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medic_simmons
@medic_simmons

Posts: 16
Joined: Feb 20, 2018

Needing input on my symptoms

Posted by @medic_simmons, Tue, Feb 20 12:22am

So for the past 3 months I have had awful middle epigastric pain, new onset constipation, no appetite at all, dizziness, headaches, and horrible itching. The pain came on suddenly in the middle of the night that woke me up from a deep sleep. So far I have had an upper GI barium swallow study, EGD and colonoscopy, 2 CTs, 1 MRI, X-RAYS, and an exploratory abdominal surgery where I had a few adhesions and a cyst on my left ovary. All of my lab work has been fine and all of these tests have been normal. Anyone have any suggestions on what it could be? I am seeing my GI tomorrow in hopes of scheduling an ERCP and if that doesn’t show anything I will be headed to the Mayo Clinic. I’m open to any suggestions on what y’all think it might be.

REPLY

Hello @medic_simmons
Welcome to Mayo Connect. I appreciate your question regarding your digestive problems. I applaud you for being such a good advocate for your own health care. It is obvious that you have been persistent and proactive in seeking a solution and that is one of most important factors in resolving health issues.

While we are not medical professionals at Mayo Connect, perhaps someone else will be able to identify with some or all of your symptoms and offer some suggestions. I see that you are planning to go to Mayo to seek answers if your ERCP does not provide you with answers. That is definitely a good plan.

Since you have indicated this problem is new to you, I have a couple of questions, is there any family history of digestive problems? Have you considered food allergies? Have you ever kept a food/activity journal to see if there are any triggers to your symptoms? While you do not mention your age, I'm assuming that you are a younger person based on your picture.

Have you recently had any unusual stressors, changes in lifestyles, moves, etc.?

I look forward to hearing from you again and I hope that you soon find a resolution.

Teresa

@medic_simmons You don't mention that you have had lab work on your liver-produced protein, such as SERUM FreeLite(c) chain or 24-hour urine collection for protein. Sounds like a progressive disorder which starts small (one cell), divides into a mis-formed thing, dies, and leaves behind a mis-shaped body to deal with.Pretty soon the dead cell bodies take over your tissues. Now, as you get older, your progressive dyscrasia is just beginning to make your life exciting. Anyway, Mayo is a good place to go if you can get into Morey Gertz' section quickly. I have had all the tests your have, and a whole lot more.

@medic_simmons, I send you positive thoughts as you have your ERCP tomorrow. I am sorry to hear of your current situation. I know the discomfort and fear of the unknowing. I hope that you get some helpful information in the results. But I assure you that if you don't – Mayo is top of the field in GI.
Rosemary

Welcome and sorry for your troubles. I have chronic pancreatitis and some of your symptoms line up with mine and some don't. I also have heard very similar symptoms with folks who have had a bad Gall Bladder. That would be the only two experiences I can use to speak to your issues.

@hopeful33250

Hello @medic_simmons
Welcome to Mayo Connect. I appreciate your question regarding your digestive problems. I applaud you for being such a good advocate for your own health care. It is obvious that you have been persistent and proactive in seeking a solution and that is one of most important factors in resolving health issues.

While we are not medical professionals at Mayo Connect, perhaps someone else will be able to identify with some or all of your symptoms and offer some suggestions. I see that you are planning to go to Mayo to seek answers if your ERCP does not provide you with answers. That is definitely a good plan.

Since you have indicated this problem is new to you, I have a couple of questions, is there any family history of digestive problems? Have you considered food allergies? Have you ever kept a food/activity journal to see if there are any triggers to your symptoms? While you do not mention your age, I'm assuming that you are a younger person based on your picture.

Have you recently had any unusual stressors, changes in lifestyles, moves, etc.?

I look forward to hearing from you again and I hope that you soon find a resolution.

Teresa

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There is no family history of any digestive or GI problems. I’m not sure about food allergies because it seems to be pretty much everything I eat besides jello, crackers, and toast. I am only 29, I will turn 30 on Saturday. The on;y recent stressors I can think of is me overthinking everything that is going on with me. Before this suddenly came on the 1st night back in December everything was fine! That’s why it’s so frustrating to me and my team of doctors that we are having such a hard time figuring it out.

