Scared and Desperate

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Hi All,

I am so desperate for anyone who has suffered the same issues as me and can let me know I am not alone, or that I am not dying. It all started 22 weeks ago when I went to the hospital thinking I had the flu. Flu test was negative but got a script for Tamaflu and stated this regiment. Stupid me, had a script for Bactrim for an infection last year, and took it as well just in case I had step (wasn’t tested). About 3 days left in the script, I developed terrible upper left abdominal pain, sort of under the ribs. 1 week later, my poop began to float, then shortly after the stools to expel this weird yellow, yellow/brown liquid that stains the entire bottom of the toilet once the stool hits water.  Here I am 22 weeks later and I have all of the same symptoms, except now my blood sugar is going crazy (I’m not diabetic) and I’m beginning to develop neuroapthy.  Stools are mostly normal consistency, a few loose here and there.  I’ve had a stool test (negative cdiff) and a CBC which only showed slightly low red cells, neutrophils, RDW, hemacrit. I had a non contrast CT which was clear.  I just had an endoscopy yesterday that was clear.  I am terrified I have a pancreas issue, maybe cancer though my liapese is normal, my amylase was low at 25 U/L. I’m desperate for relief and answers. Thank you in advance. 

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  • Posted

    I’m sorry you are having a rough time. I am also scratching my head as to why you aren’t taking your blood sugar issues to your doctor. In all honesty, this doesn’t sound like a pancreas issue given your normal test results, but if you are that worried: go to a doctor. Have you had pancreas problems in the past? Until I got pancreatitis I really didn’t even EVER give a thought to my pancreas. Why are you wondering if your pancreas is the issue... especially when your tests don’t seem to indicate an issue. I wish you the best, friend.
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    • Posted

      Thank you for the reply Renee. I did take the issues to the doctor but all they said was I shouldn’t worry about it so much that I may “have a little bit of insulin resistance”.  The area of the abdominal pain and the weird floating stools is what has me convinced it’s my pancreas, in addition that sudden blood sugar change.  I am in a constant state of panic, and I’m worried that either it’ll be diagnosed when I already have one foot in the grave. 
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  • Posted

    It could be a reaction to your medication. Unfortunately you need a GI doctor who specializes in the pancreas in order to diagnose you. I have chronic pancreatitis due from Pancreas Divisum. I was born with two pancreatic ducts that never fused together. It took the doctors over a year to diagnose me. I had normal, blood, ultrasound and endoscopy. I had a CT Enterography catch atrophy of my pancreas but not the two ducts. It was the MRCP that caught my two ducts and then I asked to see a pancreas specialist because my GI thought my symptoms were IBS related. My pancreas specialist performed an ERCP and diagnosed me with chronic pancreatitis. I had never been diagnosed with acute pancreatitis but I have chronic. I’m 38 and my symptoms didn’t start until approximately two years ago after I started a new pain medication for another condition I have. I stopped the medication but my symptoms didn’t stop. The pain was/is unbearable with pancreatitis. I have a pretty high threshold for pain but not with pancreatitis … unfortunately there’s nothing that can manage that pain when you have a full blown attack except going to the hospital. You would have more symptoms if it were your pancreas. I know we’re all different but I lost almost 50 pounds in a matter of months, had pain after eating, acid reflux, bloating, vomiting, nausea everyday, hair loss (my hair was falling  out in hand fulls but I’m getting treatment so it doesn’t fall out as much), I don’t get diarrhea but constipated and I’m always itching. However that’s my new normal because I have two ducts. I suffer from pancreatitis symptoms all the time without getting a full blown attack because my ducts get clogged. I know the difference from an attack because of the pain. However, like I said those with pancreas issues will have different symptoms but debilitating pain is standard. If it is your pancreas, it’s manageable with the right treatment. 
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    • Posted

      Shorty thank you for the reply and I am very sorry to hear about what you have been through. I am quite certain my condition isn’t pancreatitis, but I fear it’s the big C. Do you have any bowel changes with your condition?  I am pushing my Gastro for a MRCP as well to go ahead and nip this thing in the bud and get the agony of waiting over with. I sure hope you start feeling better! 
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    • Posted

      Yes I have bowel changes but they’re usually in color. When they’re clay colored then I know my pancreas is flared or my bile isn’t draining correctly. What I was advised was it’s very unlikely for someone my age to even get pancreatitis. It would be common for a person with cystic fibrosis, or a family history of pancreatitis, which I don’t have either. I’m not certain you can have a condition with your pancreas that’s not either Pancreas Divisum or pancreatitis but I also haven’t looked into anything else. I had researched my symptoms and looked up the medical terminology from my reports myself and that’s how I got diagnosed. My primary doctor told me it was out of her expertise and I felt my GI doctor wasn’t listening to my complaints because of my other condition which is unrelated. I hope you find answers and relief soon. 
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    • Posted

      I have had a hard time with doctors as well understanding or even believing that my symptoms are unrelated to stress and anxiety. They don’t understand that the lack of treatment or even identification of what is wrong with me is what is driving my anxiety. Hopefully medicine will improve from a doctoral and treatment standpoint and finally give you relief soon! 
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    • Posted

