The diet really worked for me!

[Aza]

I just want to say- i was so miserable and losing hope- but now i feel amazing! This site has been so helpful and supportive and has got me through some really tough times.

I had a very sudden onset of severe IC symptoms, that came out of nowhere. I had never had a UTI in my life. After several months of hell i guess i was lucky my symptoms were so severe that i was refered to a Urologist really quickly. I was diagnosed with IC after several tests. However, none of the treatments the Dr tried worked. Elmiron, antidepressants, 2 types of anti-spasmodics and weekly heparin instills, and daily vicodin. I was having pain and flares lasting several days at least once a week, i couldn't sleep more than an hour without waking up in pain and needing the toilet. Frequency and urgency with burning discomfort was constant- i felt so miserable. My Dr decided he wanted to try interstim therepy.

Instead, i returned home to England to live with my Mother and went on a strict IC diet. I just want to say- it has been an amazing thing for me. After just over 2 months being really strict, I still have IC, but my symptoms have massively decreased, and as of this momment i have not had a major flare for over a month. I was sort of following the diet before, but not strictly. I was having agonising flares every few days and couldn't sleep without taking several vicodin at least. Now, after following the IC diet really strictly and avoiding other flare triggers like cleaning chemicals, i feel a million times better. Although i still have IC and have to be strict with my diet, i feel like i have my life back. My symptoms are still here, but are much milder and don't affect my life too much at all. My flares a shorter and much milder.

I did not believe the diet could be this effective. I know everybody's triggers are different, but this is what helped me, and is the diet i currently follow:

I eat no fruit except occasional pears. I eat no products containing any fruit at all. Tomatos and fruit juice are a major trigger for me.
I only drink Evian water and milk, and very diluted blueberry juice. Also ocassionally camomile or peppermint tea. I drink NOTHING ELSE. (i miss coffe and coke so much lol)
I eat lots of fresh meat and vegetables, pasta with cream sauces, fried rice etc. The main thing i have found is that i have to cook eveything myself from fresh products, any ready-made or pre-prepared store food is a big no no.
I favour my food with garlic and salt and basil mostly. No pepper or any kinds of spices.
I can eat a plain cheeseburger and chips from mcDonalds, but other fast food is avoided ;)
I avoid all products containing soya. I eat nothing fortified or with artificial flavors etc.
I found it so hard to give up treats like chocolate and cookies. But when i sneak them i always get a flare.

The IC diet may sound boring but once you get the hang of it there are loads of yummy things you can eat. There are lots of good ideas on this site too. I admit, i have found it easier moving back to the UK, simply because the traditional cooking here contains far less IC irritating ingredients like soy and mexican style spices. They don't add things to their food here like we do in the USA. I found Trader Joes good for fresh food, but it still often had a lot of spices added to things. When i go to a restaurant here, there are loads of thing on the menu i can have without having to worry at all. Spaghetti Carbonara, delicious chicken pie with potatos and vegies, haddock with chips and mushy peas, mushroom rissotto, creamy garlic mushrooms with french bread etc. I would definately advise checking out some british cooking sites for recipe ideas if you're stuck with what to eat on the IC diet.

All i can say is i genuinely feel much better. ANd the support of everone on here has helped so much as well. I stopped all my treaments 2 months ago. Now i just follow the diet and take vicoden to deal with flares when needed. I am taking no other medication or having any other treatment at the moment.

[ICNDonna]

:) Thank you for sharing your success --- it's very encouraging for new ICers who are still struggling.

Huge hugs,
Donna

[Aza]

Thank YOU so much Donna for all your encouraging words and the support you show people on here. So many times i have been on this site when i am miserable and in the middle of a bad flare. Reading the advice and words of support from you and others really made me feel that i wasn't alone. It helped me so much. I was so depressed about my IC, but now i'm happy living my life and managing my symptoms well. I just wanted to say to others that there IS hope. Just keep trying to find a treatment that works for you- don't be afraid to take painkillers to help with bad times, and give the diet a real try- what have you got to lose :)

[Briza]

So nice to hear your success with the diet! It does take discipline but it sounds like you are eating very healthy! Good for you:)

[Aza]

That's nice of you to say. I feel like the IC diet is pretty high in fat, protien and carbs for me because i have swapped tomato based sauces for creamy alternatives and drink milk instead of diet coke or coffee. I eat lots of pasta, rice and potato, and though i was never a big meat eater before, i have been eating a lot more lately. Oddly though, i have lost weight, and i don't get that uncomfortable swolen IC-belly so much anymore. The one thing that still gets me though is travelling, but hopefully when my symptoms have had a bit longer to settle, the dreaded travelling-flares will die down a bit too.

[lonely sole]

Hi - that's wonderful news, thanks for sharing! Always glad when one of us IC'ers finds something that works and relief. :)

Do you think the move back to the UK may have reduced your stress levels and helped in that respect as well? I know stress is a big factor in my pain and frequency levels...

