I have an auto immune pancreas. My stools were 15-20 a day, all colors, and fat rings around them. My stool test showed enzyme level of 15 and normal is 200. That's why I was put on pancreatic enzymes (Creon) I lost 18lbs and eat like a horse, but didn't have the enzymes to help me digest. Today I had a repeat stool test and blood work to see if I am any better. How did you make out with your doctor appointment. You must have a problem with your pancreas, or your levels wouldn't be so high! Sure hope they can help you. I also put you on my prayer list. Good luck! Louise
@harper7745
Hi Louise
I went to the dr. on Tues & my levels went up 150 points on the Lipase & the Amylace went up too. I don't have the paper in front of me.
The dr. does not know why. He said it is usually from the gall bladder or drinking & I don't drink & never did & my gall bladder is ok. He is puzzled. He wants me to repeat the test again in 2 months. It really does worry me & I will tell you why. My bowel movements are not normal. I am not constipated but when it is time for me to pass the stool I can't without , this is terrible to say but I have to spread my cheeks for the stool to come out. I think I have some sort of obstruction but the dr. says the tests don't show it. I have did research on the high Lipase & it does say obstruction can cause high levels but for some reason the dr is not listening to me. I have a history of endometriosis which I had a lot of surgeries in my life which caused scar tissue & i think that is part of the problem which I know it is because the Mayo Clinic dr in Phoenix did surgery on me last year & excisioned what he could but I was so bad a tear was made in the small bowel so now I have 2 stitches & the dr. did proceed any farther. i think my problem stems from there but I just don't know. Thank you Louise for keeping in touch. I appreciate your support.
thank you for adding me to your prayer list. Keep me posted & take care. Genie
Sounds like you need a 2nd opinion. I have a friend who had a gallstone stuck in the duct that connects the pancreas to the gall bladder. He had to have half the pancreas removed as the stone caused his pancreas to die. His amylase and lipase were off the roof. If you have a blockage in the small bowel from endometriosis, I don't think that would affect the pancreas enzymes. Food is digested before going to the small bowel. I would highly recommend a 2nd opinion. Sounds like you are getting nowhere with your doctor. If you have pancreatitis, steroids is the treatment. That is what I am on. I will keep praying for you and hope you get answers. Louise
Sounds like you need a 2nd opinion. I have a friend who had a gallstone stuck in the duct that connects the pancreas to the gall bladder. He had to have half the pancreas removed as the stone caused his pancreas to die. His amylase and lipase were off the roof. If you have a blockage in the small bowel from endometriosis, I don't think that would affect the pancreas enzymes. Food is digested before going to the small bowel. I would highly recommend a 2nd opinion. Sounds like you are getting nowhere with your doctor. If you have pancreatitis, steroids is the treatment. That is what I am on. I will keep praying for you and hope you get answers. Louise
@harper7745
I went to the Mayo Clinic In Phoenix & I did have the scope where they look at the ducts & check everything & it was ok. I also saw a pancreas specialist there & he said the enzymes were caused from my Gastritis. When I went to the dr. out here in my town he says I have mild pancreitis & that is why he keeps checking the levels. What type of dr. should I be seeing?. I live to far to keep going back to the Mayo Clinic & they did not help me anyways. I have been going there for 2 years & they did not help me in any way. I will mention steroids to the dr. bc I will be seeing him again in Oct to check the levels. Hope your doing alright. Thank you for my prayers. Your on my prayers list as I pray every morning when I get up. God Bless Genie
@harper7745
I went to the Mayo Clinic In Phoenix & I did have the scope where they look at the ducts & check everything & it was ok. I also saw a pancreas specialist there & he said the enzymes were caused from my Gastritis. When I went to the dr. out here in my town he says I have mild pancreitis & that is why he keeps checking the levels. What type of dr. should I be seeing?. I live to far to keep going back to the Mayo Clinic & they did not help me anyways. I have been going there for 2 years & they did not help me in any way. I will mention steroids to the dr. bc I will be seeing him again in Oct to check the levels. Hope your doing alright. Thank you for my prayers. Your on my prayers list as I pray every morning when I get up. God Bless Genie
If you saw a pancreas specialist, don't think you can see any better. I do know that gastritis can elevate pancreas levels, so he is probably correct. Also, he said yo have mild pancreatitis and that would elevate them also. I had a biopsy of my pancreas, and my doctor thought it was cancer. He sent it to Mayo and they said no, and my doc sent me to a cancer specialist for a 3rd opinion. He said no, and put me on Steroids and found that I have the Autoimmune Pancreas. Autoimmune pancreas can mimic cancer. I lost 18lbs but it was because my enzyme levels in the stool were so low and I wasn't absorbing any food. Now I am on the enzymes, and steroids and seem to be doing better. Still can't seem to gain the weight back though. Did you lose weight? My Amylase was always o.k., but my Lipase was high. Don't understand that, when the enzymes in the stool are so low. They were only15 and should have been 200.
