10-22-2004, 11:30 AM #1
Just got diagnosed...Now What? Help!
Hello out there. I was just diagnosed this week and I am lost. My doctor gave me a 15 page book and said here ya go....What am I suppose to do? What types of foods do I follow? Can someone or anyone help me? I want to be on the right track...as well as making some new friends who have the same problem and can understand me....
I am up all night tossing and turning feeling like i have to go all of the time. I can't sleep on my sides, only on my stomach. It's been to the point that i was very close to urinating myself. I'm embarrassed. I always check to see about where the closest bathroom is at a restuarant. Also i'm about to get depends to wear at night so i can get a good night's rest. I feel uncomfortable. I've been through 4 doctors and finally my urologist pin-pointed the problem. He just told me we will start off with a diet and fluid category. If it doens't work then perhaps medicine. Does the diet actually work?
Thanks a BUNCH :thumbsup:
Last edited by ambermac13; 10-22-2004 at 02:57 PM.
10-22-2004, 12:14 PM #2
to the IC Network. You'll find a lot of information and support here. I suggest you read the information in the Patient Handbook at http://www.ic-network.com/handbook/ You'll find information there about diet --- I suggest you read that portion first since diet can have a huge impact on how you feel.
There are also two books I think are extremely helpful. One is "The Interstitial Cystitis Survival Guide," by Robert Moldwin, M.D. It's written so it's very easily understood and well indexed so it's easy to find things. Plus it's very inexpensive. The second book is titled, "A Taste Of The Good Life," and was written by IC patient Bev Laumann. Both books are available at http://www.ic-network.com/shop/
And when you have questions, feel free to post them. We aren't physicians and can't give medical advice, but are happy to share our own personal experiences.
Warm welcoming hugs,
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
10-22-2004, 04:32 PM #3
- Join Date
- Oct 2004
- Seattle, WA
Glad you found these boards! You will find a very warm and helpful community here. Plus, looking through these boards and reading the online guide will give you tons of helpful information. I have experienced the same symptoms you mention and I sure know what you mean by spotting every restroom available and the fear of not getting to one in time. Feel free to ask any question you have. Some types of questions have boards devoted to them as topics, but we pretty much answer questions no matter where they are posted.
The diet is very helpful and starting there is a very good way to finding some relief in a pretty short period of time. Of course, it is only a guide, each of us has to figure out what we can and can't eat individually. Start by increasing the amount of water you are drinking, pick up some Prelief (in drugstores, is otc and usually in the area of Beano and other products aimed at reducing acid in the urine) or try Tums.
You may already be trying uristat/pyridium which is commonly given for uti's and can be bought otc. If not, you might ask your doctor if you can try it. I'd also suggest trying heat or cold on the areas that hurt, or even both alternating. (I am assuming that you have some pain, if you don't, just ignore this advice.) Personally, I find cold helpful in reducing the feelings of urgency/frequency.
You didn't mention or I missed, when you are scheduled to return to your doctor. I think it is helpful to learn as much as you can and become your own advocate with your doctor. I wish I could tell you a concrete guide to what will give you the relief you need, but at this point, there is no one treatment that works on everyone.
I hope you find some relief soon!
10-23-2004, 02:28 AM #4
So glad you found us so quickly after your diagnosis.
The diet was very, very helpful to me. My doctor kind of poo-pooed it iintially, so it is nice to hear of a uro who believes in it.
For me, I needed the medication to have big relief. My doctor moved slowly, too, but I was glad in some ways that he did. I wanted to be on the least amount of meds possible --- ended up on 4 for IC.
The more you read the messages here and read through that wonderful ICN Patient Handbook you will feel more and more empowered to get better! The majority of us do end up finding treatments that help us feel better much of the time. Don't lose hope, OK?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
10-23-2004, 02:58 AM #5
Hello, and !
It's never good to be diagnosed with a chronic condition, and I'm sorry that you have been.
I wish I had some good advice for you, but I'm new to all of this myself (just diagnosed on the 7th), so I'm still learning.
What I can say is that you've found an AWESOME source of support and information by finding this site!!The best way to cheer yourself is to cheer somebody else up. -- Mark Twain
In three words I can sum up everything I've learned about life: it goes on. -- Robert Frost
10-23-2004, 05:07 AM #6
- Join Date
- Sep 2004
..We all understand what you are going through. This board is a great sorce of information and support....After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!
10-23-2004, 05:40 AM #7Medicine taken daily or as needed:
1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
2. MS.Cotin 100mg 3x daily
3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
4. Fentanyl 100 mg Change every 48hrs.
5. Gentamicin 80mg install after each rescue treatment
5 Leviquin 500mg self start as needed.
6. Klonopin 1 or 2 daily as needed.
7. Prosed/DS as 1 every 6hrs as needed.
I have IC, but IC doesn't have me anymore!
10-23-2004, 07:47 AM #8
Hi ambermac13, and welcome to ICN!
Except for the 15 page booklet, my Uro did pretty much the same thing, telling me to read all I can on IC. He gave me this web site address, and that may have been the best information he could've offered me. Take your time and learn all you can about this nasty thing called IC!
I agree, the diet is a good place to start. It doesn't work the same for everyone, but for me, it was like a miracle! It takes a bit of detective work to figure out which foods are the trouble-makers, but if it works, it's way worth the effort!
Take your time, read up, and don't feel shy about posting any questions or concerns you might have. Lots of great people here who'll share their thoughts & experiences, as well as offer a shoulder to lean on when the going gets tough!
Hang in there! Hopefully better days are right around the corner for you!
10-24-2004, 09:11 AM #9
Although the diet helps a lot I don't know many docs that would only treat IC by diet.....
http://www.remedyfind.com/hc-Interstitial-Cystitis.asp that is a link to a list of remidies of IC and peoples results.
I so hope you get all of the relief you need.Faith, Hope, and Love,
I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back! My hope story http://www.ic-network.com/patientstories/katrina.html
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.
or find me on facebook http://www.facebook.com/kat671?ref=profile
Be the Miracle! & Pay it Forward!
firstname.lastname@example.org please contact me...I am here to help!http://health.groups.yahoo.com/group/ICinWI/ if your from WI please contact me!
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