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Posted 10/6/2014 4:27 PM (GMT 0)
I'm going on a family holiday to Bali on Saturday, but I still have UC symptoms such as bleeding, loose stools, occasionally rushing to the toilet, extreme stomach cramps and getting up during the night.
Is there anyone who could give me some advice for when I go on holiday to try to calm my UC symptoms down?
I was doing extremely well for about two months after having 2 doses of infliximab, but then my doctor took me off of pred after being on it for about 9 months and after my last infusion it's all gone downhill.. HELP!!
thanks I'm advance,
Emma x
Posted 10/6/2014 4:42 PM (GMT 0)
Are you intolerant of mesalamine? If not, get yourself some enemas and start using them now. Otherwise I think you are SOL. You can get yourself some liquid meal replacements and go on a strict bowel rest between now and next week, but I predict a pretty miserable vacation.

I went to Mexico in 2010 when I was doing pretty well but still having problems with lack of appetite, fatigue and soft stool. We were in an all-inclusive resort where I drank no alcohol and pretty much ate none of the food they served except the mildest fish and the steamed veggies. I guess I had an ok time.
Posted 10/6/2014 6:00 PM (GMT 0)
I would get on the phone and speak with your GI immediately, seriously, you need something before you go away, otherwise I agree with kazbern you are going to feel wretched.
Posted 10/6/2014 6:40 PM (GMT 0)
Sounds like the infliximab really isn't doing anything. If it were me I would just go on pred again to get you through this holiday but you can't stay on it long term. Just because you get on it doesn't mean you have to be on it for months if you don't want to be. For those where pred works, I think it is a good idea to take if for 2 -4 weeks every once in a while to get you through a vacation or something similar as long as you don't make it a long term treatment plan.
Posted 10/7/2014 1:14 AM (GMT 0)

garylouisville said...
Sounds like the infliximab really isn't doing anything. If it were me I would just go on pred again to get you through this holiday but you can't stay on it long term. Just because you get on it doesn't mean you have to be on it for months if you don't want to be. For those where pred works, I think it is a good idea to take if for 2 -4 weeks every once in a while to get you through a vacation or something similar as long as you don't make it a long term treatment plan.

infliximab is the only treatment that has temporarily worked for me, so far! thank you for your advice :)
Posted 10/7/2014 1:15 AM (GMT 0)

kazbern said...
Are you intolerant of mesalamine? If not, get yourself some enemas and start using them now. Otherwise I think you are SOL. You can get yourself some liquid meal replacements and go on a strict bowel rest between now and next week, but I predict a pretty miserable vacation.

I went to Mexico in 2010 when I was doing pretty well but still having problems with lack of appetite, fatigue and soft stool. We were in an all-inclusive resort where I drank no alcohol and pretty much ate none of the food they served except the mildest fish and the steamed veggies. I guess I had an ok time.

I have got some Mesalamine enemas left over from when my doctor was getting me to take them, but unfortunately, they do me no goood :(
Posted 10/7/2014 2:58 AM (GMT 0)

emma99jane said...

kazbern said...
Are you intolerant of mesalamine? If not, get yourself some enemas and start using them now. Otherwise I think you are SOL. You can get yourself some liquid meal replacements and go on a strict bowel rest between now and next week, but I predict a pretty miserable vacation.

I went to Mexico in 2010 when I was doing pretty well but still having problems with lack of appetite, fatigue and soft stool. We were in an all-inclusive resort where I drank no alcohol and pretty much ate none of the food they served except the mildest fish and the steamed veggies. I guess I had an ok time.

I have got some Mesalamine enemas left over from when my doctor was getting me to take them, but unfortunately, they do me no goood :(

How long did you try the mesalamine enemas before determining they do you no good? It took me around 2-3 weeks to start noticing changes but I'm now the best I've been on UC in over 2.5 years, definitely because of the Rowasa.
Posted 10/7/2014 7:40 AM (GMT 0)

Alex917 said...

emma99jane said...

kazbern said...
Are you intolerant of mesalamine? If not, get yourself some enemas and start using them now. Otherwise I think you are SOL. You can get yourself some liquid meal replacements and go on a strict bowel rest between now and next week, but I predict a pretty miserable vacation.

I went to Mexico in 2010 when I was doing pretty well but still having problems with lack of appetite, fatigue and soft stool. We were in an all-inclusive resort where I drank no alcohol and pretty much ate none of the food they served except the mildest fish and the steamed veggies. I guess I had an ok time.

I have got some Mesalamine enemas left over from when my doctor was getting me to take them, but unfortunately, they do me no goood :(

How long did you try the mesalamine enemas before determining they do you no good? It took me around 2-3 weeks to start noticing changes but I'm now the best I've been on UC in over 2.5 years, definitely because of the Rowasa.

I was using them for just over a month until I saw my doctor again, and there was no changes so he told me not to bother with them anymore and to try something else
Posted 10/7/2014 4:46 PM (GMT 0)
For traveling Internationally in case of "Emergencies" you should ask for a script for Xifaxan (traveler's Diarrhea) for food poisoning and some predisone to help with the UC for a flare.

The other thing is your UC, you need that treated to be as close to remission as possible before traveling. If Mesalamine isn't working then maybe you need a stronger enema like a steroid enema. You may also want to consider increasing your dosage of Remicade or shortening the weeks between infusions. I needed 10mg/kg every 6 weeks for Remicade to work for me.
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