Enzymes Question

[PepperKitty]

Hi! My name is Faith. I know there is a lot of knowledgable CF on this website & please I'd like your advice.
My Ultrase MT 20 enzymes have never been very effective, but now have completely stopped working. A GI doctor, who is not familiar with CF prescribed
Panokase-16. He gave me the idea that enzymes usually don't work. I'm very pancreatic insufficient & am having a lot of malabsorption stomach pain & have lost a lot of weight. I felt like the GI doctor was in a hurry & didn't listen. He did double my Prilosec from 40mg-80mg, which has helped some. The enzymes that have worked best for me were a combination of enteric coated Pancrease-MT 18 and non-enteric coated Cotazyme prescribed by a former CF doctor. I have an appointment with my regular pulmonologist Thursday & would like to try this combination of enzymes again since the Panokase-16 hasn't worked.
My questions are do enzymes work in most CF?
Are enteric-coated enzymes better?
Does anyone take a combo of both enterie & non-enteric coated?
I am pretty desperate for help. My weight is dangerously low. I'm 5'7" and only 91lbs. I can't lose anymore weight. I have a feeding tube, but it isn't much help.

Thanks,
Faith 33 w/CF

 

[PepperKitty]

Hi! My name is Faith. I know there is a lot of knowledgable CF on this website & please I'd like your advice.
My Ultrase MT 20 enzymes have never been very effective, but now have completely stopped working. A GI doctor, who is not familiar with CF prescribed
Panokase-16. He gave me the idea that enzymes usually don't work. I'm very pancreatic insufficient & am having a lot of malabsorption stomach pain & have lost a lot of weight. I felt like the GI doctor was in a hurry & didn't listen. He did double my Prilosec from 40mg-80mg, which has helped some. The enzymes that have worked best for me were a combination of enteric coated Pancrease-MT 18 and non-enteric coated Cotazyme prescribed by a former CF doctor. I have an appointment with my regular pulmonologist Thursday & would like to try this combination of enzymes again since the Panokase-16 hasn't worked.
My questions are do enzymes work in most CF?
Are enteric-coated enzymes better?
Does anyone take a combo of both enterie & non-enteric coated?
I am pretty desperate for help. My weight is dangerously low. I'm 5'7" and only 91lbs. I can't lose anymore weight. I have a feeding tube, but it isn't much help.

Thanks,
Faith 33 w/CF

 

[PepperKitty]

Hi! My name is Faith. I know there is a lot of knowledgable CF on this website & please I'd like your advice.
My Ultrase MT 20 enzymes have never been very effective, but now have completely stopped working. A GI doctor, who is not familiar with CF prescribed
Panokase-16. He gave me the idea that enzymes usually don't work. I'm very pancreatic insufficient & am having a lot of malabsorption stomach pain & have lost a lot of weight. I felt like the GI doctor was in a hurry & didn't listen. He did double my Prilosec from 40mg-80mg, which has helped some. The enzymes that have worked best for me were a combination of enteric coated Pancrease-MT 18 and non-enteric coated Cotazyme prescribed by a former CF doctor. I have an appointment with my regular pulmonologist Thursday & would like to try this combination of enzymes again since the Panokase-16 hasn't worked.
My questions are do enzymes work in most CF?
Are enteric-coated enzymes better?
Does anyone take a combo of both enterie & non-enteric coated?
I am pretty desperate for help. My weight is dangerously low. I'm 5'7" and only 91lbs. I can't lose anymore weight. I have a feeding tube, but it isn't much help.

Thanks,
Faith 33 w/CF

 

[Chaggie]

I've never had a problem with my enzymes, I've even used generics, but I don't know if enteric or nonenteric is better than the other, sorry couldn't help more.

 

[Chaggie]

I've never had a problem with my enzymes, I've even used generics, but I don't know if enteric or nonenteric is better than the other, sorry couldn't help more.

