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

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?

Hello All...This post really hit home for me. I suffer from chronic intermittent abdominal pain. I have seen over 20 doctors in 3 different states and have had the diagnosis of IBS, however, part of me can't help wonder if it is my pancreas that is evading diagnosis. This has been happening for 3 years now. I have had several hospital visits for pain, a gallbladder removal, several CT scans, liver biopsy, pancreatic function test, several ultrasounds, fecal fat tests, and all these tests have come back normal, my lipase or amalayse levels have never been elevated. I did have an EUS done on my pancreas, which showed 4 out of the 9 criteria for chronic pancreatitis. I then took those findings to a highly regarded pancreas specialist in Boston who had performed my pancreatic function test. He said based on the pancreatic function test coming back normal and only having 4 out of the 9 criteria for chronic pancreatitis, that he did not think it is my pancreas. My pain is typically situated in my left side below and under my rib cage. The pain tends to be intermittent, but I do get orange loose stools with it. I typically get mouth ulcers on and off and I get so tired during flare ups. Just seeing if anyone has any input/feedback as I feel I received the diagnosis of IBS because nothing else is showing up. Thank you.

Hello,@nicoleny, this is Mamacita again. I just wanted to point out a few things that piqued my interest. The pain that you are expetiencing is in the same area where I hurt all those years before we knew what was wrong with me. I am not by any means a medical practitioner of any kind. But I firmly believe that we should learn all we can about our bodies in order to be good cpnsumers. Only when we can accurately describe our symptoms can our PCP and specialists properly diagnose us.

I would have to leave work suddenly, the pain was so excruciating. I had all kinds of tests, and even had allergy tests, including food allergies. Turns out I am very sensitive to gluten. For a long time I followed the gluten free diet. That seemed to help a lot. Then I found out I was basically allergic to most all my favorite foods. So I started a modified keto diet. I lost fifty five pounds, but it took a long time.Many of the meds I take for DDD, Spinal Stenosis, Arthritis, and Fibromyalgia actually put on weight. Degenerative Disc Disease is no fun either. I learned that I needed an attitude adjustment when it concerned food.

One doctor felt that I had Gastroparesis as well. But I learned some exercises that help take care of that. We eat pretty healthy, and do the best we can. I don't know if you have IBS or Diverticulitis, but it does sound like you are on the right track. Hope you get some good news soon! Virtual hugs,
Mamacita

Hi @mamacita . Thank you so much for your response. I have had 2 colonoscopies and they found nothing at all. I think diverticulitis would have shown in there?

How long did it take you to get diagnosed? I was tested for celiac and tested negative. Can that evade testing? Also, my pain is typically concentrated in one spot - can that happen with a gluten sensitivity as well? Thank you again. I really appreciate it.

Hi,@nicoleny, it took a very long time to be diagnosed with IBS. I honestly couldn't tell you how long. But the most severe pain was in one spot. I also had very uncomfortable bloating. Several colonoscopies were done over time, and I guess the specialist had to label me with something. The thing that helped me the most was cutting carbs, the ones in high density foods or processed foods.

It has been suggested by many that we are not gluten sensitive at all, but reacting to the chemicals sprayed on most all of our wheat products in this country. Word of mouth stories of fellow sufferers who travel to Italy and eat all the pasta and bread without ill effects seem to have merit. Does make me wonder!

Have you had further testing such as sonogram or CT scans? I would also like to ask you if you feel like you are having muscle spasms in your abdomen? Any swelling? We are all different, and we all will not present just exactly the same way as someone else. I am not in the medical field, nor can I diagnose any condition. But I would definitely check out information from the Mayo Clinic. And if you are not satisfied with the results of the medical care you are being given, give Mayo Clinic a call. I may be biased (Just a little bit!) But they are the best. As you are able, I would really like to hear from you again.
I am so sorry you are having to go through all this pain. Here's hoping for a much brighter tomorrow! Virtual hugs!
Mamacita

I forgot,@nicoleny, I was tested for Celiac, and it was negative. But I read that if it is not done just so, the results can be a false negative.

@mamacita Thank you SO MUCH. Yes, my pain is mostly in one spot as well. I agree with the possibility of how our food is sprayed with chemicals, it's terrible. It's difficult for me to go gluten free as I am a vegetarian but it is not impossible and most definitely worth a try. I don't really get swelling or spasms. It's more like a gnawing pain that gets better and worse. I am thinking of calling Mayo Clinic. I did have an appointment with them about a year ago but did cancel it. It's just a little difficult in the way they schedule over a course of a few days, to arrange with work/flights, etc. It is worth looking into again. I really appreciate your feedback.

Hi @nicoleny! Do you remember the 4 criteria boxes you checked for chronic pancreatitis? I can only tell you that my pain early in my journey was usually at my sternum where indigestion appears, but it was indigestion times 100. It would also radiate into my back. If the pancreas is the cause, the only thing that will just take the edge off the pain is heavy duty narcotics. The only thing I have ever been prescribed that truly relieved the pain is Marinol (synthetic cannabis). It was prescribed to enhance my appetite after several abdominal surgeries and I was not eating enough to heal properly. It was effective for appetite, but also a great pain reliever and sleep aid. Unfortunately, it can now be prescribed in SC for a terminal illness that results in unrelenting pain, such as cancer. After more than a decade of chronic pancreatitis, losing about a third of it to a pancreatic tumor (benign) along with my spleen and a couple of other abdominal surgeries, about 20 ERCP's, etc..., my pain may be anywhere in my abdomen and into my back. Still, when it is most severe, it is where you describe, beneath my left ribcage and into my back.

I don't know if this is helpful or not, but please ask any questions and I will attempt to answer or point you in the right direction.

Blessings and health,
Gary

@gman007 Thank you so much for your reply. I don't remember offhand what the four were offhand, I remember one was hyperchoic foci or something along those lines. I had a pancreatic function test done by one of the top pancreas specialists in the world and he really felt that it was not my pancreas, despite the findings on the EUS. My pancreatic function test was normal. The EUS is the only test that showed a few abnormalities. I am able to sleep. Some days I have no pain, some days I am laid out on the bed with my heating pad, running to the bathroom every so often. I don't really ever experience nausea and have never thrown up from it. But yes, the pain is right where you described it. I guess Mayo would be my next step but it's just difficult getting there for me.