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Re: Pissed Off and Sad new
      #328598 - 04/21/08 01:31 PM

Unregistered




I sooo hear you! Forget greasy fried things, cheese or ice cream. What I wouldn't do for a spinach salad with wonderful fresh veggies and tuna fish on top AS A MEAL

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Re: I am so with you both! new
      #328609 - 04/21/08 04:15 PM
IslandBride5

Reged: 03/31/08
Posts: 28
Loc: Eugene, Oregon

Thank goodness we all have eachother!! I was sitting here today feeling fine. The weather outside is crappy but otherwise fine. And then BOOM! Out of nowhere my stomach starts to cramp and bloat. It won't allow me to use the restroom as I am IBS-C and so as I sit and sip on peppermint tea, I get really mad about this whole diagnosis. On any given day, out of the blue I can feel fine and then start feeling horrible. I am not newly diagnosed but new to 'discovering' how to help my body deal with this diagnosis. It is really hard.........

--------------------
Meet my sweet dog Marley!

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Re: I am so with you both! new
      #329180 - 04/30/08 10:19 PM
lauraads

Reged: 04/20/08
Posts: 5
Loc: Florida

Thank you, everyone! I hate that we are all suffering but it is a blessing to not be totally alone in it! What did we do before the internet? Jen, if I listed everything I couldn't eat you would probably lose your mind immediately. The rest of the ICer's know what I am talking about. When I used to be able to go to restaurants I would try to say, "I have food allergies" and then they would want to know to what. I would say, it's much easier for me to tell you what I CAN eat since that list is much smaller. I guess my frustration is the carb-food as the basis of every meal, fear of trapped gas and bloating from veggies and beans (a former staple of my IC diet), and now a perpetual yeast infection from eating so many carbs on this IBS diet (I've been being really restrictive trying to get my bad, new symptoms under control).

The following list of foods I ate with IC made me capable of creating a lot of great recipes. However, the whole IBS thing has totally lost me! I feel like a carb crazed person and hate it.

FRUITS: gala apples, any pears

SPICES, etc: olive oil/corn oil/canola oil, basil, parsley, thyme, garlic, peppercorns, cinnamon, maple syrup, honey, sugar, allspice

Veggies: Green beans, brocoli, spinach, squash/zucchini, and lettuces. Carrots and mushrooms in minimal quantities.

Starches: Most starches except I've built up an intolerance to white potato and white flour from overeating and can't do whole wheat with the IC. Can't seem to like sweet potato. I eat tons of stuff made from brown rice, a little white rice, quinoa, a little corn meal. I was eating red beans but couldn't do black beans.

Meat: Almost all whole meats like a piece of plain chicken, turkey, pork, eggs, or fish/shellfish except smoked meats and meats with stuff like sausage, proscuitto, etc.

Cheese: Cream cheese in small quantities, ricotta with low vinegar, and mozerella with no vinegar.

Nuts: cashews, pinenuts, almonds.

Drinks: milk, rice milk, pear juice, camomile, fennel, marshmallow, and who knows why - coca cola.

Fats: pure butter, oils as listed above.

If it isn't on this list, I really can't eat it. I also can't have vitamin supplements for B's or C's and have to be careful of fortified foods. I am really sensitive! But, I was living with it well, I thought, before the IBS. Had it down to a science. Then, I thought I could do this IBS thing and then comes the Yeast. I am totally lost!

However, I still thank you for listening, supporting, and sharing with me! It helps A LOT!

--------------------
Laura D in FL

Interstitial Cystitis diagnosed 1995 and IBS diagnosed 2008

www.art4ic.com

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Comparing the IC diet and the EFI approach new
      #329276 - 05/03/08 11:04 AM
Wordfiend

Reged: 05/03/08
Posts: 6
Loc: Colorado

Laura,

I am NOT an expert on this, but I've been living with the EFI approach for over a year now, and I do have some thoughts on how the EFI approach can be adapted to your existing IC restrictions. You may also want to consult a dietitian or nutritionist for a while (I did so, and it helped a little, though I often felt like I was educating her, rather than vice versa, as she was not familiar with IBS). Your comments are below, in quotation marks. My responses are outside the quotation marks.