I will keep praying for you and hopefully someone can help! Louise
If you saw a pancreas specialist, don't think you can see any better. I do know that gastritis can elevate pancreas levels, so he is probably correct. Also, he said yo have mild pancreatitis and that would elevate them also. I had a biopsy of my pancreas, and my doctor thought it was cancer. He sent it to Mayo and they said no, and my doc sent me to a cancer specialist for a 3rd opinion. He said no, and put me on Steroids and found that I have the Autoimmune Pancreas. Autoimmune pancreas can mimic cancer. I lost 18lbs but it was because my enzyme levels in the stool were so low and I wasn't absorbing any food. Now I am on the enzymes, and steroids and seem to be doing better. Still can't seem to gain the weight back though. Did you lose weight? My Amylase was always o.k., but my Lipase was high. Don't understand that, when the enzymes in the stool are so low. They were only15 and should have been 200.
I will keep praying for you and hopefully someone can help! Louise
Hi Louise
Thank you so much for your prayers. I really appreciate it. Your in mine too. Sounds like you have been through a lot. I'm glad the steroids are helping you out. I never lost weight if anything I gained a few pounds. I am going to ask for the occult stool test bc I have not had one in a long time. Do you think that might tell something bc I still think I have an obstruction but they say no. If I did they said I would not be able to go to the bathroom & I would be nauseated & throw up looking like coffee grounds so I don't know. I will repeat the test in 2 months Novemeber & see if it has still gone up. How do they do a biopsy of the pancreas?. Does it hurt & do they sedate you.? I wish you the best Louise & we will just have to hang in there. God Bless Genie
Hi Louise
Thank you so much for your prayers. I really appreciate it. Your in mine too. Sounds like you have been through a lot. I'm glad the steroids are helping you out. I never lost weight if anything I gained a few pounds. I am going to ask for the occult stool test bc I have not had one in a long time. Do you think that might tell something bc I still think I have an obstruction but they say no. If I did they said I would not be able to go to the bathroom & I would be nauseated & throw up looking like coffee grounds so I don't know. I will repeat the test in 2 months Novemeber & see if it has still gone up. How do they do a biopsy of the pancreas?. Does it hurt & do they sedate you.? I wish you the best Louise & we will just have to hang in there. God Bless Genie
Hi Genie
I don't think a stool for occult blood would help. Your stools would be dark if you had blood in them. Your doctor is right about the obstruction. You wouldn't be able to have a BM and yes, you would be nauseated. The biopsy didn't hurt. It was an endoscopy hooked up to an ultra sound machine, The US picture showed my pancreas head swollen, and they take a needle and just pierce the pancreas to get a little liquid or smear. It doesn't hurt at all, but they do knock you out, just like for a regular endoscopy. Your elevations may be from your gastritis or mild pancreatitis. Although my doctor told me the most accurate diagnosis of pancreatitis is the endoscope ultra sound. Maybe you should have one of those done. Sure hope you get results, and hope you don't have to wait until November. Louise
I also have pancreitis I think due to omeprazole bc I was taking it for years. That is the only med I am taking that suggests it could have some effect.
