foods and remission

[alana rose]

I'm just curious, as I'm not in a remission, but when you are in remission are we able to eat some of the 'forbidden' foods. I know that everyone is different, but I just wanted to have some idea.
thx!

[Dixiefireball]

when i had those gloryiest 18 mths of remission i still stayed pretty much on my diet i was afraid of throwing my self into another flare. however i was able to add a few things back to my diet. and did fine with them, but i didn't dare add the harsh stuff back to afraid too. I pray after this surgery i will be able to go back to remission I hope I pray!! i want to be able to be only on one med a day and that would be my heparin treatments.

[ICNDonna]

I stick with the diet --- when I feel good, I don't want to take any chances.

Donna

[Katrina]

I would be very careful at first. When I have been in remission I was able to eat normally....but have had times when I have felt somewhat better that wouldn't allow me to cheat on the diet.

[alana rose]

Thanks for the replies...I suppose that I was hoping that chocolate may one day be back in my life! lol!

Last month when I had the cystoscopy/endo my uro said that my bladder was a 1/3 before it was a 2 1/2. He told me that I was one of his patients that had ic the most severe. I am hoping that I am heading towards a remission. Even if I went back to the old pain level I would be so happy. The pain right now is just terrible the worst that I have had for this period of time. I had a Lupron shot ten days ago-I have read that the shot can worsen your symptoms (oh yes, I was dx with extensively moderate endo)
So here's hoping that most of this pain is from the endo and the Lupron will help me.
Thanks for all of your support. I truly don't know what I would do without everyone on this board.

[Janie Miranda]

Alana Rose,
Hi there - could you explain what the doctor meant by "1/3 before it was 2 1/2". I haven't had a cystoscopy so I don't really understand the terminology. Thanks in advance.

Janie
PS. I REALLY hope you feel better soon

[ChrissyH]

I had a period of remission that last for about two years. It was glorious. I could eat, drink, do anything. I was off all medications and had no diet restrictions. I felt normal and wondered if I had been misdiagnosed. Then, about a year and a half ago, IC came back with a vengence. I control mine now with medication and diet, but pray for another remission or a new medication that could help us all.

[alana rose]

Janie-
When they do a cystoscopy the doctor grades your ic on a scale of 1-3. I was a 2 1/2 almost a three (he is an odd man 'almost to three'. he also told me that my mind was creating the pain because my body was dependant on the pain meds. He has totally changed his song now since my family doctor spoke to him!) A 3 is severe; 2 is moderate; 1 is mild. So my bladder has healed quite a bit.

Good days to you-here's hoping for a remission!

[alana rose]

I wonder what causes us to go into remissions? Is it because we adhere to the ic diet? I guess if we knew, we would be millionaires!
Just curious if anyone has there own 'theroies'.

Have a great Friday! :)

[vm]

I don't consider myself in a true remission - but the meds I am on leave me feeling pretty normal most days. I rarely flare - but have the good fortune (NOT!!) to be flaring midly right now. Oh joy! ;)

Anyway, I have been able to add back in all foods. I attribute that to Elmiron. I added foods back in slowly once I was having pretty much no symptoms left. It was a year, year and a half before I added tomato back in. When I flare I do go back to bland foods, but like I said - this is my first flare up in months and it's pretty mild.

[jaime15]

I'm with Kim. I give all the glory to my elmiron.......it really did the trick for me. I am able to eat and drink almost anything. Like tonight we went to a restaurant and I ordered sesame chicken and had 1 mixed drink. For dessert, I splurged, it was a chocolate (dark and white choc.) cake. Yum!
So you can add thinks back slowly. I suppose my symptoms aren't really a remission since I take elmiron all the time............but I like to *think* that since I can indulge now. :)

[Janie Miranda]

Thanks Alana for explaining that to me! :-)
janie

[hopeful]

Gosh everyone its been a long time since ive been in these neck of the woods not because ive been doing good :( but i was busy being pregnant and now with a new born.

I have some hope finally though as last year i was diag. (june) and the Kaiser doc i saw was the biggest jerk alive. Had a aweful visit and well pretty much decided the heck with it all im going to just live my life. Kinda in denial I think not that IC lets you be but I struggle a lot with facing the fact that I need to limit most foods. Does anyone else have this prob? There are just certain things i really enjoy I like enjoying my food and not have to read every label and continuously put stuff back on the shelf. I stay away from the obvious one tomatoes, spicy foods, oranges stuff like that but salad dressing, mayo,frozen foods, pasta, bread, ect all this stuff had like citric acid well most stuff does and its like dang what you just eat beans and water i get really depressed and even cry with this because it also puts a damper on your social life eating out family gatherings it just sucks. What is the typical diet for some of you like whats a typical day what you eat and drink so i can get an idea i know everyones different and how did you all come to your own individual diets? do you take vtms supplements and where can you get any without acid in them?

