Reversal Log: Experience,Problems, Q & A's

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mm66ny
Posts: 427
Joined: Mon Jan 18, 2010 11:11 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby mm66ny » Thu Jul 27, 2017 9:05 am

AbbyDoo wrote:All the organs of the body were having a meeting, trying to decide who was in charge.

The brain said: "I should be in charge, because I run all the body's systems, so without me nothing would happen."

"I should be in charge," said the heart, "because I pump the blood and circulate oxygen all over the body, so without me you'd all waste away."

"I should be in charge," said the stomach, "because I process food and give all of you energy."

"I should be in charge," said the rectum, "because I'm responsible for waste removal."

All the other body parts laughed at the rectum and insulted him, so in a huff, he shut down tight. Within a few days, the brain had a terrible headache, the stomach was bloated, and the blood was toxic. Eventually the other organs gave in. They all agreed that the rectum should be the boss.

The moral of the story?

You don't have to be smart or important to be in charge... just an asshole


Yes, and now more than ever, that asshole can be your best friend or your worst enemy.
Dx RC, T3N1M0, Feb. 2009
LAR, Ileostomy June 2009
12 Folfox tx
Ileostomy takedown Jan. 2010
June 2014 five years NED
Age 48
married w/7 children
Generally irresponsible

rtcasper
Posts: 50
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: Reversal Log: Experience,Problems, Q & A's

Postby rtcasper » Sun Jan 13, 2019 9:48 pm

Bump, great thread for those looking into the future
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-path stage pT1N0M0-no chemo recommended
Jan 8-stoma takedown
Jan-April- C diff
May-Fecal matter transplant
Sept-Clean scan NED

Lordswood77
Posts: 39
Joined: Tue Mar 08, 2016 1:30 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby Lordswood77 » Mon Jan 14, 2019 10:39 am

Anyone got any advice to curb flatulence?

Had a few episodes recently and cant put it down to anything specific
4/2013 - Diagnosed with Colon cancer aged 35 (no family history) T1N0M0
8/2013 - LAR with temp Ileostomy
12/2013 - Ileostomy Reversal
09/2014 - Clear CT Scan
01/2016 - PET Scan high probability of reoccurance
01/2016 - VATS right lung
03/2016 - VATS left lug
05/2016 - Start CAPOX regime for 6 months
07/2016 - Clean CT scan next scan October
08/2016 - Clear MRI scan following migraines
10/2016 - Finished Chemo & Clear scan, next scan Jan

lakeswim
Posts: 226
Joined: Sat Mar 31, 2018 9:37 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby lakeswim » Mon Jan 14, 2019 11:33 am

Commenting here to save this thread as, apparently, it's my future.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*

mandosquiddy
Posts: 34
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

Re: Reversal Log: Experience,Problems, Q & A's

Postby mandosquiddy » Mon Jan 14, 2019 7:45 pm

Perfect time for bumping this thread.

I had my reversal on January 3rd. Started having very loose stool about 36 hours after surgery. On the night of the 5th/6th I had severe cramps and it felt like the blockage I had prior to discovering I had cancer in March of 17. However, the next day the cramps subsided and I eventually started having loose stool again. I was released from hospital on the 7th. I continued to have loose stool at home until the 8th or 9th when I started having more solid clustering. At first I was excited to see more solid output but quickly realized what a literal pain in the butt clustering is. I did use baby wipes and diaper cream to achieve some relief. On Friday (11th) I continued to have clustering and I noticed my surgical wound was excreting a decent amount of pus. I sent a pic to my surgeon and he advised me to go to my local ER (this was at end of day and hospital of surgery is over an hour away and it was snowing). ER did a CT scan and doc saw nothing in the scan or in the wound to indicate a problem. It was a somewhat pointless 3 hours at the ER but better safe than sorry. After the ER I came home and my stool was suddenly very loose and I had no control but it did seem to empty me out. Yesterday I had my worst clustering yet. I must have gone between 20-30 times and each time seemed more painful. I eventually took Imodium to hopefully slow things down. It seemed to work. Today was my best day since surgery. This morning I had a light amount of clustering (4 or 5 times to the bathroom) and it seemed to be over by 9 am. I managed to household chores, go for a walk and even make a quick trip to the store.