      I completely understand your frustration. As I stated, it took the doctors over a year to diagnose me and I had numerous tests all come back normal even though I have two ducts. I kept telling myself how could these tests miss my two ducts?! Thank goodness for the MRCP, as it’s the only noninvasive test that really looks at the pancreas. Was your MRCP done with contrast? There are certain medications that can cause pancreatitis but I don’t know which ones they are. If you really feel like it’s your pancreas then I suggest you rest your pancreas for a few days. Resting your pancreas means you don’t eat any solid foods. Drink Ensure or chicken broth for a few days and then start introducing bland foods. When a person has pancreas issues they usually need to stick to a low fat and sugar diet. Raw veggies may upset your stomach but frozen veggies are okay. Eating an orange helps with inflammation and I take Tylenol (however Aspirin is not allowed). Also eating six small meals rather than three big meals is easier on the stomach to digest. You can also try heat packs on your back and stomach which helps with pain. If you end up having pancreatitis, it’s one of the hardest conditions to diagnose. Be your own advocate and don’t let your anxiety get the best of you because it will cause more pain. 
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    • Posted

      Unfortunately I am still trying to convince my doctor that I need a MRCP. The only scan I had done, was at the hospital which was a non-contrast CT, of which we know does not really highlight the organs of the body.  This is why I am still very certain they have yet to see whatever issue I am having with the pancreas.  I may follow your dietary advise to see if I will alleviate my symptoms. I have tried increased fiber and different probiotics lately to no avail.  It did bulk my stools, but they still are way off.  Totally agree with being your own advocate, you have to be in this day and age in medicine, thank yo for the advise it is very much appreciated!
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  • Posted

    Does your pain aggravate or change with movement like walking or doing slight physical activity? I am suffering from upper abdominal pain caused by antibiotics as well. It has been over 7 months without relief, my pain was strong. How strong is your pain and has it changed your eating habits?
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    • Posted

      Hi Human,

      In fact, my pain most recently started to get worse with particular movements. My pain is on the upper left, what side is yours? Anything like leaning or bending over towards the left side certainly aggrevates it. Have you had any bowel changes associated with your pain? Any tests or labs performed? 

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    • Posted

      Yup mines in upper left as well. I did endoscopy, blood tests, mrcp (mri), ultrasound, all normal. Mine feels like someone punched me or like severe cramp in upper stomach. It went so bad that even deep breathing and talking could touch the pain, it felt like as if the upper left part of stomach is spasming but antispasmodic meds didnt help me neither did ppi. Sometimes pain feels like a ball othertimes its like severe cramp. Walking, brushing teeth etc touches and aggravates pain. Mine is severe in a sense that I was unable to eat properly and lost around 15kgs in just 4 or 5 months and movements aggravated it, I havent stepped outside of my home in these 7 and half months because of pain. Physical activity hardens the muscles around where the pain originates and later it aggravates pain. My bowel movements are normal, stool color is definitely a little light but thats because I am only surviving on white rice and some boiled and cooked vegs, I dont have much appetite and scared of eating something which might be difficult to digest. Have your eating habbits changed?
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    • Posted

      No I dont want to use pain killers because I want to fix the problem not mask it. I was a healthy and active guy who never used any meds. This was my first time using these heavy antibiotics big mistake!! I dont know what antibiotics have done to cause this pain.
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    • Posted

      Not all pain management has to do with drugs.   I guess it depends on your pain. My daily pain is tolerable compared to a pancreatic attack so I deal with it.  I will take nothing stronger then tramadol.  It takes the edge off but never gets me pain free. 

      Hate any of us have a daily challenge.  

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    • Posted

      Yes its difficult to live with the pain daily. Does your pain aggravate by movement aswell? Actually my doc first thought it was pancreatitis but none of my tests showed it plus my pain aggravates with movement aswell meaning movements like walking and brushing touches the pain. Does your pain aggravate by movement or does movement touch, aggravate or play any role in your pain?
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    • Posted

      Deep breaths cause my pain. Moving not very much.  The pain is always there.  I had acute necrotizing pancreatitis in Oct of last year.  5 procedures, malnutrition 3.5 weeks in ICU and 3 hospital stays between then and now.  I’ve lost 50% if my pancreas.  No alcohol, low fat diet no red meat. 

      I’m happy to hear your Dr does not think it’s pancreatitis. I sure hope they figure out what it is. 

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    • Posted

      HI Human,

      The only movement that really intensifies the pain is deep breathing (esp after a meal), twisting or leaning to the left, or slouching over to that side as well.  Other than that, it just a regular deep knawing, sometimes dull ache that is worst after meals.  One good thing working for you, is that you have not had any bowel movement changes.  That can indicate your pancreas is working as it should.  Have you looked into costochondritis?  With the movements causing most of your pain, this could be something of substance.  What antibiotic was you taking when this started?

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    • Posted

      Amoxicilin and Clairythromycin. Pain is not in outer abdominal muscle but either in inner abdominal wall or outer stomach muscle. The worst pain is when I feel like my stomach in upper left part is being strangulated its like severe cramp or like someone punches you its unbearable. My stomach also feels like its falling.
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