I've been reduced to tears...

[Lise]

I can't take it anymore guys, I'm losing it. I just went grocery shopping with my husband and as soon as I got into the truck I broke down into tears. I don't know what to eat anymore. A few weeks ago I started the diet and I did good for about a week and the pain was practically gone (maybe it was just the good week out of the month for me) then I had pizza and it's been downhill from there. Of course, I've never had will power when it comes to food. I am addicted to food, I love food. Now I can't eat or drink anything with taste. I am soooo depressed, all I feel like doing is crying. I've since tried Elmiron-couldn't stand the stomach pain, I've tried DMSO, didn't do anything for me. I tried elavil this past month and I was soooo cranky, irritable, and tired)actually zoning out of it a lot) so I quit that. I'm losing my mind trying the diet thing. And you know I've always tried watching my weight so I always ate diet things with artificial sweeteners, now I can't even do that! I feel soooooo depressed. I want to hide in my room in the dark and just cry for hours, or days.... Friday I went to the xmas party and I had a alcohol drink, then I ate the hot spicy sauce with the steak, and then I had the raspberry/choc desert, and lemon on my shrimp. I even had some root beer last night. It hurts so bad right now. Actually it's been hurting so much since I had that pizza 2 weeks ago that I have no idea anymore what I can or can't eat. Of course, for the past ten years now before I found out why, it's hurt for 3 weeks out of the four so who knows why I'm even hurting.

[desolationangel]

:grouphug:

i do know exactly how you feel. i kind of have a weird thing with food, where i don't really feel hungry and therefore only eat for taste.

well, guess what my favorite foods were (ARE)? spicy chinese food, indian food so hot it makes you sweat, vinegar on everything, stinky cheese, spicy french mustard, tofu, FRUIT, tomato products, mexican food

and basically, anything else in the "you can't eat that" column.

i'm not like most people. i don't miss chocolate. i can live without chocolate, and carob is great. i don't even miss soda that much (though i do miss chai tea.)

basically, all my life i've existed on intensely flavored foods. so everything i'm allowed to eat now, tastes like paste to me. i use so much of the seasonings i can have... like bloody 8 cloves of garlic in my pasta.

without flavor, since i don't really feel hunger, i have little motivation to eat. and i'm a college student who really can't cook that often, but forget going out!!! i can eat maybe one thing at one restaurant. so i subsist on rice cakes and wheat thins and pringles.

and i do break down, every time i go grocery shopping, every time i see someone eating one of the foods that are apparently off limits to me forever.

[VickiB]

Yep, it's just not fair that IC has to take away our favorite foods from us! I love Chinese sweet & sour, but,..OUCH!

I wonder, have you tried Prelief? While I do avoid certain foods most of the time, some days I just plain have to have something. Like last night. After a long day of Cristmas shopping we wanted to go to a Mexican restaurant where their salsa is absolutely wonderful! First we stopped at the pharmacy on the way and picked up some extra Prelief tablets for me. I had my fair share of salsa as well as other foods I couldn't normally tolerate, and thanks to the Prelief I'm feeling fine today.

Vicki

[desolationangel]

I use prelief and it does help with some things, like with it i can tolerate onion pretty well (which opens up a lot of soup options) and occasionally it helps with preservatives. for me food's not *that* huge of a problem anyway, and avoiding it only helps the urethral discomfort, doesn't do anything for the bladder pain, i just try to stick to the diet for fear that things will get much worse if i don't!!!

like today. there's a baggie of chocolate gelt that my parents sent me... and damned if i'm not going to have some of it!!

[Babs RN]

I know how hard the lifestyle changes are not to include the pain! I am reformed Dr. Pepper, Cherry Coke, Orange(Gen Tso's)chicken, pizza lover. I am also in the middle of a huge flare so I know. I can take the Elmiron, but I also cannot take the Elavil. Ask half the people on the site, I have be reduced to tears all week because the doc I have now is unwilling to treat my pain as a team effort, he gave me a take it or leave it attitude. So I know the feeling. Please PM, post or email me if you need to talk. I am finally regaining my bearings and want to pass that forward.


