Are any of you pancreatic sufficient?

[anonymous]

Hi, I was just wondering if anyone was pancreatic sufficient here. I was diagnosed at age two partly because of my symptoms of pancreatic insufficiency, and took enzymes up until I was about 12. At that point I kind of stopped taking them as regularly mostly because I noticed that if I didnt take them nothing happened. Basically I havent taken enzymes since then and would now be considered "pancreatic sufficient." The thing is all the doctors either think I am lying or something because I dont want to take enzymes, which is ridiculous, or they are perplexed because apparently you can only go from being sufficient - to -insufficient, not the other way around. Well, I DID but I was just wondering if anyone else had

Also was just wondering if there was even anyone else on the board who didnt take enzymes either!

Thanks

Caitlin

 

[anonymous]

Interesting. If i don't talke my enzymes then I am in the bathroom most of the night. It just goes right through me. I always have to take my enzymes with meals.

Nicole 22 CF

 

[anonymous]

I went through a time when I was in high school when I hardly took any enzymes at all. It was really just me being lazy and also probably wanting to be somewhat "normal", though. I thought that I felt the same when I didn't take them, so it became very easy for me just to forget about them. Finally I realized, when I became more concerned about my girlish figure (or lack thereof) that my bloated stomach and gas was probably because I wasn't taking the enzymes. I was always told that cfer's always have that, so I thought it was normal. So I started taking them again. Now my stomach isn't as bloated on a normal basis, and I only get gas when I havn't taken them. I guess what I'm saying is that it took stopping and then starting again for me to realize that they really were working for me.

 

[anonymous]

caitlin, my husband who has cf had a similar experience to the person who posted above me. he stopped taking them sometime in his teens, and when we first met he wasn't taking them. I kind of pushed for him to give them a try again. He said the same thing you did, his body seemed to do the same thing on or off of the enzymes so why take them if they dont' appear to be serving a purpose. He did, only because i asked him, try them again. and he actually did notice a difference when he started them again. He said he noticed less gas, less greasiness and seemed to be much less bloated.
Our doctors though that what might have occured is once he went off them, the body did the best it could to compensate without the enzymes. We never heard anything about, "you were pancreatic insufficient, now you are sufficient..." their reasoning was that since the body did it's best to compenstate it did do a fairly good job, but it meant energy was being pulled from keeping him healthy in other areas (such as lungs) to have his pancreas working overtime because of the lack of natural enzymes. Once he started them, we noticed improved muscle mass (he lifts weights a lot) that he wasn't able to attain before, and better digestion.
If it works for you not to be on them, that's wonderful for you. But also consider that your body might be working overtime to help digest food with less enzymes than it should have. maybe give it a trial attempt to see if you notice a difference trying them again. Just an idea, but ultimately if you are doing good being off of them, then nobody should try to tell you otherwise. Best of luck with everything,

Juliea

 

[jaime]

Nope, I definately need those good old enzymes!! Not having to take them sounds great--but only if you are still healthy and maintaining a good weight and stuff. Keep an eye on that!

 

[Magerly111]

I was about to comment without reading anyone else's response, but if I did, I would have ended up repeating what Juliea had said. Not that the same situation happened to me, but I just figured that if you went from taking enzymes, to not taking them, and there is no visible consequence, then your body might be using more energy somewhere else. The enzymes aren't just taken to secrease gas and simply digest our food, but they also help you to absorb minerals in foods, and maintain your weight. Most CFers lack a great deal of calcium, and all the essential vitamins, and without those enzymes, it's amazing to see that your body would still be absorbing those minerals. Hopefully you are still keeping yourself at a good weight. I mean, if the doctors don't find out that your having any problems without them, congratulations to you!! But I'd probably still consider finding out if anything else may be happening inside your body because of the lack of enzymes. You don't want to end up with osteoporosis or something else because your body is lacking something. Like you, I've been swallowing them since I was 2-3, and I slacked off when I was in HS, but usually my body would catch up with me somehow by the end of the week. It's just so habitual for me to take them, that I would feel weird if I didn't lol. But in any case, I am not pancreatic sufficient, and even though I don't know many CF patients, the ones I do know need enzymes.

 

[anonymous]

wow, i wish i didnt have to take my enzymes either but thats not the case with me. If i dont take them i gt really bad gas and im in ALOT of pain and in the bathroom all day long! I used to never take them when i was about 13 till i was about 15, and i really hurt my intestines. I had to have enemas and drink mineral oil and drink mucomyst, it was TERRIBLE!!!! Please be careful with not taking them and watch for any weird symtoms, i'de hate for you to wind up having to have surgery to get part of your instestine removed like my one friend with cf did! Good luck sweetie, take care
Heather 20 w/cf

 

[serendipity730]

nope, not me. i am always having problems in that area. for like 3 yrs in a row, i had to do that stupid go-lytely once a year it was so bad (and for the most part i am pretty good about my enzymes.)

 

[serendipity730]

caitlin - just out of curiosity what r ur mutations?

 

[Joblazer86]

I am not pancreatic sufficient!! I need those enzymes.

