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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
Reply by isabella, on Fri Mar 19, 2010 12:46 pm
hi all
your all prob gonna hate me cos i can eat just about everything apart from bananas and peanuts with no probs,my consultant is constaantly amazed and wants me to write up a cookery book as i love cooking and trying new recipes,sorry but i love food now and  nothing stops me from eating or trying foods,i empathise with those that cant as i know not having peanuts kills me i had some a few weeks ago and the aftereffects are chronic so i learnt my lesson the hard way,but thats life eh, anyway onwards and upwards and we re  all still here to enjoy what we can eat and tolerate
isabella
Past Member
Reply by Past Member, on Fri Mar 19, 2010 2:10 pm
                                 
isabella wrote:
hi all
your all prob gonna hate me cos i can eat just about everything apart from bananas and peanuts with no probs,my consultant is constaantly amazed and wants me to write up a cookery book as i love cooking and trying new recipes,sorry but i love food now and  nothing stops me from eating or trying foods,i empathise with those that cant as i know not having peanuts kills me i had some a few weeks ago and the aftereffects are chronic so i learnt my lesson the hard way,but thats life eh, anyway onwards and upwards and we re  all still here to enjoy what we can eat and tolerate
isabella



I'm the same but can eat bananas and peanuts and all!  

I am living proof that an ileostomate can eat absolutely EVERYTHING that isn't nailed down(and I do!).  

Basically don't go along with the eat to live rule and prefer to LIVE TO EAT!

...and of course all this talk of food is making me hungry...mmm what's in the fridge!

Cheers and down the hatch!  
Reply by janice, on Sat Mar 20, 2010 3:56 am
[quote="jeaniefrances"]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[/quot
I also had stage 2 cervical cancer, radical hysterectomy, 6 weeks of chemo & radiation and a fistula that they think is there but haven't found it yet! I still am not back to work!  Kudos to you for going back to work!!  I miss it!!
Reply by junopete, on Sat Mar 20, 2010 4:33 pm
Jeaniefrances and others here.

I have to tell you, I used to think I was a tough fella.  Kingcrabed fished for many years in Alaska and Russia, did a lot of things.
I pail compared to you guys.  

If I go to a dictionary and look up "tough" or "tenacity", it's going to give your names.

You have no idea the respect I have for you guys just toughing it out day to day.

Reading your bio's and story's simply rocks my world right to the core.

God, I wish I could just reach out, touch you and makes things better for you, all of you.

Rick.....
Reply by lottagelady, on Sat Mar 20, 2010 4:49 pm
Hi Rick, I agree.... I always felt my lot was tough until I read some of the stories like Jeanies - mine is just a walk in the park - I applaud your courage girls ...... xxxx
Reply by 1happyme, on Sat Mar 20, 2010 8:34 pm
AMEN TO THAT!!! AT THIS POINT OF TIME I WOULD REALLY APPRECIATE MY BODY BEING THE WAY IT WAS 20 YEARS AGO...
Past Member
Reply by Past Member, on Sat Mar 20, 2010 11:58 pm
                                 
J.Maree wrote:
                                 
isabella wrote:
hi all
your all prob gonna hate me cos i can eat just about everything apart from bananas and peanuts with no probs,my consultant is constaantly amazed and wants me to write up a cookery book as i love cooking and trying new recipes,sorry but i love food now and  nothing stops me from eating or trying foods,i empathise with those that cant as i know not having peanuts kills me i had some a few weeks ago and the aftereffects are chronic so i learnt my lesson the hard way,but thats life eh, anyway onwards and upwards and we re  all still here to enjoy what we can eat and tolerate
isabella



I'm the same but can eat bananas and peanuts and all!  

I am living proof that an ileostomate can eat absolutely EVERYTHING that isn't nailed down(and I do!).  

Basically don't go along with the eat to live rule and prefer to LIVE TO EAT!

...and of course all this talk of food is making me hungry...mmm what's in the fridge!

Cheers and down the hatch!  


I'm jealous!
I wish I could eat anything.
Also wished threads stayed on track with the subject...sigh
Reply by car1951, on Sun Mar 21, 2010 7:40 pm
I've read all the comments here and I've learned more from all of you than I've ever learned from the medical community.  I have an colostomy and an ileuostomy--the extent of my training was being handed a box of wafers, a few bags and a pat on the head.LOL  Its a relief to know all of you are out there and have survived the same problems.  Oh well--back to the orginal question--I love pickles and raw vegetables.  Its hard to believe that all of those healthy habits are pretty worthless now.  
Past Member
Reply by Past Member, on Tue Mar 23, 2010 9:57 am
                                 
car1951 wrote:
Its hard to believe that all of those healthy habits are pretty worthless now.  