well the good news is that while i was on an ic site a outside doc in my area popped up and i said what the heck i prob cant afford to go to him but ill call anyways. The nurse i talked to WOW!!!! she talked to me for like almost an hr and was so helpful and understanding and she doesnt even has IC but she said that i was mislead by the kaiser doc and that there is treament and things they can do to help me and i started to cry because the Kaiser doc said there wasnt any treatment that would be effective and that my whole likfestyle would just have to change but he was very rude about it, well i have an appt this Friday morning and the visits only 150.00 to me thats not a lot if i can get some help and she said that the installs they do are usually 200.00 a visit but that they are getting so many kaiser and private pay patients with this that they are only charging 50.00 a treatment can you believe that? so wish me luck and says some prayers. she said more then likely it sounds like i have severe IC because last year with my cysto i was diag with an ulcer too and she said that usually the last stage. OOOCHHHH it will prob take a long time to start helping but i dont care im just so glad i found someone who will listen and treat me. we talked about elmiron has anyone had the hair loss prob? that scares me........

hopeful

[sedavis]

I've been symptom free for a year. I've added most things back except tomatoes and coffee. I also stay away from Old Bay seasoning. I went to the uro yesterday and he and I are both pleased. I still worry everyday about when this good period will end. What causes you to go out of remission? I haven't had a uti in along time and I wonder if that is helping me stay symptom free. I just dont get why you have good periods and for no reason it all starts up again. Elmiron has really helped me. the Uro wants me to go off the Elavil and Atarax for a week and see if it makes a difference. I dont want to change anything and rock the boat. Sue

[stacey79]

Right now when I'm on just good days, I'm still careful with my diet because eating something I shouldn't just makes me feel bad.

However, I'm one of the lifers. When I was about 14, my IC symptoms went away. I just had an ocassional UTI. I was still careful about not drinking too much pop or juice. But, by the end of high school and into college I didn't really give it a second thought. I still wasn't able to drink too much pop, but I was OK with Coke and even Mt. Dew. I just sort of inadvertently added things the longer I felt better. Of course, I also didn't know as much about the IC diet way back when.

For now, I'm sticking with my diet for as long as I need to. I also know that I have it pretty easy. I only have to avoid soda (except A&W), citrus fruit and vinegar products (ketchup, mustard, salad dressing, etc.).

I hope you are feeling much better soon. :grouphug:

[mom_in_ma]

When I'm feeling good I can eat and drink anything I want. However, I rarely drink soda and I still avoid red tomatoes like the plague because I'm just scared to try them. When I start to flare, I just go back to the IC diet until I feel better. I've not flared for a couple of months now.

[poetgirl]

I consider myself pretty much in remission, because I rarely have flares (like what I had experienced) anymore since being on Elmiron, Elavil and Detrol LA. Food is not a big trigger for my IC -- I can eat most things, although I do know that a few foods (tomatoes, some pickled foods and vinegar) will still cause burning when urinating several hours after ingesting them. Usually it's not bad enough to stop me from indulging! Most of the time it's just annoying -- it lasts about 5-10 minutes and then goes away. Rarely will it ever be worse than that. I stay away from asparagus because I had such a terrible flare from it two years ago that I've decided to just not ever eat it again, but nothing else has triggered the same reaction.

I will say that when I went off Elmiron for a while (about 2 months) to see how much I'd stabilized, I experienced more burning overall. So I really do think the bladder coating has helped me a lot and it has been better since I went back on it.

[hoping4acure]

alana: I am in remission and yes I have been ale to eat things I once couldn't eat and yes chocolate is one of them. I introduce one new thing every week.

So, YES...There is hope! :)

[cinerson]

When I found out I had IC it was after I had my hysterectomy and still found to have tenderness in my pelvic area. My doctor sent me to see Dr. Mosbaugh to confirm that I had IC and it was such a relief to know that I was not alone in this fight. I was determined to not have this affect my way of life and to do what ever I could to help find a cure....I eat and drink pretty much what I want to and when I find that something bothers me I don't eat or drink it anymore. I still drink my coffee in the morning, I however do not eat tomatoes nor can I drink wine and I stay away from spicey foods. I believe that I have been in remission for 1yr, had a set back last September. I live on the NE side of Indianapolis and would like to find a support group.

[stacey79]

Hi, cinerson! I'm very nearby you geographically. If you go down to the regional posts with Indiana, you'll find that a few of us have been talking about support groups in Indiana. I'm starting a general support group for chronic pain and illness at my church in Muncie to meet once a month starting next month. If you are at all interested, please feel free to e-mail or PM me.