 

[Chaggie]

I've never had a problem with my enzymes, I've even used generics, but I don't know if enteric or nonenteric is better than the other, sorry couldn't help more.

 

[EnergyGal]

I can tell you what I take and what works for me. The CF enzymes stopped working for me too.

I buy a product over the counter from a company called Metagenics and the product is called <b>Azeo pangen</b> I take on extra strength with meals. I also take a vegetable enzyme from a company called Rainbow light. The name of the enzyme is called <b>All Zyme Double strength</b>.
Luckyvitamins carries Metagenics. If you buy them and they work for you when you buy this brand you can get twenty percent off.

I gained thirty pounds in one year and now I am trying to trim down a little.

The metagenics is a porcine based and the Rainbow light is vegetable. That is when I noticed the weight gain when I started with the rainbow light in addition. I tried the Rainbow light on its own but it did not work as well.

I will tell you something funny. Once I started to gain weight my breasts got so much bigger lol I had to keep changing bra sizes. I think it is from the Rainbow lights. I have no idea but all my weight went to my chest and butt and thighs. Some in the tummy but no big deal.

You can buy the Rainbow light at Whole foods market and if they do not have it they can order it for you. You can only buy the Metagenics Azeo Pangen from an online vendor like luckyvitamin.com or a chiropractor.

When I had my transplant a year and a half ago, I was on a ventilator for a while and everytime they put the cf enzymes down the feeding tube, I would have trouble with them because of the beads. I told my husband to bring in the Azeo Pangen and they crushed it up and I had no problem with this enzyme. I started to gain my weight back and was out of the ICU in no time. I had to get permission from the doctors but they knew I was on them at home. Thankfully I had a big supply at home

I am 5'8 and weigh 147 and before I started taking this combo I weight 120


Another good porcine enzyme is called Pancreatin *extra strength*by the company KAL. They sell this at Whole foods too. I did not gain weight with this enzyme but digested very well. I think what contributed to my weight gain as I repeat myself were the combo of vegetable enzymes and the porcine.

let me know how you do
I am sure once you find the right enzymes you will start gaining quickly. Keep your faith

 

[EnergyGal]

I can tell you what I take and what works for me. The CF enzymes stopped working for me too.

I buy a product over the counter from a company called Metagenics and the product is called <b>Azeo pangen</b> I take on extra strength with meals. I also take a vegetable enzyme from a company called Rainbow light. The name of the enzyme is called <b>All Zyme Double strength</b>.
Luckyvitamins carries Metagenics. If you buy them and they work for you when you buy this brand you can get twenty percent off.

I gained thirty pounds in one year and now I am trying to trim down a little.

The metagenics is a porcine based and the Rainbow light is vegetable. That is when I noticed the weight gain when I started with the rainbow light in addition. I tried the Rainbow light on its own but it did not work as well.

I will tell you something funny. Once I started to gain weight my breasts got so much bigger lol I had to keep changing bra sizes. I think it is from the Rainbow lights. I have no idea but all my weight went to my chest and butt and thighs. Some in the tummy but no big deal.

You can buy the Rainbow light at Whole foods market and if they do not have it they can order it for you. You can only buy the Metagenics Azeo Pangen from an online vendor like luckyvitamin.com or a chiropractor.

When I had my transplant a year and a half ago, I was on a ventilator for a while and everytime they put the cf enzymes down the feeding tube, I would have trouble with them because of the beads. I told my husband to bring in the Azeo Pangen and they crushed it up and I had no problem with this enzyme. I started to gain my weight back and was out of the ICU in no time. I had to get permission from the doctors but they knew I was on them at home. Thankfully I had a big supply at home

I am 5'8 and weigh 147 and before I started taking this combo I weight 120


Another good porcine enzyme is called Pancreatin *extra strength*by the company KAL. They sell this at Whole foods too. I did not gain weight with this enzyme but digested very well. I think what contributed to my weight gain as I repeat myself were the combo of vegetable enzymes and the porcine.

let me know how you do
I am sure once you find the right enzymes you will start gaining quickly. Keep your faith

 

[EnergyGal]

I can tell you what I take and what works for me. The CF enzymes stopped working for me too.

