New/Lots of ???s

[jcnickmom]

Hi Everyone,
I'm new to this site. I've had chronic urinary problems since my hyst in 2002. My story is very long and involves everything from fistulas to kidney stones. I haven't had surgery since 11/04! That in and of itself is a miracle! Since 04 I've been fighting with pain, frequency, burning, and the inability (at times) to empty at all. My urine constantly has WBCs, but rarely grows bacteria. My URO who has done most of my repair surgeries has sort of "checked out". My PCP is convinced that I have IC and has started me on Elmiron. I'm overwhelmed to say the least. Everything I've been doing for the past several years to fight what I thought were UTIs is the total opposite of what I should be doing for IC.

I eat a lot of fruits and veggies. I love salads. I've been taking 2000mg of Vitamin C every day for the past 3 years (I was told to do this by my uro). I feel like my life is being turned upside down.

I'm not at all sure I should go through with any more procedures to confirm the diagnosis of IC. My bladder doesn't respond well at all to trauma or anasthesia. It will just shut down and refuse to empty at all for at least a week. It will spasm and just have a general fit for several weeks after that. I'm not sure it's worth all that. My PCP wants me to commit to the Elmiron for 6 months along with a change of diet and see if it makes any difference. What do you all think?

Any suggestions for the pain and frequency? Is there a specific muscle relaror that works well on the bladder. I can't take Detrol or Ditropan because I have retention problems and these make that worse.

Speaking of retention, does anyone else have that problem? It causes me an issue if I feel pressured that I have to void quickly. For example, if we're traveling... I feel strong urge, but can't actually go. Then I begin to panic because I know it may be a while before we come across a place to stop again. So, then I am forced to cath which just adds to the burning and frequency. It's a vicious cycle. UGH!

[vm]

For sure, for sure, for SURE try the IC diet. It is simple (but not necessarily easy) and can make a big difference in your symptoms if you try it long enough to really see if it helps. There is more info here: www.ic-network.com/handbook Look for the section on diet and it will tell you all you need to avoid - which is a lot of the fruits you probably love. Also, some vitamins can aggravate it - Vitamin C being a big one for many.

Good luck! You'll find lots of great support and info. here.

[VickiB]

Wow, you've been through a lot! Makes me feel fortunate that all I have is IC!

Suggestions for pain & frequency? My best self helps for these symptoms during a flare would be: First, to eliminate any food/drink that is potentially irritating. Next I increase my water consumption (untreated, spring water). I take Azo or Uristat when I can no longer tolerate the pain (OTC med for pain/burning/frequency). Baking soda in water helps with my burning as well, but may not be good for those whose diet is sodium restricted. Sitting in a warm bath with a crossword puzzle seems to help me. A good movie with a heating pad on my bladder. Hmmm, that's about the end of my list.

If it is IC, you're likely to find most fruits are not our friends. Nor are many salad dressings! The handbook has really good info on diet as well as a list of problematic foods that I found extremely helpful.

Sorry, no retention problems for me, but I know others here do deal with that and will hopefully post to your thread.

Hang in there!

Vicki

[Sarojini]

I agree that you should try the diet... and that you should give the Elmiron a chance. While you're looking at the handbook, check out the section on "Treatments." There are many things you can do while you wait for the Elmiron to "kick in."

I also cannot take Detrol or Ditropan due to retention issues. Have you asked your doctor to teach you how to self-catheterize? I learned how and it really helped when I had episodes of retention... at least, that way, I could empty my bladder and get some relief. It also helped to know how to cath when I started doing rescue instillations myself at home (there's a description of those in the Treatment section of the handbook as well).

[topcop229]

The diet is definitely the first thing you should do. It's not the most fun in the world, but in a few weeks, you should be able to slowly add foods back in to determine what specific foods are triggers for you, as they are different for everyone.

I, too, have retention, and I understand what you mean about trying to go "in a hurry." There really aren't any good solutions for that. As for normal times, try and relax as best you can and try very hard not to push to get your flow started. You should prop your feet up on something, like a four pack of toilet paper. Then, start concentrating on your breathing, deep and slowly. Blow out like you are breathing through a straw. If your flow still hasn't started, then you can lean forward slightly and continue your deep breathing. Still nothing? It is probably time then to either self cath or walk away and try again later if you aren't having that maddening urgency!

There are many meds out there that can help you, it's up to you and your doc to try and find the right combination, and that can definitely take time. It sounds like you have a good PCP who is trying to at least get you on elmiron to see if that will help.

Good luck!!
Claudia

[jcnickmom]

Thanks!

Hi Everyone,
Thanks for the replies and helpful info. I'm soory to be so long in replying, but I've had what I believe is a very bad reaction to the Elmiron. The worst stomach pains, throwing up and the other end (if you know what I mean) that I have had in a very long time. UGH. I got very dehydrated and didn't even produce any uring for over 24 hours. That was actually a blessing as my IC symptoms were very minimal. I've stopped the Elmiron and I am slowly working my way back to normal. Diet and nutrition are going to be my focus for now. I'm starting the elimination diet now. Perfect timing as I just went through a vigorous colon cleaning (smile). Thanks again!
Melissa

[topcop229]

SOOO sorry that you have been so ill! Stomach troubles are just the worst...especially when they are happening at both ends simultaneously! I am glad that you are starting to feel better.