Fighting the fight

Posted , 3 users are following.

Hello, all 

I've been fighting something for some time now and I was hoping this post may come back with some suggestions or direction, as I haven't had a lot of success medically or independently to this point. For several years I've been experiencing GI issues without a diagnosis. Mainly my symptoms are - pain (burning, stabbing, etc) in my upper abdomen,which does radiate to my back at times. Additional symptoms are weight loss, muscle spasms/cramps, cluster headaches, floating stools, high ANA's, and numbness in my feet / toes. I've had rounds of blood and stool work done, all come back unremarkable. In addition, I've had an endoscopy, two endoscopic ultra-sounds, at CT-Scan, upper abdomen MRI, and another upper abdomen MRI with contrast. All negative. The only thing that has come back abnormal were my ANA results from blood work but the medical professionals say that is unspecific. I eat and exercise well. Mainly raw veggies with some protein (salmon or chicken). I stopped drinking as a result of thinking that may have been the cause. Apologies to all for the long note but I'm feeling desperate and just hoping to learn anything that anyone has learned through thier experiences, etc. This site has been a positive finding in itself and I'm thankful for that. The best to you all. 

Thanks. 

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6 Replies

  • Posted

    Have they ruled out hiatus hernia, gallbladder and pancreas? All of those would cause your symptoms. 

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    • Posted

      Hi Linda,

      Thank you for the reply... yes, they've ruled out hiatus hernia. As for my gallbladder and pancreas - I've had numerous blood, stool, and imaging done and all come back negative. I've personally narrowed it down to that myself - although all the results have been negative. Just not sure what direction to go from here. Thanks again.

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  • Posted

    I think ANA is autoimmune but they normally run a specific test. For example I tested positive for ANA because I have Hashimoto’s autoimmune thyroid disease. However there’s many different autoimmune diseases. 
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    • Posted

      A lot of your symptoms sound similar to pancreas symptoms but you have had almost all the tests to diagnose the pancreas. It took the doctors over a year to diagnose my condition however I have a rare pancreas condition where you’re born with two pancreatic ducts that never fused together called Pancreas Divisum. I had blood, ultrasound and regular endoscopy all come back normal. I then had a CT Enterography catch atrophy of my pancreas (irreversible degeneration of the pancreas usually associated with chronic pancreatitis). When I found that I advised my primary doctor who sent me to a GI. (I always request copies of my reports and look up the terminology of the results). The GI ordered a MRCP (special type of MRI specifically for the pancreas). The MRCP was the only test that caught the two ducts. My GI still thought my symptoms were IBS related so I asked to see a pancreas specialist. I saw the pancreas specialist who performed an ERCP to confirm the Pancreas Divisum diagnosis and he also diagnosed me with chronic pancreatitis too. They don’t use an ERCP for diagnostic purposes because it can cause a pancreatitis attack. I had to get ERCPs every other month for ten months but they’re no longer helping. Every time I wake up with pain I rest my pancreas. I do this by not eating for a couple days. I stick to clear broth then add Ensure. Once I am brave enough then I slowly add solid foods. It also helps to eat six small meals rather than three big meals as it’s easier to digest. My doctor also advised me if you have pancreas issues raw veggies are hard on the digestive system but frozen veggies are okay. Do you get pain after eating? That was a huge indicator for me. The pain was so bad, I was scared to eat. Your stool can float from gas, I would pay more attention to the color and texture (I know gross). If it’s pale or clay color or if it’s really greasy and hard to flush then your pancreas is acting up. I don’t get diarrhea like most people with pancreatitis do, I am the opposite. If you journal your foods, you might find a link to what you eat has an effect on you. I was advised as we age, our bodies develop food intolerances. I can’t handle cheeses anymore they make me super sick! I also get spasms in my back and my legs/feet go numb but I have a nerve disease that is completely unrelated. I hope you find answers soon. 
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    • Posted

      Hi Shortie,

      Thank you for all the excellent feedback. There really aren't any foods that give me pain immediately after eating...although I should add that I should add that my diet is pretty strict and typically consists of vegetables and lean protein. Regarding veggies, are the frozen veggies raw and then thawed? Just trying to get an understanding on how you go about eating your veggies that helps you.

      I do pay a great deal of attention to my stool and it is pale / clay colored and / or greasy at times. As you know, it's a daily battle trying to figure it out. Thank you for the input feedback. 

      Thanks,

       

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    • Posted

      Regarding the veggies, I normally buy frozen broccoli and corn. I buy green beans in the can but I make sure they’re in water. I do eat some fresh veggies like zucchini but anything harsh or might contribute to gas I definitely stick to frozen. I also stay away from juice. I eat an orange a day because it helps with inflammation but I cannot drink orange juice as it upsets my stomach. My doctor thinks it might be because there’s too much sugar in juice. It’s also recommended to eat applesauce instead of apples. I don’t know if you drink caffeine but it’s recommended to stay away from it. 
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