Need travel and prednisone advice

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Discouraged
Regular Member


Date Joined Mar 2007
Total Posts : 54
   Posted 3/23/2009 7:05 AM (GMT -6)   
Hi!  I am hoping to get some good advice here, as my doctor is not much help. 
I am chaperoning a trip of kids to Memphis, TN in two weeks.  I live in PA, so it's a long drive.  I am not so concerned about the bus ride because there is a bathroom.  I agreed to do this when I was doing well.  Right now, I am not doing so well.  Not a full out flare, but more trips to the bathroom than I have been having in a while.  I went to my doctor for some help because I cannot pull out of this trip now.  They need a certain amount of chaperones to be able to do the trip..district rules.  Anyway, my doctor says the only thing he can do for me is prednisone because that has worked for me in the past.  He gave me two options..first one is start on 40 mg and then do the taper thing (down 5mg a week), which means weeks on prednisone..ugh!  The other option he gave me was to take 20 mg for 10 days with no need to taper, but he can't guarantee that will work because 20mg may not be enough to get me under control.  I am wondering if anyone here has tried 20 mg and if it worked.  Also, does anyone have any travel advice.  We have days where we leave at 6:30AM and return at 10:00PM on this trip.  I am so afraid of being on a tour where there is no bathroom and I don't know what I will do.  I have already planned to get up two hours before needed to give myself time to go.  Most of my BM's are in the morning. 
Diagnosed with UC (proctosigmoiditis) April 2006
Asacol 1200 mg (3 pills) 3 times a day
Canasa suppositories 1000mg at bedtime
Currently in a flare and taking Prednisone 30 mg per day to taper to zero in about 9 weeks *just had dosage increased to 40 mg because I am not responding* Back down to 30 mg and doing okay..so far
Aciphex
Colazal
Rowasa
Bentyl when needed
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 3/23/2009 7:18 AM (GMT -6)   
I can't help you with the prednisone part b/c I have never taken it but I would ask your doctor for a mild anti-anxiety med (like .25 of xanax). It is just enough to take the edge of, so you stop worrying about the bathroom until you actually need one, but doesn't make you too tired or loopy. I find liquid diets really helpful too so you might want to try that leading up to the trip. Maybe by some canned meal drinks like Mix One or Ensure and have that for breakfast (if anything). If you are going with a big group will the tour be just your school? If so if you are on a tour bus and have to go, ask them to stop at the nearest bathroom. It will be embarassing but you will feel better. Also, with a bunch of kids they have to go all the time too so no one will know if you are stopping for you or if you are stopping for them.

Try to stay in the moment and recognize the difference between wanting to know there is a bathroom and actually needing to use it. I am still not good at that but I know I need to get there too. Also, even though the school requires chaperones for the trip, I still think you could get out of an activity or two if need be. Everyone gets sick. If a kid gets sick you can be the chaperone that stays behind w/ that kid. If there is a particular event you know will be stressful, after you get there, let them know you are going to miss that part. So if you were in Boston for example you could travel the city with the kids but not ride the Duck Boat with them, but be at the pier when they get back. I bet that would be ok. Know your limits and don't be afraid to ask for help.

Finally, are you married? Could your spouse come w/ you or a sibling to be a substitute chaperone if you can't make all the events? Good luck!

Oh, and you might be flaring from the anticipatory anxiety. I have a big trip coming up this weekend (big b/c it is a cross country flight w/ 3 take offs and I am a super fearful flier). I find I am "going" more but I think a lot of it is just nerves.

Oh, and don't forget immodium!


27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 3/23/2009 8:03 AM (GMT -6)   
The last time I had a minor flare, my doc started me at 40 mg of pred with a quick taper. It worked like a charm. And because the starting dose was moderate and the taper was fast, there were no side effects. I'd say the peace of mind in your situation would be priceless.

I also agree with Fitzy that carrying chewable Immodium tablets to take as needed can be helpful, too.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/23/2009 10:56 AM (GMT -6)   
I usually try to get away with taking only 20, and frankly it doesn't work very well. I would bite the bullet and go with 40 since this situation is causing you such anxiety.

I would also wear a panty liner pad, it gives me some peace of mind for some reason even though it probably wouldn't hold a major burst. Sorry, I can't tell if you are a woman or man...but then maybe it doesn't matter really! Immodium, start with one after your morning routine, then take a second if you feel you need to. Try not to take more than you need or that will make you uncomfortable, feeling like you have to go when you cannot.