[ellienor]

Just thought i would ask in this thread if anyone ever had a bladder problem getting an upper GI series?
thanks.

[Bianchi]

Hopeful, I am really glad you found someone to do instills. They helped me a lot.
Good Luck to you.
Bianchi

[hoping4acure]

Just thought i would ask in this thread if anyone ever had a bladder problem getting an upper GI series?
thanks.

Ellienor...that is a good question. If you find out let me know. I am scheduled in October to have one done, which, is when my pre appointment is with my doctor.

Thanks.


Louann
lpark@russelectric.com

[iwishihadiwingz]

When i was in remission I could eat anything i wanted! The only thing that ever bothered me was Orangina...and i love that stuff :(...I hope to be there again one day soon.

[Pristine]

I just pigged out on Spaghetti and tons of tomato sauce tonight and i'm ok. Medium tingling which feels more like a sexual labido urgency than IC lol. I think I have struck a gold mine of spaghetti sauce. The brand is Barilla and it seems to be less irritating on my bladder. I couldn't eat it if it were any other brand. Have been eating it for months now. But it could be just because my Elmiron is working well.

[ellienor]

mine gave ma a mild flair cause i should have eaten more fiber that day. Make sure you do that right away. That stuff will glue you up.
but it only lasted one day.
Now i am in a 2 week flair and am concidering Elmeron.
How are you alls side effects with it? Is is working? Does it taste bad?

[Pristine]

Uper gi
Never had any problems from my upper endoscopy and just had a barium swallow last month to check my lower bowel out. The barium aided me in popping some old sutures from an old surgery i had 3 years ago. They needed to pop back then but sort of held on and irritated me and when the barium went through me i felt such relief. Finally i'm not bound anymore. Good stuff even if it is icky to drink.

[dr.hope]

I have been reading the patient hand book. I was just wondering if it is better to just eliminate everything on the problematic list or to just eliminate the most harmful things like cranberry juice, coffee, carbonated beverages, tomatoes, and tobacco. I'm not sure what to eat all the things that are problematic are the things I normally eat it's like I have to start all over but if that's what it takes to relieve my pain I don't mind. Also I am always very lathargic I guess part of the reason is because I get up all doing the night to go the bathroom. Does anyone else feel this way? I work in a sit down job and it just makes me so tired and my legs ache allot even though I don't move around much because of the pain. :help: :toilet:

[stacey79]

Hey, there. Many of us deal with being tired, too. YOu aren't alone. Getting up at night to go to the bathroom wears you out, feeling bad wears you out, medicines can make you tired, etc., etc.

As far as the diet goes, I encourage you to experiment with it and see what bothers you. All of us are so very different. Be sure to check out the diet board under self-help that is on here. You might also want to check out http://www.nutraconsults.com/. It's a site on diet that has a free e-newsletter. THe person who runs it is a nutritionist with IC named Julie. You will find posts from her on the diet board. She is very helpful.

WHat I did with the diet that worked for me was eliminate everything except the usally OK list. Not the most fun or interesting diet, but after a week or so, my symptoms eased and I slowly started adding more things back in to see what was bothering me. I kept a journal of what I ate and how I felt to help make my life easier. I encourage you to try things and not just avoid everything. FOr example, I knew that most soda bothered me as does citrus fruit. DOing the diet helped me realize that I was OK with drinking A&W root beer (even the diet kind!), but that anything with vinegar would make my bladder hurt. I discovered I can still have tomatoes and onions, meaning that I can find things I like at Mexican restaurants and Italian restaurants - which are my two favorites.

Good luck to you. It can be intimidating to think of giving so many things up, but think of it instead as finding out how many things you can have. I know just giving up my three main trigger products made a HUGE difference in how I feel. :) Hang in there! :grouphug:

[stacey79]

One other thing I thought of is Prelief. Once you know what bothers you, you can try eating problem foods with Prelief. It does help sometimes. I also take it any time I'm not 100% positive on ingredients, like if I"m eating at a new restaurant or someone's house. ANd sometimes I take it so I can enjoy having a treat of something I can't usually have like a caffeine-free Coke or something.

And, be sure to check ingredients on things. I found that my favorite jelly beans had caffeine in them! I ate some and then paid for it. Who would have thought?

[Debkins346]

I thought that "remission" just meant that the pain was under control...or gone, as long as you stayed on the IC diet and continued on your prescribed Rx. I had hoped that after my mom's bladder had a good chance to calm down, we might be able to let her eat some of her favorites again, but I was worried about her having to deal with the possible pain...which always results in anther trip to the ER. In reading all of your posts, I'm finding out that once you're in remission, you can start adding back some of the foods that are on the "no-no list." This is great news...for my mom, Kitty. I do understand, however, that these foods need to be added back "one at a time," and in small amounts. She has an appointment with a new uro next week. This new uro is supposed to know all about IC (the last one knew absolutely nothing!) Hopefully, she can get some Elmiron to help her deal with all of this.

