newly diagnosed

[hollybarry]

Hi Everyone,
My name is Holly and I was officially diagnosed with IC yesterday. I had a cysto with hydro yesterday mainly to confirm what I already knew. I have been suffering with this since summer 2004. It all started when I was on weight watchers spring 2004. I have always had issues with frequency (since I was a child) but not pain. When I was on weight watchers, I ate alot of tomatoes, citrus fruits, whole wheat bread and so on. I got a UTI and everything exploded from there. I am not longer on weight watchers, have gained back part of the weight and am now trying to figure out what I can eat. I found this site several months ago when I first heard about IC and have been watching symptons and flareups so the diag was not unexpected. My main nonhealth problem is cooking. I am married with 3 children. My husband is a tomato-aholic. Everything have to have tomatoes, soy sauce or vinegar in it. So I guess I have to learn to cook two meals which is a pain. I know I will find a way to manage but being able to come here and talk and listen may be very helpful. My husband is wonderful but he has a hard time understanding what I am going thru. I am 5'2" at 190 lbs. He is 5'10" at 145 lbs. So he does not have a clue as to what it is like to have eating problems. Anyway, thanks for listening. I am somewhat new to message boards so please forgive me if I do anything incorrectly.

Thanks,
Holly

[vm]

:welcome: So glad you found us, Holly. :) What kind of treatments is your doctor proposing for you?

[Ginny]

Right now in the plant stores you can find low acid tomato plants to grow. They are a very light orange color. You might want to try them to see if you can get away with it.

Ginny

[lindy lou]

It does take a while to figure out the food, but it is well worth the relief you should have. When I fix meals that traditionally have a tomato base, I take my portion of the meat out before adding the tomato sauce, vinegar or soy. I make up big batches of pesto sauce and put it in the freezer to take out and add to pasta dishes instead of the tomato sauce. You can also buy pesto, although not as good, or alfredo if you like it. I make "white" pizza for myself with a garlic-butter-pesto sauce and it really tastes good. I tell my husband that if he wants a tomato-based dish that I don't cook any more, he will have to order it when we go out or ask his mother to cook it. I refuse to cook dishes that I cannot eat or easily modify for me. Good luck with your treatments and be patient.

Linda

[Babs RN]

Welcome to the ICN Holly!

Hugs,
Barb :grouphug:

[trytosmile]

Welcome to the gang Holly ...

Ah tomatoes, I miss them sooooooooooo much. I love them and yes would eat everyday if I could. Miss my homemade tomatoe macaroni soup. I have heard there is a yellow tomatoe out there that is lower in acid, but I am unable to find in Canada. Can't even find plants to grow some.

Yes, the diet is an adjustment. Pretty bland but given some time and some creative afternoons in the kitchen you will find a diet full of a variety of IC friendly foods to eat.

You mentioned you are aware of the website and wondering if you have seen the friendly vs non-friendly food lists. It is a great tool and I have a copy in my purse for when shopping. I was diagnosed years ago and to this day I'm still learning. Funny how things can change.

Again, welcome to the group. Great bunch of people here. Have been a life savour for me !

[Gegatso]

Hi Holly,
Welcome! You are in the right place for sure. Best group of individuals I have come across on the whole internet! I'm a guy and have a really messed-up story which you can read at http://www.ic-network.com/forum/showthread.php?t=14429 (obviously just look for my posts for the updates and all that stuff..pretty easy. In short, I'm still not certain of my diagnoses...conflicting things from the doctors. Odd thing about the food, though...I tried wine last night for the first time in at least 6 months and this morning I've been having "general pain" (not burning) when in the bathroom. Very strange for a "guy with IC" whi has been able to drink cranberry juice, coffee, all sodas, and take lots of vitamin C every day (ascorbic acid, not Ester C!).
Oh well...this string of posts is about you, not me. There are a lot of people on here who are *genuinely* concerned and this is a great community of people. The site is BIG. Read all the newbie stuff and take to heart the diet info. In my case it seemed diet was no problem but I'm beginning to wonder now. Maybe we all have different "trigger" foods - many in the same grouping, but you *might* be able to eat or drink certain things that a high percentage of IC folks cannot.
You never know. Be patient. Do not throw in the towel. Post on here if you feel like talking (or venting!). Lastly, a great book that I recently finished that all of us on here should read: The Anatomy of Hope : How People Prevail in the Face of Illness by Jerome Groopman. Hope all of this helps some (and was not too long!)

