What would you do?

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Risan1808
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Date Joined Jan 2009
Total Posts : 153
   Posted 3/3/2009 9:35 AM (GMT -6)   
Can anyone tell me what they would do if they were me.  The situation is:
 
My husband and I leave in a little over 5 weeks for Aruba.  I was diagnosed with UC on 2/13/09
 
1) Was started on Asacol 2 tabs 3x day.  This was increased on 2/26/09 to 3 tabs 3x day.
2) Still on Rowasa nightly
 
Most of the bleeding has stopped but I"m still having many trips (6-8 day) to the bathroom with serious cramping.  When the cramping starts I usually have less than a minute to get to the bathroom.
 
I will be out of the Rowasa in 10 days.  GI's comment was he wanted to see how I'd do without it.  That scares me.
 
So, based on the fact I am leaving on our dream vacation (for our 20th anniversary) the last thing I want is to be stuck in the hotel room or having to run from the beach constantly to find a bathroom. 
 
I go back to the GI tomorrow.  Would I be out of line asking him to increase the Asacol to 4tabs 3x day and to continue on the Rowasa?  I would be willing to do a "lets try it and see" game when we get back.  I desperately don't want to play it now.  I want to feel better for this trip.
 
What would you do if you were in my shoes? 
Diagnosed Friday, February 13, 2009
Asacol 3 tabs 3X daily
Rowasa Nightly


meikaidi
New Member


Date Joined Dec 2008
Total Posts : 18
   Posted 3/3/2009 9:47 AM (GMT -6)   
Push it! If you don't feel comfortable, let them know. Be honest with him about your recent vacation and that you'd perhaps be interested in trying it after you'd get back. My GI doctor has been very good about my suggestions, as she says...You know your body better than anyone else. If you feel you are not ready, then I hope they would understand your concern. Good luck!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/3/2009 9:48 AM (GMT -6)   
Definitely not! Let your GI know about your vacation plans and impress upon him your need to go fully stocked with medications. Now is not the time to cut back on enemas with your trip in the near future. My GI was always really good about making sure I could travel the few times I felt well enough. He even recommend imodium for slowing down the transit, only while traveling though, and prudently.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


teacupsunderfire
Regular Member


Date Joined Jul 2008
Total Posts : 46
   Posted 3/3/2009 9:50 AM (GMT -6)   
Yes, the Dr. will let you go for another week or so it will not hurt you. I am sure he/she will understand.
Lialda (4 pills/day), Canasa (as needed), 6MP, probiotics, multivitamin


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 3/3/2009 9:54 AM (GMT -6)   
i agree...let your doc know about the trip and that its streesing you out. Make an appt after you return to reevaluate...but don't stop meds right before you leave. do you use imodium? i know some people don't but it's always helped me...when traveling i'llalso always try to hit the head before activities that may make me uncomfortable...in Hawaii we went on a snorkeling trip with about 25 people on one small boat with the bathroom in a center console right in the thick of things...needless to say a xanax would have been great...but the imodium worked like a charm and i made it!

kops2da
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Date Joined Jun 2008
Total Posts : 2865
   Posted 3/3/2009 9:56 AM (GMT -6)   

Ask your doctor about Imodium to take just when you HAVE to - when you know you will be away from the bathroom.  I take it ONLY 1/2 when in this situation.  Be sure it is ok with your doctor and your situation.  Works for me on vacation and temporarily.  Just an idea.

Have a fun trip - I am so jealous!!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone.
Probiotic Align, Prilosec for GERD
 
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/3/2009 9:59 AM (GMT -6)   
Agree, stay on the Rowasa until after your vacation, and ask about increasing your dose (it could be going from 9 to 12 won't really make that much difference).

Ask about taking immodium. On "special" days I use 1/2 tablet and take it after my morning poos are out of the way. It calms things down for most the day, especially important if I'm on the beach! The small dose calms things down but doesn't stop it entirely, because that can feel very uncomfortable.

Also, I would get an Rx for prednisone, not to start taking but just in case for some reason you get worse. If you do, you can always then call your doc and ask how much of it to take but won't have to try to figure out how to get some when you're away from home. I always travel with some, no matter how good I'm feeling.

Have a wonderful time!!
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, trying 15/20 mg. Appt 3/6 to discuss Humira, etc.   


Risan1808
Regular Member


Date Joined Jan 2009
Total Posts : 153
   Posted 3/3/2009 11:34 AM (GMT -6)   
thanks for all your suggestions. I will bring them all up with the GI tomorrow. I haven't heard of the immodium idea but will definitely ask about that to.

