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Need support in pancreatic problems

Merkan

New member
I am 47 years old, and I was diagnosed as a CF patient last year because my wife and I could not conceive due to bilateral absense of Vas Deferens. I followed up the problem, and a sweat test was positive. Then I did genetic mapping test and they found out that I have two mutations of C.2657+5 G>A and C.4242+1 G>A which form a mild type of CF.
I have had digsting problems since childhood as I remember. Sever upper stomach pains which caused me to roll up on the floor when I was a kid. In my 20's I started having back pains on my left side. I normally have gas and bloating which ends up in sever pain if I do not do anything about it. Acid reducing pills such as Famotidine and Ranitidine (Zantac) normally helps. I think the reason is the shortage of Calcium Bicarbonate from pancreas creates this acid imbalance which hurts upper GI. Heavy meals, especially rich in proteins and fats, usually triggers my problems. I have sever gas and back pain in the morning. Taking pancreatic pills with food helps me. I feel that with age my symptomes are getting worse. Fortunatelly, I have no lung problems so far. Around age of 35, when I was living in the US, I got a complete check up of my digestive system, after spending thousands of dollars (my insurance paid for most of it), my doctor told me that there is no problem with me at all. My back pain might be of my bed. Change your mattress!
Now, I am not living in the US. In my home-country, there is no CF clinics. Just one for childern, and in that clinic nobody belives that an adult like me can have CF or my digestion problems are related to CF. I have been to many doctors, but so far none one could help me.
I need your support to know that:
1- Do I have signs of pancreatitis?
2- What kind of tests do you suggest which can clear up my current situation?
3- I am managing my conditions with diets and pills, but what can I do to prevent my simptoms of getting worse or my pancreas of getting more damaged?
4- What other medications do you suggest which can halp me?
5- Is there any surgery which can elleviate my problems?
Thanks so much for your support.
 

Merkan

New member
I am 47 years old, and I was diagnosed as a CF patient last year because my wife and I could not conceive due to bilateral absense of Vas Deferens. I followed up the problem, and a sweat test was positive. Then I did genetic mapping test and they found out that I have two mutations of C.2657+5 G>A and C.4242+1 G>A which form a mild type of CF.
I have had digsting problems since childhood as I remember. Sever upper stomach pains which caused me to roll up on the floor when I was a kid. In my 20's I started having back pains on my left side. I normally have gas and bloating which ends up in sever pain if I do not do anything about it. Acid reducing pills such as Famotidine and Ranitidine (Zantac) normally helps. I think the reason is the shortage of Calcium Bicarbonate from pancreas creates this acid imbalance which hurts upper GI. Heavy meals, especially rich in proteins and fats, usually triggers my problems. I have sever gas and back pain in the morning. Taking pancreatic pills with food helps me. I feel that with age my symptomes are getting worse. Fortunatelly, I have no lung problems so far. Around age of 35, when I was living in the US, I got a complete check up of my digestive system, after spending thousands of dollars (my insurance paid for most of it), my doctor told me that there is no problem with me at all. My back pain might be of my bed. Change your mattress!
Now, I am not living in the US. In my home-country, there is no CF clinics. Just one for childern, and in that clinic nobody belives that an adult like me can have CF or my digestion problems are related to CF. I have been to many doctors, but so far none one could help me.
I need your support to know that:
1- Do I have signs of pancreatitis?
2- What kind of tests do you suggest which can clear up my current situation?
3- I am managing my conditions with diets and pills, but what can I do to prevent my simptoms of getting worse or my pancreas of getting more damaged?
4- What other medications do you suggest which can halp me?
5- Is there any surgery which can elleviate my problems?
Thanks so much for your support.
 
C

cfgf28

Guest
My bf is pancreatic insufficient. He was diagnosedw CF at a few months old due to failure to thrive. He takes enzymes with every food he eats, sometimes a little more with higher fat/greasy foods...He also takes a PPI ( proton pump inhibitor) he takes prilosec. He had his gall bladder removed during his teens. I don't really know how that helped with digestion issues, I believe he was having gall stones. I think as you age the pancreas just becomes more scarred, due to the CF. He still gets stomach aches at times, probably a couple times a week.
 
C

cfgf28

Guest
My bf is pancreatic insufficient. He was diagnosedw CF at a few months old due to failure to thrive. He takes enzymes with every food he eats, sometimes a little more with higher fat/greasy foods...He also takes a PPI ( proton pump inhibitor) he takes prilosec. He had his gall bladder removed during his teens. I don't really know how that helped with digestion issues, I believe he was having gall stones. I think as you age the pancreas just becomes more scarred, due to the CF. He still gets stomach aches at times, probably a couple times a week.
 

Printer

Active member
I was dx at age 47 after 10 years of severe pancretitis, that included over 70 hospalizations.

If I were you, I would visit the US and see an Adult CF Gastro Specialist. In the mean time, if it is possible, I would begin taking pancreatitic enzymes with meals.

Please feel free to send a Personal Message to me.

Bill
 

Printer

Active member
I was dx at age 47 after 10 years of severe pancretitis, that included over 70 hospalizations.

If I were you, I would visit the US and see an Adult CF Gastro Specialist. In the mean time, if it is possible, I would begin taking pancreatitic enzymes with meals.

Please feel free to send a Personal Message to me.

Bill
 
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