 

[anonymous]

I too stopped taking my enzymes when i was in my early teens . But i wound up later having severe stomach pains , diarreah , cramps.
u might be feeling fine right now , but down the line u will feel the consequences . the enzymes help u absorb vital nutrients , fat from the food that u eat .

 

[anonymous]

Hey Caitlin,
I am 27 years old and I have never had to use enzymes. I am 5'5" and weigh 140# (infact I need to lose a few pounds). I did have some stomach upset about 4 years ago so my dr's put me on enzymes but they did nothing, I was only on the for about a week. I do just fine without them. If you are having some question about your pancrease be in/sufficiant your dr can order a test (I think it's a blood test) so you can know for sure. I get them occasionally just to confirm I'm on the right track.
Take care.
-Kelli

 

[Dea]

I am not that lucky either....I have been on enzymes all my life. I am now 31. I do know a couple of CFers, however that are pancreatic sufficient. Just depends on the mutations and the severity of the disease. I am a double delta F508. I also have had CFRD now for over 6 years.
Dea

 

[anonymous]

To understand why you would need to take your enzymes, would be to understand why you are insuffecient to begin with. Basically from all the research I've done about cf is that the tube connecting from the pancrease to the intestines to clogged with mucus. Which is why a lot of cfers get diabetes, because the enzymes don't get out and break down the pancrease. Insulin is released directly into the blood stream which is why it doesn't effect it until your pancrease isn't functioing. So basically you're pancrease never really becomes "un-plugged" so you will always be lacking them. You may never have any real bad symptoms because you are prolly get a little enzymes, but not enough to properly digest your food properly. No one is prolly going to convince you to take them, that will be up to you, but you'll probably be better off if you did. It's not that hard to get back into the routine, everyone does slack off with their treatments at one point in their life.

Ashley 20 w/cf

 

[anonymous]

Well the thing is I wouldnt care if I took them, I take so many other things if it would help me I would. What is weird is when I do take them they make me feel sick. I never experience gas or anything like that. Twice since this has happened the doctors have suggested I try them just to see, and I do, and I just end of feeling queasy and nothing much else happens during the two week "trial" period.

I have always been concerned about nutrition and making sure I take supplements, NOT simply ADEKS which arent of much help. I was just wondering because nobody seems to have any explanation.

My Mutations are DF508 and G551D...pretty common ones so...

Caitlin

 

[anonymous]

There was a time when I thought I did not need them. I still don’t take them as I should. However, what convinced me was I actually started to lose my appetite after a couple of years and went from 215lbs to 145 lbs. Since I went back on them I’m up to 175lbs, and it helps that my kids and girlfriend force feed me boost, ensure and junk food like its going out of style. Its almost funny since they are all girls they are constantly working on making their waste line smaller but when I gain a waist size they “can it” for the night so we can go out to eat and celebrate. But hey its like you said you gota know your self and own body, just don’t be discouraged if you find yourself needing them later.

ED

 

[JohnnaMarie]

Hi:

I wanted to say that I have not been taking my creon 20's for about 2 or so months now and I have been doing alot better. I was having alot of trouble with my bowels not moving because the Creons seemed to over digest my food and slow my guts down and so my last doctor put me on Miralax and stool softners with stimulents in them. I just got totally over medicated with all that stuff..

.I lucked out and when I moved I got a new doctor. She suggested I stop taking the Creons and see what happened. She told me that since i was absorbing my food so well and was not a child that needed all those calories for development i may not even need to take the Creons any more. I have to say though that I was overweight....not skinny so she could ask me to try that... I had been absorbing my food really really well with the C***** probably too well since they all but shut my guts down...... Now I have to say that I am still absorbing my food really well and have not had to take Creons at all any more. For now my stomach and guts are happy so it seems to be working for me. I have also noticed since I have stopped all that stuff that I have had alot less heart burn......My guts can actually work on their own now...

Thanks for your info on the pancreatic sufficient... I am not sure if I am or not, but i seem to not need the enzymes to digest food ..so would that be a yes?
<img src="i/expressions/face-icon-small-smile.gif" border="0">
<img src="i/expressions/heart.gif" border="0"> johnna

 

[anonymous]

Ah Johnna, i guess there is another one.
Yes I felt the same way the times that I would try to be one enzymes, its like there was too much going on in my digestive system. Plus I have never had any problems putting on pounds. I gained the freshman 15 like everyone else and thankfully lost it!

Caitlin

 

[anonymous]

i was the WORST at taking my pills.. a bottle of 500 woud last at least 4-5 months..now that lasts me only 1 month..i started taking them all the time when i dropped from 115 to my lowest 83lbs in about 2 months, but in all honesty..i still have good days and bad..i don't know if they had really helped or hurt me all that much..i am at 98 now and i feel i eat a lot..when i was sick (lung infection), i never ate..i think getting my lungs healthy made the difference..not the enzymes..

 

[anonymous]

Hi-I am 33 and was diagnosed when I was 18. I am pancreatic sufficient. I never had to take enzymes. I am actually a little fat. I just have lung disease. One of my mutations is a rare one and the other is a common one. The drs.' say this is what happens when you have that mutation. Good Luck to you!