[ICNDonna]

:welcome: to the IC Network. I'm very glad you found us.

At first it was very hard for me to cook without tomatoes, but I have learned to cook pretty much without them. I put fresh tomatoes on the table for other members of my family, but don't use them much in cooking.

Donna

[hollybarry]

Thanks, everyone, for the encouragement. Any good recipes would greatly be appreciated. At this time, I have found the good vs bad food list and am working at eliminating bad foods. I usually make white pizza for me and tomato for the family. But alfredo can get old. I just started taking Elmiron yesterday so no idea yet if it is going to work for me. That is all that I am on at the moment. I have tried the Prelief but I did not find that it did anything for me. I live in NC so I should be able to find the yellow tomatoes. I did try low acid OJ but it just did not taste the same. Right now, I primarily drink water, milk and pear juice. I have order the cookbook by Bev L (I collect cookbooks so this I had to buy) and hope to find some good recipes. I am sure that I will adjust but I am a chocoholic and I love my morning coffee and these will be the hardest to give up. Anyway, thanks for the advice and encouragement. I sure I will be at this site very often.

Holly

[Portia17]

holly

I love chocolate too but I now I eat carob. Looks like chocolate and kind of tastes like it and I got used to it and I love it and eat it a lot. I get at the health food stores or you can order it on line at www.ichelp.org. I think it is cheaper if you go to the health food store.

Also, I drink PERO instant coffee from the health food store has no caffeine in it and very low or no acid

Hope this helps

[Sarojini]

:welcome: Holly!!

I love tomato too. I can eat some with a product called Prelief, which takes acid out of food. You can usually find it in the antacid aisle, by the Beano. If I take some tablets before eating the tomato stuff, I can get away with cautious quantities sometimes. However, I too have become a master at making white pizza... mine is just crust with cheese on it, but I like it that way anyway. :)

Also, my husband and I are both 5'5", 155 lbs. Except he's SUPPOSED to weigh that and I ought to be 20 lbs less!! So I understand the desire to lose weight... but eating is just so darn FUN :(

[SharonA]

:welcome: Holly...So glad you are here. I am so sorry about the diagnosis. IC is not something anyone would want, but there is hope and there are alot of treatments and meds that can help you live a pretty normal life style.

I hope Bev's cookbook is helpful. It is difficult to have to prepare 2 separate meals, but doable. I think Donna's suggestion about serving sliced tomatoes might be worth a try for you. That should satisify the tomato lover's taste buds.

[hollybarry]

Thanks for all of the great info. I have heard of carob before but i am not sure exactly what it is. i will try it along with the PERO. As for the tomato slices, my husband is very picky. He will only eat fresh tomato if it is straight off of the vine during the summer. He does not like tomatoes sold in grocery stores. I cook with lots of canned tomatoes. So i have accepted the fact that i will be making two meals.

Holly

[DanaW]

Welcome Holly!! :) :welcome:

It must be true that some of us have different trigger foods. My worst is coffee and chocolate. I can sometimes eat tomatoey things....cheese is a no-no for me though...... I wouldn't even touch orange juice!! lol

Holly,
You will love the support here. Everyone is soooo genuine and caring. I thank god that I found it when I did. :woohoo: :woohoo:

Dana W.

[PEANUT61]

I Was Somewhat Diagnosed But My Ob/gyn Who Found It After Uti"s Wants To Do A Test Where He Injects Potassium Into My Bladder. If It Hurts I'm Ic. Has Anyone Had This Test? I'm Not Sure If I Need An Urologist?

