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Foods I miss

Past Member
Posted by Past Member, on Tue Mar 16, 2010 3:28 pm
Ileostomate with SBS here.

I know some of you all chimed in missing sex but TODAY I miss so many damn foods I just want to honor them here and say hello to them.

These are food items I have given up because they either caused blockages, dehydration, diarrhea, or hyper output.

Cobb, Caesar, and especially Spinach salad with hot bacon dressing
Sweet corn on the cobb dripping with butter and lightly salted
Nuts, Sunflower seeds, protein bars with nuts and such.
Oranges
Potatoes, apples and grapes with skins on (I peel them now)
Crispy stir fried vegetables (Now I have to over cook them to make sure they are real soft)
Meds in capsule form

I miss all of those things today!
Reply by jeaniefrances, on Tue Mar 16, 2010 4:09 pm
I miss milk, almonds, cheese, and ice cream. I can still eat it but it makes my bag look like a beach ball! How come you cant take meds that are capsules? I still do that. The thing is, I never know what will cause a blockage until I eat it, then I suffer. Gotta make a list I guess. I miss my bladder, my rectum, and my original vagina, missing food isnt anything compared to missing body parts! Waaaaaaaa!!!!
Reply by lisam3, on Tue Mar 16, 2010 5:26 pm
Well I read your post and was shocked by what you wrote.  What exactly did they do to you?  Maybe you had an Urostomy.  But what is up with the vagina part?  So sorry to hear all of this and I understand what you mean when you say MISSING BODY PARTS.  Well take care and hope to hear from you again.
As always, Lisa
Reply by jeaniefrances, on Tue Mar 16, 2010 7:56 pm
Sorry it all sounded shocking, it is pretty bad. Most of the people on this site have Crohns disease. I had cervical cancer. Type II, no biggie they said. yeah, right. Last jan, 1 year ago, I had 7 weeks of chemo and radiation, still cancer, then had a radical hysterectomy, still cells-unclear margins..then went to Vanderbilt hospital in Nashville for a total pelvic eveceration (sp) where they took out part of my intestine, my bladder, my rectum, and my vagina. I had a plastic surgeon on hand and he made me a new vagina using the hamstring muscles in the top of my legs. I developed a fistula due to the weakness in my intestine from the radiation. When I get blocked up, everything goes out my new vagina. It is nasty, acid stuff that sits me on fire. It ate the paint off the inside of my toilet seat. Once the blockage moves on out, the drainage stops. I never know what sets it off, what I ate. I miss being normal, more than I miss food. I was off food for 14 weeks only having liquids at night...the fistula healed but once I started eating, it opened again. AND to top it all off, after all that, I still have cancer cells floating around doing flips in my pelvic fluid. that is pretty much my story. I try to stay positive, sometimes I fail. I work full time and if I am not draining, I feel pretty decent. I hate the bags and I really hate the draining but it helps to know there are others out there who have the bags, maybe not like I got them, but they have em too. We are all in the same boat. Thanks for asking about me..Jeanie
Reply by corncob, on Wed Mar 17, 2010 12:16 am
I just want to say ,its one thing to suck it up and make the best of a situation.(which I think I've done a pretty good job for myself all these years) You are an incredible woman.  I love your positive attitude having to deal with so much.  Something tells me that even with all the challenges , you live a much fuller life than most people could ever commprehend. God Bless!
Past Member
Reply by Past Member, on Wed Mar 17, 2010 12:39 am
I miss Milk. Sometimes I drink it though.
The reason I don't capsules is because I have small bowel syndrome and they pass through me before they can be broken down. Therefore the meds aren't effective. That includes slow active time release kinds.
So all meds are either taken via liquid, under my tongue, chalky pills, or intramuscular.
Good question BTW!
Reply by lisam3, on Wed Mar 17, 2010 12:55 am
Well that is quite a story or history about you...my heart goes out to you and yours....just get well.  You have a lot to deal with.  Good Lord, I did not know they could make a vagina.  But I read on here that someone was thinking about a bowel transplant.  I would love to have that.....it would be an answer to my prayer.  I doubt I will ever see that in my life time though.  Do your pouches touch each other or is there enough room.  Maybe you are the one that doesn't use a bag for your urostomy.  I read it here somewhere.

Just remember we are all thinking of you and wishing you the best in all areas......
some days I would just love to disappear somewhere but then I smarten up and get back to my normal which is not really normal to most people.  Keep us posted and tell me if you are having a reversal....It might not be you but I read it in the forum.