I know I'm still early in the process and thankful to have some good days but I am concerned about returning to work and how to manage. Physically it's an easy job but I really don't want to have an accident at work. How did others manage? How long did you take off? Do I just need to suck it up and where diapers for a bit while at work? The solid clustering I have so far always made it to the bathroom but the loose stool is a different story.
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 small intestine
10/18 Debulking surgery/illeostomy
1/19 Ostomy reversal
12/19 CEA 1.3!!!!

Caat55
Posts: 680
Joined: Sat Dec 23, 2017 6:01 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby Caat55 » Mon Jan 14, 2019 11:38 pm

I am curious too. It will be about 14 months with the ileo by the time I am reversed. I really am nervous, on the floor with kids most of the day so I certainly won't be able to do that for a while, bathroom is down the hall as its on a school campus. Dr. has me doing prehab, strength, core and dieting prior to surgery. I am not heavy but am happy to lose some weight.
It seems most people are reversed within the first year, true? My skin was so trashed after radiation and chemo I couldn't have wiped, even bidet would have been too much.
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

User avatar
O Stoma Mia
Posts: 1603
Joined: Sat Jun 22, 2013 6:29 am

FAQ: How to bookmark a thread

Postby O Stoma Mia » Wed Jan 16, 2019 12:58 am

lakeswim wrote:Commenting here to save this thread as, apparently, it's my future.

Lakeswim -

You have expressed an interest in saving threads for future access. Here is the direct link to the first post in this particular thread:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=38032&p=271257#p271257

Here is another post link that might be of interest:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53157&p=420069#p420069


For your information, there are several ways for registered users to save thread links for future use. One way is to make use of the Bookmarks Folder in your User Control Panel. (Note: You have to be logged into your account for this to work. If you are just a 'lurker' or a 'browser' here, it won't work because you won't have a User Control Panel with the relevant menu items.)

How do I bookmark a specific topic?
You can bookmark a specific topic by clicking the appropriate link in the “Topic tools” menu, which is conveniently located near the top and bottom of of the topic that you are currently viewing (scroll to the very first or very last post in the thread to see this menu). This menu is the one with the tool (wrench) icon. Once you select this drop-down "Topic tools" menu, you can then select the second option ( "Bookmark topic" ) and this will cause a link to the current topic (thread) to be saved in your Bookmarks folder.

Your Bookmarks folder is located in the Manage Bookmarks link in your User Control Panel:
http://coloncancersupport.colonclub.com/ucp.php?i=ucp_main&mode=bookmarks.
Whenever you access this link you will see all of the topic bookmarks that you have created in the past.


NOTE: The bookmark described above is a Topic Bookmark (i.e., a Thread Bookmark). This kind of bookmark will link to the first post (or the last post) of the thread. It does not link specifically to any particular post within the thread itself. If your objective is to create a link that will open one very specific post, then you have to use a different kind of bookmark -- a Post Bookmark

lakeswim
Posts: 226
Joined: Sat Mar 31, 2018 9:37 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby lakeswim » Wed Jan 16, 2019 5:00 pm

Thank you!
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*

mandosquiddy
Posts: 34
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

Re: Reversal Log: Experience,Problems, Q & A's

Postby mandosquiddy » Fri Jan 25, 2019 4:26 pm

I am jumping back on this thread to say that I've returned to work 3 weeks after surgery. I've had a very few good days and am finding immodium to be key for me. I take it at breakfast and at lunch. My BMs have been much more solid, less painful and less irritating. We'll see if I can keep going down this road.
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 small intestine
10/18 Debulking surgery/illeostomy
1/19 Ostomy reversal
12/19 CEA 1.3!!!!

lakeswim
Posts: 226
Joined: Sat Mar 31, 2018 9:37 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby lakeswim » Fri Jan 25, 2019 4:50 pm

Good news! I like to read that there’s some hope for good days. Esp so early on. I hope the good days continue!
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*

Utwo
Posts: 272
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: FAQ: How to bookmark a thread

Postby Utwo » Fri Jan 25, 2019 6:33 pm

O Stoma Mia wrote:If your objective is to create a link that will open one very specific post, then you have to use a different kind of bookmark -- a Post Bookmark
How do I create a Post Bookmark?
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

User avatar
O Stoma Mia
Posts: 1603
Joined: Sat Jun 22, 2013 6:29 am

O/T - FAQ: How to bookmark a POST (as opposed to a TOPIC)

Postby O Stoma Mia » Sat Jan 26, 2019 1:51 am

Utwo wrote:
O Stoma Mia wrote:If your objective is to create a link that will open one very specific post, then you have to use a different kind of bookmark -- a Post Bookmark
How do I create a Post Bookmark?