Hi Genie
I don't think a stool for occult blood would help. Your stools would be dark if you had blood in them. Your doctor is right about the obstruction. You wouldn't be able to have a BM and yes, you would be nauseated. The biopsy didn't hurt. It was an endoscopy hooked up to an ultra sound machine, The US picture showed my pancreas head swollen, and they take a needle and just pierce the pancreas to get a little liquid or smear. It doesn't hurt at all, but they do knock you out, just like for a regular endoscopy. Your elevations may be from your gastritis or mild pancreatitis. Although my doctor told me the most accurate diagnosis of pancreatitis is the endoscope ultra sound. Maybe you should have one of those done. Sure hope you get results, and hope you don't have to wait until November. Louise
Hi Louise
I had the ultra sound endoscope In March at the Mayo Clinic in Phoenix & they said everything was fine except for the Gastritis . I still think is all from the adhesion's. .I am considered complicated with a interesting history by the Mayo Clinic dr's there. I was born with 2 uterus & 1 ovary on opposite sides & that is why I was never able to have children. I adopted. I had my 1st major surgery at 20 years old & that is when I found out that I had endometriosis & I have had several surgeries for it & I am now 69 years old. All the surgeries caused all these adhesion's & they are so bad that they are plastered on all the other organs & twisiting in al different directions. I had the best dr. at the Mayo Clinic in Phoenix 7 he had problems with me. There was a tare in the small bowel bc of the dense & extensive adhesion's. So do you see what I mean.
How are you doing? Your in my prayers. Thank you Lousie for all your help.
Hi Louise
I had the ultra sound endoscope In March at the Mayo Clinic in Phoenix & they said everything was fine except for the Gastritis . I still think is all from the adhesion's. .I am considered complicated with a interesting history by the Mayo Clinic dr's there. I was born with 2 uterus & 1 ovary on opposite sides & that is why I was never able to have children. I adopted. I had my 1st major surgery at 20 years old & that is when I found out that I had endometriosis & I have had several surgeries for it & I am now 69 years old. All the surgeries caused all these adhesion's & they are so bad that they are plastered on all the other organs & twisiting in al different directions. I had the best dr. at the Mayo Clinic in Phoenix 7 he had problems with me. There was a tare in the small bowel bc of the dense & extensive adhesion's. So do you see what I mean.
How are you doing? Your in my prayers. Thank you Lousie for all your help.
You have been through a lot. You do sound complicated and I guess the doctors are doing their best. I was born with 2 pancreatic ducts instead of one. 9% of the population has this, and this too can cause pancreatitis. I will keep praying and hoping that the docs will come up with a treatment or a solution for you! Louise
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@harper7745
Hi Louise
I went to the dr. on Tues & my levels went up 150 points on the Lipase & the Amylace went up too. I don't have the paper in front of me.
The dr. does not know why. He said it is usually from the gall bladder or drinking & I don't drink & never did & my gall bladder is ok. He is puzzled. He wants me to repeat the test again in 2 months. It really does worry me & I will tell you why. My bowel movements are not normal. I am not constipated but when it is time for me to pass the stool I can't without , this is terrible to say but I have to spread my cheeks for the stool to come out. I think I have some sort of obstruction but the dr. says the tests don't show it. I have did research on the high Lipase & it does say obstruction can cause high levels but for some reason the dr is not listening to me. I have a history of endometriosis which I had a lot of surgeries in my life which caused scar tissue & i think that is part of the problem which I know it is because the Mayo Clinic dr in Phoenix did surgery on me last year & excisioned what he could but I was so bad a tear was made in the small bowel so now I have 2 stitches & the dr. did proceed any farther. i think my problem stems from there but I just don't know. Thank you Louise for keeping in touch. I appreciate your support.
