Chronic Abdominal Pain

Posted by lz5b00 @lz5b00, Mar 21, 2012

I have had acute abdominal pain since April 2011 and it has escalated over the months.. The pain begins early morning, remains unrelenting and escalates throughout the day. It is sharp at times and gnawing most of the time. It radiates down from my sternum and to the lower left of my abdomen. My family doctor nor GI specialists cannot find the cause. I have had CT scans, ultrasound, video capsule endoscopy, colonoscopy, blood tests, push endoscope, H pylori tests, ova stool test for parasites and MRI, to name a few. EVERY test result has been returned as “unremarkable”–no cause found. I am currently taking Paxil 25mg, Nexium and Oxycodein for the pain. Nothing has helped me determine the source of this pain. I am reaching out to this community to see is anyone has a similar experience.

@hopeful33250

@carolel

I am sorry to hear of your chronic pain. Your concern is certainly understandable. Have you discussed this with the surgeon who performed the laparoscopic cholecystectomy in 2002?

Please remember that it is always your right to get a second opinion.

Teresa

Jump to this post

I have since investigated this and it appears that he is now practicing in Sydney, Australia. To be honest, when I was an inpatient and leading up to being admitted, I was seen by about 11-12 different doctors, and I can only recall seeing one more than on one occasion

REPLY
@stillsearching

I had similar symptoms years ago and it turned out that my pancreatic duct was bent which did not allow the pancreatic juices to flow. It took me years to discover this. I had all of those tests too and they came back normal until I had an ERCP with a fantastic gastro wizard at UCSF (San Francisco) Keep track if the pain gets worse after eating (when the pancreas starts to work). Mine hurt more in the morning also because laying flat (sleeping) took the pressure off of the duct then ramped up the rest of the day I hope this helps. I’m on a new journey for chronic pancreatitis that has taken over my life. I’m thinking of going to Mayo clinic for some help to get some (or any) life back. I wish you a positive outcome. Don’t give up

Jump to this post

Did the ERCP's give you a pancreas attack? Were you diagnosed after EUS? What does it show if you have chronic pancreatitis?

REPLY
@stillsearching

I had similar symptoms years ago and it turned out that my pancreatic duct was bent which did not allow the pancreatic juices to flow. It took me years to discover this. I had all of those tests too and they came back normal until I had an ERCP with a fantastic gastro wizard at UCSF (San Francisco) Keep track if the pain gets worse after eating (when the pancreas starts to work). Mine hurt more in the morning also because laying flat (sleeping) took the pressure off of the duct then ramped up the rest of the day I hope this helps. I’m on a new journey for chronic pancreatitis that has taken over my life. I’m thinking of going to Mayo clinic for some help to get some (or any) life back. I wish you a positive outcome. Don’t give up

Jump to this post

Apparently the ERCP showed a slightly inflamed pancreas but the blood results indicated that it couldn’t be pancreatitis

REPLY

@carolel

What an interesting turn of events. Even though the hospital has been demolished and the doctor is no longer in the country, I feel sure that the hospital records do exist somewhere. It might take some time to track them down, though.

In the meantime, however, are you interested in getting a second opinion at a research facility like Mayo? They have three facilities, Minnesota, Florida and Arizona. Here is how you can call for an appointment, https://www.mayoclinic.org/appointments/

I look forward to hearing how you resolve this situation. Will you post again?

Teresa

REPLY
@stillsearching

I had similar symptoms years ago and it turned out that my pancreatic duct was bent which did not allow the pancreatic juices to flow. It took me years to discover this. I had all of those tests too and they came back normal until I had an ERCP with a fantastic gastro wizard at UCSF (San Francisco) Keep track if the pain gets worse after eating (when the pancreas starts to work). Mine hurt more in the morning also because laying flat (sleeping) took the pressure off of the duct then ramped up the rest of the day I hope this helps. I’m on a new journey for chronic pancreatitis that has taken over my life. I’m thinking of going to Mayo clinic for some help to get some (or any) life back. I wish you a positive outcome. Don’t give up