@oldkarl

@medic_simmons You don't mention that you have had lab work on your liver-produced protein, such as SERUM FreeLite(c) chain or 24-hour urine collection for protein. Sounds like a progressive disorder which starts small (one cell), divides into a mis-formed thing, dies, and leaves behind a mis-shaped body to deal with.Pretty soon the dead cell bodies take over your tissues. Now, as you get older, your progressive dyscrasia is just beginning to make your life exciting. Anyway, Mayo is a good place to go if you can get into Morey Gertz' section quickly. I have had all the tests your have, and a whole lot more.

Jump to this post

I haven’t had either of those tests done before. I do have a history of interstitial cystitis and hypertension. The hypertension I have had for probably 5 years. I have had bladder issues ever since I was 3 or 4 and finally got diagnosed about 3 years ago with the IC which is controlled very well with 3 medications. I am only seeing my urologist once a year now.

@rosemarya

@medic_simmons, I send you positive thoughts as you have your ERCP tomorrow. I am sorry to hear of your current situation. I know the discomfort and fear of the unknowing. I hope that you get some helpful information in the results. But I assure you that if you don't – Mayo is top of the field in GI.
Rosemary

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Thank you! I saw my nurse practitioner today and she is having me follow up with the md who would be doing to ERCP to see if the risks of pancreatitis are too high. I will know tomorrow if I am going to have the procedure or just go straight to the Mayo Clinic. While the thought of the Mayo Clinic scares me I do feel it is my best option at this time.

@gman007

Welcome and sorry for your troubles. I have chronic pancreatitis and some of your symptoms line up with mine and some don't. I also have heard very similar symptoms with folks who have had a bad Gall Bladder. That would be the only two experiences I can use to speak to your issues.

Jump to this post

The labs that I have had done for the pancreatitis have all been fine and my gallbladder got removed back in 2013, so I’m at a loss as to what could be going on.

@hopeful33250

Hello @medic_simmons
Welcome to Mayo Connect. I appreciate your question regarding your digestive problems. I applaud you for being such a good advocate for your own health care. It is obvious that you have been persistent and proactive in seeking a solution and that is one of most important factors in resolving health issues.

While we are not medical professionals at Mayo Connect, perhaps someone else will be able to identify with some or all of your symptoms and offer some suggestions. I see that you are planning to go to Mayo to seek answers if your ERCP does not provide you with answers. That is definitely a good plan.

Since you have indicated this problem is new to you, I have a couple of questions, is there any family history of digestive problems? Have you considered food allergies? Have you ever kept a food/activity journal to see if there are any triggers to your symptoms? While you do not mention your age, I'm assuming that you are a younger person based on your picture.

Have you recently had any unusual stressors, changes in lifestyles, moves, etc.?

I look forward to hearing from you again and I hope that you soon find a resolution.

Teresa

Jump to this post

@medic_simmons

Your "overthinking" is certainly understandable! You have a very limited diet and that must be difficult – are you able to work and be active with such a limited food intake?

Teresa

Hi @medic_simmons,

I can imagine how stressful and frustrating it must be, to not get a clear answer! You mentioned "…I had a few adhesions and a cyst on my left ovary."
Adhesions are fibrous bands of scar tissue that can be difficult to detect and diagnose, and are often painful.
I'd like to invite @caligodgirl @virtuous69 @kag13 @loriel59 Mentor @jimhd @ginpene05 to join in this conversation as they've shared their experiences related to abdominal adhesions, elsewhere on Connect.
You can read @caligodgirl 's post in this discussion in Chronic Pain group:
https://connect.mayoclinic.org/discussion/welcome-please-introduce-yourself-welcome-to-the-new-chronic-pain-group-im/

And, here are some discussions in the Digestive Health group:
– recurring abdominal adhesions: https://connect.mayoclinic.org/discussion/recurring-abdominal-adhesions/
– Bowel obstructions caused by adhesions following abdominal surgery: https://connect.mayoclinic.org/discussion/i-just-joined-this-site-and-am-looking-to-see-if-anyone/

@medic_simmons, have you found any strategies that help with the pain?

