Severe stomach pain

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.

I get that. We have some excellent pancreatic docs at our states medical university and my GI sent me there when I was considering Mayo and Johns Hopkins. I don't know how they rank nationally as a group, but I have great confidence in them. It is about a 3 1/2 hour drive from my home and, with my wife driving, we can leave home at 5:30, get there, have an ERCP performed to place a stent or use a ballon to remove stones, etc... and be home by about 6PM. Tough for my wife as she usually has to be back at school the following morning, but it is doable. I hope you can get somewhere you are confident in for a team approach to a diagnosis and then some relief.
Gary

@gman007 Gary - just out of curiosity, which medical university did you go to? Thank you so much for your reply and all of your input. I hope today is a good day for you 🙂

The Medical University of SC. It is in Charleston, SC. In the past few years another hospital system in the upstate has begun teaching, but it will be some time before they are likely to have docs who have/are performing high volumes of pancreatic procedures and I would not go anywhere if that is not true. Don't wish to be practiced on.