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What Foods Do You Miss?

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

As I've mentioned before, I have an illeostomy and have internal adhesions that are wrapping around things and my diet is even more limted than it was the first year or two after the illeostomy. I won't have it reversed because it's better than the IBS I always had and it wouldn't help with the adhesions anyway. But I was sitting watching TV earlier and was thinking about the foods that I don't dare eat anymore and wondering what other people miss, too, if they have to be a low residue diet.

I love popcorn and I miss it most of all. I miss salads, fresh raw veggies and dip, corn on the cob, celery with Cheez Whiz, Christmas oranges, being able to eat without picking out things or having to meticulously chew everything. I've had partial blockages from salad, celery (the strings) and corn on the cob. And some other things that I don't know what caused it. I can eat apples but must cut them into pieces and remove the skin and I can eat oranges but I have to cut them in half and scoop the meat out with a spoon. No parts of the orange membrane on each section is okay. My surgeon warned me about him having to remove pieces of canned mushrooms from a patient. I don't like mushrooms so that's okay.

The other day I had a piece of pizza with pineapple on it, a Hawaiian, the only pizza I'll eat. I got about halfway through and realized I probably shouldn't be eating the pineapple and worrying that I hadn't chewed it enough. Luckily, I dodged that bullet. My food is always cold when I'm about 3/4 through. I take small bites and have to chew everything so carefully it takes me too long to eat.  

Anybody else missing their favourite things?

Jan

Annabelle41415's picture
Annabelle41415
Posts: 6525
Joined: Feb 2009

After my inital surgery they gave me an illeostomy and yes, popcorn was one of the things most missed.  Corn on the cob but fortunately salads were still my go to.  I'd have a salad every night as that is my main and favorite thing.  It really didn't bother my illeostomy so I'm fortunate that way.  Now after my reversal it's steak - oh how I'd loved to have my steak and lobster.  Now I'm only able to have a couple bites and then it can throw me into days of constipation if not a week.  Rice is another thing that doesn't agree with me.  It blocks me up so bad.  With my reversal, my output is so loose that I'm going up to 15 times a day, and I'd rather do that than be backed up so when I've indulged, I'll pay the price.  With no rectum and 12 feet of colon gone, more colon resected and repaired my bathroom issues are my biggest concern.  So sad that this stupid disease still gives us a punch even though we've done all we can and it still is a disease that keeps giving even when we don't want it to.  Oh yeah, mushrooms - just love mushrooms and asparagus - oh could just go on and on.

Kim

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

   I have had extremely high colesterol for years so I have to avoid all take aways and any other fatty foods. I have type two diabetes so I really need to limit all sugars in my diet and always eat hi GI foods with very low GI foods.I take galvumet twice a day. I have trouble with high levels of uric acid, I take allopurinol every day and have to limit foods high in purines. I have seronegative poly arthritis (either psoriatic or rheumatoid) so acid foods i can only eat in small servings. I have just been dxed with an atrial flutter, my heart specialist expects that I also have atrial fib. That means I am on warfarin. Warfarin interferes with the vit K receptors in the liver. The vit K receptors metabolise the enzyme that promotes clotting. If I eat things lthat contain too much vit K it neutralises the warfarin. Green leafy veges ,avacados ect are good sources of vt K, A whole heap of other stuff I can no longer eat. I take cyclosporine twice a day for an auto immune disease of the kidneys add warfarin to that and alcohaol of any sort is no longer allowed. All of that has happened over a lot of years and I now find myself in a situation where I dont know what I can eat. I dont have the problem of an illeostamy but due to neuropthy I am finding I am starting to lose motility in my lower colon. My elimination has gone from being motility powered to gass powered. I have to avoid too much fibre and things like cheese. I have to take a stool softener every night just to make things easier. It amazes me how much crc patients have to evolve to survive. If we ever sat down to a banquet togeather it would probably consist of an apple and a glass of water.. Ron.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Cold water, spritzer, ice cream, cold fruits. I have a reprieve from last Friday to this Tuesday as the cold sensitivy is gone (I can go out in freezing weather without problems).

I have an illeostomy but I have no problems with popcorn, oranges, apples, grapefruit, strawberries, smoothies for a few days every couple of weeks. But then it's back to boiled water mixed with everything, no cold foods at all. I do take some veggies and they haven't caused me problems but there's no point eating them as they just come out into the bag (other than taste).

aoccc2015
Posts: 37
Joined: Sep 2017

I will everynow and then get like a dried fruit piece or something stuck in the hole(pineapple was also one haha)..but it is always showing so i can just pop it out. It lets me know if there is a slight block lol... I guess i am lucky for now. At first I avoided anything that looked like it could get stuck but then after I started getting brave i was slamming down nuts and other things. Just lots of chewing:)

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

For the first couple of years I ate popcorn and nuts and things I wouldn't dare eat now. For me, every time I get a partial blockage I end up at emerg getting IV fluid and have been admitted to the hospital. I averaged about every 4 to 6 months for it. Sometimes it was only bad for a few days and sometimes it was bad for a couple of weeks. I'm overly vigilant about what I eat now because I don't want to risk having it again. At this point it's been 6 months since my last bout and I'm hoping to drag it out longer. 

That was a bad one where the doctor sent me to the hospital in the city and had a surgeon check me out after a ct scan and he said he didn't want to touch me because people like me end up full of cancer when he opens them up. He figured I had cancer in my abdomen all over the place. I didn't want him to do surgery, but thanks! I didn't realize that's why I'd been sent to the hospital. I spent a night there with a woman in the next bed who whined about her pain from having a tummy tuck two weeks earlier and had all the room lights on all night while she laid there with sunglasses on. It was just a miserable experience and one I do NOT want to repeat. That one was from either eating corn or a salad, I can't remember which.

My husband has really had to change his diet since his heart attack in September. I feel badly for him because at least for me the things that have given me a blockage are things I no longer crave after being so sick from them. He loves pastries and donuts and potato chips and things like that which he's had to stop eating. I've never liked those things so it wouldn't bother me if I had to not eat them. At this point we rarely eat the same meals because our requirements are so different. 

Mikenh, I was shocked at how many foods like veggies come out in the bag the same as they went in my mouth. It makes you wonder how we get any nutrition naturally, doesn't it? I can eat cooked veggies that don't have skins and are well cooked. Yesterday I made broccoli soup. I steam the broccoli and mash it with the masher so I don't have to worry about it blocking anything. Definitely a new way of eating but worth it if I don't get a blockage.

Jan

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

It must be the large intesting that uses fermentation to break down the veggies.

BTW, I have a large stoma and that may be why I don't have blockage issues. I've seen the sizes of the flanges and they vary quite widely.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

My problem is adhesions that are choking off things in my abdomen. I already have a kidney that's partly choked off and they think I have it again somewhere in there that's affecting things getting through. My stoma is quite small but I don't think things go that far before they block. They don't want to fix the adhesions because they say they'll just get worse but I think at some point they're going to have to go in and deal with some of it.

I scar badly on my skin, too. The place where I had the drain for the abcesses go in, right beside my tailbone, has grown to about the size of a large grape. It's actually uncomfortable sitting down on it depending on what I'm sitting on. It feels like it's attached itself to my tailbone and it feels like it's pulling when I sit down.

Sometimes I'd kill for a salad. I adore spinach salads. But I'm too scared to try.

Jan

 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

My wife has made pureed salads for me. They go straight into the bag.

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