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all ileostomys

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

need help went threw 4 bags last night leakage, husband angry with me say its my fault
bags gets full of gas dos not empty in time this is so hard for me but i will hang in there because i love him and in sickness and in health . any info will help

michelle

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Michelle,

I wish I could give you practical advice on the ileostomy bags, but I can't personally, since I didn't have that surgery. I'm sure there must be support for you or resources for you to talk to someone about these issues. Contact your doctor or even hospital's oncology dept to see about contacting an ostomy care nurse (or whatever they call it, but I've heard of this)- they should be able to give you advice, maybe different type of bag, or maybe what to eat, not eat to cut down on the gas, how to avoid leakes, etc.

I want to address my concerns for you, however... reading between your lines, I'm hearing that you are completely worn out, want to stay devoted, but feel that your husband's responses of frustration towards you instead of gratefulness towards you are REALLY testing your committment level. My heart goes out to you. I will be praying for you to be given a "booster shot" of patience and strength physically, mentally, and emotionally. I will be praying for your husband so that his physical afflictions and symptoms will be minimal and that he will not take his frustrations out on you. I pray that he will be given a sense of peace and calm, which will begin to show itself through his mood and that he will show his gratefulness to you for your devotions and help.

It may not seem like it at the moment, but I believe it will get better.
Also- another thought- could you speak to your husband's doctor(s) about any possible medications to help control his mood/anger and/or possible depression, if that could possibly be an issue for him? Depression is common after cancer diagnosis and life altering surgeries. Please do this- it could very possibly help both you and him both.

Best wishes and God bless you and give you strength,
Lisa

funnyguy
Posts: 90
Joined: Jan 2007

couple of ideas based upon experience.

first of all - I never found a bag that vented gas properly. And you are experiencing a blow out. recommend that he doesn't eat for several hours before bed. try gas-x or something similar like bean-o if he can tolerate when eating last meal of the day. Avoid gassy and greasy foods for awhile until he gets used to the ostomy (no veggies, carbonated beverages, etc.).

He's grumpy at getting this thing. I get it and you are a strong person for helping. I went it alone because I was embarrassed to ask for help. God bless you.

He may have to wake up and vent it every couple of hours until his body adjusts post surgery (I think I recall that he just got this recently?)

Here is a tip at putting the wafer on his skin to eliminate an opportunity for a leak at that point. Stretch the skin around the stoma, push down on the adhesive of the wafer and than let the skin relax. do this all the way around the stoma until the wafer is completely sealed. than when he moves his skin won't "pop" the wafer off.

keep at it!

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MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

Hugs to you, Michelle!!! Keep hanging in there. When your hubby is feeling better and things are seeming under more control to him, he'll realize he was being short and thank you. Make sure you take some time for yourself to rest, relax and pamper yourself when possible. This is taking a lot out of you and you need to be good to yourself too so that you can keep going. Keep hanging, girl!!

Big hugs!

Jorie

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

It was a better day yesterday until the evening we went to bed then at 11.00 he got up he had to go to the living room he looked very anxious and scared, i got up with him but this went on all nite. about 4.00 am he came to bed , between the pain from surgery the bag the staples he is hurting pain meds not really helping (morphine). I took a shower this morning and i got out he started crying the bag was leaking again so i changed it and then he started throwing up alot. his brother is there to take care while i am at work, thank god. i will talk to his dr about his aniexty.I know i can do this for him but all of your encouragement helps me to be strong that really helps me alot.I wanted to take him to er last nite but he said no, I hope he will feel better today .PS he is not that angry with me now.I understand his position and his feelings I no he doesn't mean it .Its a bad time for him right now.

thanks
michelle

tiny one
Posts: 467
Joined: Jan 2009

Hello, I sure know what your husband is going thru. I had an ileostomy for 10 months. Find an ostomy nurse and a wound clinic, your hospital should be able to give you info on this. There are alot of different bags and appliances. Some work better than others. I had good luck with convitec brand. The bags I used velcro'd at the bottom instead of the clip. I didn't have alot of problems with leakage. For pain has he tried a warm heating pad on the area. If he's vomiting it could be the morphine, some people react to this drug. Also the area around his stoma only clean this with warm water and a washcloth. Any creams or soaps and the appliance may not adhere good to the skin. I usally had to change the appliance every 5 days, more in the summer if I was active in the heat. A bag is hard to adapt to mentally and it takes getting used to, to deal with it. I was able to push mow when I had mine and do other physical tasks. It takes the surgical area awhile to become less sensitive. Also some clothes may not be comfortable right now, especially jeans, pants like dockers might be better or even sweats might feel good. This will get better fairly soon. God bless and saying prayers for you both.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi again Michelle,

Just wanted to let you know I'm still praying for you both. You take care, girl. As tiring as it probably is to go to work, at least it's a place where you can still (hopefully) feel needed somewhere else and where you can be away for a little while. Do take the time to get rest and occasionally pamper yourself (getting a manicure/pedicure might be the thing- I'm definitely not normally into that- my nails will tell you that by looking at them :), but it's a way of doing something every once in a while just for you).

Take care,
Lisa

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

You both are in my prayers nightly, just wanted to echo what others have said; you are doing an awesome job in the midst of a very difficult situation! Angel is undoubtedly pissed about having to deal with the ostomy and since you are there, he takes his frustration out on you; he's human. I am sure he will apologize later when he is feeling better and you guys have adjusted to his new normal. Definitely get an ostomy nurse on the phone, from what I have heard on here they are angels and can come to your home and help with the appliance issues. Be strong and persevere, asking God for the strength and comfort you both need.
mary

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