Is it to much to ask to just feel good. We've waiting for this trip for a long long time.
Diagnosed Friday, February 13, 2009
Asacol 3 tabs 3X daily
Rowasa Nightly


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/3/2009 12:27 PM (GMT -6)   
Docs usually like to send vacationing patients away with a script of prednisone incase your IBD takes a turn for the worst, because generally speaking, pred makes for a good temporary bandaid, so that's something you may want to stronly consider asking your doc about as well.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


burnabygirl
Regular Member


Date Joined Jun 2008
Total Posts : 205
   Posted 3/3/2009 2:19 PM (GMT -6)   
Have you tried steroid enema before?
Last September I was going 5-8 times a day and Salofalk (Rowasa) enema didn't seem to help much. I was having a vacation in October and I told my GI doctor about it. She switched me to Entocort (steroid) enema which helped me instantly. BM down to 1-4 times a day and no more cramps or bleeding.
I found that upping Salofalk (Asacol) tablets didn't help me at all.
Wish you have a great vacation.
Ulcerative proctitis diagnosed in July 2006. Medications: Salofalk enema nightly.
Remission from Nov 2006 to Oct 2007. Then a bad cold and a bad flare for 1 year till Nov 2008.
Pancolitis diagnosed in April 2008. Current medications: Salofalk enema, Salofalk tablets 1000mg x 2/day, Entocort enema (tapering).
Supplements: Calcium with Vitamin D, Vitamin B Complex, Vitamin C, psyllium capsule (Metamucil) and bee propolis.


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 3/3/2009 2:30 PM (GMT -6)   

I agree w/burnabygirl about trying a steroid enema.  If you're still going 6-8 times a day, it doesn't sound like the Rowasa enemas are working.  I would see about trying steroid ones.  Also, like everyone else suggested plan to take Immodium.  I can take it every day and it works wonders for me.  I still go every morning but I can make it through the rest of the day without any issues. 

Have a great trip!!  I went to Aruba on my honeymoon (8 years ago), it was a great vacation!!


Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
LDN - 2/17/09 1.5 mg.
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 3/3/2009 3:06 PM (GMT -6)   
     I agree with all the above posts.  We cruise once or twice a year and my GI doctor always suggests taking the prednisone along..just in case.  He hates me taking it but to be on the safe side and to put my mind at ease, I always take it along.  Also, try to get a script for the cort or Rowasa enemas.  I have never taken Imodium, but sounds like a good idea.  Try not to stress, that will only make your condition worsen.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Howright
Regular Member


Date Joined Oct 2008
Total Posts : 86
   Posted 3/3/2009 3:15 PM (GMT -6)   

 

I agree with the others, let your doctor know your plans and either get on Prednisone now so you're somewhat healthy before you leave or something else that will help you improve. 

I went to Aruba in December and had just had a big blare in October.  I went on prednisone in October and by the time we left I was tapering and still had to go occasionally but didn't have the urgency. 

Also, I've gone on vacation either during or following a flare in the past and I always see improvement during my vacation regardless of what I eat.  I think it's because I'm so stress free on vacation and when you're there it's so easy to get your mind off this pain in the backside disease.

Good luck and have fun, Aruba is a fun place to visit!! 


 
Diagnosed January 07 - but realize I've been living with minor flare-ups for 10+ years. 
 
Asacol 3 pills/3 times a day.
 


Howright
Regular Member


Date Joined Oct 2008
Total Posts : 86
   Posted 3/3/2009 3:17 PM (GMT -6)   
 
Oh and take prednisone with you . . . I always do when I'm leaving the country, that way if things for some reason get bad I can start on it to get some relief. 
 
Diagnosed January 07 - but realize I've been living with minor flare-ups for 10+ years. 
 
Asacol 3 pills/3 times a day.
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30611
   Posted 3/3/2009 4:08 PM (GMT -6)   
I disagree about the pred script....go with the enemas, nightly. If you're improving, you'll continue to do so. Remember, that stress will add to your symtoms...maybe once you're on your holiday you'll start to feel better.

Of course, I'm biased and am pretty much antipred for just in case. You don't have enough experience yet to say whether you need it or not...

You could ask for steroid foam enema for a boost in case...but not pred. Know what you're asking for.

Keep with what you're doing...at least, that's what I'd do.

Let us know how your appointment goes.
quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Risan1808
Regular Member


Date Joined Jan 2009
Total Posts : 153
   Posted 3/3/2009 7:09 PM (GMT -6)   
thanks. I really hesitate with the prednisone. It does horrible things to me. If I took that on vacation I'd probably come back divorced. It makes me really mean...not to mention all the other side effects. :)
Diagnosed Friday, February 13, 2009
Asacol 3 tabs 3X daily
Rowasa Nightly


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/3/2009 8:34 PM (GMT -6)   
Don't take it, just take some with you. Just in case.
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, trying 15/20 mg. Appt 3/6 to discuss Humira, etc.   


