CF stools

azmaveth

New member
Ok, I don't really like talking about my bowel movements and such, but I've found that I must do it in my continued search for answers about my CF. So much of what I've experienced seems to go against "normal" CF. Yes, I know there really isn't any norm and that every case is different. Here's what is currently bothering me about mine:

I've been tested twice for faecal elastase and both times I had very high counts (around 450 the first time and 500 the second). However, I still suffer from floating stools, grease floating on the water, and very foul-smelling stools/gas. I am a small person, only 5'6" and currently 120 lbs, and I find it very difficult to put on or maintain weight. I was absolutely tiny as a child, being 45 lbs at 10 years old and not breaking 100 lbs until my sophomore year or later in high school. When I was diagnosed with CF earlier this year, they started me on Creon and I took it with every appropriate food but it didn't seem to make any difference. After maybe 4-6 weeks I stopped taking it and now only take a couple when I am having particularly fatty foods (which means almost never).

Has anyone else had similar experiences? I've researched the faecal elastase test and it seems to be the new standard way of testing for pancreatic sufficiency. But I wonder if perhaps a different test were done, I would maybe be found to have mild pancreatic insufficiency. My wife and I are no longer in the Marine Corps, and we are waiting for our new medical insurance to kick in before I get any other testing. But the only accredited CF center and CF specialists in Hawaii are at Tripler Army Medical Center, which is no longer available to me as a civilian. So further testing would have to be done either out-of-state or at a non-accredited center.

Thanks for your input and suggestions!
 

Julie7

New member
Doctor ever suggest 3 day fecal fat collection? Basically collect stool for 3 days and keep food diary so they measure what goes in and out. What about measuring your fat soluble vitamins in your blood, another indicator of malabsorption. More invasive option, something called pancreatic stimulation test which is done under sedation during an endoscopy where they measure all five pancreatic digestive enzymes over the course if an hour (after simulating a "meal"). What about lactose intolerance, ever been tested for that?
There is some controversy over fecal elastase versus pancreatic stimulation and whether or not pancreatic stimulation may detect milder insufficiency as you say. You say you didn't improve with enzymes, were you dosed correctly? There are other brands if one didn't work well for you. Hope you find some answers and relief.
 

Printer

Active member
Creon is not a pill that you take with "every appropiate food". Creon is an enzyme to replace that enzyme that is not being produced, in sufficent quanitity, by your pancreace. You need to take Creon, at first bite, with every meal and snack (not fruit). This is not an option, you will do this for the rest of your life.

Having said that, the next issue is the quantity of Creon to take. Start with the amount that has been perscribed. Watch for greasy and floating stool, when this appears increase the Creon in small increments. Wait a few days on that dose. Watch and repeat as necessary.

Your PCP can give you a Rx as and after you adjust to the optimum dose.

Bill
 

Printer

Active member
azmaveth:

Based upon your OP I am suspecting that your not getting good CF medical advise.

Mucus is like a glue and when you swallow it, it will mix with food/stool and together will adhere to the walls of your colon. This will eventually cause an obstruction, pain and waist extention. You should take Mirilax on a regular basis to control this.

You said that you are suffering from foul bad smelling stools, this could be bacterial overgrowth. This can be controlled by DOXYCYCLINE MONOHYDRATE 50 mg tab. 2 by mouth the first day and 1 my mouth for 6 days. Repeat about every 2 or 3 months.

I would suggest that you take my emails to your Primary Care Physician.

Thank you and your Wife for your service.

Bill
 

azdesertrat

New member
I take Pancreaze MT-16 with every meal. I always take it just prior to eating. I'm talking, seconds before I start. Dosage is anywhere from 4 caps with supper, or any large meal. I generally take 3 caps with a sandsich & chips and 1 cap in the morning with a bowl of cereal. This has stabilized my bowel function. Prior to using Pancreaze I had tons of bowel issues, including all the symptoms you are exhibiting. Maybe you should try a different enzyme. For your info; I am 5'6 & currently 125 lbs. I bounce around from 115 to 135lbs. we're pretty much the same size. Best of luck to you, I hope this helps.
 

azdesertrat

New member
As was stated by another poster: one doesn't take enzymes with 'appropriate' foods- they need to be taken every time you eat.
You will not get the benefit of the enzymes unless they are used whenever you eat.
Over the years, I have found a few foods I can eat without enzymes; most fruits & vegetables, dried fruit & a few others.
For the mst part though, I take enzymes with everything I eat & have for as long as I can remember.
I've been at my best since using the Pancreaze though.
 

