Hi Everyone..just diagnosed on Friday

[Carey]

Hi everyone...I'm 27 and I was just dx with IC last Friday by my urologist. I am so depressed about the whole thing because I already have Type I Diabetes and this is another thing to add to the list. I am also a dietitian and so for years as i have taken care of myself with proper diet and exercise, I am still dx with something that is uncontrollable and unpredictable. So my question is..where do i begin? What is the IC diet and what is the best resource for guidance conerning diet? Is this really going to be a lifetime of pain and being uncomfortable? I have been trying to get pregnant and that's obviously become really painful..my symptoms are pretty mild..right now I am getting the DSMO treatments every 2 days. How long does that usually last? I was give Elmiron but it isn't safe if I were to become pregnant. I am really struggling to stay positive...Please..any POSITIVE advice would be much appreciated b/c right now..i am really upset.

[Babs RN]

Carey,
So sorry to meet this way, but welcome to the ICN. The diet is actually right here on the website, plus one of the moderators has a workbook as she is a dietician as well. Hopefully she'll pop up soon. I know how much it stinks to to have something diagnosed that feel you have no control over. Most people find some combination that works while working close with their docs. These boards are a great place to get support from on the days that you need a soft place to fall.

Hugs and :welcome: ,
Barb

[tigger_gal]

(((((((hugs)))))) you came to the right place for support.. I am sorry you have IC.. please keep posting with all your questions and we will give you our best advice..
I am not sure how long the dmso treatments last , but, 6 weeks comes to mind..
Brat

[Ginny]

Carey,
So sorry to hear of your added diagnosis.
They usually do DMSO in a series of 6 and then make a decision if it is helping. I have had more than 30 treatments. Lost count but I think it is 38. The first set of 6 helped but after that they did not.
Elmiron is a good medication but it only helps a small amount of people. I believe the statics are 38 or 40%. I agree that it is a good idea not to try that if you want to get pregnant.
http://www.ic-network.com/handbook/ If you go to this page there are links to the diet and related info.
I also have Type 1 Diabetes. If you ever want to talk about having multiple illnesses send me a private message.
Ginny

[Sarojini]

So sorry you've been diagnosed, but on the positive side, at least now you know what is going on down there and can begin trying different treatments to get on the road to remission! :) :grouphug:

I also know what it's like to have multiple chronic illnesses; see my signature below! It can be VERY overwhelming at first, but then coping mechanisms develop -- one positive step you've already taken is to come here to talk to us :)

[Carey]

What is remission? Do some just suffer mildly or does it inevitably get worse? Right now I feel OK, you know? Is it all downhill from here?

[traceann]

Hi Casey and :welcome: to the boards!! As one of the ladies said, sorry to have to meet this way, but glad you found us just the same.

Yep,the diet here on the site is pretty helpful, and I believe it's JulieB who has the workbook and a great email newsletter too. I agree with Barb, hope she pops on soon for ya! :) Here's a link right to the foods list here on the site. I found it helpful to save since I could never find it twice...lol

http://www.ic-network.com/handbook/diet.html#list


To me, remission means no IC symptoms, with or without drugs, lol. Probably remission could be considered no IC symptoms and no meds, but I am not that picky!! :biglaugh:

Hopefully since you are not in much pain, sounds like you caught it pretty quick! I wish I had gone to the doc sooner, before I got to where the pain made me say "ENOUGH!!" :cussing: Now that you know what the cause is you can find the proper treatments and begin to feel better! I believe most of do too. It's not generally a progressive disease, most of us reach our "point" then just stay the same, or level out; then the meds start to help. I Have been on Elmiron about 8 months now, and my condition has improved immensely. I told my hubby that I had wanted to be on the med at least one year before we tried for a baby. And now with the other health issues I have going, we discussed trying next spring/June. :rolleyes:

Just keep your chin up, know that you WILL feel better, attitude can be everything too with IC!!! :idea: Try to keep positive, and ask all the questions you need to, or vent -- whatever. We are all here for you and each other, we all stick together! You are not alone, and we will do all we can possibly do to help you out!!!

I hope you start feeling better soon!!

[garden girl]

Hi Carey,

I understand how upset you are to be diagnosed when trying for a baby. That happened to me, too. We just had to put it on hold until I feel better. I'm about seven months into my treatment program (Elmiron, Atarax, Detrol, Neurontin, acupuncture, diet and physical therapy) and will need to be on it for a total of one year before we start to eliminate some of the drugs and we can start trying again. Some of the drugs are considered safe to be on until you get a positive pregnancy test, including the Elmiron.

Good luck!

Denise

[Elle]

Carey,
I wish you didn't have to add IC to your list! I also have several chronic autoimmune diseases, and sometimes it's a bit overwhelming. But, on the bright side, you've found a great place for info and support! You've already been given a lot of good information, so I won't repeat it. One thing about getting pregnant - you can take atarax while pregnant. Atarax blocks the mast cells that destroy our bladders. If you're not already on it, I would suggesst asking you Dr to add it to the Elmiron. From what I've read, iIt helps the Elmiron to work more quickly, by letting it do its job of repairing the bladder wall. Then, when you get pregnant, you could just stay on the atarax. One word of caution though - while pregnant & on atarax, you will need even more water than normal to keep yourself hydrated. Dehydration can lead to premature delivery and you'll already be at risk for that b/c of diabetes. But, with good prenatal care, you I'm sure you'll do just fine! There is also a section on these boards about pregnancy and trying to conceive. I wish you lots of luck & welcome to our family! :grouphug: