A list of GOOD foods somewhere?

[Mikki H]

I know there is nothing definite about IC, but does anyone know of anywhere out there where there is a list of foods that are most likely fine for IC?? I have the "IC Survivial Guide", "You don't have to live with IC" and Bev's Cookbook and I'm still somewhat confused and frustrated as their "Lists" of foods to avoid aren't the same and there are still so many questions...


PLUS, I'm in a terrible flare up - and it would be great to have a good (LONG, if possible!) list of foods that I could just put up on the fridge and eat knowing I wouldn't aggravate a flare..... this has been a terrible flare and I'm somewhat recently (a few months) diagnosed and it's just so frustrating. I get some relief from my regimen of taking pyridium, detrol, and prelief and my muscle relaxers at nite and sometimes I add ibprofen or naproxen for lower back pain and other aches. I also take a LOT of Metemucil and once in a while a laxative.... Thanks for your time...

[Kathi]

This site also has a list of no no foods. Anything that's not on the list is considered OK. The most important thing is to get yourself to a place where you're not flaring & then do the diet. After you find it helping you, you can start adding new foods, one at a time, for about 3 days. If you have no problem with it then it's ok for you. Have you been checked for an infection? Metimucil, I don't know about. I use Colace stool softener & so do many others with no problem. IC is a whole trial & error kind of thing. What's good for one may not be for another. You have to learn YOUR triggers. Hugs, Kathi:hi:

[IBNPAIN]

Hi,
I hope you are feeling better by the time you read this. I am also in a terrible flair and don't know what foods to eat and what not to eat. I decided just not to eat at all. I think I am near death, now, so that's not the way to go.

I find that ibuprofen and Advil and all those kind of medicines for aches and pains really worsen my flair up. I more or less just suffer through it all. Right now I am taking Elmiron and Uristat and having bladder instillations and it seems that just when things are feeling a bit better, it just gets worse again. I am watching everything I eat and am really just lost and so darn exhausted. I ask my doctor to prescribe some kind of pain relief, strong pain relief, like Vicodin or Percocet and he wouldnt' do it. He said they are too addicting. I'd rather be addicted to pain killers that are killing the pain than deciding the pain is too bad and killing myself, but I am about at that point.

I hope so much that you get better soon. I was diagnosed in April, but have been dealing with this for over a decade. I just keep praying for a cure and for the strength to make it another day.

I'll say a prayer for you.
Carol

[kadi]

Here is the list I've used since Sept. If you scroll down the page you'll find a 3-column list of foods. I started out eating the blandest things in the left hand column (chicken, rice, pears) and have gradually added in one at a time other foods from the left hand column. Most in the left are okay for me, although there are a few exceptions. After I figured those out (if they flared me or not), I started trying things in the middle column, again one at a time, a few days in between each "experiment".

www.ic-network.com/handbook/diet.html

By marking "ok" or "not ok" next to each food on the list, I now have a list that's true for me. And, the good thing about that, is that now I can find recipes in regular cookbooks and modify them (if possible) to use "my safe ingredients".

About the ibuprofen, it flares me horribly and I've heard it can do that to other people also. (Took it once for a headache & my bladder hurt so bad I forgot all about the headache). If I need something for pain, I take 2-500mg Tylenol with 4 preliefs. (Without the prelief, it hurts me too).

Hope that helps, it's time consuming and kind of frustrating in the beginning, but as you feel better and your list gets longer, the diet becomes much more manageable. The beginning is the hard part.

[kadi]

Oh, yeah. Colace is what my urologist recommends. Also, I recommend pears... I don't know about regular Metamucil, but I did notice that the Metamucil wafers contain citric acid, very very bad for IC. Be sure to read labels, even on stuff you've used before IC...

Feel better soon!

[Mikki H]

Well Carol, you sound like you're doing worse than I am. I'm sorry you are having such a hard time. It is so frustrating isn't it? I wondered if anyone else felt like I did - wanting a list of foods that are safe, but of course, there are more questions than answers with IC and it seems even the experts and doctors don't have goood answers.

I ate toast with peanut butter earlier and while I ate, I was reading my IC books and I saw peanuts can cause real problems for some.... I just ate it anyway - couldn't think of what else to eat! We were going to go out shopping for a few hours and I didn't want to get all run down from starving myself.... So far I'm ok from it, but the medicine might be buffering it for me.

If I'm still having trouble by Monday I am going to go in and have a urinalysis done.

I find Percoset or vicodin make me nauseous. I take the generic form of Soma = it's a muscle relaxer and it really does seem to help - it makes me sleepy tho and I have small children, so I take it at nite after they go to bed, (they don't nap and go to bed pretty early like 7:30pm!) but it helps me relax and sleep MUCH better. I can't say that it takes away burning or frequency or what it really does besides relieve my bladder cramping up. I sometimes will get a tightening, cramp and I can't relax it and urinating is almost impossible. But the soma helps put me in a more relaxed state and calmer, happier or whatever. I don't know about addiction, I've been on it for a long time now! I just might be addicted and like you, I don't care.

Thanks for responding and I hope you are doing better very soon too.

