New to IC Land

Hi Gill, thanks for your response. I just want to point out, per my GYN who also specializes in IC, she was the one who first told me about the foods to avoid...as for veggies, there are good and there are bad. I hadn't heard that cooking them changes the ph balance but I suppose anything is possible. If you like I can dig up the hand outs she gave me and list them for you of good/bad veggies and other foods and even beverages. I mean, even wine is on the list of things to avoid because of the grapes and nitrates. So now if I want a glass of wine I either take my chances or send my husband out to get a bottle of organic wine without the nitrates. For me, it is a small price to pay to not have the horrible pain, cramping, burning and everything else that happens when I'm having a bad flare. Before I began to change my diet I was having terrible pain and cramping every single day. It began in September when I was in NY and I thought it was a bladder infection. So now, I can have a couple of decent days where I can function as normally as possible...however, just when you think you've beaten it, you know that you haven't. It can prove quite frustrating and even depressing. Well, that's about all for now. Take care.

I would very much appreciate the details on the various foods you were advised to avoid and which are best to eat. As you said if it avoids all those awful symptoms which come with an infection its certainly worth trying. I have just about run out of ideas so any suggestions would be helpful.

I hope you continue to avoid the infections and look forward to receiving the information from you.

Regards and thanks

Gill

Hi again. Well, I will give you the foods and beverages I have listed and that work well for me to avoid. Besides wine, coffee is the worst because its caffeinated. There may be milder coffees that won't bother you as much, that is what I've found. But if you like espresso and strong coffees like I do, you will probably suffer if you drink it. I can't drink that weak stuff. Stay away from soda which I don't touch anyway. They say the diet variety is the worst because of all the artificial sweeteners and chemicals. Anything citrusy is not good, i.e.,grapefruit, pineapple, orange juice...even cranberry. You can add to that lemon and strawberry. This goes for eating them as fruits, too. Good fruits are usually things like pears, apricots, bananas, watermelon and blueberries.  I do well on those. Also, spicy foods are out. Anything really spicy can cause a bad flare. The worst veggie is tomato. I'm Italian so that's like taking away half of what I like to cook with, haha. But yeah, tomatoes are unfortunately not your friend when you have IC. Other bad veggies to avoid are anything fermented like pickles or sauerkraut. Even kimchi can cause you pain. Also on the top of the list is something I use frequently, being a vegetarian...soy. Can cause some nasty flares. If you must use soy at all, make sure it's the non-GMO kind. The regular soy is filled with pesticides...at least here in the states it is. Other veggies, mostly greens like spinach, kale and green beans I find to be ok. I have had no issues with squash, zucchini and only soups that are not tomato or cream based. Like lentil...that's a good soup for me for some reason. Hummus is ok, too. Stay away from processed foods and fast foods, too. Yogurt is supposed to be bad but since I don't do much dairy I still try to have yogurt sometimes. Also, other bad items are...sadly...chocolate! My favorite. I have a whole bar of dark chocolate in the pantry that my daughter got for me before she knew about it giving me trouble, so there it sits...also, most condiments are on the avoid list. Things like ketchup, soy sauce, chili, vinegar, many kinds of salad dressings. Indian food can be bad, too. Anyway, that's most of it. I use things like garlic, a little pink Himalayan salt and black pepper for seasoning. I still like spices like cumin,ginger, paprika and curry but I have to use them sparingly, I don't think anyone can ever realistically not want to have some of these foods every once in awhile but they will probably pay the price. The only other thing to point out is my doctor told me that these flares are not to be confused with urinary tract infections and that they are not infections. They are flares probably caused by the aggravation of the bladder wall by irritation. They also say stress can cause a flare...and who doesn't have enough stress to beat the band, especially with all of the major crap going on in America. Also, keep well hydrated with water. Ok, I've written a book...I hope this info helps you!

