[Libby]

@williesmom

Hi Kathy,

I was so interested to read your note about your physician recommending a fiber supplement to help counteract the diarrhea.  I have had episodes of IBS for a number of years and I used to take fiber all the time.  Since I haven’t needed it lately, I completely forgot that it can be very beneficial to slowing down your digestion and helping form normal stools.

I wanted to ask if your doctor recommended a specific brand or type of fiber?  I just did a bit of reading on the subject and there are so many to choose from and they all use fiber derived from different sources — psyillium, methylcellulose, inulin, etc.

Any help is appreciated.  Thanks so much!

Libby Fisher

[Libby]

Charlene,

Thank you for that reminder about the sublingual Imodium.. Can you purchase it right at the drugstore or Target kind of store?   I get the picture from all the various postings that living on these drugs is a constant adjustment process!  And everyone’s reaction is completely different and we all have such different symptoms from day to day.  Quite a challenge!!

 

Libby

 

[Libby]

One more thing to add to my post about preventing or combating diarrhea.  My pulmonologist told me to not be afraid of taking the Imodium.  She said to start out taking it regularly and then see how I reacted.  So for the first 3 weeks, I have taken 1/2 Imodium with each OFEV and it has worked really well for me — no diarrhea at all – – it has not interfered with my being normal either.  Now after 3 weeks, I am finding I don’t need that 1/2 tab twice a day, so I’ll experiment with taking it just once a day, or not at all.  I am fairly careful of what I’m eating now, but can eat salads so I consider that a good sign.

I guess my doctor’s point was : don’t wait to take the Imodium when you already have a problem.  it’s much easier to prevent diarrhea that it is to curb it once it starts.

Also, I am not a coffee drinker (wish I were but my stomach can’t take the acid)… several people have mentioned lots of coffee being helpful for liver function.  I do know that lots of coffee can also be laxative, so if you’re having any issues where you don’t want a laxative, it would be best to not overdo the coffee.

[Libby]

I am wondering how common it is for the OFEV to cause blood pressure to rise?  I’ve been on OFEV just about 3 weeks now and in the past 4 days, my BP is going up.  It’s the weekend so I’m not going to panic and call urgent care .. .just took some baby aspirin and will contact the doc on Monday.  But is this common?  My BP has been in a very good range my whole life.

Thanks!

[Libby]

I have been taking OFEV 100 mg for 3 weeks and am doing better than I anticipated.  I normally have a very sensitive stomach, so I was prepared for the worst — stocked up on plenty of Imodium, saltines, gingerale, etc etc. I think because I have dealt with IBS in the past, I might be a little more familiar with helpful supplements than most people who have never had digestive issues would be.  Years ago, when we lived near Wash DC, I shopped at a pharmacy near NIH with trained pharmacy techs who dispensed all sorts of helpful advice re supplements for my problems.  I think the fact that I’m following that advice now is what has made the introduction of OFEV easier.

1.  Take Saccharomyces Boulardii … it is a yeast derived probiotic, the ONLY supplement that got my husband through a very difficult antibiotic induced bout of C-Diff.  It is the main probiotic in Floraster, but much cheaper to just buy it from Amazon in the pure form.  I have used the Jarrow brand for years.  Just one capsule after dinner does the trick.  During bouts of diarrhea from IBS in the past I took 2 capsules twice a day.  This supplement is a KEY!!

2.  Another product I have taken for years is called GI Encap made by Thorne (also on Amazon).  It has ingredients like Marshmallow extract, aloe vera gel and others that soothe and coat your stomach lining.  Dosage is very flexible depending on your symptoms — 2 pills taken along with the OFEV seem to really help coat my stomach and prevent any distress.

My main symptom is nausea or queaziness.  I’m thankful I still have a good appetite, but I have to be careful not to forget that snack mid-morning and mid-afternoon, otherwise I feel like I’m going to crash — no energy, stomachache, etc.  Cracker with peanut butter works well, a portion of an energy bar,  or part of a banana helps too.

If I think of more helpful hints I will add to this post.  We’re all struggling with this and I am so thankful to find all the support and suggestions on this forum.  Thanks to everyone!

 

[Libby]

Thanks for the helpful hints!  I’ll let you all know how it’s going soon!

[Libby]

I will be starting OFEV this week.  Of course I am a bit anxious just thinking about all the potential side effects, but I want to get going on the drug so that I can get into a routine, know what foods work best, etc.  My doctor is starting me out on the lowest dose possible, just 100 mg once a day, to make sure I tolerate it.  Does anyone find that the breakfast dose is easier to tolerate, or maybe the dinnertime dose?  Just curious. The Ofev nurse told me that I would need to eat a HUGE breakfast which I’m not sure I can do.  From reading this forum, it sounds like many of you are fine with a banana, maybe some peanut butter?

Thank you.  Any advice and suggestions will be most appreciated as I start on this journey!!