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Posted 9/17/2009 11:12 PM (GMT 0)
Hi everyone, I wanted to give my experience with enzymes and intestinal blockages and see if anyone else has had similar or other issues in this area.

I am a 23 year old female diagnosed at birth with CF I had a meconium ileus which is how the docs new I had CF. I do have to scars and I would imagine a lot of scar tissue has formed. about 3 years ago I had my first intestinal blockage and went to the ER where they gave me iv fluids, a muscle relaxant and an NG tube to remove the trapped gas. I have had intestinal blockages 2 more times since and I am trying to be more aware of how my body is feeling and staying hydrated and eating a lot of fiber and taking my enzymes as directed. I eat a fairly clean diet in the sense that I eat unprocessed foods, more whole grains and anything you would find in a garden. I am almost following a vegetarian diet but do have chicken once in a while, no red meats. I have asked my doctors if the enzymes I am taking are too strong for me or if maybe after so many years of being on them I should try different ones. I am now alternating between pancrecarb ms-16, ms-8 and creon 20 (although it was recently renamed not sure what new name is). My mom was online the other day and said she saw something on enzyme overdose in CF patients. I have been trying to find more information on this but can't seem to come across any. This is interesting to me because I have been working with my dr to try and figure out a way to stop these blockages from occurring and I asked if a CF person could ever take too many enzymes, and they told me no you can only take too little. But now I don't know whats really true because no one knows for sure how to treat CF in any area and if there is new evidence of overdosing on enzymes I would like to show my dr. so we can discuss it further.

If anyone has anything let me know. Thanks
Posted 9/20/2009 5:39 PM (GMT 0)
Hi,

I just read about excessive administration on http://emedicine.medscape.com

The clinical presentation, age at diagnosis, severity of symptoms, and rate of disease progression in the organs involved widely vary. GI tract complications result from pancreatic involvement (leading to insufficient pancreatic enzymes), pancreatic tissue damage (leading to diabetes mellitus in 8-12% of patients >25 y), and excessive administration of exogenous pancreatic enzymes (resulting in fibrosing colonopathy).

Take care
Posted 9/21/2009 1:59 PM (GMT 0)
I'm not sure on whether you can have too many enzymes or not. That seems to be a general thing across the UK, that you have too get your enzymes exactly right, as too little or too many can be bad. At my old childrens hospitals, they are on the side of too many enzymes is bad. However my current hospital isn't. Infact they say, if you haven't eaten all day, then you should have 1 or 2 creon capsules every 4 hours, to digest built up mucous and stuff.

I've never heard anyone other my dieticians say this though, and it seems really weird.

In my experiance though, from when I was taking no enzymes whatsoever. I was still getting bad blockages and for a few years I had a constant daily dose of 30mls of Lactulose. I was removed from that when my dentist complained. I still get the same kind of blockages now, and about the same amount, even though I now I take Creon 10,000 religiously.

This could just be me though, and you problems could well be creon related even though mine aren't.

Do you drink plenty of water during the day? That is one of the things the creon packets says. If you're on them you should be drinking plenty of water.

Another thing, is maybe protein. Maybe you aren't eating enough protein for the Creon digesting them. Creon does also digest protein and other stuff aswell as fat. That's just a guess though obviously, as not enough protein tends to be a problem for vegetarians I think.

Maybe also a low dose gentle laxative like lactulose taken daily might help? Again you'd have to drink a lot of water alongside it (and brush your teeth thoroughly each time you have a dose).

Hope some of this helps.

Gem

Posted 9/24/2009 12:15 AM (GMT 0)
Hey LifetoLove,

I just got out of the hospital today from my first small bowel obstruction. I had come close to having one at the end of May of this year and my doctor encouraged me to decrease the amount of enzymes I was taking. Everyone takes a different amount, but I was taking more than any patient they had - Creon 20, 12 with meals and 8-9 with snacks. Now I take 6-7 with meals, 4 with snacks and that's actually working just as well, maybe better for me.

