Tips on travel?

[ICNJess]

Hi all, thanks in advance for any tips! Well this weekend upcoming my family is going to be visiting my siblings in my old hometown in Illinois, which is 6 hours away from my house now by car. I haven't made that trip since being diagnosed with IC, and I'm in a flare as of late, any tips about car rides? When I was little, my parents had to bring a little potty with us for me when we went on trips, I think I'd look pretty ridiculous in the backseat of their suburban being 20 years old and peeing in a child's potty! lmao Although, they did offer to get one, lol!

[ICNDonna]

I just returned from an auto trip that was nine hours each way. We went one way on Saturday, and returned the following Thursday. Hints: I took along my IC pillow to sit on and we took bottled spring water along (enough for the full time). Frequent stops at rest areas. I was asked before every rest area if I needed to stop. Take along pain medications. I was in a flare before we started and it continued for the entire week --- is still with me. Those thermal heat pads that heat when opened are good. I had a warm puppy laying across my lap, which really helped!

I took along some Travel Johns, but didn't need any. We visited family and they all know I need rest rooms when I need them --- so every place we went they told me where I could find one.

And most important --- have a good time!

Hugs,
Donna

[liz2]

When we travel by car. I take an ice chest along. In it I put my own breakstone cottage cheese, add to the cooler cans of juice that I can drink as needed, cans of pears as needed, home prepared custard in small 1/2 cup pyrex dishes that I put in zip locks. Also I take a rubber maid or ziplock containers of pre-cooked turkey patties and/or hamburger patties. My own homemade breads go too and frequently a container of leaf lettuce. Always I have a canister of sugar cookies or snickerdoodle for hubby and me. Uually I take fresh pears and baby carrots.

You can replenish as needed. Larger cities have bakeries where you can get more goodies. Independent bakeries are very cooperative.

I warm my patties in convenience stores where my husband buys his lunches. I can peel my fresh fruit anywhere-don't forget a good knife because plastic is no substitute. Many hotels have microwaves where I can warm bread, etc. I have sometimes found that a motel will offer to bring in a small refrig when they see the ice chest and I tell them I have health problems--I'm also diabetic. The doctor's letter does wonders. It has even given us extended check out times on those mornings when I am dragging. The doctor rewrites it each year.

Also I take bottled water from home, and when I run out I buy Evian.

At night we usually eat out, and I can get a plain steak, grilled chopped sirloin pattie, or sometimes fish or chicken. Many times plain steamed veggies are available upon request as is a baked potato or plain rice.

I stay away from salad bars, because they add preservatives to the lettuce so that it stays fresh.

Even if I am at a relative's house or close friend's house, I find that I frequently have to supplement. Then, too, so many people eat out now days that I could wind up hungry. No one is insulted that I bring some of my own food; they seem relieved.

Like Donna I take a cushion to sit on, and we make frequently bathroom stops. I always carry toliet paper with me, towelettes, the emergency bathroom card, and my doctor's emergency letter.

If I get caught in a fast food situation, we go to Burger King and I order the flame broiled hamburger on a plain bun and usually eat one side of the bun. Subway lettuce, turkey, and American cheese on a salad is not too bad if you get caught in a pinch.

My survival kit includes a dark sheet, so that in emergencies, on the side of the road, both car doors can be opened and my husband can hold the sheet to block the view. I don't like the portable john, but carry it just in case.

Also we take a pillow to sleep on and an egg crate with us that can be placed on the back seat or in the back of the Durango with both seats down.

I take all my usual meds, including pyridium, pain, and spasm meds, and whatever I may need to help me sleep. Also I carry a bladder antibiotic just in case, immodium, and nausea medication (because my bladder can sometimes cause me to get nauseated during a long car ride. Don't forget a portable heating pad (pack an extension cord for the one you use in a motel room). I also take a T.E.N.S. unit.

We try to travel no more than six hours, but I can last as long as seven plus.

Recently, at a convenience store, hubby and I found a smaller size of Breyers natural vanilla ice cream that we split and pigged out on.

On longer trips we are considering getting a small bar-b-que grill, etc. and buying and broiling our own steaks, etc.

I have a check list of items to take on trips. Keep all prescriptions in original bottles in case you are stopped by the police.

I make sure that my jeans or shorts have elastic waists and that the elastic has a lot of give to it. I do take pads along just in case I have a day when I think I may be having a problem

[auntiedeb]

Those are good suggestions Liz. I just read your post. You have done alot of traveling and expereinced alot. I know that it can be done. Hang in there. There's hope. I love custard. Hmm maybe I will hint to dAd to make it. He made me scrambled eggs this morning and I wanted them so bad. He said he had no eggs in and then he found 2 of them. they were delicous.

