Missing the Foods I Can't Have Anymore

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 cob 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 overcook them to make sure they are real soft)
Meds in capsule form

I miss all of those things today!

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 can't 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 isn't anything compared to missing body parts! Waaaaaaaa!!!!

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

Sorry, it all sounded shocking, it is pretty bad. Most of the people on this site have Crohn's 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 eviceration (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 sets 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 them too. We are all in the same boat. Thanks for asking about me..Jeanie

I just want to say, it's 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 comprehend. God bless!

My Ostomy Journey: April | Hollister

I miss milk. Sometimes I drink it though.
The reason I don't take 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-acting time-release kinds.
So all meds are either taken via liquid, under my tongue, chalky pills, or intramuscular.
Good question, by the way!

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 lifetime 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

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 can't get wet or the flanges lose their stickiness. I can't have a reversal, I wish I could. So I am stuck for the rest of my life. My only problem is I get blocked a lot 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, couldn't 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 a lot of friends but really don't want to be a downer all the time talking about myself. Don't 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

You hang in there, 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 food, I just keep eating everything regardless, except green vegetables. I was told in the hospital by the stoma nurse, "Green vegetables 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 straight away on autopilot because I had some peas in the freezer and didn't want them to go to waste.
The stoma nurse went off thinking, "That one's a bit stupid."
I'm not.
And when I was back for the second operation, when the stoma nurse came around, I made a point of telling her about the peas. She went off thinking, "That one's stupid and maybe mentally unstable, going on about his bloody peas. It was a year ago, get over it.

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 because diet was not a major factor? WHAT? But that was a long 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 broccoli 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 pass 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.

"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 veggies - I was a big salad eater. Nice hunk of steak. Popcorn. Diet soda.

Food I miss is pineapples, some days 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 on how much Coke I could drink without getting into 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!

Thanks Beatrice for your kind words, sometimes I don't feel amazing, just amazingly bad! Jeanie

Hi all
Well don't quote my spelling but I liked kemchie, lettuce, cucumbers, carrots, cashews, pastaheos, peanuts, oranges, pink grapefruit, chocolate, thin mints (Girl Scout cookies), dam that list. What I miss is bigger than I thought. It's easier to write what I can eat. LOL

Hi all
Your all probably gonna hate me because I can eat just about everything apart from bananas and peanuts with no problems. My consultant is constantly 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 empathize with those that can't as I know not having peanuts kills me. I had some a few weeks ago and the aftereffects are chronic, so I learned my lesson the hard way. But that's 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 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!!

Jeaniefrances and others here.

I have to tell you, I used to think I was a tough fella. Kingcrabbed fished for many years in Alaska and Russia, did a lot of things.
I pale 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 bios and stories simply rocks my world right to the core.

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

Rick.....

Hi Rick, I agree.... I always felt my lot was tough until I read some of the stories like Jeanie's - mine is just a walk in the park - I applaud your courage, girls...... xxxx

Amen to that!!! At this point of time, I would really appreciate my body being the way it was 20 years ago...

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

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 a colostomy and an ileostomy--the extent of my training was being handed a box of wafers, a few bags, and a pat on the head. LOL It's a relief to know all of you are out there and have survived the same problems. Oh well--back to the original question--I love pickles and raw vegetables. It's 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.

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.

I miss chewing peanuts, almonds, cashews, etc.
Thank goodness they make peanut butter, almond butter, cashew butter, sunflower seed butter, etc. 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.

Junopete - Sometimes we will have to swap surgery and close call with animal stories.    I used to work with bears 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 cruise 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.

I can eat most things now if they are skinless except corn.    I just have to eat in moderation.    Sometimes I just cannot 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.

Bear, I crave KFC coleslaw 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, didn't know I could eat so much. I don't do fried chicken, but I will fry it in the oven with no grease, 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 coleslaw. I must be hungry again. You need to get a grip on your weight before you gain any more, and maybe pick up bike riding or walking a couple of 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 starchy. At least before this happened, I cared if I got diabetes, and I don't 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 advantage over me, the SOB could shit on my shoe. Plus, I don't think I will ever eat strawberries again as I see them in a whole different way. Have a good evening, Bear. Jenny.

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 sit on the counter for several hours...the fizz 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 well, I was in the emergency room with blockages. Because of the blockage experience, I would just tell them 'give me a 75mg shot of Demerol and a shot of Phenergan and let me totally relax, sleep. When I'd wake up, the bag was full and 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 until it's almost a liquid in your mouth before you swallow. I can eat anything now but I chew like a cow chewing its cud!!!!! My motto: Find out what you can do and do the hell out of it!!!