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

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Gravelyguy
Posts: 178
Joined: Thu Jul 05, 2018 6:03 pm

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

Postby Gravelyguy » Tue Feb 26, 2019 12:05 pm

Hi Eleda,

For my reversal it was just fasting like before surgery. Good luck on the reversal. It felt great, for me, to wake up without a pouch!

Dave
6/17 dx mCRC 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

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

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

Postby MissMolly » Tue Feb 26, 2019 1:40 pm

Eleda wrote: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
Thanks Adele X


Hi Adele:
Your surgeon will likely have you follow a clear liquid diet for about 24 hours before your loop ileostomy take-down surgery.

Average transit time for food from chewing and swallowing (yum, yum) to the end of the small intestine is 12-14 hours. The goal is to have the small intestine fairly clear of digestive food material in making the reconnection.

Some surgeons will be less stringent in holding to a 24 hour clear liquid protocol, with some instructing to keep to clear liquids for 12 hours prior.

My own take is that a longer 24 hour clear liquid period gives more leeway in reducing potential risk of seepage of fecal contents and possible complications.

Certainly the prep for your reversal will most likely not be as onerous as what you may have had to follow for other intestinal procedures.

Sending you best wishes for a worry-free reversal,
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Eleda
Posts: 325
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 1:50 pm

Thanks Karen,
that's an ease to know lol, hated movicol :| :| :| :| :|
Liquid diet is no problem , thanks and fingers crossed this time next month it will be all over

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

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

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

Postby MissMolly » Tue Feb 26, 2019 2:10 pm

Just a word to ease some who are concerned about life after a loop ileostomy reversal and considering a colostomy if effects of LARS syndrome are untenable . . .

A loop ileostomy, as is placed as a temporary ostomy to allow for healing, is respected by those like myself with a permanent ostomy to be among the most difficult ostomies to take care of and live with. A loop ileoatomy is high maintenance. No doubt about it. The stoma is sited higher up the small intestine than an end ileoatomy with significant effects.
1. Fecal output of a loop ileostomy is highly liquid in consistency and of high volume. Emptying a pouch is on the order of 12 times a day. Dehydration is a concern.
2. Fecal output of a loop ileostomy is higher in digestive enzymes, with skin irritation and skin breakdown a challenge.
3. The stoma size and configuration of a loop ileostomy is far larger and more overwhelming to see and process emotionally as well as to pouch successfully. A loop ileostomy has 2 stomas that sit side by side (active stoma and mucus stoma) as a length of intestine is split longitudinally. The larger size of a loop ileostomy stoma can be difficult to pouch. A difficult to pouch stoma lends to more disconcerting leaks and wafer failures and overall frustration.

Little wonder individuals on this board welcome a loop ileostomy reversal.

But is also leaves individuals cringing at the thought of an ostomy again if post-reversal bowel control is lacking. The thoughts of their loop ileostomies are like PTSD.

An elective ostomy where LARS syndrome is severe is not a return to a loop ileostomy. An elective ostomy would be an end colostomy positioned depending on the remaining sigmoid colon or rectum.
1. A colostomy would be a small, single stoma positioned on the left side of the body.
2. Fecal output with a colostomy is usually similar in frequency to a person’s pre-existing bowel pattern - a bowel movement once or twice a day as compared to an ileostomy where fecal output is almost constant.
3. Pouching options for a colostomy include single-use, disposable, closed-ended pouches. What does this mean? It means that a person with a colostomy wears a pouch that is empty for the majority of the day. After a bowel movement, simply remove the soiled pouch and place on a new, fresh pouch. Easy peezy. Place the soiled pouch in a zip lock bag/doggy poop bag and then toss into the regular trash. Pouches come in a variety of sizes, from a 5” mini pouch to a 12” maxi pouch.
4. Fecal output with a colostomy is semi-soft with far fewer digestive enzymes. Skin irritation is far less. Most people use far fewer accessory ostomy products to secure a seal with a colostomy. Far less need for use of barrier rings or securing adhesive strips.

Overall, the care and maintenance of a colostomy is far less onerous and distressing than a loop ileostomy. For anyone where post-reversal LAR symptoms are robbing you from a quality of life, do not be afraid of considering a colostomy. The two experiences are vastly different. A colostomy is a “piece of cake” as compared to a loop ileostomy.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

lakeswim
Posts: 209
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Wed Feb 27, 2019 5:58 am

MissMolly. Informative post. Thank you.
50 - F - Mom
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - MRI & flex sig show tumor gone
Mid-Feb 19 - MRI & flex sig show tumor gone
W&W

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

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

Postby Eleda » Wed Feb 27, 2019 3:45 pm

Another trivial question????????
So I do think the reversal log is a great idea,,,,
Any pictullar type of incontinence underwear I should get,,, don't want to get 10 different varieties, before I get the right one,
Obviously people may have different preferences but I'm sure there may be a common one which works best for our situation ( liquid feces :roll: ) as apposed to bladder control ones,
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

justin case
Posts: 4247
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

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

Postby justin case » Wed Feb 27, 2019 4:04 pm

Eleda wrote:Another trivial question????????
So I do think the reversal log is a great idea,,,,
Any pictullar type of incontinence underwear I should get,,, don't want to get 10 different varieties, before I get the right one,
Obviously people may have different preferences but I'm sure there may be a common one which works best for our situation ( liquid feces :roll: ) as apposed to bladder control ones,

I carried a spare pair of under ware, just in case ! It's also good to know where there are places on your travels that have restrooms. I've never needed a control device . A fast foot once in a while .
justin case
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: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

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

Postby Eleda » Wed Feb 27, 2019 4:18 pm

Ha ha too funny Justin :)
I remember having a leek after my resection ( no one told me about that :x )
Or the mucus poops so just don't want to b blindsided this time
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

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

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

Postby Eleda » Wed Feb 27, 2019 4:19 pm

Looking forward to that part Dave, but pretty much dreading the recovery process on this one
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

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

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

Postby MissMolly » Wed Feb 27, 2019 7:02 pm

Eleda wrote:Any pictullar type of incontinence underwear I should get,,, don't want to get 10 different varieties


I was recently diagnosed with a tunneling fistula that has decided to drain from my surgically closed backend. A constant seepage. I found “post pardum mesh underware” on Amazon that is proving to be very useful.