Jump to this post

Hi @carolel
I am a volunteer mentor, but have been on a sort of sabbatical for the summer months. This thread appears to have started about 6 years ago, so I am gonna respond to your recent post and if anyone else would like to ask questions, I will respond. I have carried a diagnosis of chronic pancreatitis since 2006. I was hospitalized with acute pancreatitis three times for a total of 30 days that year and had many tests, a gall bladder removal and scans later in the year showed calcification and scarring of my pancreas and a continuous level of pancreatic inflammation. The main reason I am replying to your post is that elevated pancreatic enzymes in the blood are not always present in pancreatitis. My pancreas had been damaged to the point that it was unable to produce enzymes in large enough quantities, after the third attack, to be revealed on a blood test. My youngest son either inherited the problem from me or we are just an unlucky family as he has had two acute attacks. With his most recent, his lipase was very elevated, but his amylase was only slightly above normal. My point is, there are other ways to evaluate your pancreas and that should be done. If it is not related to your pancreas, I would consider that a blessing, but I would not know which direction to point you in if it is not.
Blessings and better health,
Gary

REPLY
@hopeful33250

@carolel

What an interesting turn of events. Even though the hospital has been demolished and the doctor is no longer in the country, I feel sure that the hospital records do exist somewhere. It might take some time to track them down, though.

In the meantime, however, are you interested in getting a second opinion at a research facility like Mayo? They have three facilities, Minnesota, Florida and Arizona. Here is how you can call for an appointment, https://www.mayoclinic.org/appointments/

I look forward to hearing how you resolve this situation. Will you post again?

Teresa

Jump to this post

Thank you for your offer but that would be impossible for me for many different reasons which I would rather not discuss but I will keep you informed of my situation. The next step is an appointment I have with the gastroenterologist in September

REPLY

@carolel I certainly hope that you are able to get some more help and information from this appointment in September!

Teresa

Liked by aesmayo01

REPLY
@stillsearching

I had similar symptoms years ago and it turned out that my pancreatic duct was bent which did not allow the pancreatic juices to flow. It took me years to discover this. I had all of those tests too and they came back normal until I had an ERCP with a fantastic gastro wizard at UCSF (San Francisco) Keep track if the pain gets worse after eating (when the pancreas starts to work). Mine hurt more in the morning also because laying flat (sleeping) took the pressure off of the duct then ramped up the rest of the day I hope this helps. I’m on a new journey for chronic pancreatitis that has taken over my life. I’m thinking of going to Mayo clinic for some help to get some (or any) life back. I wish you a positive outcome. Don’t give up

Jump to this post

Hey Gary,
Thank you for your reply. When I was first hospitalised one consultant diagnosed pancreatitis and I started treatment with IV antibiotics but after 1 day’s treatment I was seen by a surgical, either ho or registrar, who stopped all treatment. As a result of your reply, I am now wondering if the course of antibiotics had been completed, it might have at least treated the problem initially or completely. Believe it or not, I was a nurse for many years, initially in paediatrics and later in adult colo-rectal, but I have been medically retired since 2006 because of mental illness. Sometimes,recently, I have wondered if possibly, the medics won’t take me seriously because of this and maybe think I’m hysterical. I don’t recall any similar case in all my years of nursing.
My next port of call is a follow up with the gastroenterologist in September. I’ve only met her once but she did give me the impression, mistakenly or not I don’t know, that she would maybe be prepared to listen, but as she only has a clinic twice a year I have to wait six months to speak to her. The bloods she ordered were ‘normal ‘ but I haven’t had the results of the stool test.
At least, since speaking to some fellow sufferers on this site, I will be able to face her armed with plenty of pertinent questions so thank you again for sharing your experiences with me,

God bless,
Carole

REPLY

Thank you, Theresa.

REPLY
@stillsearching

I had similar symptoms years ago and it turned out that my pancreatic duct was bent which did not allow the pancreatic juices to flow. It took me years to discover this. I had all of those tests too and they came back normal until I had an ERCP with a fantastic gastro wizard at UCSF (San Francisco) Keep track if the pain gets worse after eating (when the pancreas starts to work). Mine hurt more in the morning also because laying flat (sleeping) took the pressure off of the duct then ramped up the rest of the day I hope this helps. I’m on a new journey for chronic pancreatitis that has taken over my life. I’m thinking of going to Mayo clinic for some help to get some (or any) life back. I wish you a positive outcome. Don’t give up

Jump to this post

Hi Carol @carolel and you are very welcome. I have some psych issues as well, but mine have become acute during my years of opioid treatment for the pain caused by pancreatitis. I have had GAD (general anxiety disorder) for most of my adult life, but the pain and treatment for it have led to major depressive disorder. I am getting some very good treatment with a new psychiatrist and some genetic testing she requested, so I am coping much better. The physical side of things is not good and it is just a result of the progression of the diseased pancreas. I battle pain, nausea, diabetes, and a weakened immune system daily and it is unlikely to improve. I am not whining as I am aware on a daily basis of the fact that my list of blessings is much longer than my problems, but I am realistic about those. I do much better by accepting what the disease does over time as opposed to always wanting a "cure".

Of course, you can not even get a diagnosis and that has to be incredibly frustrating. If your GI does not believe you have pancreatic issues, I would look for a high volume center for a pancreatic specialist. It would be very difficult for me to get to Mayo, but the Medical University Hospital in my state is a high volume center for things like ERCP's and pancreatic surgery. You really want someone who does the procedure many times in a given day or week as opposed to 6 per year. Your GI can probably point you in that direction. Please don't hesitate to ask any question and I will attempt to answer if I have experienced the situation.
You have my prayers for an answer, Gary

REPLY

I have had this terrible gnawing pain in my stomach/abdomen for going on three years now It is miserable I lost a good job I had because of it They have ran every test possible and can’t tell me for sure what’s causing it I have an amazing and almost too understanding wife and I have two year old I barely feel like a man any more because I’m in so much pain all the time

Sorry Needed to vent

REPLY
@matt2134

I have had this terrible gnawing pain in my stomach/abdomen for going on three years now It is miserable I lost a good job I had because of it They have ran every test possible and can’t tell me for sure what’s causing it I have an amazing and almost too understanding wife and I have two year old I barely feel like a man any more because I’m in so much pain all the time

Sorry Needed to vent

Jump to this post

I just want to feel normal so I can take care of my wife and baby again

REPLY

They have suggested gastritis, gerd, and have even removed my gallbladder thinking that was the cause but the surgery and none of the medicine has helped at all They will not even prescribe me anything for the pain because they say it can make it worse

REPLY
@stillsearching

I had similar symptoms years ago and it turned out that my pancreatic duct was bent which did not allow the pancreatic juices to flow. It took me years to discover this. I had all of those tests too and they came back normal until I had an ERCP with a fantastic gastro wizard at UCSF (San Francisco) Keep track if the pain gets worse after eating (when the pancreas starts to work). Mine hurt more in the morning also because laying flat (sleeping) took the pressure off of the duct then ramped up the rest of the day I hope this helps. I’m on a new journey for chronic pancreatitis that has taken over my life. I’m thinking of going to Mayo clinic for some help to get some (or any) life back. I wish you a positive outcome. Don’t give up

