Living in Fear

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Hello, I am new to this forum. I had my gallbladder removed last year due to "sluggish emptying" and everyone said I would be back to normal within a couple of weeks, but I am wondering now if anything will ever be normal again. Two months after my cholecystecomy, I was awakened at two in the morning by a distressing pain in the center of my upper abdomen. I drank some baking soda and water and then a can of ginger ale, trying to relieve the pressure I felt building in my tummy. One good burp and the pain will stop, I thought as I paced the floors of my darkened house, wondering if I were being a hypochondriac. Then the pain got intrnse, fast. I found myself hyperventilating, gasping in breaths to control the burning, tightening pain in my upper abdomen and back. I fell onto my hands and knees beside the bed and called out for my husband, who was asleep. Between gasps I told him I needed to go to the ER.

Long story short, I spent the next 3 days in the hospital receiving nothing by mouth. The doctor said my pancreas was "on fire." Digestive enzymes "off the chart."

After this one episode, nothing happened for a couple of months, then WHAM! I was on my way to help a friend run her daughter's yard sale when out of the blue that same horrible, gnawing, intense pain returned. I was gasping and writhing in the passenger seat, trying to find a way to escape the pain, and my friend started driving straight toward the nearest hospital when WHAM--the pain dissipated as quickly as it had come. I felt fine then, just embarrassed, and went on and worked the yard sale.

Since last year, I have suffered at least ten of these mini attacks of pancreatitis, three of which happened last week. They seem to be getting more intense and painful, so much so that I actually begged a coworker to dial 911. Of course, by the time the paramedics got there, the pain was subsiding, so I didn't go with them. I did go to my GP on the same day and tell him about it and he set me up for an endoscopy because he was sure I had a stomach ulcer. I had the endoscopy and guess what? No stomach or duodenal ulcers. I have told every doctor I have been going to that these are brief attacks of pancreatitis--once you feel it once you never forget that pain--but for some reason I am getting the runaround, it seems. First they suspected IBS...then a gluten intolerance, and finally an ulcer. I know what I am feeling. Do any of you experience these random, violent attacks of pancreatitis, and if so, what should I do next? I am living in Fear that anything I eat will bring on another attack. I don't want to live in fear! I just want to live!

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  • Posted

    This sounds awful and I don't have any advice as such but I've found you don't get many replies from this forum. If your on Facebook join 'chronic pancreatitis support group' so many people from all over the world on there and were a great help to me when I thought my problems were my pancreas. You will get replies no matter what time of day/night. Good luck and hope you get to the bottom of it.

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  • Posted

    Hi Donna! :-) I'm sorry, first and foremost, that you've been having a rough time with this. I too had my gallbladder removed about 2-1/2 years ago now. Although I won't tell you that all was "fine"...because ever since they removed it my digestion has never been right...what I recently experienced, however, is something different. I had what they called a "mild" pancreatitis attack, a few weeks back. My dr however, feels that it was more apt to have been a stone in my bile duct that got stuck for a bit, thus causing the pain like you describe...that dissipates a short while after it appears...and that it disappeared because the stone passed. She said pain from pancreatitis does not just "dissipate". I never had that pain except for when I had gallstones and also similar, although different area, with kidney stones (yup, lucky me, my body likes to make stones...hereditary). My doc told me that some people are just predisposed to make stones, even without the gallbladder. Remember too, that your gallbladder was there for a reason...filtering bile that now does not have that "filter" any longer. You clearly had a pancreatitis attack that first hospital stay, especially because of your levels you indicated were high, however, WHAT caused that is what you need to know. In the e.r. for me, they said, "oh even ONE drink could've done this. Uhhh...I don't drink. When I ever did, I literally had A drink on a special occasion or holiday. Told him I hadn't had one in weeks. He just repeated that just one could do it. Lol. They automatically seem to assume you are a drinker if you come in with pancreatitis. Smh! Most docs are completely clueless about the pancreas it seems. There are very few specialists out there too. Do some research on line. Look up sphincter of oddi and diet for pancreatitis. From what I've read, do NOT drink alcohol at ALL anymore. Keep to a more raw diet and stay clear of fried or fatty/heavy foods. It seems once you "wake the sleeping pancreas" lol...you have to be very careful there forward not to make it "angry". Also, one very nice woman posted recently that she has been taking vitamin c (3,000 mg a day) daily, after her mother did research and found it can heal the pancreas. She said she hasn't had an attack since taking them. I'm definitely going to try it, because after all, it's just vitamin c and good for your body anyway. Oh, and pay close attention to your monthly cycle and attacks Despite docs dismissing it, there are forums with TONS of woman stating that their attacks correlated with their cycles. Funny, because I was in the middle of mine when it first happened last month and the other day when I started this month, I felt funny again. No attack...but...I did get (sorry) diarrhea and lost a couple pounds and just didn't feel right. That's what made me do a search and sure enough, there is a correlation without a doubt. I wish you luck and my advice, depending on your insurance, get another opinion and if you can manage to find a gastro doc that specializes in the pancreas, go to them!

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    • Posted

      Thank you both for replying. I have been doing a lot of research over the past couple of days and have drastically changed my diet. No meat, no nuts, no oils, no dairy, no grains, no raw vegetables or fruit, and very little fat (under 20 g). I have dropped six pounds and actually managed to have a bowel movement (too much information, but I figure it's okay to share that here). Not sure if this new way of eating will prevent another attack, but I figure it can't hurt. Did I mention that I frequently (almost always) have a pain in my upper right abdomen since having my gallbladder removed? I call it my "ghostbladder" and it seems to feel more uncomfortable than usual for several days before an attack of acute pancreatitis. When I had blood tests done on the same day of my last bad ten-minute attack, my white blood count was up, my blood glucose was up, my triglycerides were up, my kidney levels were low, but my digestive enzyme levels were normal. I am really starting to think that I either have a stone that gets stuck in a duct or sphincter of oddi dysfunction. I am going back for another blood test on Friday and will ask my doctor if I need an MRCP. Told you I have been doing a lot of research! Thank you for your help and caring. I will surely let you know if I ever get to the bottom of this. Feel well.

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  • Posted

    Hi Donna, I had acute pancreatitis in Feb. Yes I have flairs. I have had to be super careful. I have cut back on fat intake. I eat vegetable soups and salads and fruits. Small portions, small amounts of chicken, salmon. Grazing is the key. Lots of water. My lipase is still on the high side. My GI thinks it is medication that is causing it.
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  • Posted

    I know what you are feeling with mini attacks. I have had them for many years. In my 20s I got lots but never diagnosed then 10 years ago I had a few longer attacks that put me in hospital. Since then I had a few years with minimal pain then about 2 years ago the mini attacks came back. They can be intense but the don't last long. It's true once you've had it, you know the feeling. I never went to dr on those. I wait it out at least an hour.. Usually it's gone. The nausea and vomiting I get usually last 2 to 3 days around Same time. Right now I'm on day 5 of mild to sometimes strong pain, so went to get tested and of course my lipase are high. Only reason I went was because its lasted few days, and ran out of nausea meds too. Check the timing of your mini attacks.. I only get them right before period or occasional ovulation time. Usually fine rest of days. Hang in there.. I've had them 10 plus years without any worsening of pancreas.

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