New member / ileo problem

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Garyh4700
Posts: 1
Joined: Sun Jan 05, 2020 9:17 am

New member / ileo problem

Postby Garyh4700 » Sun Jan 05, 2020 9:29 am

Hi , I had a ileostomy on the 28th of November had a few post op issues with my bowels not waking up then a bad infection that put me back in hospital for a week .got home a couple of days before Christmas and been recovering fine .over the last few days I've been getting the phantom poops and normal discharge but yesterday morning I had a real bad urge so ran the loo and passed a little wind and what looked like stool but later in the day it was back to normal discharge but still the bad feeling of needing to go .then this afternoon same again passed some wind and very little stool like coloured discharge .is this normal for a loop ileostomy? I'm obviously going to ring the stoma nurse tomorrow but for now my head is battered and confused.

KimT
Posts: 684
Joined: Sat Feb 20, 2010 8:53 pm

Re: New member / ileo problem

Postby KimT » Sun Jan 05, 2020 2:17 pm

You might try the discussion boards at Ostomy.org.

https://www.uoaa.org/forum/index.php

This board is not super active anymore and not all of us have ostomies. A former member who passed a couple months ago used to direct people here for ostomy questions and concerns. Best of luck.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

tminor5
Posts: 40
Joined: Wed Jun 13, 2018 11:46 am

Re: New member / ileo problem

Postby tminor5 » Sun Jan 05, 2020 5:48 pm

Yes you can still have movements with a loop ileo. My husband had more with his ileo then with his colostomy. Don’t know why. But it is normal.
DH DX at 46  pT4a,pN1a CEA 1.6
5/25/18 ER bowel obstruction
5/26/18 Colonoscopy couldn't insert stint
5/27/18 Surgery removed 18", not seen on any near by organs, colostomy due to infection
6/25/18 1st FOLFOX (12 cycles)
11/26/18 Last chemo
12/17/18 Colonoscopy clear
3/29/19 Colostomy takedown (temp illeo because of scaring)
5/23/19 Scan (sm node lung believe scar tissue)
6/20-7/25-8/9-8/20-9/5-9/26 Colon stretch for illeo takedown
10/3/19 Scan (node same)
10/25/19 Ileo takedown

Rock_Robster
Posts: 471
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: New member / ileo problem

Postby Rock_Robster » Sun Jan 05, 2020 9:47 pm

Yes this is generally considered normal, provided the movements aren’t bloody or overly painful. The “inactive” portion of colon you have can still produce its own mucus (looks a bit like a pale gel), that can need to be expelled. I also get gas with my ileo - both in the bag and passed normally. Finally there is also the small possibility of some stoma output re-entering the opening into the lower colon (as both ends of the ‘loop” stoma are diverted into your bag). This may end up looking more like a normal bowel movement, but should be modest in quantity.
Male 38; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2
11/18- FOLFOX x6
3/19- Liver resection
5/19- 25 x pelvic VMAT radiation; complete metabolic response
07/19- ULAR (robot), temp ileo, 1/27 LN
08/19- Missed a liver spot
08-11/19- FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19- Liver resection #2
02/20- Ileostomy reversed
03/20- PET & MRI = NED!

NHMike
Posts: 2398
Joined: Fri Jul 21, 2017 3:43 am

Re: New member / ileo problem

Postby NHMike » Sun Jan 05, 2020 11:06 pm

The ilesotomy is a cut and fold so one tube turns into two tubes, one upper and one lower. The idea is that waste flows into the bag from the upper tube into the bag. Waste can flow into the lower tube and then go through your large intestine and then out your rectum. This can happen when the level of waste rises above ileostomy. So making sure that it doesn't get too full can reduce the odds of this happening. What I used to do is to sleep on a memory foam triangular wedge which kept my upper body higher than my waist so that waste didn't flow back to the top via gravity. I also set alarms to wake up in the middle of the night twice to empty the bag.

I found that some things can encourage mucous - for me it was dairy.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT


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