adapting to my ileostomy...some detailed questions

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

earthgirl
Regular Member


Date Joined Feb 2006
Total Posts : 51
   Posted 3/22/2006 11:07 AM (GMT -7)   
Hi everyone,
 
I have been out of the hospital for just two days now after having my large intestine removed to rid me of Ulcerative Colitis.  The surgery went along smoothly and there is a good chance I can have an internal pouch in the next year or so.  But I have some questions I thought some of you might able to answer.
 
How often are you emptying your bag?  Should it always look that liquidy?...it seems to me it is more so than when I was at the hospital.  Will my body adjust as I start to eat more and thicken up my stools?  I am afraid of all the little things now like food blockages and stuff.  Also I am still passing some stuff through my rectum, how long will that go on for?  Should I mention that to my doc?  I am having to twice recover from my staples since they took them out too early and had to freeze me and staple me shut again (not pleasant any way you look at it)....so i'm hoping once i am healing from those again things will get better...please tell me they will get better!
 
Earthgirl 

Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 3/22/2006 2:51 PM (GMT -7)   
Hi Earthgirl,
Initially, I wanted to empty my bag everytime I went near the restroom. Then little by little, I felt more confident and would go longer/fuller between emptying. That, you'll get the hang of. The liquid stool, eventually the body acclamates and the small intestine starts to reabsorp that extra fluid that the large int. used to take care of. You'll also start to recognize which foods you tolerate well and which you'll want to stay away from. I know, for me, that potatoes, french fries, pasta, breads are bulkers and I don't do well with refried beans and brussel sprouts (too much gas). Carrots and corn come out looking the same as they went in. Trial and error is the way to figure that out. The rectum thing is normal. We still secrete a lubricant in the rectum even though we're not using it.
If the diarrhea does improve in time, sometimes they will use loperamide before each meal and bedtime. I've not had to take it but my doctor did give me a script for it.

Hope this helps,
Cathy

Suzy2
Regular Member


Date Joined Aug 2003
Total Posts : 335
   Posted 3/22/2006 5:49 PM (GMT -7)   
Hello earthgirl.

I think that Cathy has pretty much said it all. I would like to add though that I actuely continued to bleed from my rectum after my colon had been removed. It was because I still had UC in it. You might not get that, but like Cathy has said, you will continue to pass mucus stuff from time to time. I don't think that you need to make an apointment to see the Doctor about it unless you are realy concerned. Maybe wait until your post op check up and mention it then.


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 3/23/2006 5:54 AM (GMT -7)   
Q How often are you emptying your bag? 
 
A It doesn't really matter how often I empty my bag. Everyone is different. They say between 4 - 8 times a day is 'normal'.  Right now you are probably emptying it more than you need to, ie at the first sign of anything in the bag but as time goes on, you'll get lazier and as Cathy said, more confident and leave it longer between emptyings. They say you should empty it when the bag gets between a third and half way full. I normally do, but have often gone longer than that :)
 
Q Should it always look that liquidy?...it seems to me it is more so than when I was at the hospital.  

A At first it will be watery but as your body adjusts to it's new plumbing, the small intestine will start to do some of the job that the large intestine used to it, ie it will start absorbing more water than it usually does. It will never be as efficient as the large intestine though.
 
Q Will my body adjust as I start to eat more and thicken up my stools? 
 
A Yes!  My stools go from watery to a toothpaste like consistency depending on what I have and haven't eaten. For a list of what foods do what to stool consistency have a look at http://st80.startlogic.com/~ostomate/diet.html 
 
Q I am afraid of all the little things now like food blockages and stuff.  
 
A Most people do not get food blockages and the majority of those that have had one, only get the one!  I've had my ileostomy for 30 years and have never had a blockage!
 
Most ileostomates can eat anything they want once they've healed. The trick is to introduce new foods one at a time and CHEW, CHEW, CHEW!  That way, if it does cause problems, you can identify the culprit and either limit it or totally eliminate it from your diet. I eat popcorn, nuts, peanuts, peas, mushrooms, apple peels, etc all without a problem. Just because a food causes problems for one person does not mean it will cause problems for you.
 
