Tuesday, December 13, 2011

Confidence after Ileostomy surgery--basic facts and Ileostomy Diet (plus 3 PDF Googledocs on the subject)

This is the Ileostomy Diet guidelines by The A.S.P.E.N Nutrition Support Patient Educational Manual
As many many forums on this topic will tell you, wait waaay longer than the doctors say before you begin to eat normally. With my first ileostomy operation, I had them bringing me hamburgers the second day! But after extensive reading, and my husband's research, you really are supposed to wait 6-9 weeks before eating "normal."
That means soft things, watery things, a low-carb and substance diet. Lots of soups. Seriously, your doctor is likely a surgeon--not someone who deals with the nutrition after surgery. He did his job--now get out of his hair. Your stoma nurse will even assure you that you can start to eat normally.
You have to take it easy lifting and moving things around, including moving yourself, right? Because your stomach muscles are still healing. Well so are your intestines, man... think about it. These little squiggly squibs aren't used to being chopped in half and shoved around and sewn down. Who would be? Can't blame them for being sore with me after surgery. They did not like that kind of treatment at all. They even give mournful wails and squeals at times as if to express their sad humiliation and shock.
Like any part of the body, it takes MONTHS to properly heal. You may not  be able to see bleeding from your fading scar, but on the inside, it's still fighting to heal itself.

Since I'm posting GoogleDocs today, here's another PDF from my desktop.
This little shit is regarding Confidence After Ileo Surgery, by ConvaTec. Let's just say the facts are good for people that know absolutely nothing about this surgery, like your grandparents or slightly "special" neighbor, but for the majority, I find it rather insultingly unhelpful. It's literally BASIC. You won't find any serious or personal questions answered there.

Here's yet ANOTHER one:
this time though, it's kind of insightful in some ways. It is briefly about Colostomy, Ileostomy, and Urostomy life changes, small touching on diet, gas odor ect, bags, and activity level. Very brief though, so don't expect a lot out of it, but at least it's a little more information.
This really should have been one of the first posts I did, since it's kind of an introductionary thing, but I hope at least someone can get a bit of use from the Docs, or a bit of amusement.

I myself can eat those really boiled carrots that are completely mushy like baby food. Yes, I tried baby food for a week after my surgery---hell on earth. Horrible shit. Even the good expensive kinds. How in Buddah's name do babies eat that shit? I guess that's why after you give them a taste of real food, they never want to go back. For good reason. Just like giving dogs table scraps will spoil them from their food pellets.

See this kid? He knows what's up. "You shove this shit in my mouth one more time, I'mma shank you."

I can also eat mashed potatoes and gravy that are really really runnilly swimming in butter. Butter because I need the fat, and its watery because even scrambled eggs gives me a blockage. I've found that for everything I eat, drink twice its amount in fluids afterwards. That for me means fresh juices or hot tea with a pinch of sugar.
Like I've listed before, V8 is a god-send. It gives you the veggies you can't eat and still lets you have all the yummy nutrients. Carrot-juice is good too, but so are almost all juices.
They also forgot to list B12 shit on their Docs. The ileostomy is cut off and sewn down right on that part that absorbs B12. I get a shot once every month (another thing I desperately need to get in order in Canada) but I also take a sub-lingual dropper of it in this red liquid form.
 You can never get enough b12 from food, because your body isn't going to absorb it. Get them shots, yo.
And multivitamins. Can't stress that enough. Not to mention pro-biotics, especially for women to make sure we don't get yeast infections. Ah yes... yogurt is another thing I can eat, and most puddings, obviously not tapioca though, but I used to love it so :(

Avocados have alot of nutrition in them, and if you mash it up with wasabi and soy-sauce, you can even pretend you can actually eat sushi again! I just recently made a huge platter of sushi for our going-away party. (For when we move to Canada in a week). I cooked sushi and peirogi's and chicken pilaf and breads and I can't remember what else for our wedding.

I cook every day for my husband's meals... and I'm damn good at it too. But I miss being able to eat the things I make :(

Let's see... alot of ileostomates have a problem with drinking alcohol... but not me! Just do it in moderation and have something thicker (like a milkshake or my favourite, an Ensure) as a chaser. You need to cushion that alcohol with something healthier to ease it down your digestive tract.