That's my concern. Considering I eat mostly starches and easy to digest proteins, I worry that I will end up diabetic.
My doc isn't worried about it though.
I have been known to puree it like baby food. It tastes really good but it has to be pureed really well or small pieces can still get caught in my tract.
Reply by Bear, on Thu Jul 29, 2010 10:37 pm
Janice,
Jeaniefrances and others
You are an inspiration to us all.  God Bless You and may he wrap his loving arms around you and your family.  Let us know how you do?  You sure make me positive when i get negative.  Like some of the others I thought I was tough until I read about you.  I am a retired bear biologist and also did some work with alligators.   Nothing compared to what you are doing.  Thanks for sharing with us all.
Reply by swiffer, on Thu Jul 29, 2010 10:50 pm
I MISS CHEWING PEANUTS ALMONDS CASHEWS ETC.
Thank goodness they make peanut butter ,almond butter,cashew butter ,sunflower seed butter,ect. You have to go to special sites to get most of them and they do cost more but they also make good ingredients for cookies just like peanut butter cookies . I am hungry now.
Reply by Bear, on Thu Jul 29, 2010 10:51 pm
                                 
junopete wrote:
Jeaniefrances and others here.

I have to tell you, I used to think I was a tough fella.  Kingcrabed fished for many years in Alaska and Russia, did a lot of things.
I pail compared to you guys.  

If I go to a dictionary and look up "tough" or "tenacity", it's going to give your names.

You have no idea the respect I have for you guys just toughing it out day to day.

Reading your bio's and story's simply rocks my world right to the core.

God, I wish I could just reach out, touch you and makes things better for you, all of you.

Rick.....




Junopete- sometimes we will have to swap surgery and close call with animal stories.  I used to work with bear and worked some with alligators.  Would love to hear some of your stories and share mine,   Never been to Russia but been to Alaska twice, once on a cruize and the other on a backcountry trip near Norton Bay on the Tundra.  Fishing was unbelievable.  I agree with you that we are not tough at all compared to many on this site especially the ones you refer to.
Reply by Bear, on Thu Jul 29, 2010 10:57 pm
                                 
isabella wrote:
hi all
your all prob gonna hate me cos i can eat just about everything apart from bananas and peanuts with no probs,my consultant is constaantly amazed and wants me to write up a cookery book as i love cooking and trying new recipes,sorry but i love food now and  nothing stops me from eating or trying foods,i empathise with those that cant as i know not having peanuts kills me i had some a few weeks ago and the aftereffects are chronic so i learnt my lesson the hard way,but thats life eh, anyway onwards and upwards and we re  all still here to enjoy what we can eat and tolerate
isabella




I can eat most things now if they are skinless except corn.  I just have to eat in moderation.  Sometimes I just can not stop like with KFC slaw and I pay dearly.  You are lucky and you still look good.   I lost 68 pounds but have gained 35 back.  I want to stop gaining now but it is hard.
Past Member
Reply by Past Member, on Thu Jul 29, 2010 11:53 pm
Bear, I crave KFC cole slaw and taters and gravy and I waited for a few months and my Doctor said I can eat what I want.  Man talk about eating, didnt know I could eat so much.  I dont do fried chicken but I will fry it in oven with no greese and I cook frozen French Fries in a Convection oven and that is the only way my son can eat them.  But darn do I love cole slaw, I must be hurngry again.  You need to get a grip on your weight before you gain anymore and maybe pick up bikeriding or walking a couple times a week and you can cut back on calories, I am doing it.  Hey I can eat a whole house full of nuts and corn and anything I want, but man nuts have a lot of fat and corn is startchy, at least before this happened I cared if I got Diabetes and I dont have it, but I am on a strict diet as no way is this bag going to kick my ass, in the first place I am bigger than it and it only has one advatage over me, the SOB could shit on my Shoe.  Plus I dont think I will ever eat strawberries again as I see them in a whole different way.  Have a good evening Bear, Jenny
Reply by skidder, on Thu Apr 26, 2012 8:44 am
Lobster and all "fizzy drink" lovers
I enjoy a soda usually once a day and what I do is open the drink and let it set on the counter for several hours...the fiz is 75-80% gone but oh SO good!!!
I also was told about the eating thing. I ate some of those things but if I didn't chew them good, I was in the emergency room with blockages. Because of blockage experience, I would just tell them 'give me a 75mg shot of Demoral and a shot of phenagren and let me totally relax, sleep. When I'd wake up, the bag was full and home my hubby would take me....oh, I would stick with chicken noodle soup the next day mostly for bowel rest. Slowly introduce roughage into your diet but ALWAYS remember with any food, please chew it til it's almost a liquid in your mouth before you swallow. I can eat anything now but I chew like a cow chewing it's cudd!!!!! My motto: Find out what you can do and do the hell out of it!!!
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