The flare that wouldn't die

**iwishihadiwingz** · 08-23-2005, 01:51 PM

Still flaring after all these years...(singing)

okay...it's not been a year it's been a month though! I just wanted to know if anyone had the same problems I do and if anything they tried helped...my main problems is sitting down for too long and car trips...car trips recently especially...

Before this flare I never had any problems with food (except orange juice occasionally) or car trips...I hadn't had a flare in over two years either...I've tried aloe and taking problem foods out of my diet but with little success...

So I guess I want to know if
A.) anyone has a solution to the car trip problem?
B.) anyone has a solution to the sitting down problem?
C.) anyone who has tried aloe...how long until you saw results?

Thanks!

***ICNDonna*** · 08-23-2005, 04:14 PM

Are you taking any medications? There are many that might help.

For car trips, and for sitting at my computer, I have cushions from the ICN Shop. They're great --- cushion the bottom without any pressure on the perineum.

Donna

**kelly McC** · 08-24-2005, 01:21 AM

A cushion helps me also changing position if were in the car to long or stopping frequently. I hope your feeling better soon. For me my combo of meds seems to be the best treatment so far.
Take care,
Kelly

**iwishihadiwingz** · 08-24-2005, 03:29 AM

Thanks for the responses...I ordered one of those cushions so I hope that helps some...I am taking Ditropan and it seems to be helping...I think that the aloe I am taking to help is actually making it worse...I'm going to go a day without and see what happens...wish me luck.

**traceann** · 08-24-2005, 05:24 AM

Hey there wingz, I can relate to the travel thing.

When I was first diagnosed, it was about a week before Thanksgiving. And my sweetie and I had plans to meet his parents for dinner about 3 hours away.... Before the trip that morning, I made sure I took my pain meds pre-travel to prevent problems, and my AZO Standard before we left. I made sure I stopped at every chance so I could pee, and I kept on my regular med sched and followed the AZO Standard dosing instructions on the box. That kept me happy on the way down. But by the time we got there, oh boy. In the restaurant the bladder and urethra started in on me. I must have gotten up to pee 50 times, so embarrassing, and every time I really didn't have to go.(It didn't help I was really nervous: about travel, being around his mom and dad, etc. I think that was just as big an influence in everything coming undone for me as the actual travel)

Fortunately, I made it somehow through dinner, and then his mom told him to take me back to his grandma's place (she died the past spring, we were helping that weekend to clean it out) so I could pee in peace and not worry about the embarrassment in the restaurant. It was getting really bad by that point, I was sooo uncomfortable at the cottage. When we finally left for home, about a half an hour or so down the road, he asked me if I wanted to turn around and go back and just stay over-night at the cabin. I entertained the idea, but decided I wanted to be home. So, we stopped at a gas station, so I could pee, lol, and I had him grab me a bottle of water. Well, I decided to hold it between my legs, and what a relief!! The coolness, calmed everthing down!! I kind of half-sat on it, straddled it I guess you could say. And the rest of the trip was a breeze!! It was amazing! Granted, we had to stop a couple times to get a new one as they got warm, but wow!!! So, I now keep left over water bottles filled with water and in the freezer for car trips, I usually stick on old sock over it if it's too cold and keep it in a freezer bag, so my pants don't get wet, etc. Best thing I ever learned though. I could not believe the difference in how I felt on the trip home.

Then for the trip to his parents at Christmas I was even more prepared. I took along Thermacare Heat Patches for menstrual cramps, those are a blessing to the cranky bladder!

So, I had them, my meds, my frozen water bottles, all my safe snacks and water, plus a bed pillow to sit on, as I don't have a special cushion. That trip was the best ever. Only time I had trouble was the last leg of the trip, I just think my body was worn out from the busy day and started to not be able to fight it off any longer.

Hope this helps you out a little bit, I know these things have saved my butt!!! LOL

Hugs,
Tracey

**emilyrose197377** · 08-24-2005, 05:30 AM

Hello I am sorry your still in a flare . The women here gave you a lot of good advice I don't have much to add. I hope something helps you soon.