Hugs,
Barb :grouphug:

[LeahT]

Oh my gosh, I feel the same way! Last Tuesday I was diagnosed and I've eaten only Rice cereal, Rice milk, graham cracers and decaf tea since then. Oh my gosh how bland. I got it so bad for chocolate or peanut butter I can't stand it. Did one of you mention carob? Is that an "okay" food???

[desolationangel]

carob should be okay.

really, you can eat a lot more things than you listed there! (although the decaf tea you probably shouldn't drink because it's still quite acidic...)

make sure you eat vegetables. they are okay for the most part, except onions and those pesky veggies that are actually fruit (like tomatoes and avacado)

also protein. i don't know if you eat meat or not (i don't) but if you do, you can find meat without preservatives at a health food store like trader joe's. i eat eggs, seitan (made from wheat gluten), almonds, and whole grains for protein.

you said you missed peanut butter... have you tried almond butter?

as for bland, most of us can tolerate garlic and herbs like rosemary, basil, and oregano. no spices, unfortunately, but it's better than nothing.

you ought to look at the diet pages in the patient handbook on this site. get a better idea of what you should and shouldn't consume. you have to still eat healthy, even with ic!

[mayray518]

I know exactly what you are going through. Dont give up on the elavil. I had side effects at first and was going to quit taking it but then I kept it up and it was my saving grace. Now I am down to 5 mg and it is still working. i know it is hard to be patient with so many things that dont work and the pain can be horrendous. you will find something to help.

[Annie2]

Lise,

I know exactly how you feel. I've been on the diet for 2 years now and am so sick of it!!! I haven't had a Coke, tea, chocolate (which I adore) or anything with tomato...or anything else in the "no-no" column ... in all that time. I am very food sensitive and can't get away with much in the "may be ok" column, either. I never cheat on the diet. After the first month on the diet, I gave in to pizza and had a week-long horrendous flare. It's the fear of that pain that keeps me on the straight and narrow path. Prelief doesn't help me much. So I keep plugging along. Each day is difficult, no doubt about that. My choice, however, is to give up the food and feel better. And I do feel so much better on the diet. I've been on Elmiron for over 1 1/2 years and have improvement from it but nowhere near back to what used to be normal. In September, I added Elavil to my meds and it is helping me a great deal. I'm still not "normal", but my pain is greatly reduced and I can be far more active now.

I have always loved to cook and bake and that's a good thing because I have to do more of it now than I did pre-IC. It's one heck of a challenge to come up with appetizing and nutritious meals but gradually I have learned some tricks. I'm probably a far better cook now than I was before because it takes so much more creativity to cook for the IC diet. I keep plugging along and learn more every day. With time, it does get easier and you do adapt. That's not to say I don't have hard times anymore. I still can get a bit "misty-eyed" when I walk through the grocery and see all the wonderful foods that are no longer a choice for me. It's still pretty rough watching others eat the foods I dare not touch but long to taste again. It hurts when friends omit asking us to join in activities or plans because working around my diet is too much trouble for them. We used to eat out frequently and were into "fine dining", wines etc. We still eat out at least once a week but only in restaurants where I know the menu and can find things safe for me to consume. Sometimes I do lose it and give in to a good cry about it all. But I've learned to pick myself back up and keep plugging along. I still choose to feel better and be able to be more active. The choices are easier most of the time now but I still have to make that choice each and every day. It's not an easy path we have to follow. Accepting it takes time. Learning the diet and discovering our individual triggers takes more time. It will probably never become easy but I do accept it now. You will, too. Give yourself time and also give yourself LOTS of credit because you are doing a great job of learning to take care of yourself and your IC now.