My CF doc has told me that too many enzymes can definitely cause intestinal scaring, and that opinion seems to be agreed upon by all other doctors that I have asked about it. I admire your changes in diet. I'm going to try to max out on fiber as well, though I don't think I'll be able to give up meat. I'm also going to, like Gym said, take a mild laxative once a week. My doc prescribed generic Miralax to me several months ago, and it is not at all forceful.

One of my early childhood docs who is a well published CF doc once told me to stay away from peanut butter. Well I did for most of my life but last year I discovered that it didn't give me bad stomach aches like I thought it would. So I've been eating it several times a week, mostly as a before bed snack. This might have attributed to my blockage so I'm going to chill on the PB as well.

Thanks for the info. After my unpleasant hospitalization I was glad to find others with the same issues.
Kyle
Posted 9/24/2009 8:53 AM (GMT 0)
Peanut butter causing problems? Really?!?!

On another CF site I use, PB tends to be staple diet for weight gain. The stuff literally finds it's way into almost every meal. I never knew it could cause blockages! Good job I'm using real food (and sugar) to keep my weight up. :P

Creon 20, is about the strength of Creon 25,000 from what I can gather from google. 12 with a meal is a lot to be taking!!
I take Creon 10,000 which is closest to Creon 10. Usually take between 12 and 18 with a meal (18 is only with mcdonalds as I just cannot digest any of their food-which made working there fun, I can assure you.) and 4-6 with snacks.

Reason I'm on the lower dose, is because the higher dose caused me a load of problems. In 3 months they forced me to try it, it made me ill. My friends and brother had the same problems as me with Creon 25,000. So every CF patient I know is on Creon 10,000. Only my brother gets bowel obstructions-but he hardley ever remembers Creon. Though his new gf is getting him into line. :D
Posted 10/2/2011 3:39 AM (GMT 0)
Lifetolove,

I am 21, and I have had 2 intestinal blockages, one minor one about 5 years ago and one in December. The one five years ago I have no idea what happened, I think we decided it was a bean casserole or something that stopped me up. But this past December was the worst pain I have ever been in. Did not relieve myself for 6 days. My first mistake was not paying attention to the fact that it had been 48 hours and I had not gone (I still don't know how I managed that). But then it all hit me. Worst pain I have ever been in. My second HUGE mistake was going to the local ER, and not to my specialty clinic, or even informing my doctors. So the doctor's at the local ER really did not know much about CF and they ended up taking out my appendix because somehow the blockage made my appendix look distorted in the xrays. However when they went to take it out they said it looked perfectly fine but the grabbe it out anyways because they were already there. So once again they were at a loss. They forced me to walk around, which I could barely limp, I was on high painkillers and as soon as the drugs wore off I turned nasty (which I always apologized for when the drugs kicked back in, but I was in so much pain).

After 2 nights in the hospital there was still NO progress, I hadn't eaten (day 5 by then), I was on fluids because I came in extremely dehydrated, and my stomach was so bloated and stretched out I swear I cant believe that I don't have stretch marks.  I remember being mad because all I kept asking for was Go Lightly, which was a laxative that I had taken the first time that did the trick. It is such a strong prescription that it is only supposed to take an hour to kick in, but the first time it took 24 hours I was so blocked. FINALLY the ER doctors contacted my doctor's and the next morning I was going to be transferred to my hospital. BUT thankfully that afternoon the docs had finally given in and given me what I had been asking for for 2 days. Needless to say I was released the next afternoon :)

After getting a checkup from my CF docs, the nutritionist told me about DIOS, Distal Intestinal Obstruction Syndrome, which is a condition found in some CF patients which basically makes blockages common. The best way to avoid it is to stay totally hydrated, keep up with my enzymes, and I also take a small dose of GlycoLax every day to keep stuff regular.

Now when all of this happened I was still getting acclimated into a new clinic, so my doctors and nurses and I werent on the same page with everything. When the nutritionist found out I was taking 10-11 Ultrase MT18's for meals, she was not very agreeable. Said it is quite possible that too many enzymes could have been a factor in this whole ordeal. I had been on a high dose for years because I had a lot of digestive problems when I was younger, but they seem to have gotten better but I never altered my dose back down. So I found that interesting.  

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