Ileo Reversal - Input?

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scohow66
Posts: 33
Joined: Fri Apr 07, 2017 9:54 am

Ileo Reversal - Input?

Postby scohow66 » Wed Oct 11, 2017 11:06 am

HI folks - had ileo reversal last week and unfortunately developed an ileus. Surgery went well and day one post op was fine until the bowels stalled out. Was inpatient for 6 nights and now finally home and coming thru the fog of pain, gas, bloating, etc. Interested in thoughts about when appetites return, healing of ileostomy wound, reduction of belly distention, etc. I am getting in enough liquids, but eating very little...after over a week without really any food. Experiencing pain around wound and daily repacking is very uncomfortable...feels like a hot poker being jammed into by stomach! Also, the belly bloating and distention is rough, want some way to just release all the pressure. All in all I think I am on the road to healing, but would appreciate tips, thoughts, perspectives from anyone around near term post op from this (i.e. 1-8 weeks).

Thanks!

Scott
52 Year old male
Dx with RC 10/2016 (T2N0M0)
Port implanted 11/2016
Rad with 5FU December 2016-January 2016
LAR robotic with temp loop ileo 4/2016
ypT0N0M0 - cPR to chemo/rad
Ileostomy reversal 10/2017
LARS

218Base
Posts: 3
Joined: Tue Oct 10, 2017 1:35 pm

Re: Ileo Reversal - Input?

Postby 218Base » Wed Oct 11, 2017 11:44 am

My suggestion is to stay in close touch with your medical professionals. My ileostomy reversal didn't go as planned and I made probably made matters worse by not talking to my doctor when I noticed things didn't seem quite right. In my case it was leaky plumbing in my colon that resulted in a number of fistulas one in particular I probably could have minimized. My butt cheek became sore, red, and hot, followed by bumpy feeling skin. Turned out to be a sub-dermis fistula that formed a stool reservoir about the size of the palm of my hand. The surgeon drained it but all of the skin had died (that's why it felt funny) so the result was a big wound that took a very long time to heal. Bottom line. Stay in close touch with your doctors.

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Ileo Reversal - Input?

Postby susie0915 » Wed Oct 11, 2017 11:49 am

Hopefully someone here can help. My reversal was done early due to a bowel blockage, surgeon decided to do since he had to go in an remove
scar tissue. That was 4 weeks after my resection. I did contract c-diff about a day later and that was awful. Constant watery diarrhea. Once that was brought under
control my bowel movements were fairly normal just frequent at times. I don't remember having issues with healing of ileostomy reversal, but did get an
infection in incision where surgeon had to repair blockage and had to clean and pack with gauze until incision closed.

Have you been checked to be sure there is no blockage? When I had my blockage I did have abdominal pain and passed no gas. I had an ileostomy at the
time and nothing was going into the bag. It seemed to happen instantly, I emptied my bag and about 2 hrs later noticed the pain and nothing in the bag. But
my abdomen was not really distended or hard.
Kept an eye on it for awhile and ended up in emergency room as pain did increase. If you had a blockage due to the ileus I'm sure you would have pain.
I hope things start moving soon, but if not you may want to call your doctor or go to hospital to be checked for blockage, if they haven't checked already.
Are you on pain meds that can cause the slow down? I'm not sure if miralax would be helpful or your doctor would recommend if things don't start moving.
Good luck, I hope you get relief soon.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: Ileo Reversal - Input?

Postby rockhound » Wed Oct 11, 2017 4:09 pm

scohow66 wrote:HI folks - had ileo reversal last week and unfortunately developed an ileus. Surgery went well and day one post op was fine until the bowels stalled out. Was inpatient for 6 nights and now finally home and coming thru the fog of pain, gas, bloating, etc. Interested in thoughts about when appetites return, healing of ileostomy wound, reduction of belly distention, etc. I am getting in enough liquids, but eating very little...after over a week without really any food. Experiencing pain around wound and daily repacking is very uncomfortable...feels like a hot poker being jammed into by stomach! Also, the belly bloating and distention is rough, want some way to just release all the pressure. All in all I think I am on the road to healing, but would appreciate tips, thoughts, perspectives from anyone around near term post op from this (i.e. 1-8 weeks).

Thanks!

Scott


I'm three weeks out today from my reversal. Had the original surgery in early May. I was in the hospital for four nights, day three is when things started to finally move in the hospital. I definitely had bloating for the first week or 1.5 weeks (plus lots of intestinal cramping) and my appetite did not come back until about 1.5 weeks afterwards as well. Had lots of runny diarrhea for about two weeks and finally called the surgeon- they had me tested for C. Diff. (negative), then had me start on metamucil last wednesday. That has made such a difference- I am finally having well-formed, though smaller than "old normal" stools. Still going multiple times a day (like 4-10), but that is better than the 15-20+ times of diarrhea like before. I started working again and feel like I can finally go out without being tethered to a bathroom. My incision is still healing, but its finally starting to look like it's scabbing over a bit also.

I did have a partial blockage about two weeks after my illeostomy (ate nuts and some leafy veggies..oops!) and it hurt in waves and there was no output.. finally resolved itself after I took my bag off- like an explosion/fountain, luckily I was in the bathtub. The pain was really intense and like I said, came in waves as the small intestine was trying to push things along... would guess you would have something similar if that was happening.. but don't hesitate to call your surgeon's office!
45 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
5/18 - CT, NED
11/18 - CT, NED
5/19 - CT, NED..moving to yearly CT scans
5/20 - CT, NED
5/21 - CT, NED (4 yr. scan)

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

Re: Ileo Reversal - Input?

Postby MissMolly » Wed Oct 11, 2017 4:43 pm

Scohow:
While I have not undergone a reversal, I have had the unpleasant experience of prolonged lieus.

During the early recovery after an ileus (first 7-10 days) you can expect that the intestinal tract will continue to be inflammed and swollen. It is important not to overwhelm the digestive tract. It is important to avoid large portion sizes and to avoid eating large volume meals.

One option is to graze and nibble on soft textured foods as opposed to 3 defined meals a day. Ex. “Finger foods” such as anaimal crackers or graham crackers, melon balls of watermelon or cantaloupe, single-serve diced peach cups or fresh fruit cups, sliced pita bread with hummus.

It is vitally important to support your fluid intake so that food material moves through the digestive tract. Some people find it useful to use MiraLax or similar osmotic laxative following an episode of ileus. The MiraLax draws water into the intestinal tract and makes it easier for food material to pass through inflammed or narrowed passageways as can be the case after ileus.

Electrolyte tablets such as Nunn’s Tablets, can make water more palatable while adding essential minerals. Grape juice has an added benefit of nudging the motility of a sluggish intestinal tract. Make sure that the grape juice is 100% juice and not a juice blend or juice cocktail.

Basic yoga postures can be helpful in stimulating the intestinal tract to keep humming along. Rotation of the torso and pelvis and long axis elongation of the torso as components of yoga postures is the equivalent of intestinal massage that facilitates the passage of food material. Walking is another tool in keeping the intestines moving. The rhythmical cycle of successive steps and walking stimulates the smooth muscle of the intestinal tract.
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.

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: Ileo Reversal - Input?

Postby Basil » Fri Oct 13, 2017 10:20 am

I am 2 and 1/2 weeks from reversal and just now getting my appetite back. Surgical pain is gone except for minor discomfort when I cough or sneeze. I'm back to work and having one prune juice-induced movement a day. So far, so good.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)


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