Annie

[desolationangel]

just another thing to reduce quality of life.

no sex, no food, no running around being crazy, constant pain...

some days it's hard to see the point.

[Lise]

thanks everyone, it helps somewhat to have people who understand. I really don't know if I'm ever going to be able to do this diet. Today I really didn't care about anything. I am taking prelief, a lot, and Advil, and Tums and the OTC pyridium. If it wasn't for that I think I'd be in screaming pain, because it hurts right now even with all this stuff I'm taking. Life sucks!!!!!

[ICNDonna]

The diet does get easier as time goes by. At first it was very difficult for me, but once I started feeling better it made it worth it. There are many things I can eat --- even pizza --- what I do is order it without the tomato sauce. My family likes it better that way now.

Warm hugs,
Donna

[sister]

Like desolation I adore spicy foods.

A big jar of homemade salsa is my favorite (I put habeneros in mine..omg). :( Chocolate I could take or leave but tomatoes are my favorite food (homemade marinara...mmm...)


Strangely the food I found that bothers me the LEAST is sushi (without wasabi of course) I was a a little surprised by that and I have never eaten sushi before but now I am working on acquiring a taste for the stuff.

It can take work to find what agrees with you. It is a very depressing frustrating process and one I am still struggeling with everyday. :(

Prelief does nothing for me. I haven't noticed any difference when taking it at all.

[kadi]

I was soooo miserable on the diet when I first started... My cooking skills were pretty limited and takeout had been the mainstay of my diet. I was exhausted having to learn how to cook after struggling to stay working while sick as a dog. I also got frustrated in the grocery store, both from not knowing what would make me sick and having to search to find foods "clean" enough from preservatives & vitamin C supplementation. Then availability issues.....one day, I had to leave a grocery store to cry because they were out of pears and there was no other fruit I could eat.

I still do not love the IC diet, but try to keep the perspective that it dramatically reduces my symptoms, has no side effects, and is not expensive. I've followed it for 15 months & have now learned my trigger foods & what I can usually eat. I still miss certain foods, mostly in social situations when I feel left out (like when my colleagues went for Japanese food, problematic to me because of IC-- plus soy, fish, shellfish allergies- not sure even safe to order there at all due to cross contamination in the kitchen food prep.). But, once I figured out my trigger foods, worked with a dietician, & learned to cook, I've developed new favorite foods & learned to shorten the amount of time spent in the kitchen... It's much much more manageable now. Some foods I used to love (like diet cola, now smell horrible to me, very chemical!)

Hang in there, it gets easier AND your health is much more important than any former favorite food!

[Sarojini]

I hate the diet too sometimes. I think we all do. Like many, I love spicy Thai food (there's a Thai place here in Memphis that makes, upon request, things "Dancing Man Hot" and I love it but it's SOOOOO hot the blood vessel changes it induces can actually make my husband hallucinate ;) ), spicy Mexican, spicy Indian, spicy Morroccan food.... oh, need I go on and tempt all of us? :)

Anyway, I think it's best to give the diet a shot in the beginning.... it really can help many people, and it can be very worth it.

The good news is, later, when your treatments begin to work and you've found the right ones for you, you may be able to occasionally eat some of the yummies again with Prelief. I know now I can have Thai or some other spicy food once or twice a month, with Prelief, and toned down a little (no more Dancing Man Hot which my hubby probably secretly is thankful for ;) ).

Once you follow the diet for a while and also have been under treatment for a while, the inflammation will go down some and you will then feel better. Then you can start experimenting and see if you can or can't eat a few of your fave foods.

[JenG]

I know what you mean! I love spicy foods! It has been hard adjusting to the diet, but every once in awhile I treat myself and make sure I take prelief with my food. But I overdid it this weekend at my husbands office xmas party and even the prelief did not help! :bonk: So here I sit with my heating pad trying to get over my binge!
Hang in there, I'll certainly need all the support and strength I can muster to make it through my first holiday season since being diagnosed! :grouphug:
Jenny