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NEED SUGGESTIONS FOR TRAVEL AND FOOD
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Ulcerative Colitis
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pltt19
Regular Member
Joined : Jan 2014
Posts : 156
Posted 9/6/2014 3:25 PM (GMT 0)
Ok, Uc'ers come through for me on this one!
I'm going on a trip to the big city, as in NY all the way from San Diego.
I'm taking this trip inspite of my body feeling as though it wants to sabatage my trip. I am in semi remission and
Hoping my meds hold me together like glue. uceris, Aprisso, mesalamine enemas.
I have been experiencing some cramping, some blood ( not nearly as bad as we know it gets). Yet still a warning sign for perhaps more to come.
I'm well aware that stress may also do me me in, but non the less I am going and I'll not be deterred! I will be there a month, so I can get some down time for bad days.
I need suggestions for travel food while in the plane, train, car.
One of the places I will be going with hubby is Little Italy, but guess what? I have no intention of eating there. I will let hubby enjoy but for me, it may be the "kiss of flare".... been there, done that!
I want to Slurp some KAOPECTATE, drink water, and eat super light while traveling in the trains and subways.
I'm scared but marching forward!
ALL suggestions appreciated for a hopefully successfully adventure!
Especially for quick bland carry with you foods
Please share with me any advise and thoughts. I need your support
UCandMe
Veteran Member
Joined : Mar 2013
Posts : 589
Posted 9/6/2014 3:38 PM (GMT 0)
What is your current diet consist of? What are your restrictions?
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 9/6/2014 3:55 PM (GMT 0)
Sounds like a fun trip, I hope you enjoy the big apple and forget about
uc.
If diet effects your uc, then bring safe foods with you, and buy food at grocery stores on your travels. It can be tempting to eat a lot of junk, fast food while traveling and some with uc suffer for it. Diet is very individual with uc, you need to know through a food diary what is safe to eat and what is not. Bring healthy snacks, pre-make meals and eat them rather than travel food at risky restaurants. Picnicking at parks is always nice.
You seem to be familiar with traveling with uc, eat light, skip meals in the early am (for some eating causes the bowels to move), skip caffeine (if it bothers you), skip alcohol (if it bothers you), and bring some anti-diarrhea medication (e.g. Imodium) as it slows down the intestinal-tract and reduces urgency. It cannot hurt to have an emergency kit, a ziplock bag in your purse with wet wipes, extra tp, and a change of underwear just in case the worst happens. There should be lots of bathrooms in the big city, but being prepared is always recommended.
imagardener2
Veteran Member
Joined : Jan 2010
Posts : 5896
Posted 9/6/2014 4:16 PM (GMT 0)
Water, water, water. Make sure you have the size bottle that is allowed. I found dehydration is the biggest problem in traveling, going without my OK food is do-able while flying but good water is really important.
I also like to carry a multi-box pill container with: Immodium, unflavored Pepto-Bismol caplets and Bentyl (Dicyclomine generic). Makes my gut almost bullet-proof and helps my mental state knowing I have it.
ipoop had other great ideas.
Food is so individual, you should know what calms you or what aggravates your gut, right?
Then a iPod with either calming semi-hypnotic music or your favorite soothing music to damp down the stress of being cooped up. And if it's a non-stop (long) flight maybe some Benadryl to create sleepy time.
The biggest area of stress in air travel for me is getting to the airport and checking in, after that it was easy. Bon voyage.
pltt19
Regular Member
Joined : Jan 2014
Posts : 156
Posted 9/6/2014 7:58 PM (GMT 0)
Thanks all!
I'm a gardener2.. You are so right about
the water which I am so bad at and should be doing more
Here's one challenge.
Have to visit te 9 -11 museum to pay my respects.
I have heard that no restaurants in the area will allow you to use bathrooms
I have been told to expect long lines near the museum inspite of having to make reservations in advance. No
Chugging water during that time.
In addition I'm scared about
no bathroom availability for our wonderful disease. No eating that morning for sure!
I follow the SCD diet but nothing on it allows you an easy prep, other than bananas for travel.
Sooo I think Cheerios ( the bland ones) water, and perhaps a banana will suffice on the NYC trips. And of course my favorite flavored kaopectate before leaving from my house rental for the day.
