Some quesitions

[Toto]

I'm wondering if any of you might be able to answer a couple questions.

First of all, I'm wondering if having a small bladder is related to the IC condition or are they two independent things. (my bladder holds 3oz. of liquid I was told...that's the capacity that is) I have known for 20 years that my bladder was smaller in size but only recently got a positive diagnosis on this. I have no doubt the IC has been around that long but for a variety of reasons wasn't diagnosed. I'm still going back and forth about having a hydrodistention and so far cancelled surgery twice due to fear of being in tremendous pain. So I'm wondering if someone has a smaller size bladder, is there some risk of having a more difficult recovery. (I know I can ask the doctor's office these things but I am actually looking to find a new urologist because I felt I wasn't getting enough help from the place I was at) The doctor took me in the office, told me in less than 5 minutes that I had something called IC, gave me this website, gave me a list of meds we'd try, and sent me on my way. (I wish I was kidding) I went back later and said a "couple" of the prescribed meds didn't work and a doctor's assistant put me in for surgery saying that no other meds or options would work for me. (I do want to add that she did tell me to cut down on tomatoes and caffeine)

Ok...that was a bit of a vent. To continue. Yesterday I posted on someone else's post (airline stewardness) about traveling and IC. (I removed my post thinking it was unfair of me to ask questions on her post. My question is this. Do IC sufferers have any rights to use restrooms on the flight in the case of emergency. What do other people do who have medical conditions that require emergency bathroom use. (such as Crohn's for example) I have SEVERE anxiety (in the form of acute anxiety attacks) because of fear of having to use the restroom and someone telling me no. I'm so frightened to wet myself. And then of course my stomach aches from anxiety and I get nauseous. Which then leads me to fear having a sudden case of diarrhea and vomiting. Two other things I DO NOT wish to happen in my seat. I know this sounds very irrational, and it is in some sense, but to have a weak bladder is something nothing short of hell. And I have to travel each year (sometimes 2 times a year), alone with my children, which makes it even more stressful. During my last flight I had to take Klonopin to stop anxiety (which of course aggravates IC) to control my bladder, stomach, etc... My mother said I looked like I was on death's door when I returned.

I'm also noticing anxiety when driving. I will often get anxiety even if I know I have an upcoming long trip. I can almost guarantee a bladder spasm. This is so frustrating to me. As you know it's not easy to stop. Of course I have no problem peeing anywhere, such as on the side of the road or in the woods.

What do any of you who have these fears do to alleviate them?

I can't remember the other questions I had. Thanks so much for letting me vent my frustrations and well as ask questions. So far I've gotten tremendous help from this site.

[Mothergoose]

It is part of stewardess's job is to make sure everyone is seated in their seats at certain times, or when there is turbulence.

I got up once when I was not supposed too and the stewardess tried to tell me to sit down I said it was not optional for me I have a medical problem, she said I can't stop you but if you get hurt you have been warned, I said duely noted, I peed quick got back into my seat and all was fine.

Once I need to go if I can't go right away then I have to go all the more and I get desperate.

I can hold it for a bit, but by the time I am desperate if I try to wait much longer then I can't go and go into total retention, so as I told her it is not optional for me, and sometimes it comes on very suddenly.

I don't let it bother me though i fly quite a bit and it has only been a problem a couple of times, I still have to pee every 30 mins, but I manage.

Good luck MG

[Pammylynn8]

i get a lot of flying anxiety so I just don't do it. I drive mostly. I wish I could fly!

[kadi]

My experience has been the same as MG's. I also time my medicines so that I'm pretty well medicated during flights. On a long flight like to Europe (very long from the West Coast!) I consulted with the pharmacist about how to time my medications for both the long flights and the time difference. It worked out well. I also use a maximum Poise pad (I usually use the moderate ones) and an IC seat cushion so the pad doesn't cause more pressure. I arrange for an aisle seat near a restroom. I also bring plenty of distractions for myself - puzzles, books, ipod. I don't love air travel with IC, but I love travel enough that it's worth the hassles.

[Toto]

Thank you for the responses. This is the first I've heard of a Poise pad. I might consider using one for driving in case of an emergency situation. Though I'm not sure I could actually go in one of those pads. Hmmm....

And what is an IC cushion? I'll check out the store here. If you've used one, I'd like to know it has worked out for you.