Just Diagnosed

[Millicent]

My name is Millie. I was diagnosed this past week and had the bladder distension done as well. I'm not going to take the Elmiron right now. I am going to try and control it with diet. However, when I began reading up on what foods are usually bad I found a list that is about a mile long! Any advice is greatly appreciated. I'm still trying to find all the information about IC so I am fairly uninformed.

[leelee88]

Hello Millie and :welcome: To the ICN..

I know the diet seems complicated but it really is not. I do suggest keeping a diary of the foods you have tried and what bothers you and what does not.. Have you read The Patient Handbook It has a lot of great tips about the diet and suggestions that can help you. The link is on my signature. Just click it and it will take you there.. Good luck!

[Becky Boo]

Hi Millie :hi: yes the list most certainly does appear to be very long doesn't it :cussing: I was diagnosed in May of this year so know exactly how intimerdating it can seem! I've been doing the diet since February & I can assure you it really does get easier! The motto I used that got me through this difficult time was "I can eat what I want but I choose not to eat certain things as I choose not to be in pain". Just bare with it & take each day as it comes. We're all so different & you'll probably find there are things that you can eat that others can't. It really is hit & miss & takes time to know your triggers. I choose to use prelief (helps take the acid out of food & drink - you can read up on this through this site) I use it all the time & feel that it has been very benificial to me, but again, everyones very different! The ladies on here are great & have alot of knowledge so if you've got any questions ask away :smile tee!
Good luck & be patient
Big hugs
xx

[SharonA]

Millie...:welcome: to the ICN...

The IC Diet can seem complicated and very restricting at first reading, but I encourage you to give it a good try. So many people here have found it to be very beneficial it helping them get some relief from their symptoms. Once you have gone through the elimination part of it and begin adding more things back into your diet, you may find that there are many of your favorites that you are able to enjoy, again. Maybe in less quantities and not quite as often as you did before, but it is very possible. For me, it was very liberating to discover that, just by paying attention to my diet, I could have some control over my symptoms.

[NewLife]

Hi Millie!

I was diagnosed two weeks ago. I did decide to take Elmiron right away because I want to keep my condition from getting unmanageable. I am also reading a lot about the condition and am exploring this topic in several directions. While I did change my diet, I don't think that diet alone caused this as there are plenty of people who eat high-acid foods and don't have IC. Here's my action plan (perhaps you can use something from this list):

1) Explore the histamine connection. Initially, I decided to follow low-histamine diet but now I think I will see an allergist and get tested for food sensitivities to find out if anything is continuously irritating my system.

2) Explore the acid connection. I am following a strict IC diet and this is helping a lot. I did this in the past before I was diagnosed and it helped but as soon as my symptoms went away I started drinking coffee, etc. I will not make that mistake again!

3) Look into the acid/alkaline imbalance issue. I am going to get pH paper to test the acidity of my urine and will look into modyfying my diet to eat mostly alkaline foods. There are many books on this subject.

4) Supplementation. I am currently taking the supplements listed in my signature. The sea buckthorn is helping a lot.

5) Lifestyle adjustment. I have (had?) a very high-stress lifestyle and I am completely reorienting my plans for the next year to accomodate my condition. This means no new commitments, taking it easy at work and basically resting and doing only enjoyable things when I am not working. Luckily, I have a very supportive husband.

6) Modify my exercise routine. Running, biking and overexercising in general is bad for IC so now I have to find other things to do to stay fit.

I hope this helps.

[Millicent]

Hi Millie!

I was diagnosed two weeks ago. I did decide to take Elmiron right away because I want to keep my condition from getting unmanageable. I am also reading a lot about the condition and am exploring this topic in several directions. While I did change my diet, I don't think that diet alone caused this as there are plenty of people who eat high-acid foods and don't have IC. Here's my action plan (perhaps you can use something from this list):

1) Explore the histamine connection. Initially, I decided to follow low-histamine diet but now I think I will see an allergist and get tested for food sensitivities to find out if anything is continuously irritating my system.

2) Explore the acid connection. I am following a strict IC diet and this is helping a lot. I did this in the past before I was diagnosed and it helped but as soon as my symptoms went away I started drinking coffee, etc. I will not make that mistake again!

3) Look into the acid/alkaline imbalance issue. I am going to get pH paper to test the acidity of my urine and will look into modyfying my diet to eat mostly alkaline foods. There are many books on this subject.

4) Supplementation. I am currently taking the supplements listed in my signature. The sea buckthorn is helping a lot.

5) Lifestyle adjustment. I have (had?) a very high-stress lifestyle and I am completely reorienting my plans for the next year to accomodate my condition. This means no new commitments, taking it easy at work and basically resting and doing only enjoyable things when I am not working. Luckily, I have a very supportive husband.