Take care Jeannie
As always, Lisa
Reply by jeaniefrances, on Wed Mar 17, 2010 8:34 am
Thanks for the kind words. My pouches overlap each other just beside my poor belly button, it got lost somewhere. I want to wear a swimsuit this summer if I go to Fla. but will need one with a skirt, and then cant get wet or the flanges lose their stickiness. I cant have a reversal, I wish I could. SO I am stuck for the rest of my life. My only problem is I get blocked alot and then have drainage. I take stool softeners and other things to help things move. Other than that, I have no complaints. Last summer my then boyfriend dumped me via text message, couldnt hang in during the big surgery. No real loss. I do get lonesome and wish I had someone to talk to sometimes. That is the hardest, doing it by yourself. I have alot of friends but really dont want to be a downer all the time talking about myself. Dont want to feel like I am a charity case either...just want to be normal. People look at you differently when they find you have cancer, they just do, no biggie. I used to. But spring is coming and I love it, I turn 60 on my birthday in a few weeks.. Each birthday is special. Have a blessed day..Jeanie
Reply by Lobster, on Wed Mar 17, 2010 9:02 am
                                 
jeaniefrances wrote:
Sorry it all sounded shocking, it is pretty bad. Most of the people on this site have Crohns disease. I had cervical cancer. Type II, no biggie they said. yeah, right. Last jan, 1 year ago, I had 7 weeks of chemo and radiation, still cancer, then had a radical hysterectomy, still cells-unclear margins..then went to Vanderbilt hospital in Nashville for a total pelvic eveceration (sp) where they took out part of my intestine, my bladder, my rectum, and my vagina. I had a plastic surgeon on hand and he made me a new vagina using the hamstring muscles in the top of my legs. I developed a fistula due to the weakness in my intestine from the radiation. When I get blocked up, everything goes out my new vagina. It is nasty, acid stuff that sits me on fire. It ate the paint off the inside of my toilet seat. Once the blockage moves on out, the drainage stops. I never know what sets it off, what I ate. I miss being normal, more than I miss food. I was off food for 14 weeks only having liquids at night...the fistula healed but once I started eating, it opened again. AND to top it all off, after all that, I still have cancer cells floating around doing flips in my pelvic fluid. that is pretty much my story. I try to stay positive, sometimes I fail. I work full time and if I am not draining, I feel pretty decent. I hate the bags and I really hate the draining but it helps to know there are others out there who have the bags, maybe not like I got them, but they have em too. We are all in the same boat. Thanks for asking about me..Jeanie


You hang in the Honey, everyone is here for you. If any of you hear me complaining about my lot in life just tell me to shut my whingeing.
As for foods I just keep eating everything regardless except green vegetables. I was told in hospital by the stoma nurse "green vegatables can give you wind" to which "I said what about peas?"
"well they're green aren't they"
I stayed sheepishly silent but I'd asked staight away on auto pilot because I had some peas in the freezer and didn't want them to go to waste.
Stoma nurse went off thinking 'that ones a bit stupid'
I'm not.
And when I was back for second op when stoma nurse came round I made a point of telling her about the peas. She went off thinking 'that ones a stupid and maybe mentally unstable going on about his bloody peas. it was a year ago, get over it'
Past Member
Reply by Past Member, on Wed Mar 17, 2010 9:18 am
Well, it's funny my gastro said I'll be able to eat anything I want. In fact he said, from the time he diagnosed me he always said I can eat what I want cuz diet was not a a major factor? WHAT? But that was along time ago and we were learning about Crohn's Disease together.

Oh I'm so glad I hate peas. So I didn't miss them.  

BTW, I do eat greens. I puree them with olive oil and garlic.  Then wash it down with coffee which works like liquid plumber.  So if I MUST have my spinach or brocolli fix that's how I eat them.

I realized other foods I miss:

Potato skins
Onions - Sometimes I cheat on the onions but I usually have to help it past through a sharp kink in my tract.
Coleslaw and other cabbages.  I didn't like them much before but I do like to try things and I dare not.
Reply by beatrice, on Wed Mar 17, 2010 8:57 pm
"If any of you hear me complaining about my lot in life just tell me to shut my whingeing. "

Agree. JeanieFrances - you're amazing.

Foods I miss: Raw vegies - was a big salad eater. Nice hunk of steak. Popcorn. Diet Soda.
Reply by panther, on Thu Mar 18, 2010 12:48 am
Food I miss is pineapples, somedays I think it would be worth having a blockage just to taste it one more time.
Reply by Lobster, on Thu Mar 18, 2010 6:16 am
                                 
panther wrote:
Food I miss is pineapples, somedays I think it would be worth having a blockage just to taste it one more time.


I was told to avoid fizzy drinks and I immediately thought of Coca Cola and how I could no longer drink it. I then started to become fixated with how much Coke I could drink with out getting in to trouble. It even reached the point of thinking I could open a can and just have a shot glass full and give the rest of the can to my sister in law.

Thing is - I pretty much never drink coke anyway! why I fixated on that I have no idea!
Reply by jeaniefrances, on Thu Mar 18, 2010 8:12 am
Thanks Beatrice for your kind words, sometimes I dont feel amazing, just amazingly bad! Jeanie
Reply by weewee, on Thu Mar 18, 2010 2:17 pm
hi all
well dont quote my spelling but i liked kemchie, lettuce,cucumbers,carrots,cashews,pastaheos,peanuts,oranges,pink grapefruit,chocolate,thinmints(girl scout cookies),dam that list what i miss is bigger then i though its easier to write what i can eat lol
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