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  • Roxie2007
    replied
    I hope you find something that helps you! Roxie

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  • born2swim
    replied
    Roxie, yeah we talked about it before. I thought about it... but I fear taking it because GI doctor told me to avoid it. He said aloe is linked to a type of colitis... so I figured that would be the last oral med/supp. I try. That colitis he described freaked me out! I have a sensitive GI tract and don't need any distress to it! I appreciate the offer though... I have put a lot of though into it though...

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  • Roxie2007
    replied
    Born 2 Swim......Have you tried Freeze Dried Aloe Vera? It coats the bladder and helps rebuild the lining of the bladder. With you having such a terrible time eating maybe you should give it a try. I've been taking it for 3 yrs now and I hardly ever have IC pain. Roxie

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  • born2swim
    replied
    I knew you guys could relate to me. What makes this so hard is that my favorite foods are off limits. The way I eat vegetables are a major no no (chinese/japanese type foods). The way I eat eggs are off limits (ketchup and black pepper). I thought about hard boiled eggs on a salad... but then I can't do dressing at all...

    Ug... I really want to give up eating sometimes. I can do pears, but I have to make myself eat them as they are not that good to me. I'm not a big fruit eater (peaches or bananas would be #1 for me). I'm afraid to try somethings like cheese, even though I love it. I'm just afraid to eat now... especially after the very rough weekend I had

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  • kari1980
    replied
    I'm right there with you Alyssa! I'm going on about 3 months of non-stop pain no matter what I put in my mouth!! I'm so tired of it and wanted to vent along with you. It's so frustrating and the pain is just getting ridiculous now. Have you tried plain pasta with butter or potato's? They seem to be ok for me, I am SO diet sensitive. I just ate a hamburger my husband grilled on the barbecue and I didn't know he added Worcestire (sp?) sauce to it (YES, he always forgets what I can or can't eat) and I am dying right now. I"m sorry your having such a tough time and I hope it gets better for you soon to...

    Kari

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  • ICNDonna
    replied
    If you go to the diet section in the Patient Handbook, you will find a list of foods that are usually okay. There are lots of foods on that list.

    Donna

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  • girl
    replied
    I know, I wish we could just stop eating all together sometimes!!
    My other fail-safe besides oatmeal is organic shredded wheat cereal with rice dream rice milk; and baked potatoes.
    If you are not a vegan, you can put cheese on the baked potatoes and get at least some protein; caveat - I can eat cheddar, but a lot cant, so maybe mozzarella or something?
    Eggs, as someone said, are also good; just watch how you prepare them. I thought I was flaring to them until I boiled some. I was flaring to the spray I used on the pan!
    Good luck and may you get better every day!

    Leave a comment:


  • Eccles
    replied
    Can you manage oatmeal crackers with butter and cheese? How about eggs & cheese with a green salad (no dressing)?

    Do pears make you flare - lots of us seem to be able to tolerate them with a Prelief tablet.

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  • LeeAnn
    replied
    eggs

    I hope your night got better Alyssa. What about eggs? I know it's nothing thrilling to eat, but it might be a change? I don't know if you're a strict vegan or vegetarian or whatever though so maybe not. I know how you feel though. It is so frustrating. I had four good days this week and now I'm back down in the dumps. I didn't even do anything wrong. I don't deserve it!! I don't know why my pain is back up. I can't figure it out. What did I do??? I know what you mean about food. I know for sure that food is what is causing the pain. When I go completely hungry my pain level goes down. As soon as I eat something, NO MATTER WHAT IT IS, the pain goes up. The only exception was my miracle four days I had at the beginning of this week. Other than that, the best my bladder ever felt was after a bad car wreck--- I jacked up my stomach and wasn't able to eat food at all for about two weeks----and my bladder felt FANTASTIC.

    My bladder only feels painafter some kind of food is introduced into my system. Whoever it was earlier that said you'd take a feeding tube---I agree. As long as my bladder liked whatever the body was being fed. Don't get me wrong, I'd miss food but I certainly wouldn't miss the pain. I'd make the trade in a heart beat. It would be a deal with the devil I'm sure, but......hey at least I'd be skinny and pain free.

    I feel like I would do anything to make the pain stop...........but then again I have a full bottle of vicodin and I can't remember the last time I actually used it.

    I'm scared of getting addicted to a narcotic so I almost never take it.

    Should I just give myself permission to use it more? Honestly it doesn't seem to help all that much anyway with the pain. It can help me fall asleep if I'm desperate but doesn't really touch the pain itself.

    Sorry, I was trying to be supportive Alyssa but then it turned into my own vent.

