Coming home....and ostomy questions

John23 said:

Jen2012 –

 

Re:

“The ostomy nurse said there really aren't any restrictions on the diet”

 

With an ileostomy, eating fiber is a no-go. Fiber is great for scrubbing the colon (like a pot scrubbing pad), but for an ileostomate, fiber is not only useless, but it can be a contributing factor (if not the cause) for an intestinal obstruction.

 

While most intestinal obstructions are a result of an adhesion or hernia, obstructions from food products that do not break down easily, can be a cause as well. Most often an obstruction due to food will be at the location of the stoma itself, since the intestine has to make a tough turn to exit the body (it usually goes downward, not sideways). It’s at that “elbow” of a turn, that undigested food can jam up.

 

Contrary to what that nurse has said, a diet modification is necessary for ileostomates. Chewing food well (like mamma always told us to do), is very important. If you chew well enough, things like peanuts or popcorn can be made into small enough particles to pass through easier. Things like Broccoli and corn can be difficult, and is often the cause of a food obstruction for those that are more prone to food obstructions.

 

As time passes, you may have problems with adhesions. Adhesions are a result of the normal healing process, and although good for the skin’s healing, they can be very problematic inside the body. The intestine will adhere to other organs, or itself, causing it to lose it’s flexibility that allows the passage of food products.

Adhesions usually take 2 to 3 years to develop into a problem, if they happen at all. The likelihood of having adhesions after abdominal surgery it upwards to 75%, so be prepared.

 

Taking care of dietary matters and avoiding what does not dissolve easily within us, is important for an ileostomate. As time passes, experiment with some of the things that were avoided at first, but always, always chew well!

 

Re:

“Nurse also suggested getting lots of cheap washclothes and maybe just throw them away after using them”

 

Where the $%^&* do they find these nurses?

 

Listen, go to my “profile page” and to my “blog” there. I have a fairly long dribble of dialog that you might find helpful in the “Stoma Care” section. (here’s a link: http://csn.cancer.org/node/227905 )

 

Use a washcloth that’s been washed in hot water, without soap or any type of conditioner. We buy the el’cheapo washcloths from Walmart (White cloths, 18 in  package for around $4~$5). Wash them out with hot water after use. When they get tired, toss ‘em; usually about a month per…

 

Wash the peristomal area with nothing but hot water. NO SOAP. No skin conditioner, no adhesive remover, no topical dressing. Dry the skin with a paper towel, or 4x4 cotton pads (I buy those in bulk on ebay for cheap).

 

All of that is explained in the “blog”. Let me know if you have any questions and I’ll be more than happy to assist.

 

There’s a ton of misinformation regarding the care of a stoma, and it’s been the cause of misery for new ostomates for years. The info in the blog is basically what the manufacturer provides, but no-one seems to read.

 

Be well,

 

John

 

 

John - thanks for taking the time to share so much helpful info.  I did check out your blog after Cyn mentioned it.   The discharge instructions came home with "low residue diet" restriction.   Which is completely opposite of his regular diet.  I'm the one that still has to sneak in the occassional while pasta when the quinoa or wheat pasta just isnt cutting it!  Weird how much our diets have changed - first with my son's diabetes diagnosis in Nov/Dec and now this.  Crazy how we felt we were eating healthier before diabetes and cancer!

I was telling him this morning that he has to chew up his food - not something he's used to after growing up the youngest of three boys ....inhale and move on or starve!  The visiting nurse told him the same thing this morning, so I think he's be more careful. 

Your instructions sound great and easy to follow - and we will follow them.   He has a little plastic bridge that holds the stoma in place right now, which makes changing the appliance a little more tricky - hopefully it'll get easier when it comes out next week.

This is the guy that even after 20+ yrs of marriage, he still locks the door every time he uses the bathroom - so he is less than pleased about me helping him with any of this.  So far he's been emptying and cleaning on his own, but I think I'll be doing putting on the new appliance for a while.

Chelsea71 said:

Hey Jen. Thought of a couple
Hey Jen. Thought of a couple more things. Steve and I have learned everything the hard way. For example, it is imperative to drink lot of water when you have a permanent or temporary ileostomy. When the colon is not being used the body becomes easily dehydrated and kidney stones may develop. This is the last thing you want to have to deal with. On a separate occasion we learned that during the really hot weather, it is easy to become dehydrated and it can cause sections of the small intestine to shrink, therefore, a blockage develops. (The bag stops filling up). This lesson got us three nights in the hospital. This was back when we were novices. So, water is very important. I'm guessing the nurses at the hospital explained all this. The last thing is skins on grapes. (and likely other fruit skins). This can be big trouble! Pieces of skin can block off the hole.

I was just thinking back to when Steve was discharged after his colectomy. We arrived home from the hospital with a stage four cancer diagnosis and an ileostomy. I felt completely frightened. I remember thinking that this must be what it feels like to bring a new baby home from the hospital when you have no idea how to care for it. (Minus the joy, of course). I'm sure it's easier for you as you've adjusted to the cancer situation and then just the fact that the ileostomy is temporary. Anyways, I'm sure it will be somewhat of an adjustment for you guys. Good luck with it all.

Thanks Chelsea - I mentioned the drinking...and so did the visiting nurse again.  He looked at me like wow you have been doing your homework

I've brought home 3 new babies from the hospital...and a hubby with a new ileostomy.  This is much more frightening and overwhelming!  Last night was difficult for the whole family.   Hopefully we'll all get into a routine and find a new normal.  Yes the fact that it is temporary does make it easier. 

All of this advice from people who have been there is so helpful! 

Annabelle41415 said:

Welcome Home Hubby

Can definitely understand the commotion that goes on with this disease and especially with young children.  Going up the stairs is a problem but it is managable and the more he walks the better he will feel.  Believe me, walking hurts like heck, but it's the best way to get better, plus going up those steps is another good activity.  As far as the washcloths, they can become dirty, but they can always be washed and what I'd do is use the same washcloths just for the cleanup and just wash them.  You might have 5-7 but keep those specifically for those washings.  Why would you ever just throw them away.  Never heard of that and it is just a wasteful idea.  Shoot if I'd thrown away every underwear that had poop in them I'd never have any left.  Hope hubby is feeling better now that he is home and you get some rest yourself.

Kim

Thanks Kim - he made it up and down all of the stairs and did okay!  Pain meds help with that I'm sure.   Hopefully some rest will come tonight.  Dog was sick last night and vomitting from 3 to 5.  The fun here never ends.  Could easily dose off now, but have to go get my son in 15 mins.

Did you wash the washcloths in the machine, with soap?