Loop Ileostomy advice

Hi again Gary476 and welcome to our group.

I’m going to tag Dulac in to see if they can help, but there are others who will hopefully be along soon to share their experiences. You are still in the early days of recovery from this surgery and you do need to give yourself time to get back to your previous fitness levels. I’m not aware of any reason why your ileostomy should negatively impact on your progress but slowly and gently is the usual mantra after surgery. 

Sarah xx

Hello Gary476,

I have had a loop ileostomy for more than three years and it works so well I chose not to have it reversed.

Points to consider are:

Output will be looser and more fluid than from a colostomy because the colon is being by-passed. The colon extracts moisture from digested food and passes it to the urinary system. Consistency of ileostomy output is difficult to control precisely but certain foods can make a difference.

With any form of stoma avoid straining abdominal muscles by heavy lifting - particularly if carrying anything at arms' length. I ignored this advice early on and have a parastomal hernia around both of my stomas. Not uncomfortable but they added a couple of inches to my waistline. No problem with walking at all, in fact I think that walking is beneficial and certainly helps to ease the discomfort from a blockage developing.

Devise a routine for stoma management and when changing the pouch ensure that the skin is clean and dry and free from soap and moisturisers, etc. In particular men should be aware of the need to shave the area around a stoma as body hair can create a leakage path that starts to increase over a few hours.

Keep the pouch drained at every convenient opportunity, it will feel more comfortable.

Any queries - just ask.

Dulac 

Dulac,

thanks for your response. I am managing quite well at the moment. 2-3 km walking daily is keeping me active and helping with the mood issues.

  Getting to grips now with the maintenance side of things, but sleep hours are concerning as there is a lot of output even though my eating stops at 6pm and not to many fluids before bed. Is this an issue I will just have to get used to or can I expect to ease over time? If I could crack this minor inconvenience I would be a lot happier.

kind regards Gary476

Gary476,

This is something you will have to get used to unfortunately. The passage of waste is now unrestricted and the gate is always open with an ileostomy! Since surgery I drink a lot more water and what goes in has to come out. 

I tried eating earlier and eating less, to no avail. Sometimes I take a couple of Ibuprofen tablets at bedtime and sleep right through. Why, I don't know. 

In the early days I had a couple of leakage events whilst asleep, caused by turning over in bed. A long, loose cotton T shirt overcomes that, acting as a slip plane to avoid the pouch from snagging on the sheets. Simple and effective. Also Brava elastic tape flange extenders have given 100% security over the past three years. 

Dulac 

Dulac,

  many thanks again for your time and help. I have had a meeting with my surgeon today and more Chemo, scans and exploratory surgery in 2025, he thinks we should have the Ileostomy reversed by next Christmas.

i am prepared to play the long game and leave it to the doctors and see where the path leads me.

Again thanks for your kind words and have a great Christmas and new year.

kind regards Gary476

Hi there 

I found two dry crackers at 10.pm then to bed at midnight emptying before sleep.  

Up at 8am , this worked very well for the thirteen months I had my Ileostomy 

Wotsits and  dry crackers helped thicken my output. I didn’t find jelly babies helped much though. 

Hope this helps 

Best Wishes 

Thanks Ann,

  hope you are well. I will take your advice and give that a go. I feel like dr Frankenstein at the moment with all my different experiments .

  One thing I am missing is a beer once a day after a long walk in my local pub. I tried one the other night after an early evening walk and it gave me issues with my sleep/pouch routine. But as I say I will try and find the right combinations.

Thanks again for offering your kind advice it is much appreciated and warmly received.

Regards Gary476

Gary476,

I found beer to be a problem too and still do from time to time. I tried switching to dry cider but both seem to pass straight through and into the pouch - but not always. The effect is like having one of the pre-colonoscopy laxatives. Lately things have settled down, but I tend to avoid pints and stick to bottled beer in pubs. At home it's a preference for spirits and mixers. Smaller quantities and lower prices than pubs!

The Spanish Steps perhaps? Plenty of pasta there.

Dulac

Dulac,

  spot on with the Spanish steps. I was lucky to go to the Tour de France this year which began in Italy. Got to travel to Rimini, Bolongne and Piacenza in July, what an amazing experience.

 Back to more important things like beer, I am happy to have just the one one occasion after a long walk as reward to myself and have found a good alcohol free in Erdinger isotonic beer, which is the nearest taste to the real thing. But I understand the implications of alcohol in volume.

Thanks again for you sharing your thoughts,much appreciated.

Cheers Gary476

No worries Gary

I remember having a real ale before going to bed. 
I woke up and my pouch was blown up like a balloon.
It was hilarious, I had to support it to get to the safety of the toilet. 
Dread to think how much wind was in that thing. 
Needless to say I stayed away from that and fizzy drinks after that

I took a while to find my way of handling Whoopi.(stoma)

The best way I found of emptying was to sit on the toilet with seat up 

Yes it’s cold. But the benefits out way the draft 

I could empty sat and had lots of room to aim in the water  So there was no clean up afterwards 

Ha ha. In the beginning I could be in the toilet half an hour !

Best wishes