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  • born2swim
    replied
    Originally posted by Roxie2007 View Post
    HI! I can eat meats.......chicken, beef, pork (probably fish but I"m not a fish eater) with out any pain. So you might try that. Just broil then with no spices on them. That will give you protein if you can tolerate them. You can try fresh veggies, boiled in just water. Your best bet is to try things that aren't processed.....no MSG. Little by Little you'll learn what you can tolerate. I do better if I don't eat the same thing 2 days in a row.....that was, I guess, if it's something that 'might' bother me I won't be doubleing up on it. You have to try things like that with IC! Good luck to you! Roxie
    The tough thing is that I am pretty much a vegetarian. I eat meat maybe once a month. I did go and get some Boar's Head deli turkey and that tasted great (and is completely natural). That was a big venture to me. I do need to force myself to eat more meat I guess. My B12 got too low because I stopped my vitamin due to the IC.

    Ug... this is so frustrating. I am just having a bad night and needed some support.

    Leave a comment:


  • born2swim
    replied
    Originally posted by girl View Post
    Alyssa,

    So sorry to hear you are having such troubles! I have been there- i spent almost two YEARS eating oatmeal three meals a day. It is still a huge staple in my diet.
    I suppose I was lucky; I was on high dose steroids - not eating is not an option as they give you a raging appetite. However, I certainly went through not wanting to try things as it seemed liike everything hurt.
    What got me through it was really, really, researching things and trying things that I was fairly sure were not going to hurt me. Then the success from those gave me courage to try other new things. I am just now getting off of the oatmeal for every meal (I often still eat it twice a day, as I am incredibly diet sensitive).
    I still have times when I wish I could be tube fed, or take a pill, or something.....it is very, very frustrating. But if you can find just one thing you can eat, build on that. (I have little celebrations when I find a new food, lol).
    Here's hoping you feel better soon. (((Hugs))))
    girl,

    I sure wish this was easier! I am not feeling well at all and I guess I am just frustrated that when I have such a bad day that even water bothers me

    Good days... I try to have something other than oatmeal... such as couscous or almonds... boy... I didn't realize how limited my diet was until I tried to list my "venture foods". I have had a milk shake here and there...

    I'm just scared to try anything! I started my first IC symptom in November and I haven't had a normal moment since (not even a normal second since). I have found some diet things that send me through the roof... so I avoid those like the plague (coffee, tea, Tylenol, large amounts of chocolate).

    I wish this IC didn't involve diet at all!!!

    Leave a comment:


  • Roxie2007
    replied
    HI! I can eat meats.......chicken, beef, pork (probably fish but I"m not a fish eater) with out any pain. So you might try that. Just broil then with no spices on them. That will give you protein if you can tolerate them. You can try fresh veggies, boiled in just water. Your best bet is to try things that aren't processed.....no MSG. Little by Little you'll learn what you can tolerate. I do better if I don't eat the same thing 2 days in a row.....that was, I guess, if it's something that 'might' bother me I won't be doubleing up on it. You have to try things like that with IC! Good luck to you! Roxie

    Leave a comment:


  • girl
    replied
    Alyssa,

    So sorry to hear you are having such troubles! I have been there- i spent almost two YEARS eating oatmeal three meals a day. It is still a huge staple in my diet.
    I suppose I was lucky; I was on high dose steroids - not eating is not an option as they give you a raging appetite. However, I certainly went through not wanting to try things as it seemed liike everything hurt.
    What got me through it was really, really, researching things and trying things that I was fairly sure were not going to hurt me. Then the success from those gave me courage to try other new things. I am just now getting off of the oatmeal for every meal (I often still eat it twice a day, as I am incredibly diet sensitive).
    I still have times when I wish I could be tube fed, or take a pill, or something.....it is very, very frustrating. But if you can find just one thing you can eat, build on that. (I have little celebrations when I find a new food, lol).
    Here's hoping you feel better soon. (((Hugs))))

    Leave a comment:


  • born2swim
    started a topic I just want to stop eating...

    I just want to stop eating...

    I just want to stop eating sometimes. Yesterday I thought I'd try a bit of ranch dressing (without preservatives) but I guess it was the vinegar and now I'm in H*ll. I hate this. I feel like I am going to live off of oatmeal for the rest of my life. I can tell I'm getting vitamin deficiencies. I take a Flintstone vitamin here and there (not every day and not on a day where I try something new) to boost my nutrients... but the fact is, I dont' feel well because I'm not eating well. I feel sick all the time. I can't eat anything enjoyable. Vanilla milkshakes are even gross now.

    How do you get over the "I just wont' eat phase"?

    I did for a bit at first, then I found out oatmeal was fine, so I lived on that 3 times a day... I added a protein shake that I found doable... but that is pretty much it. I never eat out due to fear of eating.

    I'm really suffering with this. I don't want to try anything new ever again! I have been dealing with an increase in frequency due to Topamax (being a diuretic), but now with the ranch experiment last night, I'm miserible today.
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