Ileostomy Care

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Deep
Posts: 31
Joined: Thu Nov 01, 2018 6:10 pm

Ileostomy Care

Postby Deep » Fri Apr 26, 2019 9:36 am

How much waste should be coming out of me 11 days post surgery? I went from having diarrhea and losing too much fluid to now barely putting out 600ml in a 24 hour period. I am to call my Surgeon if it continues this way because according to them, I should have 800-1200ml coming out in a day. I am eating but not very much in a setting. Went five days without food due to complications following surgery, but feel fine now. Just lost my appetite.
11/29/18 Diagnosed T3N1 Rectal Cancer (Age 39, Male, no family history)
01/02/19--02/7/19--- 25 rounds radiation/chemo (Capecitabine 2000 mg)
04/15/19 Surgery, temp ileostomy
7/8/19 Chemo (8 Rounds) Folfox

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susie0915
Posts: 934
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Ileostomy Care

Postby susie0915 » Fri Apr 26, 2019 12:59 pm

I would keep an eye on this. Four weeks after my resection I emptied my bag in the morning, then later in the afternoon felt a couple weird pains. I started to notice nothing was going into my bag. I went for a couple walks to get things moving, but nothing. After a few hours I went to the emergency room as the pain increased. I had a small bowel blockage. An ng tube was inserted in my nose and I was admitted to the hospital. After about a week with no food and nothing in the bag, I had surgery to remove scar tissue causing the blockage. My surgeon reversed my ileostomy at the same time. I knew something was wrong since I generally emptied my bag every couple hours. If you have a blockage you will know, because the pain is pretty intense. Just keep an eye on it and keep moving if possible. Good luck.
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 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6
5/19 CT NED, CEA <.5

Punky44
Posts: 339
Joined: Mon Oct 01, 2018 4:29 pm

Re: Ileostomy Care

Postby Punky44 » Fri Apr 26, 2019 2:19 pm

I would also keep an eye out to make sure this isn’t the beginnings of a blockage. Did they give you a sheet with tips about what to do to relieve a blockage at home before it becomes a thing you need to go to the hospital for? I can’t exactly remember what my mom’s said but something like warm showers, massaging the area, etc.

My mom’s output those first two weeks was literally brown water but now it has thickened up decently. The thickness of it makes it look like “less” in the bag. Just another thought.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at 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 4/23: 2.1; 7/24: 1.9
6/28/19 Reversal and port out

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

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

Re: Ileostomy Care

Postby MissMolly » Fri Apr 26, 2019 4:23 pm

Deep,
Your ileostomy output at 600 ml for 24 hours is on the low end of what one would expect. But you are having output from the stoma. That indicates that you are passing digestive food matter. A good sign.

It is common for the intestine to be under-powered for the first several weeks after surgery. The intestinal motility is laggard. Motility can be erratic, wax and wane, stop and start, or slow to a crawl.

I often advise people to focus on fluid intake more than solid/soft food intake. You primary need is fluids.

When the motility of the intestinal tract is struggling, consuming soft/solid food adds to distress by causing incomplete digestive function and retained stool.

Clear fluids (fruit juice, tea, water with a flavored electrolyte additive such as Nunn’s Tablets or Emergen C, lemonade, chicken broth) and strained thickened liquids (tomato soup, pudding, yogurt, baked custard, Carnation Instant Breakfast) are all A-OK.

Sip, sip, sip on fluids throughout the day.

Frequent sipping of fluids over time is preferred to consuming a large 8-10 oz. glass of a beverage at a single moment in time. It is easier for the small intestine to assimilate and absorb fluids via sipping small quantities of fluid at frequent intervals.

100% grape juice and 100% apple juice have flavonoids that promote intestinal motility and are often the remedy for a new ileostomy with slowed motility. Look for a label that reads “100% juice” (not a juice blend not a juice concentrate).

Some people will need to jump-start a slow intestine with a low dose/partial dose of Miralax or Milk of Magnesia (ex. one teaspoon). As you are less than 2 weeks post-op and in an early period of recovery, dose with an osmotic laxative only ONLY with the direction and advisement of your surgeon.

Walking and gentle stretching does aide the intestine in “waking up” and reclaiming its functionality.

The intestine can be left traumatized in being manipulated and handled during surgery. The intestine often benefits from a gentle approach to re-feeding and hydrating. Gentle walking. Rest and patience.
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.

Caat55
Posts: 665
Joined: Sat Dec 23, 2017 6:01 pm

Re: Ileostomy Care

Postby Caat55 » Sat Apr 27, 2019 11:53 am

You mention losing your appetite but what about fluids? With an ileostomy it is really important that you drink more. Try setting up the fluids for a day and see how much you actually get through. Walking is good for body and mind. Keep moving and take care.
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

Deep
Posts: 31
Joined: Thu Nov 01, 2018 6:10 pm

Re: Ileostomy Care

Postby Deep » Sat Apr 27, 2019 2:05 pm

Caat55 wrote:You mention losing your appetite but what about fluids? With an ileostomy it is really important that you drink more. Try setting up the fluids for a day and see how much you actually get through. Walking is good for body and mind. Keep moving and take care.
S


I am thirsty constantly so downing fluids is not a problem. I have been passing food as well. I just make sure I chew my food well before swallowing. If I miss a meal, the output is watery, and when I eat, the output gets thicker. I am praying that I get through this without a blockage. The emergency room I will have to go to is an hour away. So, trying to keep myself out of there.
11/29/18 Diagnosed T3N1 Rectal Cancer (Age 39, Male, no family history)
01/02/19--02/7/19--- 25 rounds radiation/chemo (Capecitabine 2000 mg)
04/15/19 Surgery, temp ileostomy
7/8/19 Chemo (8 Rounds) Folfox


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