6) Modify my exercise routine. Running, biking and overexercising in general is bad for IC so now I have to find other things to do to stay fit.

I hope this helps.


It does and thank you! I didn't know that certain exercises are bad....my head is spinning. My dr. said to try the IC diet and if I want to see if certain foods do or don't cause problems to do a void of them. I had the distension done and I think its going to really help. Just after surgery I had relief.I dicided against the Elmiron do to price and I want to try and control it other ways first. I caught mine fairly early and before the symptoms got too bad. So I am optimistic. However, the book stores here have no books on IC so I have had to order them.

[Becky Boo]

Hi Millie, you can buy some fantastic books on the sites shop so have a good look, might help make things a bit easier :) I had the bladder stretch done too & feel it has really helped :) I am on medication to help with frequency but I think with the combination of the 2 it's really helped! I went 13 hours Sunday through the night without peeing :woohoo: & my bladder capacity has most certainly improved! I used to pee about 100 to 150ml now I average 300 to 475ml (yes, to discover this I pee in a jug - I like to keep a check on this so do it at least once a week :rolleyes:)
Big hugs
xx

[mcdoll]

I can eat almost all the foods that are 'bad' without them affecting my bladder. I was in so much pain at first, and those lists freaked me out. The truth is there is no proof supporting the idea that the acidity of your urine affects people with ic, I think sometimes people just think it does. Many things that are acidic are no longer acidic when they reach your bladder. I'm not saying that diet can't affect your bladder, I'm just saying I don't think it has to do with the ph balance of your urine. When I was in the hospital they checked my ph balance and it was perfect, and I was suffering horribly. The only thing that bugs my bladder is orange juice, large amounts (over 3 cups) of coffee and too much salt (like if I binge and eat a huge bag of chips. I would write a food diary, but I was worse when I was controlling my diet than I am now. Just don't believe everything you read on this site and don't take the diet as gospel. It's unhealthy if you follow it too strictly. Elmiron helped me a lot. I couldn't walk before and now I can sometimes walk for a few hours at a time.

[Sera]

Just don't believe everything you read on this site and don't take the diet as gospel. It's unhealthy if you follow it too strictly.

Why is the diet unhealthy if you follow it too strictly? Can you please provide some more supporting information for this claim? Thank you very much in advance.

[sailawaygrl]

I don't think the diet is unhealthy. You just need to make sure that you are eating a balanced diet so you won't be lacking in nutrients. Everyone is different and foods affect each of us differently. Some my be diet sensitive while others are not at all. You just need to listen to what your body is telling you and make sure you eat something from all the food groups to keep a balance. The "diet" is a list of items that some find ok and that some find not ok. You will have to find out for yourself what you can tolerate. The people on the boards are not medical authorities but many have gone through much trial and error and can be a great resource for those of us that are still learning how to navigate IC.

Good luck

Sandra

[Becky Boo]

We're all soooooo different & what might affect one may not affect another. I know many women on this site that have offered so much valuable information to me when I first started out with the IC diet. They did not preech nor did they pose to be a specialist, they just spoke honesly about THEIR experience. It gave me great courage to listen to their experience to find a starting point for my own. I've still got a long way to go but supporting info or no supporting info - it's most certainly given me some direction :smile tee
Big hugs
xx

[Millicent]

I'm going to try and keep a food diary. Try being the word lol. My husband is helping a lot with the keeping track part but, he'll be gone in a couple months so I have to get the hang of it or hopefully have things pretty narrowed down. My problem is I eat A LOT of junk food and soda. I am addicted to Diet Coke and I eat snack food all day then maybe a meal at night... I'm going to cut the soda and snacks fir sure if not for the IC at least the healthy factor... I haven't had pelvic pain or anything like that yet. My symptoms are frequency (like as much as 4 times an hour) and burning. Pretty much like a constant uti. But then somtimes the burning goes away even when I didn't change my diet...:confused:

[Sera]

Hi Millie, I can attest that the IC diet has worked wonders for me. I did the elimination diet, so that I could find out exactly what foods cause my IC symptoms to flare up. It was so hard for me to give up so many things, but I realized it was very worth it when it helped alleviate much of my symptoms. Best of luck to you!

[VickiB]

Hi Millie and :welcome: to ICN! Glad to have you join us!

You know, whatever this IC is, I wonder if it isn't caused by a number of different factors? Like other conditions such as a heart attack for instance that could be caused by poor diet, brought on by stress, genetic defect, etc. That might explain why diet alone is so helpful to one person but not the next. Perhaps their's is aggravated by hormones or stress.

I took Elmiron for a couple years but then gave it up opting to control my symptoms through diet. (My insurance didn't cover the cost of Elmiron and it's spendy stuff!) Diet seems to be working well so far. For me, there is most definitely a relationship between what I eat & drink and whether my bladder is at peace.

Vicki