I want to give myself every chance to enjoy this trip.
imagardener2
Veteran Member
Joined : Jan 2010
Posts : 5896
Posted 9/6/2014 10:48 PM (GMT 0)
This was the first one I found. There are other toiletfinder sites. Check this out.
nyrestroom.com/
MONKEY10
Regular Member
Joined : Jul 2014
Posts : 136
Posted 9/7/2014 1:15 AM (GMT 0)
just to give you a little security...try pull ups... easy for a quick change just in case. I keep 2 in my purse... esp when not sure about
bathroom
locations. Some are really thin and not noticeable.
Have a fun and safe trip
pltt19
Regular Member
Joined : Jan 2014
Posts : 156
Posted 9/7/2014 1:38 AM (GMT 0)
Thanks, I have the thick Assurance ones... Never had to use them yet, although I have worn them plenty of times!
A girl's got to do what a girl's got to do!
Imagardner2
Thanks fr the bathroom site. I checked out a few more, charmin has an app but though I did a search for 1 Albany ( the address for the trade center) nothing comes up!
I'll call the museum if I have to and try to get the real scoop on what's up!
By the way, I have been getting really bad headaches going out in the sun on my meds, and feeling nauseous . Can't take the heat anymore. Anyone else?
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17890
Posted 9/7/2014 1:50 AM (GMT 0)
NY is usually pretty good. Although you're on foot a lot, there are a lot of places with bathrooms. Even if sometimes it may require buying a coffee or something. Usually starbucks and McDonalds are free. Also I know barnes and nobles used to have bathrooms for public use - are they still around? I Hope you have a drama free trip and enjoy yourself :)
UCandMe
Veteran Member
Joined : Mar 2013
Posts : 589
Posted 9/7/2014 1:53 AM (GMT 0)
I think you can get a card to carry with you from you GI and establishments legally must let you use the restroom.
I also cannot tolerate the sun. Maybe you could use an umbrella to block the sun or more fashionable a hat.
Staying hydrated is a must. If the sun drains you I use a product called recoverors that you can find on amazon. They are hydration packets you add to water.
beatinguc
New Member
Joined : Sep 2014
Posts : 1
Posted 9/7/2014 1:53 AM (GMT 0)
Dear pltt: When I travel I always rake immodium. It helps fast. I had my first entyvio infusion on 8/29/14. Not much has changed but they said it would take some time. Going for 2nd infusion 9/12/14. Good luck and enjoy your trip. Monarchy
UCandMe
Veteran Member
Joined : Mar 2013
Posts : 589
Posted 9/7/2014 2:10 AM (GMT 0)
I am not a SCD expert ,but had a few possible ideas.
All natural fruit leather
Unsweetened apple sauce.
Almond butter packets.
I've seen a beef jerkey made with cranberries.
I've made crackers with ground sunflower seeds that you make a paste of and bake.
Pistachios
pltt19
Regular Member
Joined : Jan 2014
Posts : 156
Posted 9/7/2014 2:44 AM (GMT 0)
Thanks !
Those are great options!
I will try your sunflower seeds, and I will bring a few
cups of unsweetened apple sauce.
Also I just found a recipe in the BREAKING THE VICIOUS CYCLE SCD book for a Granola bar...still on the fence on that one.
I don't usually have problems with nuts but hummm...don't want this to be the time. I still have another 2weeks before I go, so I can make the recipe tomorrow and try it out....
I have also packed a priority flat rate box with mesalamine enemas and am sending them ahead. My husband is sending his golf clubs, and I get to send my meds !
pltt19
Regular Member
Joined : Jan 2014
Posts : 156
Posted 9/7/2014 3:06 AM (GMT 0)
Thanks everyone for these suggestions! They are REALLY helpful!
I knew I could count on our community.
I'm going to get those hydration packs frm Amazon.
I'm sure we have all taught each other some new tricks to survive with this as well.
I'm so grateful for the support.
My husband who is my greatest care giver, told me that he was so relieved that I have found a place to express myself, get support, share the symptoms, ask for, and get advise.
I was asked by the Crones Uc foundation to fascilitate a group in our area. I was very hesitant as I don't like organized programs that don't allow people to REALLY express their frustration, brainstorm, and actually "get real"
.... touching only the surface with niceties.
But when I get home , I may try to get more involved.
Not sure yet, this has been such a Positive, honest, raw experience with this site, what could more can I bring to the table?