[ICNJess]

Thanks for all the tips--
I was supposed to leave two days ago, but couldn't. :( Oh well. Custard sounds good. Is that what you just posted Deb? I think so. I'd kill for a chocolate shake right now. Funny, this turned from travel to food!! lmao Take care all!

[auntiedeb]

Oh Jess, I am so sorry that you couldn't go. I feel it for you. I hope you feel better. I am lucky that my family lives around me and don't have to travel that far to see them. yes custard does sound good. comfort food.{{{{{{{{{{Jess************************ grouphug grouphug grouphug angel angel angel

[gwyn]

i am sorry your trip was cancelled...

nevermind,,, there is always the next time. :p

ps liz... thanks for your great tips!!! grouphug

[ICNJess]

Thanks for the warm posts. They made me smile. You guys give me the support here that I don't get in the outside world. I mean, my family understood and all, but I was kind of disappointed. Oh well. I snuggled up on the couch with a blanket, heating pad, pillow, and Chicken Soup for the Mother/Daughter soul, and all was well again. I also came on here frequently. You're probably wondering why I had a blanket and heating pad in such hot heat. Well, it rained here all weekend so it was nice and cool, thank God!!! Luckily I am able to tolerate Georgia Mud Fudge Blizzards from Dairy Queen...my husband kept me supplied this weekend while he was at work. :) But now my sweet tooth is bugging me again...I think I'll go in search for something sweet, or send him out to get custard!! lmao Thanks girls, I love you!

[liz2]

My ultimate travel experience is going on a cruise. For two summers in a row we have cruised on Royal Caribbean. My food list is faxed ahead of time by my travel agent to the cruise line and to the ship's executive chef. Also, I hand carry it and present it to the head waiter our first night aboard--just before we sit down for formal dining.

The key is to eat in the formal dining room. Everyone will try to accommodate you. Of course, you need to tip well at the end of the cruise.

We cruised Alaska's Inside Passage last year, and the Hawaiian Islands this year. We got a room with a balcony both years--just in case I got sick, I wouldn't missed anything. It really helped for Alaska, but wasn't needed for Hawaii. There is not as much to see in Hawaii while you are cruising. Book early and you can get excellent prices.

I am also diabetic, and we were able to work around that and an IC diet.

[liz2]

A key to a smoother ride: We do not put the heavy mud tires on the Durango, as it makes my ride too rough and difficult. We use Goodyear Wrangler RT/S. My husband can still used the 4 X 4 in the woods and not get stuck.

My most comfortable ride has been in Ford's Crown Vic, but that car is getting a little too old to take on long trips.

I have found that a heavier vehicle makes road trips easier. I can tell you that you don't want to ride in a Mustang. My son has one, and I rode in it for 90 miles and back and thought for days that I would die.

[ICNDonna]

My favorite way to travel is in our motor home. I can sit up front if I wish, but if I want to rest, the bed is right there for me --- and best of all, my own traveling bathroom and plenty of IC friendly food in the fridge! The only time we go by auto is to visit our kids --- the gas mileage on the RV is horrible and we can't really justify it if we only have a day's drive and will stay with family.

As soon as I get out of my current flare (which probably means a hydro) I want to head for the beach.

::::::sigh::::::
Donna

[liz2]

Donna, You have gone a while since your last hydro, haven't you. Sorry that IC caught up with you. I use them like you do. Good luck. I can always tell when I need another one.

[ICNDonna]

Liz: Yes --- this time I've gone 14 months. I think the monthly DMSO has helped me go longer. I do have occasional flares, but they usually go away within a few days. This one has been going more than two weeks. I am supposed to call my uro today and we'll schedule another hydro.

And after that, if I am accepted, I will be going into the RTX trials instead of returning to DMSO. I'm a little nervous, but maybe this will be the answer for lots of us.

Hugs,
Donna

[ICNJess]

Donna--
How often do you go in for a hydro? Is it under an anthestetic? I'm just wondering because we're trying to find a treatment good for me because I've been having severe, disabling pain lately.

Thanks,
Jess

[liz2]

I don't know about Donna, but I have a hydro every 6 to 8 months, and it is for pain relief. I use a general anesthesia.

[ICNDonna]

I've been treated by hydrodistention for 28 years now. The shortest time between hydros was five months, the longest was just under two years. I usually plan on about every six to nine months.