[Janisu7]

This is the info that I found about the "Potassium Test" from the
"International Interstitial Cystitis Patient Network Foundation"

Painful Bladder Syndrome / Interstitial Cystitis
Diagnosis and Evaluation Guidelines 2005

Potassium test
The potassium test which was studied for some time asa possible diagnostic tool for IC is now no longer considered to be sufficiently reliable and is therefore not internationally recommended as part of a diagnostic algorithm. This test is currently being studied as a possible method of selecting patients who may respond positively to treatment aimed at replenishing the lining of the bladder.

I decided that until they have better treatment options I'm not going to prove to them I have enough pain to qualify for the label of IC or PBS.

[Felicitas]

Thanks for all the comments. I was diagnosed with IC just 3 days ago and have been avoiding acidic foods and drinks. A very difficult thing to do, as I love citrus fruit, spicy foods, corned beef, bacon and chocolate! I am taking Elmiron [too expensive] and Detral LA.
Hopefully the diet will give me the most relief, and I will be able to come off the medications.
Felicitas

[Annie2]

Peanut, I am one of several here who was diagnosed with the Potassium Sensitivity Test. While it isn't fun, it certainly is not that bad. Though many doctors do prefer to do a cystoscopy with hyrdrodistention for DX, more and more doctors are now using the Potassium Sensitivity Test as it is far less invasive, does not require anesthesia and there is little to no recovery time involved. It only takes a few minutes in the doctor's office to perform the test and you are quickly on your way home.

You can read about this test in the Patient Handbook on this website. You will also find a description of this in the book The Interstitial Cystitis Survival Guide by Robert Moldwin, MD. I highly recommend you pick up a copy of this book as it is an excellent resource. It is full of descriptions of IC, tests used to Dx IC, descriptions of the various meds and treatments for IC, etc. Many of us here find we use it constantly. It helps to read as much as possible about IC and inform yourself so you can discuss this disease, tests, treatments, etc with your DR and make informed choices about these tests and treatments. You can find the book here in the ICN Shop. It is also available at Amazon and other Internet shops and is found in some bookstores, too.

Annie

[theoutlaw77]

Peanut61- Hi!! I was given my final dx with the potassium sensitivity test- done by a gyn. It did burn REALLY bad, but that is how I knew for sure that I had IC. My doctor did put in the "rescue solution" after the test. It helped, but I did have some mild buring for the day. After that, it was back to my normal IC pain. I am treated by a gyn for my IC. All of the uros in my area seem to be idiots, so I found a gyn in my area who treats IC. He is super nice. I about give up on uros!!!

[Amyinagony]

:welcome: Holly,
Glad you found this support group. It's the BEST!! :)
Give Elmiron time, as it can take 6mos or longer to work. It took 9mos for it to work for me. As for the Prelief, that can work too, but for me I had to get my IC under control more (give my raw bladder time to heal up) before even eating any acidic foods (even with Prelief). My MD had me include Prelief as a routine medication taken daily. I took 2tabs 4X/day. This was while I was strict on the diet. When my IC was under control, I then took 2 Prelief just before consuming a little tomato sauce (1tbsp-on some cheese ravioli). It bothered me some. The next time I took 3tabs and used the same amount of tomato sauce. That worked well for me.

Outlaw...just like you, I have found some of the Uro's in my area to be idiots and none of them knew enough about IC. I also have a GYN treating my IC. I just love her!!! :bow:

Good luck Peanut and Holly!! :grouphug:

[theoutlaw77]

These uros really need to get with it and go to some seminars or something!!

[Portia17]

Outlaw

You Know What Is Sad ... Someone Just Told Me My Uro's Wife Has I.c. And My Uro Has No Bedside Manner. I Wonder If He Treats Her As Bas As Well

[hollybarry]

I have felt ok for the past few days since my hydro. I am still waking up alot during the night so am trying to figure out what is causing that. I am just having a hard time following the diet because my family does not want to eat what I eat. They like lots of ketchups (my hubby considers this a necessity) and salad dressing. I am sure I will figure things out, it will just take time.

Holly