FRUITS: "gala apples, any pears" This one is easy: peel them and don't eat the cores (I know lots of people do). Same with grapes, and most other fruits & veggies. Also fruit smoothies are fabulous! I still peel them first, just because I don't like little bits of skin. Note: raspberries will need to be sieved after pureeing to get rid of the seeds, which will irritate, but you still get a really yummy fresh raspberry flavour. I also use canned fruits a lot, as they are already cooked, which brings them closer to "safe" for me. (Yeah canned mango for mango smoothies!)

SPICES, etc: "olive oil/corn oil/canola oil, basil, parsley, thyme, garlic, peppercorns, cinnamon, maple syrup, honey, sugar, allspice" The spices shouldn't be a problem. Using oil in very small quantities, and when your meal is balanced with lots of soluble fiber (SF), should be tolerable. For fresh herbs, mince them finely before adding to your meal. Cooked, rather than raw herbs, may also be easier to digest. Until your yeast problem clears up, reduce your sugars.

Veggies: "Green beans, brocoli, spinach, squash/zucchini, and lettuces." Squash and peeled zuchinni should be fine. You may still be able to eat the rest, with the following caveats: cooked, not raw; peeled; chopped or diced; eaten in small quantities with starchy high-SF (Soluble Fiber) food like white rice or white bread.
"Carrots and mushrooms in minimal quantities." These are quite starchy with low insoluble fiber (IF), so they would ordinarily be good on the EFI approach, but if they tend to irritate YOU, then cut them out at least for a while.

Starches: "can't do whole wheat with the IC." - that's fine because whole wheat is also a no-no on the EFI approach. "I eat tons of stuff made from brown rice," YIPES. All that insoluble fiber will irritate your sensitive bowels. Switch to white rice. "a little white rice," Good; make this one of your staples. "quinoa, a little corn meal." Not sure about the quinoa or cornmeal. Anyone else know this one?
"I was eating red beans but couldn't do black beans." The tough skin on beans is insoluble fiber. You could try pureeing them (as in home-made refried beans).

Meat: "Almost all whole meats like a piece of plain chicken, turkey, pork, eggs, or fish/shellfish except smoked meats and meats with stuff like sausage, proscuitto, etc." These are compatible with the EFI approach. But HOW YOU COOK THEM also makes a difference; opt for steamed, broiled, grilled, rather than fried or (even worse) deep-fried. And avoid red meat (beef, rack of lamb, dark chicken or turkey). Smoked and cured meats are often irritants/inflamatory, so best to avoid if you have any kind of autoimmune responses or migraine anyway.

Cheese: "Cream cheese in small quantities, ricotta with low vinegar, and mozerella with no vinegar." You may be able to reintroduce some of these - in small quantities - but try eliminating them for a while, or substitute non-cow sources, such as rice or soy cheese.

Nuts: "cashews, pinenuts, almonds." Nuts are high in fat, so can be an IBS irritant for that reason, especially if eaten on their own out of the bag or jar. However, nuts as part of a recipe MAY be tolerable and are a good source of Omega-3 fatty acid (e.g., a few slivered almonds with your chicken and rice). Again, you should probably go without them for a while, then reintroduce when you feel stable.

Drinks: "milk, rice milk, pear juice, camomile, fennel, marshmallow, and who knows why - coca cola." Rice mlk, juices, and herbal teas are still OK with the EFI approach. The cola is an interesting one. Are you saying that you can drink it without becoming symptomatic? Cola is a strong irritant, not just for your bowel, but for your teeth and stomach. Until you are pain-free, I would recommend cutting it out.

Fats: "pure butter, oils as listed above." Again - best to avoid, but when necessary, keep it to small amounts and balance your meal with tummy-friendly foods.