[Aza]

Stress is major trigger for me too. The problem with stress is it's like a vicious circle isn't it- you get stressed, so you get a flare, which make you more stressed, which makes your flare worse etc...:dizzy:

I thought i would have more stress moving to England to live with my mother, but she has been really supportive and her constant monitoring helps me stick to the diet better. My famliy in the US were great too, but since i was living on my own, there was no-one to get annoyed with me when i kept buying chocolate lol. I am having a lot of difficulties in my personal life at the momment, but my IC is remaining under better control. I do still get flares, (especially when something gets me stressed) but they are not nearly as bad as they used to be, and only last around 6-8 hours instead of 3 days. I know the diet isn't exactly a cure, but it's certainly given me a lot of relief, which in turn has helped lessen my stress and let me take better control of my life. Keeping my fingers crossed it lasts lol ;)

[Julie B]

Aza that is great news! Thank you for sharing your story. It is wonderful that your mom is so supportive.

[blueberry72]

Aza,

I was wondering what you noticed about cleaning chemicals causing flares for you. Were there particular chemicals? Do you mean skin contact or inhalation? I had never seen this mentioned anywhere else. I have discovered that I am VERY diet sensitive, so this observation of yours interests me. I only eat pears from the fruit category as well, only eat fresh breads, and the only preservative-laden food I seem to tolerate is plain Pringles potato chips. Even red/purple-colored lettuce (now I'm not wanting to try the other varieties) and plain vanilla ice cream and plain store bought butter cookies trigger me. I also have seen a drastic improvement with diet, especially now that I am only eating the soothing foods and slowly trying out the rest of the OK list.

[Aza]

Hi blueberry,

Yes- like you i am very diet sensitive, almost anything that is packaged with preservatives can set me off. And yes- cookies- me too!! I bought some lovely freshly-made ones the other day that were so tasty- and then spent the entire evening with my bladder burning- darn!! I am so grateful to this site and Julie for the diet list though- it has helped me loads. It's great that you're doing well on it too- yay us! :)

My mother is a nurse and it was her that brought up my sensitivity to cleaning chemicals- she says they can set often off migranes with people (many triggers for migranes and IC are similar). For me it was skin contact with lemon gel cleaning liquid we use heavily at work. I couldn't understand why i kept getting flares after quiet shifts at work- then i realised when we are quiet we get cleaning jobs done, so i can sometimes spend hours with my hands in a bucket of floor cleaner. (I manage a restaurant and bar) Also inhaling the pipe-line cleaner we use in the beer cellar at sent me into a flare. I've been told by drs that inhaling chemicals can be just as bad as skin contact btw-

I never really believed that diet modification etc. was a way to help illnesses. I never expected the diet to work when i started, and was really suprised when i realised after a couple of weeks i could sit through a whole movie without rushing to the toilet every 5 minutes. When i first started the diet i cheated- and it didn't really work. I think many people who say that diet has no effect on their IC haven't tried to stick to a strict IC diet properly. I can't believe what a difference it has made to my life. Now if only i could find a way to deal with the discomfort at night.

I'm interested in the tablets you are on- i haven't heard of some of those. I just moved back to the UK and am stuggling to find a medication to help with my nightime pain and discomfort since we don't have Vicodin in England. The doctor keeps giving me pure codeine pills, but it doesn't help. Dihydrocodeine and tramdol seem to have little effect either- but my dr is reluctant to prescribe anything stronger because of my age.

[blueberry72]

The problem is that the pain meds I have are very country-specific and probably not available in England. With the effectivity of morphin = 1, codein is actually 0.2 while the opiate I take when needed is tilidin at 0.15, meaning it is actually weaker. I actually cut my tablets alot to decrease the dose. The other one, Berlosin= Novamin, is also country specific and actually banned in the U.S.!! I feel fine taking it if I really need it because I've done my research, but it's still a bit odd. I am currently going to try a new spasmolytic as well, because IMHO mine is not working well.

I hope you find something that works for you! Right now I am trying stretching and warm baths and hoping that helps in the long run. In the short run though pain meds are often a necessity.

[Aza]

Thanks for the advice blueberry- you're right, pain meds are very country specific and it's hard to find the right ones that work for you. The pain meds i have been prescribed here in the UK are the same strength that i was getting in the US, but because it is a different medication it just isn't working as well.

Yep- hot baths are a godsend. When i get a really sudden flare i take my painkillers then jump in the bath for 40 minute while the painkillers take effect. I find a warm wheatbag is good too for mild pain.

Travelling is still my major achilles heal though. Despite the huge improvement in my IC from the diet, i still find travelling very painfull. I'm seeing a new Dr tomorrow so hopefully he might have some new ideas.