I'm also going to ask my GI to pass this site unto other frightened, confused, new, young, and old people like us!
UCandMe
Veteran Member
Joined : Mar 2013
Posts : 589
Posted 9/7/2014 3:07 AM (GMT 0)
http://recipes.sparkpeople.com/recipe-detail.asp?recipe=519517
Here is a similiar recipe I used. You can add allowable seasonings.
Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2780
Posted 9/7/2014 5:12 PM (GMT 0)
There is a fantastic public bathroom behind the library, by Bryant Park. It has both a security guard and a cleaning person there all the time, so it is absolutely safe and pristine. It was our favourite place to go the bathroom when we were in NYC just a few months ago.
pltt19
Regular Member
Joined : Jan 2014
Posts : 156
Posted 9/7/2014 8:50 PM (GMT 0)
Hi Serenity Now
Sorry to sound ignorant, and I have not checked a map yet, but is Bryant Park near the World Trade Center?
UCandMe
I'm going to try the recipe tomorrow! Love the Sparkpeople site
I've been there many times.
Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2780
Posted 9/7/2014 9:54 PM (GMT 0)
No, Bryant Park is not near the WTC. WTC is in Lower Manhattan, and Bryant Park is in mid-town (Times Square, etc).
There was a Mcdonalds near the WTC where we were able to use the bathroom. It was in the upstairs. Not the most pleasant bathroom, but at least it was free to go up and use it (unlocked so you don't have to ask anyone for a key or anything).
Just did a quick google and I'm quite certain it's this one: 160 Broadway (between Cortlandt & Liberty).
There must be other bathrooms, though, so I would check that app someone posted above. Wish we'd had that when we were there.
pltt19
Regular Member
Joined : Jan 2014
Posts : 156
Posted 9/7/2014 10:20 PM (GMT 0)
I have tried some of the apps. Not a total fan. Certainly better than nothing but unreliable.
Thanks for the McDonald's tip!
Today I worked on finalizing my rental house ( its the neatest place tucked in the woods of this great quaint town garrison Ny )
Gathered all my meds and packed them for shipping,
Will see my GI on Thursday and try to get a prescript
ion for stronger meds in case...
So far my cocktail of Apriso, mesalamine enemas, Canasa, and Uceris are hanging in there.
But having a little blood lately mixed with some diarehea and cramps has me a touch concerned
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17890
Posted 9/7/2014 10:27 PM (GMT 0)
garrison is beautiful but quite far from NYC I think. Do you have a rental car or will you be taking trains? I love Rhinebeck NY, it's a little ways but such a great upstate town. It sounds like it's going to be a wonderful trip. Have you tried cortifoam enemas? Sometimes that can wipe out blood...
pltt19
Regular Member
Joined : Jan 2014
Posts : 156
Posted 9/7/2014 11:23 PM (GMT 0)
My husband is from the Hudson Valley area, and I lived in Higland Mills NY. For several years. We ave even in San Diego for over 30 years now and forget a lot about
the city!
There is a a wonderful train station in Garrison that will drop us off at Grand Central, and from there we will be in Manhatten at least 3 times.
No, I never knew a foam enema existed! is t mesalamine?
I will ask Doc about
it Thursday.
It will be a wonderful trip! Apple picking, autumn leaves, deer in the woods, historic sites, West Point, maybe a play ( they are now around $100.00 ea!) maybe we will get lucky and find the discount tickets.
The reason I picked a long vacation is to allow for those potential bad days but still allow us to enjoy when I feel well.
I was "let go" from my job 4 years ago because I could not be relied on. I understand, it was close to my retirement anyway.
I'm an interior designer and well, with this disease I am neither reliable or want to impose on my clients bathrooms!
I looked forward to retirement. Worked very hard.saved a long time to able to enjoy... Can't do Europe, too risky, too far.
Maybe South America, and the good ole USA for as long as I am able, I will keep trucking! My brother in law passed away from cancer last year on his first month of retirement!
So with hubby, diapers, meds, more meds, and a strong will away we go!
Does the foam work well for you?
Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2780
Posted 9/8/2014 12:22 AM (GMT 0)
Have a great trip. Hope it all goes well - let us know how it went!
pltt19
Regular Member
Joined : Jan 2014
Posts : 156
Posted 9/8/2014 12:57 AM (GMT 0)
Thanks!
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