In moderation, I can eat crackers. I've found pita pockets, cooked or fried in oil, become very crispy, thus turn into a crunchy powder when I eat them. This is a "safe" food, because it dissolves so quickly in my mouth, whereas eating bread of any kind normally results in glutinous ball of crap in my stomach that of course causes blockages, no matter how much I drink with it.
Every morning I rip up part of a pita and fry it in a frying pan, and very quickly they brown. Then I pour the oil I cooked them in (Olive Oil) and the chips into a bowl and eat them with a smear of warm cream cheese sprinkled with garlic. It is a very fast and delicious meal, and eating the oil with each bite of pita helps me both with the Omega-3 fats in the olive oil, but also helps me digest it better.

I eat the same thing every day without much variation, sometimes mashed taters, sometimes it's avocados. It sucks the balls, but what can I do. This is life. I eat my pills and my vitamins and ensure and hope that somehow that combination will keep me alive for another year.


  1. Oh wow. As said, my heart just bleeds for you regarding the severity of your diet restrictions Darlin', and this along with all your other health & med challenges. But then I think of your amazing passion & zest for life in the face of it all, and that brings a smile to my face.

    Thanks for posting as am certain that with this further knowledge about you on board, you'll be an even more so blazing torch of an inspiration to your Blog visitors, as you are to me ;D

    So glad you've been able to work out what works for you (which couldn't have been an easy process of experimentation & elimination, am sure!), and EXTRA delighted re. the fried pita breads! Yaaaay for at least SOME variety in choice & textures hey? You've quite obviously worked out very well all the right things to ingest 'coz you look fabulous!

    Bring on the amazing stem cell therapies so that hopefully in the not too distant future we can all regrow all the healthy bowels that we need! ;-)

    <3 Always xox

  2. "...and elimintation" ---HAHAHA! Pythonette, you made a pun! But thank you so much for you kind words!

    <3 TLLF <3

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  5. Hahahaaaah! It must be a natural gift ; ) - I hadn't even realized I'd done it! Cheers <3

    (P.S: My apologies for the multiple repeating comments! Send via my new android phone which kept indicating that my comment submissions had failed!? Crazy.)

  6. I must be really lucky in this area. Other than a blockage a week after surgery (which we're pretty sure was an adhesion or a twist rather than a food issue), I've had no problems. At 6 weeks, I'm eating almost a normal diet. Still going to avoid seeds, dried fruit, and nuts, but otherwise things seem to be going okay.
    I was on a low residue diet for MONTHS as well as a crazy restricted carbs diet for months before that in an attempt to control my colitis. It's soooo nice to be able to eat semi-normally again.
    Do you think you'll be able to add more foods in over time or are you as healed up as you're going to be?

  7. Hey Nessa.
    Before surgery, I was so excited going in, thinking of how I'd finally be able to eat again, like I could many many many years ago. Unfortunately, I now can actually "eat" very little, even less than in recent years, and most of my food is from very thick liquidy nutrition, Ensure. I know there are a few others like me out in this ileostomy kingdom, but I'm far from average, so I don't exactly go on and on talking about it since it is so highly specific. I have slow transit for an ileostomy, and my stomach isn't emptying properly.
    I'm beyond healed--surgically. But I and my family are sure sad for the way my hopes were dashed. It doesn't seem likely I'll improve, seeing as I was doing better during the "tough" time after surgery than I am now. I have other health concerns though :/

  8. That sucks. But like you keep saying-- at least you're alive.

    Why is it that those of us with a serious health condition always seem to have half a dozen other serious issues as well? Can't we get a break??

  9. The answer people always give to comfort themselves is that we're never given more than we can handle. If that was true, there wouldn't be any suicides. Sometimes, life just fucking sucks for some people. It just does. No explanation.
    Consistant failures, loss and defeat teach you the futility of your actions and in turn, of course you have learned helplessness. I understand that this is a disorder of thought, but also, wouldn't it be counter to human survival NOT to learn something after being shown over and over that no matter what happens, you cannot fix your illnesses or assuage whatever problems have arisen outside of your control?
    After being beaten over and over again, isn't it stupid to jump up smiling and say "YAY--I'll take some more"?? Or would it make you so idiotic that it's actually wise and noble? I try not to think too much about this shit. I distract myself from my own health problems as much as possible, and focus my energy elsewhere, but every once in a while, I'd like a goddamned break.

  10. I have had surgery for a mesh screen implant and have had over 6 surgery's to remove it and now have to have it redone do to I link all the time then on 7/18/2015 I got Lyme disease from a tick bit ,and now I have a ileostomy since 8/14/2015. I have leaned that there are some people that have life a lot worst then me and the only one that can make me happy is me ,so I do get up with a smile on my face and be thankful for what I have .
    sorry this just needed to be said .
    Hope this helps

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