As you will undoubtedly have learned by now, the early weeks and months are the hardest as you try first to stabilize (which, to me, means I have one or fewer "attacks" per week, and can identify what caused it so I really know that it's my own danged fault!), then learn how to customize your diet for your own personal sensitivities. Customization is the hardest part, as sometimes the symptoms are delayed (e.g., you may not realize that the symptoms you experience in the morning are caused by the alcohol you had the night before, or the cola you had the afternoon before).

One more thought: carb need not = sugar. I realize sugar is a big culprit in yeast infections. So, while you're getting the yeast thing in order, cut the refined sugar. Fruit and veggie carbs are not, to my knowledge, so bad. And sourdough bread, which is a "goody" on the EFI approach, will probably actually help as it is made without yeast.

Good luck - you have a "double whammy" to cope with.

Wordfiend

--------------------
Whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things.


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Re: I am so with you both! new
      #329300 - 05/04/08 09:16 AM
Sharon Mello

Reged: 08/23/04
Posts: 28
Loc: 25 miles from Yosemite National Park in Ca.

Laura - I also was dx'd w/IC and the doc couldn't believe I used Jamaica (pronounced Ha-mike-ah) which is available in Mexican grocery stores in produce section in plastic bags. It's a particular hibiscus flower from Mexico that the native people use for all kinds of medicinal reasons. they make a tea w/it... 1 cup Jamaica (don't get this confused with Jicama, the vegetable), 30 cups water and sweetened to taste w/whatever you can tolerate. Put Jamaica in cheesecloth and tie so you don't have to strain the tea. Drink hot or cold. This cured my IC. Of course, it comes back if I get a bladder infection, but the tea usually makes the cramps and having to pee all the time go away. The doctor thought I was nuts when I brought him the recipe and the cup of Jamaica. Guess he'd rather do all those disgusting tests and make lots of money doing it!!! Sorry if I sound down on docs, but right now I am. Hope this helps.

Sharon

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Re: I am so with you both! new
      #329303 - 05/04/08 09:40 AM
Fen

Reged: 03/01/08
Posts: 574
Loc: Central NY

Sharon, I'm not trying to sound rude or start an argument, but Interstitial Cystitis is a lifelong condition without a cure. It does not come and go. I'm not knocking herbal remedies and I'm sure you've had luck curing UTI's or bladder infections (also known as "cystitis) this way, but there is no cure for IC.

--------------------
IBS-C

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Re: My exact feelings new
      #329309 - 05/04/08 11:17 AM
Candy2

Reged: 04/09/08
Posts: 164


Jordy,

I know exactly how you feel! Could you have suggested a place where they serve at least one thing you can eat? In most workplaces, there is a stack of menus for various eateries.

I can really relate to not being able to eat your favorite foods anymore. I want to get a rich chocolate milkshake, a personal pan pizza from Pizza Hut, some fabulous chocolate cake and macaroni and cheese. I would stay near a toilet day and night. It just might be worth it!!

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Re: IC is what they call it when they don't know what it is (someltimes) new
      #329332 - 05/04/08 04:08 PM
Sharon Mello

Reged: 08/23/04
Posts: 28
Loc: 25 miles from Yosemite National Park in Ca.

Fen - look at my subject line--my urologist didn't know what was wrong w/me so he called it IC or stress incontinence or whatever you like. I just know that the Jamaica did it for me and I'm telling you, I was miserable. I would come home crying. It felt like there were a dozen gremlins with long sharp fingernails pulling my bladder and pushing on it so I'd have to pee every 3 minutes. Is that not IC???? Please enlighten me.
Sharon

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Re: Fen: Pls read this from Webmd.com new
      #329333 - 05/04/08 04:15 PM
Sharon Mello

Reged: 08/23/04
Posts: 28
Loc: 25 miles from Yosemite National Park in Ca.

What is IC / PBS?
Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. The symptoms vary from case to case and even in the same individual. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate (urgency), a frequent need to urinate (frequency), or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties. Women's symptoms often get worse during menstruation. They may sometimes experience pain with vaginal intercourse.