thank you for adding me to your prayer list. Keep me posted & take care. Genie
Sounds like you need a 2nd opinion. I have a friend who had a gallstone stuck in the duct that connects the pancreas to the gall bladder. He had to have half the pancreas removed as the stone caused his pancreas to die. His amylase and lipase were off the roof. If you have a blockage in the small bowel from endometriosis, I don't think that would affect the pancreas enzymes. Food is digested before going to the small bowel. I would highly recommend a 2nd opinion. Sounds like you are getting nowhere with your doctor. If you have pancreatitis, steroids is the treatment. That is what I am on. I will keep praying for you and hope you get answers. Louise
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I went to the Mayo Clinic In Phoenix & I did have the scope where they look at the ducts & check everything & it was ok. I also saw a pancreas specialist there & he said the enzymes were caused from my Gastritis. When I went to the dr. out here in my town he says I have mild pancreitis & that is why he keeps checking the levels. What type of dr. should I be seeing?. I live to far to keep going back to the Mayo Clinic & they did not help me anyways. I have been going there for 2 years & they did not help me in any way. I will mention steroids to the dr. bc I will be seeing him again in Oct to check the levels. Hope your doing alright. Thank you for my prayers. Your on my prayers list as I pray every morning when I get up. God Bless Genie
If you saw a pancreas specialist, don't think you can see any better. I do know that gastritis can elevate pancreas levels, so he is probably correct. Also, he said yo have mild pancreatitis and that would elevate them also. I had a biopsy of my pancreas, and my doctor thought it was cancer. He sent it to Mayo and they said no, and my doc sent me to a cancer specialist for a 3rd opinion. He said no, and put me on Steroids and found that I have the Autoimmune Pancreas. Autoimmune pancreas can mimic cancer. I lost 18lbs but it was because my enzyme levels in the stool were so low and I wasn't absorbing any food. Now I am on the enzymes, and steroids and seem to be doing better. Still can't seem to gain the weight back though. Did you lose weight? My Amylase was always o.k., but my Lipase was high. Don't understand that, when the enzymes in the stool are so low. They were only15 and should have been 200.
I will keep praying for you and hopefully someone can help! Louise
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1 ReactionHi Louise
Thank you so much for your prayers. I really appreciate it. Your in mine too. Sounds like you have been through a lot. I'm glad the steroids are helping you out. I never lost weight if anything I gained a few pounds. I am going to ask for the occult stool test bc I have not had one in a long time. Do you think that might tell something bc I still think I have an obstruction but they say no. If I did they said I would not be able to go to the bathroom & I would be nauseated & throw up looking like coffee grounds so I don't know. I will repeat the test in 2 months Novemeber & see if it has still gone up. How do they do a biopsy of the pancreas?. Does it hurt & do they sedate you.? I wish you the best Louise & we will just have to hang in there. God Bless Genie
Hi Genie
I don't think a stool for occult blood would help. Your stools would be dark if you had blood in them. Your doctor is right about the obstruction. You wouldn't be able to have a BM and yes, you would be nauseated. The biopsy didn't hurt. It was an endoscopy hooked up to an ultra sound machine, The US picture showed my pancreas head swollen, and they take a needle and just pierce the pancreas to get a little liquid or smear. It doesn't hurt at all, but they do knock you out, just like for a regular endoscopy. Your elevations may be from your gastritis or mild pancreatitis. Although my doctor told me the most accurate diagnosis of pancreatitis is the endoscope ultra sound. Maybe you should have one of those done. Sure hope you get results, and hope you don't have to wait until November. Louise
How long did you take omeprazole
16 years. I read that it should not be taken for more than 8 months!
Hi Louise
I had the ultra sound endoscope In March at the Mayo Clinic in Phoenix & they said everything was fine except for the Gastritis . I still think is all from the adhesion's. .I am considered complicated with a interesting history by the Mayo Clinic dr's there. I was born with 2 uterus & 1 ovary on opposite sides & that is why I was never able to have children. I adopted. I had my 1st major surgery at 20 years old & that is when I found out that I had endometriosis & I have had several surgeries for it & I am now 69 years old. All the surgeries caused all these adhesion's & they are so bad that they are plastered on all the other organs & twisiting in al different directions. I had the best dr. at the Mayo Clinic in Phoenix 7 he had problems with me. There was a tare in the small bowel bc of the dense & extensive adhesion's. So do you see what I mean.
How are you doing? Your in my prayers. Thank you Lousie for all your help.
You have been through a lot. You do sound complicated and I guess the doctors are doing their best. I was born with 2 pancreatic ducts instead of one. 9% of the population has this, and this too can cause pancreatitis. I will keep praying and hoping that the docs will come up with a treatment or a solution for you! Louise