My name is Michelle. I'm waiting on a urine test to see if there is white cells which the doctor feels it can mean I have inflammation of the urethra. I don't know if I have faith in the doctors assessment. He wanted to do a urethrascopy where they go up the urethra and I said no because of pain. My question if you can answer is, how does one know they have I.C? Most Urologists want me to take a Cystoscope. I had a transvaginal ultrasound there was nothing wrong with my bladder. I think these Urologist just want to run this Cystoscope test to get paid for tests. Yesterday I had excruciating pain which felt it radiated from my urethra to my genital area. I also avoid foods that cause flare up. However, don't no if I have I.C or inflammation in my urethra. When I get pain a couple of Tylenol helps. I just saw a Urogynecologist and he's the one who wanted to do a urethrascopy. My urine test should be back Friday. Have you had a Cystoscope test and does it hurt? Frustrated and scared. Your advice would be appreciated

Hi Michelle, I haven't had a urethrascopy or a cystoscope for that matter. I will have to look up just how it differs from a cystoscope. Your doc is looking for white cells which could indicate an infection. Why can't he just test the urine? This all started for me in September. I was out of town and by the time I got back I was in so much pain and my doc's office was closed so I went to the emergency room. They did a urine sample and told me I had bacteria in the urine and therefore I had a bladder infection.They gave me some antibiotics and that was that. The next week the pain was back. And it was bad just about every single day. I made an appointment with a gyn who ordered the transvag ultrasound as well as a pelvic ultrasound. Both were clear. She looked up what the docs at the hospital had written and saw that my bacterial count was only 10,000 units when a true full blown bladder infection is more like 100,000 units. She kept saying IC to me and spoke to me about it while she was examining me, asking my symptoms. She gave me a handout of foods to avoid to see if that might help. I did a lot of research and also began taking the aloe Vera capsules. Aloe Vera comforts and soothes an irritated bladderI know about the pain you feel in the urethra area to the genital area. I'll go one step further and say it has given me very bad hemorrhoids, bleeding even, from the pressure I was feeling. I bought a cream/salve called Emuaid Maxx. I read where it helped people with issues like mine and it has honestly been a godsend. I try to drink a full glass of filtered water every hour, I know that keeping well hydrated helps. Nowadays, I seem to have somewhat of a better handle on my symptoms so the pain is not as relentless as it's been. I can actually go a day or two without bad pain but I do get it back. It always comes back but a good amount of the time it isn't as bad as it was in the first two or three months of this. I have been offered treatments such as bladder installation where they put a sort of catheter up to the bladder and release medicines which soothe the bladder wall and end a bad flare. Then she tells me if it helps I have to do it seven more times each week. I looked at her like she had three heads. Don't get me wrong..I know these treatments do help some people but the problem isn't so cut and dry. The reality is they don't know that much about IC and what works for some does not work for others. The medications they offer, an antidepressant called amittryptaline and another med called elmiron (spelling may be wrong) I will not take because I don't care for the side effects. Incidentally, a cystoscope is supposed to be the most definitive way of telling if you've got IC. By the way, you asked if it hurt.. with all of these procedures/treatments you are anesthestitized beforehand...I am not sure quite how...if it is local anesthetic or what. But none of this makes me reach for my phone to ask for them.  The docs should be able to differentiate between your having IC or something like overactive bladder. They are specialists so they should be able to figure out something. There is no cure for IC so it's catch as catch can for many...unless the doc happens to specialize in IC and inhesr there's not many. I hope you get a good report from the urethra test. Do you get pelvic pain the way I do? Does it sometimes reach around to your back? They say this may be an autoimmune illness, as even stress can bring on a flair. I had taken many antibiotics in the past for chronic sinus infections. I also used things like artificial sweeteners..these are things that ruin gut health and keep you sick. Whatever else you do, take good supplements like bone broth and turmeric and also a good pre and probiotic. Eat well and make sure you stay clear of junk like sugars and processed foods. I'm sure you know all about that. Well, I do wish you well.  I don't have any real answers  but sometimes we can learn from each other. Best wishes.