Because IC varies so much in symptoms and severity, most researchers believe that it is not one, but several diseases. In recent years, scientists have started to use the term painful bladder syndrome (PBS) to describe cases with painful urinary symptoms that may not meet the strictest definition of IC. The term IC / PBS includes all cases of urinary pain that can't be attributed to other causes, such as infection or urinary stones. The term interstitial cystitis, or IC, is used alone when describing cases that meet all of the IC criteria established by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).


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Re: Fen: Pls read on... new
      #329336 - 05/04/08 04:27 PM
Sharon Mello

Reged: 08/23/04
Posts: 28
Loc: 25 miles from Yosemite National Park in Ca.

Future Diagnostic Tools
Researchers are investigating and validating some promising biomarkers such as anti-proliferative factor (APF), some cytokines, and other growth factors. These might provide more reliable diagnostic markers for IC and lead to more focused treatment for the disease.

What are the treatments for IC / PBS?
Scientists have not yet found a cure for IC / PBS, nor can they predict who will respond best to which treatment. Symptoms may disappear without explanation or coincide with an event such as a change in diet or treatment. Even when symptoms disappear, they may return after days, weeks, months, or years. Scientists do not know why.

Because the causes of IC / PBS are unknown, current treatments are aimed at relieving symptoms. Many people are helped for variable periods by one or a combination of the treatments. As researchers learn more about IC / PBS, the list of potential treatments will change, so patients should discuss their options with a doctor.

How is IC / PBS diagnosed?
Because symptoms are similar to those of other disorders of the urinary bladder and because there is no definitive test to identify IC / PBS, doctors must rule out other treatable conditions before considering a diagnosis of IC / PBS. The most common of these diseases in both genders are urinary tract infections and bladder cancer. IC / PBS is not associated with any increased risk in developing cancer. In men, common diseases include chronic prostatitis or chronic pelvic pain syndrome.

The diagnosis of IC / PBS in the general population is based on

presence of pain related to the bladder, usually accompanied by frequency and urgency
absence of other diseases that could cause the symptoms
Diagnostic tests that help in ruling out other diseases include urinalysis, urine culture, cystoscopy, biopsy of the bladder wall, distention of the bladder under anesthesia, urine cytology, and laboratory examination of prostate secretions.

Urinalysis and Urine Culture
Examining urine under a microscope and culturing the urine can detect and identify the primary organisms that are known to infect the urinary tract and that may cause symptoms similar to IC / PBS. A urine sample is obtained either by catheterization or by the "clean catch" method. For a clean catch, the patient washes the genital area before collecting urine "midstream" in a sterile container. White and red blood cells and bacteria in the urine may indicate an infection of the urinary tract, which can be treated with an antibiotic. If urine is sterile for weeks or months while symptoms persist, the doctor may consider a diagnosis of IC / PBS.

What causes IC?
Some of the symptoms of IC / PBS resemble those of bacterial infection, but medical tests reveal no organisms in the urine of patients with IC / PBS. Furthermore, patients with IC / PBS do not respond to antibiotic therapy. Researchers are working to understand the causes of IC / PBS and to find effective treatments.

In recent years, researchers have isolated a substance found almost exclusively in the urine of people with interstitial cystitis. They have named the substance antiproliferative factor, or APF, because it appears to block the normal growth of the cells that line the inside wall of the bladder. Researchers anticipate that learning more about APF will lead to a greater understanding of the causes of IC and to possible treatments.

Researchers are beginning to explore the possibility that heredity may play a part in some forms of IC. In a few cases, IC has affected a mother and a daughter or two sisters, but it does not commonly run in families.

Whoever told you that there is no cure (permanently, that is) doesn't know about Jamaica. This stuff will sometimes keep me free of IC for years at a time so I always keep it on hand and make the tea whenever I need it. My last episode was 9 years ago until last year. Granted, everyone's different, but it's worth a try if you're in pain and miserable.

BTW, I'm from NJ, so don't try that East Coast stuff on me LOL!!!
Sharon

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