If you need to stay back from one part of the tour because there won't be any bathrooms available, then just say you are not feeling well and they will figure out how to make it work with the kids, right? You got them there, then take care of yourself.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, down to 10 mg. Waiting for insurance decison on Humira... 


Discouraged
Regular Member


Date Joined Mar 2007
Total Posts : 54
   Posted 3/23/2009 6:41 PM (GMT -6)   
Thank you all for your replies. I am a woman and I do have a spouse. He is going on the trip also. Sadly, this causes him anxiety too. I will give a panti liner a try..just for some peace of mind.
Princesa - How do you taper quickly from 40mg? I didn't know you could do that.
Diagnosed with UC (proctosigmoiditis) April 2006
Asacol 1200 mg (3 pills) 3 times a day
Canasa suppositories 1000mg at bedtime
Currently in a flare and taking Prednisone 30 mg per day to taper to zero in about 9 weeks *just had dosage increased to 40 mg because I am not responding* Back down to 30 mg and doing okay..so far
Aciphex
Colazal
Rowasa
Bentyl when needed
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 3/23/2009 6:48 PM (GMT -6)   
Lomitil, Bentyl, Immodium. I would pick one and use it. It's the ONLY thing that gives me peace on trips.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 3/23/2009 7:03 PM (GMT -6)   
Dr-A, I think Bentyl is an anti-spasmodic so it can be used w/ the Immodium or the Lomitil which are anti-diarrhea.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


Iflyfish
Regular Member


Date Joined Mar 2009
Total Posts : 45
   Posted 3/25/2009 11:08 PM (GMT -6)   
Well - Dicouraged - I'd love to be EN-couraging, but I have to say - a bathroom-less Bus full of kids...with even a mild flair-up - is potential for disaster. After 11 years and several prolonged flair-ups, mild to severe, I have to tell you - 1st I'd cancel out on that trip. They will live without you. If you feel so obligated, along with the suggestions of OTC drugs and uping the Pred (all good ideas...I think) but forget the panty-liner and step into a full-on DEPENDS. I'm a 49 year old married business owner (contractor) and I know that on long drives to job-sites or long trips in the car with my wife,if I'm in 'flair-up mode' I wear one. It was depressing at first - and if you saw a group of men in a 'line-up' - I'd be the least likely you'd pick for wearing an Adult diaper - but trust me. On several situations I would have been humiliated without one - it can be a mess - but much better than the alternative! Lastly - I fold a small garbage liner in my pocket - in case worse-comes-to-worse, I can step out of it and discard it in asecured trash bag.

One more thought; My wife found this at a National Kitchen & Bath Association trade show. Go to www.totousa.com The company is a Japanese manufacturer of toilets, bidets, sinks, and all bath accessories - do a search for their 'Travel Washlet'. A compact device that runs on one AA battery, you fill with water - and it is truly a bidet. It's soothing, practical, a bit bigger than a Blackberry, and excellent if you have a bathroom emergency.
I use mine all the time - and don't ever want to go back to 'wiping' 15 to 20 times a day during flair-ups.
Toto Travel Bidet is a life-saver.
Sincerely wish you the best of luck - whatever you decide.

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/26/2009 6:11 AM (GMT -6)   

IFlyfish - I would like to commend you for facing your situation head on - doing what is necessary and getting on with life.  The travel bidet sounds great!

Keep living - that is what it is all about.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 3/26/2009 9:13 AM (GMT -6)   
I second Kops2da but wanted to clarify that the bus to and from her trip does have a bathroom. She is more concerned about the tours which I guess could be bathroomless bus.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


Howright
Regular Member


Date Joined Oct 2008
Total Posts : 86
   Posted 3/26/2009 2:51 PM (GMT -6)   
 
Honestly, being on a bus with only one bathroom and then on a bathroom-less tour would be enough to make me flare.  I need to know that I have full access to a bathroom at all times or I get some weird anxiety, which in most cases sends me to the bathroom.  I could maybe handle a day or a flight and some bus time, but anything more than that would be too much.  confused
 
Diagnosed January 07 - but realize I've been living with minor flare-ups for 10+ years. 
 
Asacol 3 pills/3 times a day.
 

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