Finally Diagnosed with IC

[Dawn1216]

After a couple months of visits to urologists I have finally been diagnosed with IC. It comes as bit of a frustration because I do already have ulcerative colitis, which is an inflammation of the colon, again a chronic disease. I am on multiple meds for this. I can only hope the medicine my doctor gave me will work. I find myself going on all these message boards to research about medicine, but then end up freaking myself out by reading all these bad experiences. I was excited to find this site where people can share info. I never had problems before November when it all started. I love Dr. Pepper and chocolate and find those will be very hard to give up. Any advice?

[traceann]

Hello and :welcome: to the gang! I am glad you found us! I think I can safely say we all can relate to the frustration in being diagnosed with IC (but on the other hand a relief to finallly have a name for what's going on!), then finding out that a change in diet can be helpful, etc. And, there are a lot of us who have UC, and other autoimmune-type diseases, IBS, etc.

The diet change is frustrating in the beginning, as it's so bland and can be very boring until you figure out your tastes. But, once you get your bladder feeling better, you can add in other foods one at a time, to find your trigger foods. I have a feeling that you will discover you can eat more than you think you will be able to, it's just slow going finding out. Here's a link right to the IC Diet Foods list, if you haven't found it already...

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

I did what was recommended to me when I first came here - I started out with a diet solely of the foods off the "usually ok" list. Then after about 3-4 weeks, or however long it takes to help your bladder, I started adding in foods one at a time from the "may be ok" list. With at least 2-3 days in between so you can tell if it bothers you or not. If I'd had an increase in symptoms I put it on my no-no list, to be tried again at a later date. If the second time around I had an increase in symptoms, I put it on my permanent no-no list. It's slow going, and frustrating at times, but very worth it.

There were lots of self-helps I learned from the gang at the ICN. Here's what I can remember:

Heating pad/Thermacare Heat Patches: I now have a heating pad with an auto shut-off so if I do fall asleep with it one, I am safe. The heat patches are wonderful for when your heating pad isn't feasible - like for travel or sleeping. Heat was my number one friend for my bladder!!!!

Cold pack/frozen water bottle: For the vulvar pain and for my urethral spasms cold worked the best. Depending on what was going on all urethral or all clitoral/vulvar etc, I would use either one. The frozen water bottle is fantastic for putting between your legs, it fits perfectly. (I discovered this trick on a horrible car trip, that the water my hubby bought me, when I held it between my legs my urethra calmed right down!) I would even half sit on it -- straddling it. It helped sooo much!!

Prelief tablets: These are tablets you can buy in your drugstore or online that help to reduce the acid in foods. You take them right before you eat. They have helped me to expand my diet and tolerate some things I wouldn't normally be able to tolerate. I get them at my local Rite Aid, I spend anywhere between 8-10 dollars on them, and that's for a bottle of 120. It's just basically a calcium supplement, but it's wonderful.

Baking Soda/Tums: If I had eaten something that did not like me, I would drink 1/2 -1 tsp of baking soda in a big glass of water. Tastes yucky but helps neutralize things, even used to help with my urethral spasms. But be careful with it if you have salt-sensitive health issues... Also eating a couple of Tums can help as well. I usually use that trick for travel than the baking soda in water.

Uristat/AZO Standard: These two are over-the-counter Pyridium. Basically an analgesic for your bladder/urethra. It numbs things up quite nicely, and they had helped me immensely with urgency and frequency problems! But, they are for short-term use only, it's not a regular every day thing. I think the directions say not to use more than 2 days in a row. I talked to my doctor and got the go ahead to dose more than it stated, but you do have to talk to your doc if you want to use it more often. Apparently from what I have read and understand, is, it can build up in your kidneys and cause problems. And it also makes your urine orange, so make sure you have plenty of panty liners, because any little drip and you have stains!! LOL

Voiding/Pain Diary: This was a HUGE tool for me. I recorded everything in a little spiral-bound notebook. Every time I peed - approximately how much I went and rated any discomfort/pain on the pain scale I found on the site. I logged in what day I was in my cycle as hormones can affect your bladder -- I found I always have some troubles around ovulation and right before my period. So, it was nice to be able to flip through when I couldn't figure out why my bladder might be acting up and see that it was most likely the normal hormonal kind of thing going on. I noted when my husband and I had sex, etc. Everything -- I logged everything. It was a great tool to have to turn to, and a great gauge of my progress. I would have never realized I was voiding 30+ times a day, and 3 times at least at night. With my diary I could see the numbers start to fall.... And those I would have not recognized either, since it was usually a decrease of one or two times a day.... Now, I am at maybe up to 10 times a day, and mostly because I constantly am drinking something, usually water water and more water, lol.

Hope this helps a little bit, and don't be shy! If you have any questions etc, don't hesitate to ask!!!!! We are here to help any way we can! ;)

Hugs!
:)

[Sarojini]

:welcome:

You have received some good advice from traceann :)

It's hard to give up favorite foods -- but it can really help. Some are really sensitive to diet, and this one change makes all the difference. Then, too, there are those who are not so sensitive... you may be able to have your fave treats now and again. My best advice is to try the IC elimination diet for a good four weeks, maybe more. Then, you can start adding things back one at a time if you feel better. You may well find that some things that bother others might not bother you, or vice versa. You may also find that say, a half a can of Dr. Pepper every now and then (especially if you try Prelief with it) may be okay for you -- even though it might be horrible for someone else.

That's the worst thing, in a way... especially for me. Two people rarely have the "same IC"; we are all different with it, and so it's hard for me to say what will and won't work for you, even though I wish I had the magic bullet :) We can eat different things, we react differently to meds, and even symptom-wise, we can be different -- some have no pain, some have only pain, some have frequency, some don't. You see where I'm headed...

Anyway, I'm very glad you found the ICN... you'll find so much information here. I know that when I was diagnosed this place was a lifesaver to me.

Oh, and I do know there are others with ulcerative colitis here, so I'm sure they will be around shortly. Me, I just have "garden-variety" IBS, but that is a nuisance and a half -- I can't even imagine what you must feel with UC!!!

:grouphug: