In so much pain, what should I do?

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I had my gallbladder removed two months ago and I have been living in a nightmare ever since. First, let me say that I am normally a healthy person and lead an active lifestyle. I was diagnosed with Gallbladder Disease and told my gallbladder was enlarged and would need surgery. This was in August 2016. I was in the ER, and they never gave me a referral for a surgeon. So I went to my family Doctor and he referred me to a surgeon. They had me do a Pipida scan and it showed that my gallbladder was functioning at 10%. My original surgeon was out of town and I was going to the hospital on a weekly basis at this point from the excruciating pain. I was yelled at by a nurse in Triage who said I would have to figure out how to eat and that though she felt bad for me that I reality I needed to know that nobody cares about my gallbladder problems and it wasn't a big deal. She said she didn't believe my pain level and that she had two people whose lives were "circling the drain" and she wasn't going to admit me and was going to flag me as a person searching for pain meds. She said that she would bet that I wouldn't even be scheduled for surgery for another 90 days. I left in tears and feeling defeated. I literally told my husband that it was OK, just let me die. My husband spoke to the surgeon's staff and git me scheduled for surgery a week later (not 90 days). The next day I was rushed to Urgent Care and was told by them that they couldn't help me that I needed to go to the hospital. I went to the hospital that Urgent Care referred me to ( after I relayed what the triage nurse at one hospital told me, needless to say they were floored that I was treated that way.). Upon my arrival to the ER they had 3 doctors and 5 or 6 nurses trying to get me stable, they said my kidneys were shutting down and my creatinine levels were off the charts. They were keeping me until my surgery the following week and one doctor asked if I had ever been diagnosed with Kidney Disease. So I was there for a week and had my surgery, the surgeon said that I needed to have my gallbladder removed and I was lucky that it didn't rupture. I went home the same day I had the surgery with plenty of meds. I was healing fine and feeling better. After my surgeon released me and said I could start normal life again, I was back in the hospital 2 weeks after surgery for pain in my abdomine. They couldn't find out what was causing the pain and had 5 different doctors tell me that I shouldn't be in this kind of pain after surgery. I went home 5 days later with no idea where the pain was from.

One week later I was in the ER again for the same pain and was told I had a kidney infection. I followed up with my regular doctor and he didn't believe I actually had a kidney infection and said I shouldn't be in this much pain after surgery, he suggested that I follow up with the surgeon and prescribed Bentyl. The surgeon said surgically there was nothing wrong with me and nothing he could do and to see a GI doctor.

I ended up visiting the ER two more times, once for a kidney infection and the last time for horrible abdominal pain. The staff in the ER are tired of me. The Dr said I was running out of options and that I shouldn't be in this amount of pain. He finally referred me to a GI doctor and said that I was to take Advice and Tylenol for the pain.

Now, I'm in constant pain, I cry all the time. Advice and Tylenol don't help me and in tired of having all the doctors tell me I shouldn't be in this much pain. I eat and drink a lot through out the day, but I'm still dehydrated. I was told by a doctor in the ER recently that I need to eat and drink more because I'm dehydrated. The CT scans show nothing, and my labs come back normal everytime. I have an appointment with the GI doctor in November and don't think I can hold on that long. Is this what my life is going to be like? I can't take this anymore.

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14 Replies

  • Posted

    I'm so sorry you're still in pain ! I have no answers, hopefully someone will chime in with a suggestion~ All I can say is that is NOT normal. I'm surprised your CT was clear ! I was thinking maybe you have a kidney stone hiding or something.. Do try to hydrate; I know it's hard when you don't feel good and certainly aren't hungry sad Try just a few bites and sips every time you can tolerate it. I will pray they find an answer soon~ This is a journey, a year from now it will be not that awful ! Take it one day at a time. Can you ask for a 2nd/3rd opinion ? or ask to be examined by a different hospital ? Is there a diagnostician you could speak to that specializes in liver/pancreas/gallbladder/kidneys ? Hugs to you~

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    • Posted

      Hi 2 gall,

      Thank you for your kind words. I will definitely be seeking 2nd and 3rd opinions and will try another hospital. I have an appointment in November with a GI doctor and hope that I find something out. You're right, I'm not very hungry feeling but I do make myself eat and drink something so I can have something in my stomach. I look forward to the day when this is over with and I can get back to normal life.

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  • Posted

    Wow. Sounds like you’ve had a time with Dr’s.. One reason I trust NO ONE but myself. Sooo, Im not a DR but I have researched A  Lot of things.. AND Just went 6 years with a bad GB and had it out on the 11th. I looked up A LOT that can go wrong…So I’ll try and help.. AGAIN I AM NOT A DR..  First question I have is WHAT ARE YOU EATING? Second QUESTION – How much at a time are you eating?  Third Question – What time are you eating?  Fourth question, Where exactly is the pain? What does it feel like?. Lets start with that. I work a ful time job but will try and check in at least once a day
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    • Posted

      Hi vic39330, thank you for your questions. 1. I am eating soups, fruit, crackers, vegetables, baked chicken and brown rice. I don't eat any spices, fat or anything fried. I drink mainly Gatorade and water. 2. I eat small light meals and try to break it into 4 or 5 meals a day. 3. I eat around 9, 12, 4, and 6 or 7. 4. The pain is radiating from my upper right side just under my ribcage, I get cramps in my stomach, my left shoulder hurts, I get horrible head aches, my back around my kidneys hurts, and once a day my ribcage hurts so bad it feels like someone is taking a rope around it and tightening it so much that it's hard to breathe, I have a steady fever of 99 degrees and at night I wake up sweating and a fever of 102. The pain is sharp, like a knife and makes me cry and double over holding my abdomine.The back feels achey and I get a burning pain in the middle of my stomach where my belly button is.

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    • Posted

      What an absolute nightmare you're going through.  It seems to me that there are multiple things going on with you, while doctors are looking at just one thing.

      You're doing all the right things as far as your diet goes.  Hopefully, the GI doctor will be able to sort it out.  I think the problem has been that the ER docs and the surgeons don't know enough to really help you, and as I said, they're looking for one thing to be wrong.

      I'll keep you in my thoughts and prayers.  Please let us know how you get on! xx

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    • Posted

      Well eating sounds ok..  T fever concerns me a bit. have you had blood work?  White cell count? Any other labs? You mentioned all come back OK..   Any scans? Ultra sound or better yet MRI?
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  • Posted

    This sounds like an absolute nightmare!  I don't know where you live or what kinds of medical facilities you have there but, if you've had several experiences and some of them, horrible and uncalled for, I'd seriously consider getting records together and going to another area, another city or even another state.  I am so sorry you are having all this trouble.  You could do something I wish I'd done many years ago and that is keep a journal, a record to refer to.  Each visit, what doctor, what treament was done and what meds worked and which didn't and why not.  Sorry to sound so bossy.  I come off that way when I am angry at the treatment someone has had.  Let me know what happens.  I care!

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    • Posted

      Hi Sally,

      Thank you for your advise. You don't seem bossy, I understand where you are coming from. That is a great idea, I will document my experiences and gather all my records. I have been Journaling my experiences off and on through out this and will become more adamant about this. I will try other hospitals, and doctors to find an answer. I'm researching better facilities and am looking at going the next state over. I will keep you posted on what happens. Thank you so much.

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  • Posted

    Update:woke up this morning to excruciating pain in my upper right side , the pain is doubling me over, I'm finding it's gotten worse and I'm screaming and crying from the pain.. I'm going to the hospital.

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    • Posted

      Oh, my gosh!  So sorry to learn about this!  Please let us know what happens!  You're in my prayers! xx

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    • Posted

      I went to the hospital two days ago and was stabilized. The doctor there was more knowledgeable and made an appointment with a GI doctor for me. I went to the appointment with the GI doctor today, and found out it could be sphincter oddi, an ulcer or a spasming muscle near my stomach. He put me on dicyclomine, an antispasmodic and set me up for a endoscopy next Wednesday. I'm still in pain, but I'm really ready to find out what's wrong and be done with this stuff. I will keep you updated when I find more out.

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