[hoping4acure]

debkins346: I think "remission" like with IC is different with each individual. With my remission...my doctor advised me to start adding things back into my diet. The last hydro I had she could not believe the difference in the lining of the bladder. I only had a tiny bit of pink after she filled my bladder. I still have my moments and I am not totaly convinced that I am 100%...It's just to good to be true. I still stick to the IC diet for the most part. One of the things I am trying to get back into my diet are vitamins and minerals.

Good luck with your mom...there is hope out you just have to believe in it. :kissing:

:grouphug:

louann

[ellienor]

On this thread, there are those who are feeling better because of elmiron.

Can you please give us a quick low down on these points:
1-How long before you felt relief
2-did you need to do something special to deal with side effects, such as taking the powder out of the capsule.
3-How much do you take each day
4-Do you take it with food or not.
5-Side effects and how long did it take for them to go away, if they did.

This would help us that are considering it be prepared for how we can deal with it.
Thanks to all!!

[stacey79]

I don't have a good answer on how long I was on Elmiron before it started to work for me. I tried other stuff at the same time. I think it was within about six months.

I've not had trouble with the side effects, so I just take it in pill form without emptying out into water or anything. I only take 100 mg two times a day. I do my very best to take it on an empty stomach. I even set a reminder in my e-mail program to remind me in mid-morning between breakfast and lunch. However, if I can only take it with food, I do that. Like on the weekends, I tend to take it at breakfast or else I get busy and forget. I asked my uro about it and he said just remembering to take it was more important than always having an empty stomach, but talk to your own uro about it.

The only other side effect I notice is some extra shedding of my hair. I'm not sure it's really the Elmiron, though. I also take 15 mg a day of Ditropan XL and took it years ago. I noticed extra hair loss then when that was all I was taking.

[hoping4acure]

I took elmiron three times a day 100mg. each. It took a good year to work for me...what helped me MORE was the atarax.
It didn't bother me as far as side effects.
I did loose some hair...but I have very thick hair.

[ellienor]

Need:
How much Atarax and how long to take effect?
Do you need to take it each day, or only when your histamines seem to be up?
That stuff is so harsh.
I only took 5 mg at first and it did seem to help. I am still not completely out of my flair, so I may up the dose, but I dont want to.
Also, what happens when you get a head cold?
Does this stuff help with that?
Do you flair when you get a cold?

[hoping4acure]

Need:
How much Atarax and how long to take effect?
Do you need to take it each day, or only when your histamines seem to be up?
That stuff is so harsh.
I only took 5 mg at first and it did seem to help. I am still not completely out of my flair, so I may up the dose, but I dont want to.
Also, what happens when you get a head cold?
Does this stuff help with that?
Do you flair when you get a cold?


I was taking 50mg. and I felt the difference right away.
No, it didn't help me when I had a cold or anything. I have seasonal allergies and I still had to take my medication for that. It's a different type of histamine.

I never got sleepy from it either. It made me hyper. I had to take it in the morning. I know most people it does make them sleepy and they take it at night.

I used to have a hard time when I had a cold or flu because everything would make me flare. I turned to homopathic medication and took a lot of natural supplements. It worked for me any way.

Feel free to ask me anything you want.

:grouphug:
Louann

[KeeKee]

I have experience with both Elmiron and Atarax. They both worked extremely well for me, but I think the Atarax probably helped me the most. Elmiron dosage: 100 mg 3 times a day, always on an empty stomach (2 hours no food before taking it and 1 hour no food after taking it) and with a full glass of water. I had a little nausea and some heartburn for the first 2 to 3 weeks, but then it went away. Seems like it took about 4 to 5 months to start really kicking in. It was a very gradual decrease in pain and frequency. Atarax dosage: 10 mg daily. I think most people take a much higher dosage, but 10 mg seemed to work for me. It took about 2 months for me to see a difference, but one time I tried to go off it because I was doing pretty well and I was in a lot of pain 3 days later. It made me realize how much it was helping. (I've since tapered off the Atarax because I'm trying to conceive and am taking 10 mg of Zyrtec. The Zyrtec doesn't help nearly as much, but it's something.) I didn't have any side effects from the Atarax. Also, in conjunction with taking these 2 drugs, I always watch my diet very carefully, even to a fault. I've been guilty of not trying new things out of fear of a flare! Hope this info helps!