Thread: newly diagnosed
04-12-2005, 02:47 AM #1
- Join Date
- Apr 2005
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.
04-12-2005, 03:15 AM #2
So glad you found us, Holly. What kind of treatments is your doctor proposing for you?Kim
Diagnosed August 2001
Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)
Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)
My IC story: http://www.ic-network.com/patientstories/kim.html It's very outdated now. I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.
“We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl
“You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy
04-12-2005, 03:23 AM #3
- Join Date
- Mar 2000
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.
04-12-2005, 03:46 AM #4
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.
04-12-2005, 04:07 AM #5
- Join Date
- Mar 2004
- Viera, Florida
Welcome to the ICN Holly!
Barb(Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)
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"Spirit is an invisible force made visible in all of life"--Maya Angelou
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04-12-2005, 04:14 AM #6
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 !Jen ...
04-12-2005, 04:19 AM #7
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!)
04-12-2005, 06:30 AM #8
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.
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Anyone who says something is foolproof hasn't met a determined fool
04-12-2005, 08:03 AM #9
- Join Date
- Apr 2005
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.
04-12-2005, 08:10 AM #10
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 helpsNEW YORK YANKEES ROCK THE HOUSE. 26 WORLD SERIES CHAMPIONSHIPS, THE MOST EVER\
GO YANKEES :woohoo: :woohoo:
04-12-2005, 08:45 AM #11
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****
*Diagnosed with severe IC in 2004
*Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
*Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
*Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).
**I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
04-12-2005, 09:14 AM #12
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.Sharon
Shopping??? Did someone mention shopping? I'll get my hat... ;-)
Where I can be found most days.
If not there, then here
Link to the ICN Patient Handbook:
Link to the IC Diet:
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
04-12-2005, 03:28 PM #13
- Join Date
- Apr 2005
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.
04-12-2005, 06:04 PM #14
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
You will love the support here. Everyone is soooo genuine and caring. I thank god that I found it when I did. :woohoo: :woohoo:
"Don't quit when the tide is lowest, For it's just about to turn; Don't quit over doubts and questions, For there's something you may learn."
04-16-2005, 12:53 PM #15
- Join Date
- Apr 2005
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?
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