Hello everybody, I am new to this forum. Although I am from India, but I thought I might find a lot of answers here. I will first share my story and then will ask some questions.
My story: I was a fit person (84kg 5'10" 35years father of twin boys). Then it started in 2018 while I was in USA. I never abused alcohol, was mild smoker. My symptoms were always mild. I would get an attack after eating food suddenly - my symptoms were dull pain in top line of my stomach and a feeling of fullness and nausea, nothing else. Next day I will have loose stool and after checking my food, I used to get better with days. I would again go back to original healthy eating and then suddenly baam - again another mild attack. So this continued for 6 months and everytime I used to get better with days passed. I went to so many doctors and specialist and all said that it was IBD or IBS. Someone prescribed me Ciprofloxacin and the side effects were horrible. It made me feel suicidal and I could not sleep. I came back to India to my family and met a doctor. He gave me flupentixol (medicine for depression) and it worked well. I took so many types of antibiotics. The doctors did endoscopy, colonoscopy, CT scans, MRI scans, stool tests and what not. All came out normal apart from once enlarged spleen and liver. Meanwhile I started loosing weight and lost almost 25 lg in 1 year.
I came off flupentixol slowly and started getting the mild attacks again. I never knew what these attacks were. But now these attacks were causing permanant damages. My digestive capability would detoriate after every attack, they were no more like getting better with time. I suspected that I might have chronic pancreatitis, but my doctors would not agree. After one such attack, I felt like my food was stuck upto my throat for hours. I checked internet and found out about CREON. I was desperate, I tried creon 25000 with food. Baam !! It worked the first time. I became normal again. I started eating normal again. But then again another attack and seemed like that CREON dose is not working. I increased the dose to 40000 and it started working again. Then I thought what was causing these attacks, and realised that my stress signals might be causing them. I started flupentixol again and the attacks stopped. I was on CREON 40000 for over an year without any attack. I re-gained my lost 25 kg in that 1 year. I was doing good. Then all of a sudden I had couple of those mild attacks in 3 days as my body became tolerant to the dose of flupentixol. I increased the dose of flupentixol and my doctor added qutipine to the mix and the attacks stopped. I started loosing weight again with Creon 40000 and I was having steatorrhea. I started increasing my dose of creon again and now I take 5 x 40000 with each meal. My weight loss seemed to stop at this dose.
I haven't checked my BG as I never had any symptoms, so I am not sure about my BG. I went to another doctor and he said that I only have IBS which is not true. Creon is so expensive. I am taking the high dose on my own.
My question is - is my pancreas fully dead? The amount of Creon I am taking, normally people without pancreas take that. Am I right? I am trying to increase the dose of my depression medicine as much as possible to avoid another attack. I fear that after the next attack even this high dose of creon will not work. My current diet includes high carb, low fat high protein. I fear of dying as I need to support my 8 months twin boys. I fear that after the next attack, I will keep losing weight and will die. I have read that at my weight, 5 x 40000 creon is the highest I can take to avoid some complications of colonic fibrosis.
Sorry for the long post. It will be great if you people guide me here. I would love to hear from people without pancreas. I fear that these mild attacks will take away my pancreas one day too.
With love,
Pinaki
My story: I was a fit person (84kg 5'10" 35years father of twin boys). Then it started in 2018 while I was in USA. I never abused alcohol, was mild smoker. My symptoms were always mild. I would get an attack after eating food suddenly - my symptoms were dull pain in top line of my stomach and a feeling of fullness and nausea, nothing else. Next day I will have loose stool and after checking my food, I used to get better with days. I would again go back to original healthy eating and then suddenly baam - again another mild attack. So this continued for 6 months and everytime I used to get better with days passed. I went to so many doctors and specialist and all said that it was IBD or IBS. Someone prescribed me Ciprofloxacin and the side effects were horrible. It made me feel suicidal and I could not sleep. I came back to India to my family and met a doctor. He gave me flupentixol (medicine for depression) and it worked well. I took so many types of antibiotics. The doctors did endoscopy, colonoscopy, CT scans, MRI scans, stool tests and what not. All came out normal apart from once enlarged spleen and liver. Meanwhile I started loosing weight and lost almost 25 lg in 1 year.
I came off flupentixol slowly and started getting the mild attacks again. I never knew what these attacks were. But now these attacks were causing permanant damages. My digestive capability would detoriate after every attack, they were no more like getting better with time. I suspected that I might have chronic pancreatitis, but my doctors would not agree. After one such attack, I felt like my food was stuck upto my throat for hours. I checked internet and found out about CREON. I was desperate, I tried creon 25000 with food. Baam !! It worked the first time. I became normal again. I started eating normal again. But then again another attack and seemed like that CREON dose is not working. I increased the dose to 40000 and it started working again. Then I thought what was causing these attacks, and realised that my stress signals might be causing them. I started flupentixol again and the attacks stopped. I was on CREON 40000 for over an year without any attack. I re-gained my lost 25 kg in that 1 year. I was doing good. Then all of a sudden I had couple of those mild attacks in 3 days as my body became tolerant to the dose of flupentixol. I increased the dose of flupentixol and my doctor added qutipine to the mix and the attacks stopped. I started loosing weight again with Creon 40000 and I was having steatorrhea. I started increasing my dose of creon again and now I take 5 x 40000 with each meal. My weight loss seemed to stop at this dose.
I haven't checked my BG as I never had any symptoms, so I am not sure about my BG. I went to another doctor and he said that I only have IBS which is not true. Creon is so expensive. I am taking the high dose on my own.
My question is - is my pancreas fully dead? The amount of Creon I am taking, normally people without pancreas take that. Am I right? I am trying to increase the dose of my depression medicine as much as possible to avoid another attack. I fear that after the next attack even this high dose of creon will not work. My current diet includes high carb, low fat high protein. I fear of dying as I need to support my 8 months twin boys. I fear that after the next attack, I will keep losing weight and will die. I have read that at my weight, 5 x 40000 creon is the highest I can take to avoid some complications of colonic fibrosis.
Sorry for the long post. It will be great if you people guide me here. I would love to hear from people without pancreas. I fear that these mild attacks will take away my pancreas one day too.
With love,
Pinaki