I buy a product over the counter from a company called Metagenics and the product is called <b>Azeo pangen</b> I take on extra strength with meals. I also take a vegetable enzyme from a company called Rainbow light. The name of the enzyme is called <b>All Zyme Double strength</b>.
Luckyvitamins carries Metagenics. If you buy them and they work for you when you buy this brand you can get twenty percent off.

I gained thirty pounds in one year and now I am trying to trim down a little.

The metagenics is a porcine based and the Rainbow light is vegetable. That is when I noticed the weight gain when I started with the rainbow light in addition. I tried the Rainbow light on its own but it did not work as well.

I will tell you something funny. Once I started to gain weight my breasts got so much bigger lol I had to keep changing bra sizes. I think it is from the Rainbow lights. I have no idea but all my weight went to my chest and butt and thighs. Some in the tummy but no big deal.

You can buy the Rainbow light at Whole foods market and if they do not have it they can order it for you. You can only buy the Metagenics Azeo Pangen from an online vendor like luckyvitamin.com or a chiropractor.

When I had my transplant a year and a half ago, I was on a ventilator for a while and everytime they put the cf enzymes down the feeding tube, I would have trouble with them because of the beads. I told my husband to bring in the Azeo Pangen and they crushed it up and I had no problem with this enzyme. I started to gain my weight back and was out of the ICU in no time. I had to get permission from the doctors but they knew I was on them at home. Thankfully I had a big supply at home

I am 5'8 and weigh 147 and before I started taking this combo I weight 120


Another good porcine enzyme is called Pancreatin *extra strength*by the company KAL. They sell this at Whole foods too. I did not gain weight with this enzyme but digested very well. I think what contributed to my weight gain as I repeat myself were the combo of vegetable enzymes and the porcine.

let me know how you do
I am sure once you find the right enzymes you will start gaining quickly. Keep your faith

 

[65rosessamurai]

I just wanted to add..I wish they had more 'Rainbow light' over here, there's a lot of women who are a pirate's dream!!

Like Risa, I also have either been taking over-the counter enzymes, or supplements. Despite my digestive system being the most complicated, they seem to work, along with the fact that it seems the diet in Japan fits me well.

Which I would want to add that diet is also going to be related to how well the enzymes will be effective.

 

[65rosessamurai]

I just wanted to add..I wish they had more 'Rainbow light' over here, there's a lot of women who are a pirate's dream!!

Like Risa, I also have either been taking over-the counter enzymes, or supplements. Despite my digestive system being the most complicated, they seem to work, along with the fact that it seems the diet in Japan fits me well.

Which I would want to add that diet is also going to be related to how well the enzymes will be effective.

 

[65rosessamurai]

I just wanted to add..I wish they had more 'Rainbow light' over here, there's a lot of women who are a pirate's dream!!

Like Risa, I also have either been taking over-the counter enzymes, or supplements. Despite my digestive system being the most complicated, they seem to work, along with the fact that it seems the diet in Japan fits me well.

Which I would want to add that diet is also going to be related to how well the enzymes will be effective.

 

[EnergyGal]

I was wondering if it is possible if the what you are taking in the feeding tube could be causing your stomach problems? When I was on a feeding tube in the hospital, I did not do well with their tube feedings. they had to keep changing the formulas.

I sure hope you can find a winning combo for yourself. When you eat your food, are you eating healthy or fried and oily foods?

 

[EnergyGal]

I was wondering if it is possible if the what you are taking in the feeding tube could be causing your stomach problems? When I was on a feeding tube in the hospital, I did not do well with their tube feedings. they had to keep changing the formulas.

I sure hope you can find a winning combo for yourself. When you eat your food, are you eating healthy or fried and oily foods?