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/3/2009 10:32 PM (GMT -6)   
Any good doc would rather have you take some pred with you rather than not...guess you have to decide what's worse, crapping your pants all over the place in public or mood-swings, not to mention pred does not necessarily cause the same side effects each time you're on it, there are even times when you may not even experiance any side effects or at best very minimal side effects. And if you have IBD, you'll know when and if you need to take it, it's called "a gut feeling".

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/3/2009 10:37 PM (GMT -6)   
Q, just because you're anti-pred, doesn't mean it's not a life-saver for many, pred as bad as it "can" be has given a lot of relief for those who have been at their wits end with their disease.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


gurgling tummy
Regular Member


Date Joined Aug 2006
Total Posts : 166
   Posted 3/4/2009 4:59 AM (GMT -6)   
Just a quick thought for the trip, when you check in for the flight, let them know that you have a condition and that you need to be on the isle as close to the restroom as possible. They have never had a problem doing this for me and it has saved me numerous times and cut out all my stress of flying with the UC. I am unbelivably jealous and I hope that you have the amazing trip that you are dreaming of. Just be cautious of where the bathrooms are just in case but try to enjoy the trip as much as possible. Like everyone has said, stress makes the flare so much worse. I wish you the best!!
Em
*~~*Emily*~~*
Diag. Aug 06 (Proctosigmoiditis), finally diagnosed with Fibromyalgia 12 August 08, Paxil (1 a day) for Depression, anxiety
Gabapentin (still working up to mx dose), Ambien (1 50mg a night), Venlafaxine (2 a day), cyclobenzaprine (1 10mg tab a night), Tramadol (3 50mg tabs every 4 hours), Indomethacin (1 50mg cap every 3 hours), Tylenol Extra strength (2 500mg tabs every 4 hours).
Getting ready to start Azathioprine, we'll see how that goes.


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 3/4/2009 6:52 AM (GMT -6)   
Even if I am not in a flare I don't go on any trips without my Lomitil. It is a great stress reliever just knowing I have it. I split them into halves and if I really don't wanna go to the toilet for 4-6 hours (airports/airplanes) I take a whole one.
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


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/4/2009 9:58 AM (GMT -6)   

quincy - I have to add to the comment about prednisone - I resisted the idea and still believe if anything else had worked I would not have taken it - BUT - it is the only thing getting me into remission after almost a year of bleeding, cramping, diarrhea, etc.  Just have to give in and trust my gastro doc to help me any way he can.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone.
Probiotic Align, Prilosec for GERD
 
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/4/2009 10:13 AM (GMT -6)   
As crowded as commercial flights are now, if you don't choose your aisle, close-to-the-bathroom seat when you book your ticket, you will be out of luck. They will not bump a passenger out of a booked aisle seat for you.
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, trying 15/20 mg. Appt 3/6 to discuss Humira, etc.   


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 3/4/2009 10:28 AM (GMT -6)   
Another vote for a low to moderate dose of pred with a quick taper. I suffered through my first anniversary trip with a mild flare and felt miserable. After we returned home, I "gave in" and started the pred and it was like flipping a switch - I felt so much better. I was kicking myself for not doing it before the trip.

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.
 
 


potato
Regular Member


Date Joined Jun 2008
Total Posts : 281
   Posted 3/4/2009 1:29 PM (GMT -6)   

After just returning home from a road trip vacation to Disneyland and Las Vegas, which I began in a semi flare and seem to be now in a full flare, I discovered that during the vacation, I did well.  The time I spent in Disneyland and Vegas were surprisingly good and fun.  Only the two days driving home were more difficult because there were such long distances between bathrooms. 

I think flying should work out well for you.  And it can't hurt to ask about an aisle seat, whether the flight is booked or not.   

I took plenty of generic cortenemas and used them nightly.  I also took lomotil, as Dr. A suggested.  It works a bit better for me than immodium, and I also take 1/2 tab at a time.  You'll need an RX from the doc for it. 

I know it's easy to say (write) but try to focus on the positive parts of the trip... that beach!  The sun!  The warmth! 

It's easy to forget that we have this disease but it doesn't have us. 

Carpe diem!

potato

 

 

 


Potato...  Female, 58, dx 11/07 mild left sided ulcerative colitis (50 cm)
asacol 3 3x a day, cortenema (generic) every third night rowasa
culturelle, benefiber wafers metamucil wafers, activia yogurt, spinach & sunflower diet, primadophilus reuteri, Centrum, Vitamin E 400 mg
omeprazole 2xday, oxazepam when needed, lomotil or ImodiumAD when needed
Yoga, meditation, The Work by Byron Katie, exercise at least 5 days a week
 

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