Newly diagnosed in SC

[Joanie]

This is my first time using this forum. I am newly diagnosed, 3months ago. I have been on several meds. and urol. stretched my bladder and cauterized all the ulcers. I have not had any relief since being diagnosed. He tells me there are several things for him to try, the next being heparin injecttion. I have constant urge to go, pain in genital area, and go to bathroom at least every 15-30 minutes. I realize this has been a short time compared to all others I have been reading, but, this only discourages me more. Since I feel like there will never be relief. I just started taking AloeVera, from Desert Harvest, after reading the internet ICA webpage. Dr. gave me hydocodone for pain, and to try to help with sleeping, but I am nauseous and dizzy, besides the IC pain, after taking it. I am also looking for a support group in the Myrtle Beach area.
I also am not very computer savvy, so bear with me while I learn about both, IC and computers. Thanks for any help.

[hdb1982]

I am sorry for your diagnosis but atleast now you can begin treatment. Some ICers do get better so don't get discouraged. Just make sure you have a well informed dr that you trust. That is the most important thing about receiving good treatment. I will be in Lumberton NC the first weekend in October. I believe it is 1.5 hours from Myrtle. Welcome to the boards. You will find a lot of information as well as a huge amount of support from everyone on here. Good luck with your treatment and we are always here if you need us.Heather

[Joanie]

Thanks for the support Heather. I will stay in touch. I am just learning how to use this site also, so I may not do things correctly to receive info and ask questions. Do I have to fill in a title each time I write?

[hdb1982]

When you post a new thread you must have a title but not to respond to a post. You posted this under the "i'm in remission" forum. To choose which forum to use click on the top that says ICN Forums and then click newly diagnosed with interstitial cystitis. after you click on that forum at the bottom there is a drop down box that lets you choose from tons of forums to post in. If you try to post in the best matching forum for what you are talking about you will get more responses. You can also pm people. Under your user name it says private messages. If you click on that you can send a private message to another ICN member without having to post a thread. You can pm if you need help navigating the boards. I may not be actively on the boards but am always logged in and check back frequently throughout the day.

[icnmgrjill]

Hi Joanie and welcome to the ICN!!!

I know that you're feeling very scared right now. You've just had a major procedure, had your ulcers lasered and are READY for your symptoms to improve. They can but it's really important that you follow the basics too. The fact that you have hunner's ulcers means that your bladder is really irritated and injured. Those ulcers are wounds that have been cauterized. But, they are still very tender... so you MUST modify your diet immediately.

You should NOT be drinking any
- COFFEES (even dacaf)
- GREEN TEAS, REGULAR TEAS (peppermint or chamomile herb are ok)
- SODAS or DIET SODAS
- FRUIT JUICES

These are just way too acidic for those healing tissues and will make it much harder for your bladder to heal.

If you're still not sure about the IC diet, I suggest that you buy atleast one of the books on diet ... either:

1) A Taste of the Good Life: A Cookbook for an IC Diet or
2) Confident Choices: Customizing the IC Diet or
3) The ICN Special Report on Diet.

These are all available through the ICN at: http://www.icnsales.com

Again, because you had the ulcers, diet is CRITICALLY important for you and one of the most important first steps to take after being newly diagnosed!

Sending lots of good, healing wishes your way!!! You are definitely NOT alone and please remember that for every patient posting in this forum having a bad day, there are thousands having great days. Not everyone with IC is struggling. So, you have to keep that in perspective when your participate in any support group, especially this one!

Jill

[Joanie]

Thanks for all the valuable info and best wishes. I have been following the IC diet for the past 2 weeks, and I do feel a bit better. My dr. didn't suggest anything but staying away from caffiene. I read about the diet on the ICA website and also about Aloe Vera supplements, which I have been using for 4 days. (Desert Harvest states it takes from 1-3 mths use)
I really did think I would feel much better, and sooner,after having the ulcers cauterized. My dr. just keeps saying that it takes time, but not how much.
I don't understand how you can have 1 good day, think you are on the road to recovery, and then the next day, all symptoms return.(even if I am very careful eating and drinking). Is there ever a chance that the symptoms go away forever or am I being unrealistic?
Thanks too for all the upbeat talk. I'm working on my attitude daily.

JoAnna

[ICNDonna]

I'm so glad you found us. Of course there's a chance that you will be able to get your symptoms under control, but nearly all of us have to be careful about diet to stay feeling normal. If you are having some good days, hopefully you will progress to having most of your days good ones.

You might want to do a food and drink diary; sometimes that will help to find any unusual triggers. It took me a long time to learn that garlic, which is safe for almost ICers, will trigger a flare for me if I eat more than a tiny bit.

And if the pain medication ordered for you is causing problems, by all means contact your doctor and ask if you can try something different.

I hope that very soon you will be posting to say that you are doing much better.

[Bessie]

I too am glad you found us.
We are all here for you

[GriffsMommy]

to the IC Network! I'm glad you found us. You will find so much support and info here. I know it seems horrible how you feel but lots of people get their symptoms under control. Hope you feel better soon.