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I just made a trip to the Grand Canyon. I was off of my Ofev for 10 days. According to my Doctor it was not a big deal to get off of it because l have no other underlying medical problems. She said if l were on any meds dealing with an infection, that would be a different story. Overall I am healthy, except for the PF. I am not downplaying this terrible disease but l am not going to let it (and the Ofev) rule what time l have left. The GC trip was on my bucket list and l was determined to fulfill that wish early enough to enjoy doing it.
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My husband took breaks any time he needed a higher quality of life. Holidays as well as mental health breaks. Did them on his own as needed, maybe three times the 18 months he was in it, each time hoping it would reset his system so he’d be cured if the gastro symptoms, and that never worked. He finally went of it over the summer and is much happier. He never bothered to ask his pulmonologist beforehand, since he’s felt he should be the one in charge of his quality life, but the doc was always supportive after the fact.
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Do you drink milk or use milk products? I have found they are a culprit, for me, with Ofev. Using lactic free milk does the trick. Just something to check out. I’m a retired therapist and used to work with HIV folks, 20y/o. , back during the days of large “cocktails” and severe diarrhea. They would take 2-3 Tbl. of ground whole husk psyllium. It sounds counter to logic, but works! Check it out, but slowly increase it over a week +. If it helps, great. If not, not.
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I have always been a milk drinker and I find that it doesn’t give me any problems with the Ofev. Another PF patient told me the same thing about milk and dairy products. I tolerate them very well with the Ofev. I also find that Metamucil is very effective in helping with diarrhea. It was unbelievable to me but it really works.
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It took me about a year to minimize the Ofev side effects. What helped me the most was giving up coffee. It seems that the acid, not the caffeine, was the major culprit.
Diet wise, tart or sour tastes, not spicy, would bother me. Dairy does not bother me at all.Took a while to figure all this out but we traveled when we could.
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My husband and I (both in our 70’s) like to travel a lot! I do not have IPF but have Hypersensitivity Pneumonitis. I have been on Ofev 2.5 years and think I have a decent routine now for dealing with possible symptoms. One (which others have mentioned) is some kind of fiber..whatever works best for you. I take a small amount (1 tsp) of Miralax each morning and it’s easy to travel with because it’s very fine powder so I can pack several weeks worth into one small supplement bottle. Since I started on the Miralax, my main symptom with Ofev is nausea rather than diarrhea so I still find that I have to go off the Ofev for a few days when traveling. I am not willing to risk taking it before a long, overnight flight! And I find that it’s too difficult for my body to deal with jet lag and the Ofev, so I wait about 3-4 days after arriving at our destination, then I resume my Ofev routine. I also take some kind of ginger …tablets to suck on or something to help with nausea…otherwise I’m just snacking all day to keep my stomach full and that’s not ideal either. I think we all have to experiment to see what works for our own bodies!
Happy travels to all!
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I took two trips to Europe this last summer while on Ofev. Here is what I did.
Every time I took Ofev I took a half of an imodium.
Then I carried in my pocket at all times 2 imodium tables, 6 125mg of Gasx, and 3 baby wipes. Once or twice I had to use the Gas and an imodium tablet. I would also head to the restroom at the very first sign of possible bowel movement. Was able to travel by times for 14 days each with minimum of trouble.
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