: Another post-reversal output issue thread

Postby mandosquiddy » Sat May 25, 2019 4:32 pm

Almost 24 hours since posting and I am having the same issues. Strongly considering a fun trip to the ER b/c something is definitely off.
4/2017 DX: sigmoid colon cancer
colectomy/colostomy
stage II with one positive margin
5/2017 - 11/17 12 rounds of FOLFOX
11/17 - 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 - 2/18 25 rounds of radiation treatment
5/18 surgery, interoperative radiation, bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on outside of small intestine
10/18 Debulking surgery/illeostomy
1/19 Ostomy reversal

ozziej
Posts: 236
Joined: Thu May 21, 2015 8:35 pm

Re: Another post-reversal output issue thread

Postby ozziej » Sun May 26, 2019 3:40 am

If you are passing gas and faeces then it's unlikely you have a blockage. Your experience is not unusual. Many members of my LARS group wonder where all the poo comes from proportionate to their intake. If you are clustering it can seem as though you are passing a lot more than you actually are. By all means, seek reassurance from your surgeon.
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

mandosquiddy
Posts: 32
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

Re: Another post-reversal output issue thread

Postby mandosquiddy » Mon May 27, 2019 11:59 am

I did make a trip to the ER on Saturday. I had a CT scan and nothing seemed to stand out to them regarding my digestion issues. They did note increased hydronephrosis which isn't surprising given the involvement of my ureter and bladder in past surgeries. My oncologist has ordered an MRI of the pelvis and partial scope to see if any obvious issues stand out.

It certainly could just be an intense period of clustering but it's been 5 months since the reversal and I've had a lot of "fun" in that the. This specific period just happened so suddenly and was so intense that I can't ignore it. Immodium has seemed to have zero impact. I'll update this thread if and when I have more info.
4/2017 DX: sigmoid colon cancer
colectomy/colostomy
stage II with one positive margin
5/2017 - 11/17 12 rounds of FOLFOX
11/17 - 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 - 2/18 25 rounds of radiation treatment
5/18 surgery, interoperative radiation, bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on outside of small intestine
10/18 Debulking surgery/illeostomy
1/19 Ostomy reversal

Caat55
Posts: 661
Joined: Sat Dec 23, 2017 6:01 pm

Re: Another post-reversal output issue thread

Postby Caat55 » Mon May 27, 2019 7:01 pm

Aren't the explosions awful? I go back to work on Tuesday and dread using a community restroom. I hope your issues resolve. What about psyllium husk? I have just started adding one capsule of fiber to my daily routine, psyllium . The bottle says up to dosage is three so I am starting small, prefer not to use Imodium.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

Rikimaroo
Posts: 204
Joined: Tue Dec 20, 2016 8:48 pm

Re: Another post-reversal output issue thread

Postby Rikimaroo » Thu May 30, 2019 2:08 pm

Seems normal too me. I have about 7 months out and I still get the piece meal pooping (clustering) and sometimes I have great days, where I go once, or twice and I am done. The blow outs are great, I rather have that then I know i might be good, I always take two immodium after a blow out.
RC T3N1M0
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 - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

mandosquiddy
Posts: 32
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

Re: Another post-reversal output issue thread

Postby mandosquiddy » Fri May 31, 2019 10:39 am

Hi Rik -

I agree that blowouts are nice b/c you will have a period of relative peacefulness after. However, the episode I had last week was 5 days of painful seemingly constant movements. I'm also pretty sure it was just a bad period and I'll deal with more in the future and hopefully they will get less frequent. It's hard for me not to get a little paranoid when something seems different. This week has been "normal" for the post part. I know most of us on here have a way different "normal" than the general populace.

Next week I'll do the pelvic MRI and get the CEA tested again for the first time since March. If the CEA remains low I'll be a lot less worried.
4/2017 DX: sigmoid colon cancer
colectomy/colostomy
stage II with one positive margin
5/2017 - 11/17 12 rounds of FOLFOX
11/17 - 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 - 2/18 25 rounds of radiation treatment
5/18 surgery, interoperative radiation, bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on outside of small intestine
10/18 Debulking surgery/illeostomy
1/19 Ostomy reversal

Rikimaroo
Posts: 204
Joined: Tue Dec 20, 2016 8:48 pm

Re: Another post-reversal output issue thread

Postby Rikimaroo » Fri May 31, 2019 2:02 pm

CEA makes me super nervous. I also had a pelvic recurrence and dealing with that. Docs want me to do 4 more rounds of folfiri. Ileostomy reversal and chemo sucks. Plus chemo is really hard and appetite loss makes it harder. Let’s oray me and you get out of this craziness!!

There are days I wish I had my ileostomy. Life was easy with it.
RC T3N1M0
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 - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

mandosquiddy
Posts: 32
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

Re: Another post-reversal output issue thread

Postby mandosquiddy » Wed Jun 12, 2019 3:57 pm

Well I had an MRI which showed nothing unusual. CEA was 1.6 so nice a low! The oncologist things I could have radiation proctitis causing issues with my bowels. I am having a scope on Monday to see what shows up but otherwise have had a couple "quiet" weeks since my bad week. Have had a couple bad days but have managed overall. Next scan in September and then I can switch to a 6-month schedule. Woohoo! In the meantime, going to work on getting these intestines to behave.
4/2017 DX: sigmoid colon cancer
colectomy/colostomy
stage II with one positive margin
5/2017 - 11/17 12 rounds of FOLFOX
11/17 - 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 - 2/18 25 rounds of radiation treatment
5/18 surgery, interoperative radiation, bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on outside of small intestine
10/18 Debulking surgery/illeostomy
1/19 Ostomy reversal

Caat55
Posts: 661
Joined: Sat Dec 23, 2017 6:01 pm

Re: Another post-reversal output issue thread

Postby Caat55 » Wed Jun 19, 2019 5:41 pm

mandosquiddy wrote:Well I had an MRI which showed nothing unusual. CEA was 1.6 so nice a low! The oncologist things I could have radiation proctitis causing issues with my bowels. I am having a scope on Monday to see what shows up but otherwise have had a couple "quiet" weeks since my bad week. Have had a couple bad days but have managed overall. Next scan in September and then I can switch to a 6-month schedule. Woohoo! In the meantime, going to work on getting these intestines to behave.

I was given the same dx. when I had a colonoscopy prior to reversal. They did an argon gas treatment. I don't know if it helped but prior to it I was having a lot of feelings of urgency, fullness and they went away after treatment.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19


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