The procedure is done in a hospital surgery with anesthesia --- my choice is spinal because I get horribly nauseated with a general and because I hate the sore throat that follows being intubated during general anesthesia. My uro keeps me in the hospital overnight for pain control and a continuous bladder irrigation.

I have now had 34 hydros and am planning for #35 right now.

Donna

[Alyson]

About travel, I am going on Royal Caribbean July 20! Liz, what list did you give your travel agent? I mean, did you give a list what you CAN eat or what you CAN'T? I definitely want to do that. I cruised Carnival last year and didn't know I could give them a food list! I've heard Royal Caribbean is great and I can't wait!,
:cool: Also, when I'm in the car, I never, ever wear jeans or tight clothing. It's always sweats or something loose. Since buying the IC pillow, I can't go anywhere without it. It's definitely worth the money! I, too, take my own spring water with me and make frequent stops!
About the hydro, I just had my third hydro, but it was the first time I've had a spinal block. I was really scared of it, but I'll never do it under general again. I was in sort of a "twilight" so I didn't know what was going on. Under general, I have lots of pain in recovery. With the spinal, the pain was cut at least eighty percent.
Good luck!
Alyson

[liz2]

I gave them a list of CAN and CAN'T. I simplified and included my sometimes items under either can or can't, depending on what was more appropriate. The list was faxed by my travel agent to the cruise line ahead of time and to the executive chef on the ship that I would be on. Also I hand carried it and gave it to the head waiter the first night. Always eat in the formal dining room.

As long as an item is going to be on the menu the next day, it can be modified for you. You can get plain pasta from one thing, snow peas, from another, and a steak or broiled fish with butter and/or olive oil from another. I could even pick out the veggies from the steamed vegetables, and they would be steamed separately.

Each night, the head waiter and I would plan the next day's meals--usually just the night meal, because I could always get a plain hamburger and a green salad and fruit at noon. Most of the head waiters knew my diet better than I did. My husband used to laugh because he got to see the next night's menu ahead of time.

The head waiter also had my fruit lined up. Royal Caribbean has a delightful gourmet mozzarella cheese made from water buffalo that I could eat. My head waiter and waiter also would check out the fruit in the informal dining room and occasionally found pears there for me that they saved for my night dinner.

At breakfast, I ate a plain omlet, bread from the bread tray (ask what each kind is), and had fresh fruit--honeydew or blueberries--or a little apple juice. Check the apple juice brand, because I noticed they were using Minute Maid that was naturally sweetened, and it is all right for me. Your waiter will gladly bring the can for you to check ingredients. Occasionally, I ate cottage cheese. And once I got brave and ate blueberry pancakes with butter only.

The formal dining room staff was actually waiting for me both years that we have sailed with Royal Caribbean.

To complicate thing more, I am diabetic.

At the end of the cruise, we generously tipped the head waiter, waiter, and assistant waiter.

Ask you cabin attendent to bring a case of Evian water if your cruise is long, if not then just ask for an extra bottom of Evian to be placed in your cabin each night. Yes, there is a charge, but it is worth it. You can get Evian charged to your account in the dining room, too. Also when you get off of the ship, you can usually find Evian.

You will laugh at this. Since our cruise was 12 days this year, I did get the case of Evian--which I didn't on a shorter cruise. The cabin attendent put the case under the bed and pulled my daily supply from underneath the bed. I never had to bother with it. On a shorter trip, when I didn't get the case of Evian, I kept a tally myself of the number used. The cabin attendent made no mistakes.

Where are you going? And what ship? I hope you have as much fun as I did both years. We are in the process of booking another cruise.

[DawnsRuby19]

Donna-Have you tried the elmiron treatment yet? My uro had my do about 5 of those, it's done the same way as the DMSO, but it seemed to help me out a lot more then the DMSO.. Ive only had two hydros, the first time they didnt cath me after wards and it hurt so bad to urinate for 2 days afterward. I got scared everytime I had to go, because i didnt want to feel the pain. The second time they cathed me, and that seemed to work a lot. I wish that being cathed wasn't so bad for IC patients. It feels so nice to be able to go shopping with one in and not have to worry running out of the store for fear of having an accident and at the same time feeling like people think you are stealing from them because you all of a sudden up and leave quickly.

[Romans8:28]

Thanks All The Great Posts! I'm Getting Ready To Take A 10-12 Hours Trip To See My Son At College..., Wants Us To Meet A Special Friend.., He Will Only Have Four Days Off Till Next Christmas But We Are To Leave The Day My Cycle Starts:(!!! My Doctor Is Really Concerned About Me Going Too!!
Plan To Use All Suggestions Here Plus May Take A Cooler Of Ice Pack Too!