Q Also I am still passing some stuff through my rectum, how long will that go on for?  Should I mention that to my doc? 
 
A This is mucous and shows that the rectal lining is still doing it's job properly, ie lubricating the rectum to help stool pass through. It's nothing to worry about unless it has bright red blood which indicates fresh bleeding which is something you should mention to the doc.
 
Q I am having to twice recover from my staples since they took them out too early and had to freeze me and staple me shut again (not pleasant any way you look at it)....so i'm hoping once i am healing from those again things will get better...please tell me they will get better!
 
A Yes, they will. Once you have healed you should be able to do anything you set your mind to. I've travelled the world, ridden elephants and camels, been rock climbing, etc all without a problem.
 
Your ostomy won't stop you from doing anything (except maybe wearing a bikini) - only your mind will!

I have had an ileostomy for 30 years now due to UC.
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


earthgirl
Regular Member


Date Joined Feb 2006
Total Posts : 51
   Posted 3/23/2006 7:19 PM (GMT -7)   
Thanks so much for all of that useful information!  I am already starting to feel more confident with things.  I had a homecare nurse visit me today and was pretty much able to change my appliance on my own even with the inconvenience of working around the bandages from my staples.  They are still leaking a bit but starting to heal...the homecare nurse will check them everyday and that will do a lot to put my mind at ease!  All these little things have been very stressful to handle.  I know i should try to get up and moving but I am afraid to slow the healing of my stomach so it's a fine balance!  I am really trying to just take things day by day and tell myself that I will be feeling much better soon (even though I am still experiencing highs and lows each day!).

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5697
   Posted 3/24/2006 7:56 AM (GMT -7)   

A temp ileo will usually have very liquid stool as the location of it is higher up the intestine.  This will change when you get your j-pouch functional and your stools will be more formed.  The discharge from the anus is completely normal, even if tinged with blood.  The discharge is merely a shedding of cells which indicates healthy tissue.  For some reason surgeons never tell us to expect this?  It sounds as if you are doing very well.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


lifebegins
Regular Member


Date Joined Jan 2006
Total Posts : 72
   Posted 3/24/2006 9:39 AM (GMT -7)   

Congratulations earthgirl on being brave and having the op. :-)

When I had the bag I found the more I had to drink the more watery the output was. I was told to eat marshmallows to thicken it up, although I found the bigger the meal I ate the thicker the output.

I had the bag for 10 months and again the more I had to drink the more likley it was to pass mucus from the bottom. Changing the bag at first seemed to be continuous, but you will find the more you get used to it the less you will do it.

I never had a blockage although I stayed away from things with thick skins like onions and peppers.

At the end of the day it sounds like you are doing really well and as time goes on everything will become as normal as brushing your teeth. Give it another month or so and you will realise how normal life will feel again.

lifebegins


Had UC 2002 - 2005
Meds: Prednisolone, azathiaprine, asacol, fosamax, predsol suppositories, asacol suppositories, predfoam, painkillers, aloe vera juice, special diet ect.
Whole colon diseased, annemia, dhydrated, weight loss ect.
Had 1st operation April 2005, 2nd operation February 2006.
Feel great, aged 29, married,want children now.
Everthing that is crossed out no longer applies to me thanks to the operations.

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 11, 2017 6:09 PM (GMT -7)
There are a total of 2,904,180 posts in 318,729 threads.
View Active Threads


Who's Online
This forum has 158125 registered members. Please welcome our newest member, PolarisBug.
424 Guest(s), 16 Registered Member(s) are currently online.  Details
MDNative, mattamx, MamaLama, Corvette Joe, countess18, ppm guy, Girlie, Sherrine, Rickk90, Mark FW, Herophilus, jrpsf, LivingThroughLyme, three 5's and a jack, jackinthebox, Tall Allen