Interstitial Cystitis

[3uph0riabunnyfac3]

It seems like not many people use this group, so I might x-post, but has anyone else been diagnosed with IC? I've been having a flare-up and I'm wondering if it has anything to do with my MS-similar symptoms (not dxed yet). I've been diagnosed since I was 15 with IC and know that incontinence and similar IC symptoms are also under MS symptoms. But I also know that the cystoscopy diagnosis for IC has to be pretty specific to be considered.
Any thoughts?

[Rainicloud]

I have IC as well. I think it depends on who and what Doctor you ask as if it is related to MS.

My Neuro and Oncologist both think that it came about from the Radiation for my Bladder Cancer. Ive gone through 3 rounds of DMSO treatment for the IC. Its VERY unpleasent but can help for a few months at a time.

Another treatment the Urologist put me on is self injecting Heperin 2 times a day in my stomach, its typically a blood thinner but they have found it can build up the Bladder wall. I see Dr Weaver-Osterholtz in Pueblo, she definately has the God complex and isnt very "caring" but shes considered one of the best in Colorado.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[New normal]

I C history

Years ago, I had serious ic. Hospitalized from hemorraging bladder, had to have cauterization. Recurring over several years. Not related to MS.

I had a critical care nurse give me advice: no caffeine or chocolate, or acid type foods. Also, I contacted a whole foods supplement provider and started a program of supplements which included glandular products.

Intense pain gone in days.....condition gone in three weeks. Doctor cd not believe it and called it spontaneous remission.

That was over 20 years ago...I have had two other episodes...used the the supplements and it resolved.

I am not a medical authority, purely anecdotal....just saying'

You may want to seek opinion from alternative health provider.

[Rainicloud]

New normal, I was given a very specific diet by my Urology Oncologist of foods and drinks to stay away from very similar to the things you mentioned but much more specific. If anyone would like a copy of that list please let me know. It truly does help.

The biggest things are just as Normal said: Coffee, caffeine, even caffeine free sodas, certain teas, citrus fruits with the exception of Pineapple which supposedly can help due to certain antioxidents.

Testing your Alkiline (sp) can help get you on track too. You can find testing strips at places like GNC, Whole Foods, or even Amazon.com where sometimes is much cheaper. If anyone is battling with IC and would like some more "helpful tips" please let me know. I FULLY understand what h*** it can be.

[cosake]

I am also diagnosed with IC. Not related to MS in my case, but the saying is that once you have one autoimmune disorder, you are more likely to have more than one. I have a total of 4 auto-immune disorders.

I have modified my diet and I have had few IC flare ups since doing so. I use Prelief sometimes if I'm out to eat and don't know what I might encounter, or if I want to be bad and eat a small bite of something I shouldn't. When I do have a flare up, I start flushing with lots of water, use the heating pad, take Advil and a full dose of alprazolam.

I know that everyone is different, but I have to disagree on the pineapple - I love pineapple and it is one of the things that irritated my IC quite a bit - which is so depressing.

People tell me to drink cranberry juice to help my bladder. No thanks - makes it worse.

There is a great website with a forum for IC. It is http://www.ic-network.com/ and the people there have been fantastic while I was learning and had questions. They have a great list of things to avoid, etc. but keep in mind that not all of the foods on the list are going to affect every person the same way. I avoid less than half of the food list items because I don't eat the items in big enough quantities for it to trigger an IC flare under most circumstances.

[3uph0riabunnyfac3]

I generally don't have problems with foods, though I've stayed away from cranberry juice since before I was diagnosed lol.
It seems like recently I've been having a flareup, but with minor pain, which has always been my main symptom. Recently it's been urgency and light inability to hold it...ugh...

[cosake]

What does your doctor say ? Have they given you anything for the pain ?

[3uph0riabunnyfac3]

I haven't gotten to talk to either of them (pcp or neuro). my next appointments are the first week of next month. I take midol for pain.

[cosake]

If you do not have uro-gynecologist, I would highly recommend one for the IC and bladder issues.

Even if the problems are MS-related, there should be something that the specialist can do for you.

[Mariposa49]

IC preservatives and emulsifiers

I had a friend diagnosed with IC and she found it was definitely triggered by food additives. Specifically emulsifiers and preservatives. Avoiding those additives seemed to help.