[Mikki H]

Kadi, thank you for your post - very informative and helpful - gives me something to work on... I hereby now stop all IBprofen! What about naproxen? I've been taking that here lately, but am now switching to Tylenol..... I get bad backaches and headaches... don't know if it's related to the IC or not. I'm gonna go look at the link you sent me.

[kadi]

Sorry, can't agree with you guys about addiction to painkillers. Maybe you're just talking off the tops of your heads... I know pain is awful, and I wanted to die when the pain & sleeplessness were so bad last Fall, so I understand wanting, something, anything to stop the pain.

BUT- a wonderful friend of my family has IC & back pain & I believe she may be addicted to painkillers. She's had to detox once and will have to go through withdrawal/detox again soon because her doctors are again telling her she's on too much and it needs to stop. It is heartbreaking to see her so spaced out and unable to hold a clear conversation. I don't think she has anything that really matters to her anymore.

It scares me, I sometimes worry I'll wind up like that, but I do everything I can to manage the pain without drugs that could limit me further in the long run... It's one thing to really need strong painkillers when you've done everything you can to manage it without, but another thing to eat trigger foods and then be frustrated at doctors when they want to protect both the patient and themselves when it comes to narcotic pain relief. And I've seen that happen on this site.

I am not trying to attack you or pick on either of you particularly, but I might not have realized the danger in those meds if I hadn't seen it firsthand in another IC patient.

Please, please try the diet and all the self care measures you can. If you are a new patient, it may take a while to find what works for you. I got sick last July, my pain hit it's highest point in August and September. I am still not well, but I am better and am continuing to struggle along with piecemeal recovery. I am happy for each tiny victory - they are slow coming... The maddening thing is that no one treatment seems to fix it all, but bit by bit, things are coming together.

When it comes to the stronger drugs, if they are still necessary -and for some people they are-I think several patients here online have mentioned making a contract with their doctor regarding the prescriptions. Just, please, I urge you to keep a clear head about the dangers of addiction, because with addiction you have two problems to deal with - Detox and IC.

[Mikki H]

Kadi, I hear what you are saying and I do think we were talking off the tops of our heads a bit, I was anyway. I don't think I'd consider this muscle relaxer in the same group as the painkillers, but I'm not sure of it's addicting or not. I don't feel addicted, but like I said I've been on them for quite a while. I started out using them for my neck pain and then that has subsided. I stopped and had a whole stockpile of them in my cabinet. When I got IC, I started using them again - only 1-2 a nite and I do have nites I don't use them. It's something to think about. And I only take them at nite bc I do not want (nor could I get away with it) to be a zombie with my kids and the things I'm involved in. I'm also a preschool teacher so I just can't having ANYthing stealing my energy! That's why I miss caffeine sometimes :)

I wanted to tell you thank you again for the link and list and Kathi too for pointing it out. I had looked at this list early on in my diagnosis but forgot about it I guess. It's SO nice to see foods listed under the Usually ok column! I just had a WONDERFUL dinner of chicken & corn sauted in the pan together w/olive oil - with tater tots (for the kids) and I ate some raw cabbage w/it (one of my favs). Right now I'm trying not up to doing any questionable foods, but it's good to have guidelines again. Thanks again. I looked at Metamucil pills and it didn't have citric acid - th ankfully.

[kadi]

No problem. I actually taped the list to my fridge so I could see what I could eat!!! I live alone, but maybe that would be a good idea for a spouse or other family members to be able to see it visually. I made a soup last night that was soooo good, I even impressed myself!

Boil water with salt and brown rice for 15 min.
Add raw chicken & boil for 15 more minutes
Add vegetables (sliced carrots, celery, mushrooms)
Boil a few min.
Then turn heat down to low and simmer 1/2 hour.
EAT!

I had this with crunchy bread and a glass of 1/2 water-1/2 Trader Joe Pear Juice (100%pear, no other juices or citric acid!). Trader Joe's has a plain merengue cookie with just sugar, egg white, vanilla. That was dessert:)

A pretty good dinner. I made 2 pots of soup - one with brown rice, one with barley, and froze the extra for nights I don't feel like cooking.
(In fridge overnight first & skimmed fat off top before freezing).

[dabkil]

Thanks for this thread. I have been diagnosed with IC since 97 with various treatments and results. Currently mostly controlling it with diet. But you have confirmed my suspicion that ibuprofen was a trigger for me. I use it religiously during my periods, so thought my hormones were triggering the outbreaks. This last month, every time I took Ibuprofen, I also took Prelief and the symptoms were almost nill.

dabkil :thumbsup:

[Indy]

I have a controversial opinion on the "IC" diet. I have had this disease 10 years with lots of very long remissions in between.

My flare that has lasted since November, caused by repeated infections led me back to the "IC Diet."

I am now sure that is what made me worse. I started eating a lot of what was on the diet instead of what I knew worked for me over the years such as taking prelief with acidic foods and avoiding anything fermented and aged.

Living off potatoes, honeydew, brocoli and other marvelous suggestions from the IC diet put me on a potassium overload!
The diet mentions bananas and a possible potassium trigger but leaves out that honeydew, peanuts, carrots and so many other items on the list have 4 times as much potassium.

I think the cookbooks are awful because they are inconsistent and don't account for how the foods are chemically changed during digestion.

I may write my own!