Jump to this post

Hi Gary, I really do hope that you don’t mind me sending this and that it isn’t sent out for everyone to see. Like you I probably have a lot more things to be thankful for than I do problems but I am finding it hard to see them at the moment. I have very little/no friends I can sound off to or confide in. I’m not stating this because I want pity. The only reason for this I can think of for this is my mental illness because I have heard someone I regarded as a friend say they didn’t know how to treat me or talk to me so I tend to think this is true of everyone. I do have a husband whom I love dearly and who has stuck by me through thick and thin, but I am aware that I have probably treated him dreadfully at times over the years I said to him that I didn’t like constantly discussing my physical problems with his mother, who seems to enjoy discussing everyone’s health but today I was the one who brought up the subject and wouldn’t stop talking about it. I think it’s because that and emotional problems are occupying my every waking thought. I am aware that this probably makes me a hypocrite in everyone’s, but in particular my husband’s, eyes. I have been suicidal in the past but I’m pretty sure that I would never be again as, at the moment I would consider myself to be selfish if I was and there are no words to describe how awful places our psychiatric hospitals are. However I am emotionally distraught at the moment because I am aware that, at the majority of the time, my husband no longer listens to me. For reasons that him and I only know, I despise being ignored to the point that it could exacerbate my mental health problems. I do not intend to criticise or condemn my husband as I am of the opinion that he has every right to do this although I am really struggling to accept this. I do and always have told when I am in pain only so he can witness this when we consult doctors, but I do realise that perhaps this could become a bit tedious for him. For this reason I try not to talk too much at home but tend to become very talkative when with anyone else. Since traumatic events when I was twelve years old I have always been criticised for being ‘too quiet ‘ and this has led to me having no self confidence but just recently I had become more confident and talkative, much to my delight, only to realise it seems to be unacceptable. I know too that because of this and because I tend to be unassertive and avoid confrontation, I feel I may not get the reaction we are hoping for when I see the consultant in September. The next clinic is May 2019 so I am aware that if I am not assertive enough I may have to suffer without any answers until then. I have also, very recently, occasionally doubled the prescribed morphine does, which sometimes helps, and I know won’t be harmful and is definitely not due to dependence but purely due to the severity of the pain.

I apologise for ranting excessively to you, but because you mentioned that you were a mentor and you perhaps have had experience of similarity and sometimes I can write more easily than speak, but if I am wrong (with no reason to think so), I know you don’t have to read this, although I did mean to state this at the beginning of this.

Thank you for taking the time for me, whether or not you read all of this, for giving me reason to trust you and feel that I had someone to sound off to. I don’t expect you to do or write anything unless you feel you wish to A’s this in itself has helped me,

Kind regards,
Carole

REPLY
@stillsearching

I had similar symptoms years ago and it turned out that my pancreatic duct was bent which did not allow the pancreatic juices to flow. It took me years to discover this. I had all of those tests too and they came back normal until I had an ERCP with a fantastic gastro wizard at UCSF (San Francisco) Keep track if the pain gets worse after eating (when the pancreas starts to work). Mine hurt more in the morning also because laying flat (sleeping) took the pressure off of the duct then ramped up the rest of the day I hope this helps. I’m on a new journey for chronic pancreatitis that has taken over my life. I’m thinking of going to Mayo clinic for some help to get some (or any) life back. I wish you a positive outcome. Don’t give up

Jump to this post

Hi there, @carole, how are you feeling this afternoon? This is Jane, a Volunteer Mentor here with Mayo Clinic Connect. This seems to be just one of those times when I was meant to see a post not specifically meant for me. Most people call me mamacita,as this was my username when I began consulting eith Mayo Clinic Connect. I picked Mamacita because I am Mom to a lot of different people.I am just one of those Gramma type people who want everyone they meet to be fed, comfy, and happy. Normally I can be found in the Autism sections, Depression/Anxiety sections, and the Fibromyalgia sections.

But today your post caught my eye. Untreated IBS, as well as Divericulitis can cause Chronic Abdominal Pain…which is exactly where your post came from on my email list. I noticed that several people suggested going gluten free for a month. That definitely helped me. It might work for you. What works for one, might not for another. I am certainly not a doctor, but we can at least share our experiences with one another. And the resources of Mayo Clinic are available for you. I have lost a lot of friends myself through the years. People don't have much patience for those who have chronic pain. But I get it and so do the other mentors. I would love to hear from you.You can vent to me any time. I am here for you! Ok? Ok! Talk to you later?

REPLY
Please login or register to post a reply.