@rosemarya

@medic_simmons, I send you positive thoughts as you have your ERCP tomorrow. I am sorry to hear of your current situation. I know the discomfort and fear of the unknowing. I hope that you get some helpful information in the results. But I assure you that if you don't – Mayo is top of the field in GI.
Rosemary

Jump to this post

Since being diagnosed with chronic pancreatitis, I have had probably 15 therapeutic (stints placed, removed, balloon clean outs, etc…) ERCP's and have yet to have one cause an acute P attack. I do go to the medical school hospital in my state where there are very high volumes of these procedures done. That would be the only thing I would recommend about the ERCP; you do not want to be the fifth person the Dr. has ever performed one on. Good luck and I hope you find some answers.

@hopeful33250

Hello @medic_simmons
Welcome to Mayo Connect. I appreciate your question regarding your digestive problems. I applaud you for being such a good advocate for your own health care. It is obvious that you have been persistent and proactive in seeking a solution and that is one of most important factors in resolving health issues.

While we are not medical professionals at Mayo Connect, perhaps someone else will be able to identify with some or all of your symptoms and offer some suggestions. I see that you are planning to go to Mayo to seek answers if your ERCP does not provide you with answers. That is definitely a good plan.

Since you have indicated this problem is new to you, I have a couple of questions, is there any family history of digestive problems? Have you considered food allergies? Have you ever kept a food/activity journal to see if there are any triggers to your symptoms? While you do not mention your age, I'm assuming that you are a younger person based on your picture.

Have you recently had any unusual stressors, changes in lifestyles, moves, etc.?

I look forward to hearing from you again and I hope that you soon find a resolution.

Teresa

Jump to this post

No. I have been off work since mid December. I can barely unload the dishwasher without having to stop because of pain.

@rosemarya

@medic_simmons, I send you positive thoughts as you have your ERCP tomorrow. I am sorry to hear of your current situation. I know the discomfort and fear of the unknowing. I hope that you get some helpful information in the results. But I assure you that if you don't – Mayo is top of the field in GI.
Rosemary

Jump to this post

I could always get one done at OU med school. That’s our #1 hospital in OK

@kanaazpereira

Hi @medic_simmons,

I can imagine how stressful and frustrating it must be, to not get a clear answer! You mentioned "…I had a few adhesions and a cyst on my left ovary."
Adhesions are fibrous bands of scar tissue that can be difficult to detect and diagnose, and are often painful.
I'd like to invite @caligodgirl @virtuous69 @kag13 @loriel59 Mentor @jimhd @ginpene05 to join in this conversation as they've shared their experiences related to abdominal adhesions, elsewhere on Connect.
You can read @caligodgirl 's post in this discussion in Chronic Pain group:
https://connect.mayoclinic.org/discussion/welcome-please-introduce-yourself-welcome-to-the-new-chronic-pain-group-im/

And, here are some discussions in the Digestive Health group:
– recurring abdominal adhesions: https://connect.mayoclinic.org/discussion/recurring-abdominal-adhesions/
– Bowel obstructions caused by adhesions following abdominal surgery: https://connect.mayoclinic.org/discussion/i-just-joined-this-site-and-am-looking-to-see-if-anyone/

@medic_simmons, have you found any strategies that help with the pain?

Jump to this post

Thank you! And no I haven’t found anything that helps with the pain

@medic_simmons, have your doctors ruled out complications from interstitial cystitis?
I'd like to tag @suzettemh @susierq111 @tbeckys @cbs61752 @kas1792 @operationqueen @rdrdhap @suzette @barb54 @8dzaweek @lexi @jeananderson2014 @mgnunez75 @Weedy @praymond234 @mogulers @kerrilynn1 @jmgm @charlenem, who have all shared their IC experiences on Connect, and invite them to join us here with any insights that may help you.

You can also read through some of the conversations in this discussion:
https://connect.mayoclinic.org/discussion/i-ve-been-told-that-interstitial-cystitis-is-an-autoimmune-disease-are-there/

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