azmaveth

New member
Thanks everyone for your responses! I misunderstood how to take the enzymes. I thought I only needed them with fatty foods, not everything. Bill, I'll try what you said about dosing and up the dosage little by little until the symptoms go away. Once my new insurance is in place and I have a new CF doctor to see, I'll bring all of this up with them. Julie, I'll ask about the other testing methods. The three day fecal fat collection test sounds like it would be a more accurate way to see what's going on in there. Pat, I'll definitely ask about taking Pancreaze instead of Creon. It does sound like we are the same size with the same symptoms, so it's worth a try!
 

rmotion

New member
Ok, I don't really like talking about my bowel movements and such, but I've found that I must do it in my continued search for answers about my CF. So much of what I've experienced seems to go against "normal" CF. Yes, I know there really isn't any norm and that every case is different. Here's what is currently bothering me about mine:

I've been tested twice for faecal elastase and both times I had very high counts (around 450 the first time and 500 the second). However, I still suffer from floating stools, grease floating on the water, and very foul-smelling stools/gas. I am a small person, only 5'6" and currently 120 lbs, and I find it very difficult to put on or maintain weight. I was absolutely tiny as a child, being 45 lbs at 10 years old and not breaking 100 lbs until my sophomore year or later in high school. When I was diagnosed with CF earlier this year, they started me on Creon and I took it with every appropriate food but it didn't seem to make any difference. After maybe 4-6 weeks I stopped taking it and now only take a couple when I am having particularly fatty foods (which means almost never).

Has anyone else had similar experiences? I've researched the faecal elastase test and it seems to be the new standard way of testing for pancreatic sufficiency. But I wonder if perhaps a different test were done, I would maybe be found to have mild pancreatic insufficiency. My wife and I are no longer in the Marine Corps, and we are waiting for our new medical insurance to kick in before I get any other testing. But the only accredited CF center and CF specialists in Hawaii are at Tripler Army Medical Center, which is no longer available to me as a civilian. So further testing would have to be done either out-of-state or at a non-accredited center.

Thanks for your input and suggestions!

I had bad bowels for my entire life. I tried everything for years - acid blockers, enzymes, bi carb, had fecal fat tests, blood tests etc.
I found out I had a sensitivity to gluten and went gluten free - 100% improvement - I had so much damage to my intestinal villi that no matter what the input is the output was bad. Now my gut is healing and doing well. Please look into gluten and sensitivity - it really is the bane to modern man!
Dairy too is bad for us cf's it makes mucus - more mucusy!
Note to your CF doc they will give you resistance because this is not on their radar. DO your own research and tell them what tests you need, ie: IG/E and A, genetic test for celiac and even an endoscopic exam and biopsy.
 

albino15

New member
rmotion:

Why do you think dairy is bad for CFers? Is this a personal experience or was there a study or what?
Just curious because I've not heard that people with CF should avoid dairy.
 

Printer

Active member
It is NOT that dairy is bad for CFers but a large percentage of CFers are LACTOSE INTOLLORANT (sp).

Bill
 

rmotion

New member
Dairy is mucogenic - meaning it makes mucus. Something we do not need.

Oh, Okay. Guess I just misunderstood.

Thanks Bill

Dairy is mucogenic - meaning it makes mucus. Something we do not need.
Actually the more tolerant you are of dairy then the more you are digesting and making more mucus. IT is a vicious circle with this damn disease Iknow.
Here is how I see it. When I was having so many bowel problems I was not digesting anything it was all going through me, right. Then I went gluten free a complete 180 in bowels and digestion. But what I then noticed that the more dairy I ate the more congested I became because I was digesting more. ONe time I had a choc milk shake and almost suffocated in the mucus, horrible. I leaned off dairy from that point and now I am about 98% dairy free and better off. It is not easy but now I have fake cheese and what not. :)
Trust me there is no silver bullet for all this it is a methodical and practical approach to this.

http://www.livestrong.com/article/247158-foods-to-avoid-nasal-congestion/

http://www.cancercompass.com/message-board/message/all,28264,0.htm

A good source for gluten free foods http://www.glutensolutions.com
also gluten.net and celiac.org
 

rmotion

New member
It is NOT that dairy is bad for CFers but a large percentage of CFers are LACTOSE INTOLLORANT (sp).

Bill

Bill most Cf's are lactose intolerant because we are everything intolerant. WIthout the right enzymes and assuming inflammation and poor intestinal health it is a wonder we get any nutrient. See my post below about dairy.
 
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