 

[EnergyGal]

I was wondering if it is possible if the what you are taking in the feeding tube could be causing your stomach problems? When I was on a feeding tube in the hospital, I did not do well with their tube feedings. they had to keep changing the formulas.

I sure hope you can find a winning combo for yourself. When you eat your food, are you eating healthy or fried and oily foods?

 

[Scarlett81]

I have only ever been on Pancrease mt 16's. I have had to up the dosage over the years though. It seems like every 5 years or so I add one enzyme to each meal. I take 4 with meals.

I was ready to switch enzymes about a year ago when I was having really bad GI troubles. I complained about it to my then Cf docs and they basically blew me off.
When I switched Cf docs to another clinic, they sent me to a GI specialist and he did a colonoscopy and an endoscopy.
If you haven't had that done recently, I'd suggest you do it. Bring it up to your doctor. If he hasn't suggested that, or thinks enzymes don't do any good-I kinda question whether he's the right doctor for you personally. I'm not saying he's bad, but I just wonder why he'd say that to you. We need pancreatic enzmyes. If your weight is that low and you have such problems, you definately aren't pancreatic sufficent.
I'd talk to your cf docs about having a colonoscopy or perhaps getting a second opinion with another Gi specialist. A colon. will show them what's going on in there. It may show bacteriali growth, or a number of things. Mine showed an abnormal build up of fat and oils in my large intestine, and abnormal cell growth in my esophagus. I think all cfers should have them every few years minimum.

 

[Scarlett81]

I have only ever been on Pancrease mt 16's. I have had to up the dosage over the years though. It seems like every 5 years or so I add one enzyme to each meal. I take 4 with meals.

I was ready to switch enzymes about a year ago when I was having really bad GI troubles. I complained about it to my then Cf docs and they basically blew me off.
When I switched Cf docs to another clinic, they sent me to a GI specialist and he did a colonoscopy and an endoscopy.
If you haven't had that done recently, I'd suggest you do it. Bring it up to your doctor. If he hasn't suggested that, or thinks enzymes don't do any good-I kinda question whether he's the right doctor for you personally. I'm not saying he's bad, but I just wonder why he'd say that to you. We need pancreatic enzmyes. If your weight is that low and you have such problems, you definately aren't pancreatic sufficent.
I'd talk to your cf docs about having a colonoscopy or perhaps getting a second opinion with another Gi specialist. A colon. will show them what's going on in there. It may show bacteriali growth, or a number of things. Mine showed an abnormal build up of fat and oils in my large intestine, and abnormal cell growth in my esophagus. I think all cfers should have them every few years minimum.

 

[Scarlett81]

I have only ever been on Pancrease mt 16's. I have had to up the dosage over the years though. It seems like every 5 years or so I add one enzyme to each meal. I take 4 with meals.

I was ready to switch enzymes about a year ago when I was having really bad GI troubles. I complained about it to my then Cf docs and they basically blew me off.
When I switched Cf docs to another clinic, they sent me to a GI specialist and he did a colonoscopy and an endoscopy.
If you haven't had that done recently, I'd suggest you do it. Bring it up to your doctor. If he hasn't suggested that, or thinks enzymes don't do any good-I kinda question whether he's the right doctor for you personally. I'm not saying he's bad, but I just wonder why he'd say that to you. We need pancreatic enzmyes. If your weight is that low and you have such problems, you definately aren't pancreatic sufficent.
I'd talk to your cf docs about having a colonoscopy or perhaps getting a second opinion with another Gi specialist. A colon. will show them what's going on in there. It may show bacteriali growth, or a number of things. Mine showed an abnormal build up of fat and oils in my large intestine, and abnormal cell growth in my esophagus. I think all cfers should have them every few years minimum.

 

[LouLou]

Christian, What did they recommend regarding the abnormal cell growth in your esophagus? Also did you require anesthesia for the colonoscopy or endoscopy?

 

[LouLou]

Christian, What did they recommend regarding the abnormal cell growth in your esophagus? Also did you require anesthesia for the colonoscopy or endoscopy?