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  • #1

    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.
    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

    [
    Tags: None
  • #2
    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))))

    Comment

    • #3
      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

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

      Comment

      • #4
        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!!!
        [SIZE="1"][B]Be well, Alyssa :hi:[/B]

        [

        Comment

        • #5
          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.
          [SIZE="1"][B]Be well, Alyssa :hi:[/B]

          [

          Comment

          • #6
            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.
            Lee Ann
            Current Rx Meds:
            Atarax, Ditropan, Elmiron
            Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
            Hooray for babies!
            Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
            Didn't work for me:
            Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
            IC (Mod-Severe) since 1996

            UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


            My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

            Comment

            • #7
              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.

              Comment

              • #8
                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!

                Comment

                • #9
                  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
                  Stay safe


                  Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                  Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                  Have you checked the ICN Shop?
                  Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                  Patient Help: http://www.ic-network.com/patientlinks.html

                  Sub-types https://www.ic-network.com/five-pote...markably-well/

                  Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                  AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                  I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.                   [3MG]

                  Anyone who says something is foolproof hasn't met a determined fool

                  Comment

                  • #10
                    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
                    Kari

                    I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

                    Comment

                    • #11
                      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
                      [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                      [

                      Comment

                      • #12
                        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

                        Double Spinal Cord Stimulator surgery 8/09
                        Unsuccessful MiniArc sling surgery 12/07
                        Dx'd Hypothyroid
                        Dx'd Chronic Axonal Neuropathy & Myopathy
                        June 2007
                        Dx'd IC May 2006 (after suffering for 25+ yrs!)
                        First Cysto 1979
                        First Hydro 1981 (Many treatments since then!)
                        Collagin"Durasphere" injections for urethra
                        Gall bladder surgery Aug. 2004
                        Gastric Bypass Dec. 2004
                        Dx'd: Barrett's Esphogus July 2004
                        Dx'd: Vaginal Atrophy 2005
                        Bladder surgery 2000
                        Dx'd: IBS 2000
                        Hysterectomy (fibroids) 1999
                        Laminectomy 1989
                        Dx'd: Degerative Disk Disorder 1989

                        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                        Comment

                        • #13
                          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...
                          [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                          [

                          Comment

                          • #14
                            I hope you find something that helps you! Roxie

                            Double Spinal Cord Stimulator surgery 8/09
                            Unsuccessful MiniArc sling surgery 12/07
                            Dx'd Hypothyroid
                            Dx'd Chronic Axonal Neuropathy & Myopathy
                            June 2007
                            Dx'd IC May 2006 (after suffering for 25+ yrs!)
                            First Cysto 1979
                            First Hydro 1981 (Many treatments since then!)
                            Collagin"Durasphere" injections for urethra
                            Gall bladder surgery Aug. 2004
                            Gastric Bypass Dec. 2004
                            Dx'd: Barrett's Esphogus July 2004
                            Dx'd: Vaginal Atrophy 2005
                            Bladder surgery 2000
                            Dx'd: IBS 2000
                            Hysterectomy (fibroids) 1999
                            Laminectomy 1989
                            Dx'd: Degerative Disk Disorder 1989

                            For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                            I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                            Comment

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