The mesh underware is like fishnet material - stretchy, airy, comfortable, and stays in place without having to reposition or tug on the underware. I line the mesh underware with a liner pad.

I am technology-challenged and do not know how to post a link to the mesh underware. It is listed as “post pardon mesh underware” on Amazon. There are similar mesh underwear options for men.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

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

Postby Eleda » Mon Apr 01, 2019 9:27 am

At the moment miss Molly, I've now a fistula going from rectum to vaginal canal about 3cm from anal verge which I'm hoping will heal before we'd or I'm back to theatre to reverse my reversal to allow to heal,,,
It's literally a pain in the ass, to see what problems a tiny leak in that area can cause

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

Eleda
Posts: 325
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 Apr 16, 2019 4:35 am

I'm actually using them ATM miss Molly because of my incontinence :| STILL
I'm absolutely in a heap ATM
I'm 4 weeks out and (sorry for the graphic contents)
My ass is bleeding from wiping ( water wipes or shower head only)........

Along with the cheeks of my bum ( using truckload of zinc cream and aquafore)
My hemmorides are the size of grapes making it hard to clench and hold ,,,...!!!!!!!!......all for a shart producing MILK DUD :x :x :x

Stated on physillum husk yesterday 1tsp, today X2 )with a banana, and had 2 pieces of bread ( still lots of clustering)
Same today ( I'm afraid to eat because what goes in must come out :|

I don't seem to have much control still,( poo is still soft)
Will it take much longer to improve,,,
I've read every single reversal post and such differences between recovery
At least I can laugh when I have to run mid conversation from someone,,,, :D
Not so much when I'm scraping poo of a bloody bumm
Any help appreciated

ADELE
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

User avatar
juliej
Posts: 3017
Joined: Thu Aug 05, 2010 12:59 pm

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

Postby juliej » Wed Apr 17, 2019 6:11 pm

Eleda wrote:I'm actually using them ATM miss Molly because of my incontinence :| STILL
I'm absolutely in a heap ATM
I'm 4 weeks out and (sorry for the graphic contents)
My ass is bleeding from wiping ( water wipes or shower head only)........

Along with the cheeks of my bum ( using truckload of zinc cream and aquafore)
My hemmorides are the size of grapes making it hard to clench and hold ,,,...!!!!!!!!......all for a shart producing MILK DUD :x :x :x

Stated on physillum husk yesterday 1tsp, today X2 )with a banana, and had 2 pieces of bread ( still lots of clustering)
Same today ( I'm afraid to eat because what goes in must come out :|

I don't seem to have much control still,( poo is still soft)
Will it take much longer to improve,,,
I've read every single reversal post and such differences between recovery
At least I can laugh when I have to run mid conversation from someone,,,, :D
Not so much when I'm scraping poo of a bloody bumm
Any help appreciated

ADELE

Adele, have you tried Calmoseptine? It's a miracle worker for sore bums!

https://www.walgreens.com/store/c/calmoseptine-ointment-to-prevent-%26-heal-skin-irritations/ID=prod3285901-product

And are you taking probiotics? VSL Probiotic 3 (often called VSL #3) has helped many people and is definitely worth a try.

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 6/13/2019, CEA<1

tminor5
Posts: 30
Joined: Wed Jun 13, 2018 11:46 am

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

Postby tminor5 » Fri Apr 19, 2019 9:44 am

This was a very good thread to read. My husband had a reversal for his colostomy on March 29 however, since the dr was worried about leaking (even though the test passed during surgery) he decided to give him a temp illeostomy. Boy has that been a change. Butt we saw his nurse who helped pouch is ostomy and she helped us pouch his illeostomy. It is now making it 3 days. The surgeon said if he had leaked at all he would have a permanent colostomy. He will go in for the barium test on May 31 and hopefully have a full reversal that next week.
DH DX at 46  pT4a,pN1a CEA 1.6
5/25/18 ER suspected bowel obstruction, found infection and diverticulitis
5/27/18 Colonoscopy found colon cancer, couldn't insert stint to do chemo first
5/27/18 Surgery to remove 18" of colon and cancer 1/33 lymph nodes not seen on any near by organs, has colostomy because of infection could reattach after removing tumor
6/25/18 First FOLFOX chemo treatment (12 cycles)
11/26/18 Last chemo treatment
12/17/18 Colonoscopy showed surgeon got all cancer

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

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

Postby Eleda » Fri Apr 19, 2019 11:31 am

Thanks Juliej ,,,
I'd try anything at this point!!!!!
Tminor5 I'm confused as to getting a temp colostomy then illeostomy before reversing?????

I had an illeostomy and after reversal and a fisture should up next day( I noticed) and he was then going to give me a closteomy until the fisture healed but in second surgery a week later he decided against ( maybe my complete devistation at the time helped forced that )
So I'm hoping it will heal, and on my merry way I go!!!
My leek barely showed with the gastrografin enema, I was bouncing around so it would show because I knew it was there,,,,
Jesus if we get through this well get through anything
We're a tough bunch

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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