Thank you for your reply. To create a Post Bookmark you have to do it manually because the software here doesn't provide any menu item or any shortcut key that will do it for you.

The procedure is actually very simply as long as you understand the required syntax of a Post Bookmark and you correctly type in (or paste in) the required components.

I will demonstrate this by example by using the Post Bookmark for the post that you just posted. The full, absolute, Post Bookmark for that post is:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=38032&p=487378#p487378

In contrast, the Topic Bookmark for that topic is:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=38032

If you compare the two URLs above, it will be obvious to you what the difference is. The Post Bookmark has two extra arguments that each contain the post number 487378 of the specific post in question: There is a &p= flag followed by the post number, and then a #p flag followed by the same post number. There are no spaces anywhere in a Post Bookmark, and the URL must be constructed exactly as shown above. There are only three "=" signs in the whole URL.

The only difficult part of this is determining the exact 6-digit post number that goes with the post in question, and not a 6-digit code that belongs to a neighboring post.

To determine the 6-digit code that goes with a particular post you need to look at the address bar of your browser when the browser is anchored on (or focused on) that particular post. To get your browser to anchor on a particular post you do this:

Just above the post in question there will be a line with the author's userid and the date when the post was posted, and immediately above that line will be a line with the title that belongs to that post. Usually the title will start with Re: if it is a ReplyPost, but it could be something different if the author decided to edit the subject line of the reply before posting it. Once you have found the title (subject line) of the post you want to bookmark, then select and click (or double-click) on the title line. This should anchor your browser on that particular post. Once you are sure that your browser is focused on that particular post, then look at the address bar of your browser, find the 6-digit number of the post (and the 5-digit number of the topic) then you will have all of the information you need to create the Post Bookmark according to the template, either by direct typing or by cut-and-paste method.

In brief, here are the steps to manually create a Post Bookmark

1. Navigate to the post that you want to bookmark
2. Double-click on the title that goes with that post.
3. Look at the browser address bar to get the topic number and the post number
4. Manually create the Post Bookmark according to the model above.

If you do this according to the model above, then your Post Bookmark should work the same way for all users, whether they are logged in or not, and whether they have changed their display preferences or not. A Post Bookmark containing only one post-number argument will work for some users but not for others

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Reversal Log: Experience,Problems, Q & A's

Postby justin case » Fri Feb 22, 2019 6:00 pm

justin case wrote:Bump, for miles 66!
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Reversal Log: Experience,Problems, Q & A's

Postby justin case » Fri Feb 22, 2019 6:12 pm

mm66ny wrote:
AbbyDoo wrote:All the organs of the body were having a meeting, trying to decide who was in charge.

The brain said: "I should be in charge, because I run all the body's systems, so without me nothing would happen."

"I should be in charge," said the heart, "because I pump the blood and circulate oxygen all over the body, so without me you'd all waste away."

"I should be in charge," said the stomach, "because I process food and give all of you energy."

"I should be in charge," said the rectum, "because I'm responsible for waste removal."

All the other body parts laughed at the rectum and insulted him, so in a huff, he shut down tight. Within a few days, the brain had a terrible headache, the stomach was bloated, and the blood was toxic. Eventually the other organs gave in. They all agreed that the rectum should be the boss.

The moral of the story?

You don't have to be smart or important to be in charge... just an asshole


Yes, and now more than ever, that asshole can be your best friend or your worst enemy.

Whew still alive !
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Reversal Log: Experience,Problems, Q & A's

Postby Eleda » Tue Feb 26, 2019 5:12 am

Hi there, I'm quarter way through this post and just have a question about prep before reversal??? Is it bowel prep same as colonoscopy, or only fasting like surgery,, it may have been asked already but haven't come across it yes , sorry if it's already been asked and answered
Thanks Adele X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th


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