**iwishihadiwingz** · 08-24-2005, 01:21 PM

Thanks for the info....I'll give it a try...this flare started up a couple weeks before my wedding on the day my best friends baby was born. it was so sudden! Before this flare I hadn't had a bad one like this in over two years...one second i was fine the next i was convinced (also hoping) it was just a UTI because I only ever got flares around my period and that wasn't due yet. Anyway that was July 21 we left for Las Vegas August 2nd the plane ride there was a nightmare! it was so awful...the week there was okay...not too bad but in the limo on the way to the chapel I thought I was going to pee myself! And it's all on tape! I'm sure I'll laugh at that someday! Anyway the plane ride back was bad but once I got home and rested for a few days I started feeling better but now it's this constant feeling, sometimes it'll ease up a little bit, but for the most part it's still bothering me. Mainly when I'm sitting down and when I'm in the car, which is terrible because my husband and I love jumping in the car and going for a drive spur of the moment...we tried a few days ago and it was a pretty miserable experiance...on top of the fact that most of my friends live an hour a way in the town I grew up in and his parents live two hours away...going there next weekend...it's awful...i wish this flare would go away...i'm 22 and i just got married! I want my life back! I had a hydro last time and it went away...my uro seems convinced that this one was brought on by stress because of the wedding ( I also broke out in to hives ) and assured me it would go away...she gave me some peridium but it didn't do anything to help me...here i am almost two weeks after the wedding and still no good...well anyway thanks for the help I hope that it helps!

***dyno*** · 08-24-2005, 04:09 PM

I hope you will find something soon to help. I know stress is a real trigger for my bladder and it can take time to settle down.

**ICPrincess** · 08-25-2005, 10:56 AM

When we were buying our new home (which was out of state), we had to drive 4 1/2 hours each way to get there for appointments, the closing, buying appliances for the home etc. I thought I would die (and this was just two months ago).

What saved me was taking a half a percocet each time along with a Pyridium. I swear it helped me get through. The combination (and sometimes just the percocet alone or even one time just the pyridium alone) was enough to get me through ok. If the flare was awful, I would take both and I was feeling fine. I did have to resort to taking the other half of the Percocet on the way back because it had been a long day and it started to come back (plus we had anoother 4/12 hours ahead of us driving back).

I also tried to not drink water right before we left to prolong how long I could go without asking my fiancee to stop the car to pee (Even so, I always had to stop two times at a McDonalds or a rest stop to use the bathroom). I just HATE how Pyridium stains everything in comes in contact with. I would love to know WHY exactly that they feel they must put that nasty dye in it.

**iwishihadiwingz** · 08-26-2005, 07:25 AM

I've always wondered why they put that dye in it too...I'm never had a bad staining problem though. The thing is pyridium seems to have stopped working for me. I feel no improvement at all when taking it. Maybe I've built in immunity to it from all the UTI's in the past. I'm never tried/heard of Percocet...what is it exactly?

**Babs RN** · 08-26-2005, 08:41 AM

Percocet is a schedule II synthetic narcotic containing oxycodone and tylenol. It is generally prescribed for moderate to severe pain. In addition it comes in 3 strengths with varying amounts of Tylenol 5/325, 7.5/500 and 10/325. That's the basics on Percocet--oh, and it is also called Tylox. Hope this helps a little. As always, make sure you consult with your doc as to what medications are indicated in your specific case.

Hugs,
Barb

**iwishihadiwingz** · 08-27-2005, 03:38 AM

no wonder i didn't know what it was...i dont have any pain..lucky me...thanks for the info though

**ICPrincess** · 08-27-2005, 09:30 AM

Percocet has been a godsend for me. Thank god I do not need to take it a lot. I had the same bottle of (30) 325MG Tablets for 5 months. I only use it for really severe breakhtrough pain or if I am going on a long road trip. If I break it in half, it is just enough to take the edge off the pain.

Babs, since you are an RN, by any chance do you happen to know why they feel the need to put dye in Pyridium. Does it aid in some way or is it just so that other medical professionals know we have used it? It drives me nuts! The stuff is great except that it ruins toliet seats, clothing and anything else it even remotely touches.