Diagnosed with IBS…could it really be that?

Posted by kendra75 @kendra75, 18 hours ago

Hi everyone. I would love your opinion. Very long story short: in June 2022 I had bariatric sleeve surgery. 4 months later my life completely changed. It started with extreme constipation, severe abdominal pain, trapped gas. It’s been over 2 years and my life is so bad. I am in constant chronic severe abdominal pain with several symptoms with it. From the morning I open my eyes until going to sleep. Sleep is the only relief I get. No matter what I eat or whether I go to the bathroom or not…I am in severe pain. Every single day for 2 years. I was diagnosed with IBS but I feel like I’m dying. I can’t stress how bad this is. I barely go out, barely go to the store and miss many events. My quality of life is so bad. I have been to many doctors and have had many tests done. All negative. Could it be something other than IBS and the doctors have missed it?

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Hello @kendra75,

As I'm sure you are aware, Mayo Connect is comprised of patients, like yourself, who are not medical professionals. Therefore, we cannot guess at a diagnosis for your abdominal pain.

The pain and discomfort you are experiencing must be very difficult. When you said that you have "had many tests done." I'm assuming that has included a CT scan and abdominal ultrasound as well as an upper endoscopy and colonoscopy. Could you list any other tests that have been done?

There are lots of diagnoses that are relatively rare and not always looked for. These include mesenteric panniculitis (see discussion listed below:
https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/
And,
--MALS (median arcuate ligament syndrome (see discussion listed below)
https://connect.mayoclinic.org/discussion/median-arcuate-ligament-syndrome-mals/
On Connect, there is a discussion of members who have had (or are considering) bariatric surgery. You might find their posts of interest to you. Here is a link
https://connect.mayoclinic.org/discussion/new-to-mayo-bariatric-group/
As these symptoms began shortly after the bariatric sleeve surgery, have you talked with the surgeon who performed the procedure? Also, have you considered getting a second opinion with a well-known GI specialist?

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Hi,
A diagnosis of IBS is given because they have no other idea of what you have. IBS is not a disease it is a convienient label given when they have no idea what is wrong with you. I have put up with it for 13 years and only recently did Dr's start making real diagnoses for me after my continual protestations. I had to point out this is not a life I wish to have, with no help I'm left with the alternative of suicide to stop the discomfort, cure or kill their choice. For the last 18 months I have been under a Gastrologist who has risen to the challenge and we have made some minor advances. Thirteen years of hell with a conveinient label of IBS has turned into Autonomic polyneuropahy this year and yesterday CSVD, cerebral small vessel disease. I'm guessing treatment is going to take 10 years to happen at the lacksadaisical way health "proffesionals"conduct themselves. I have lost track of the times I have been told it is psychologial. After MRI imaging they are now facing a dose of humble pie when we meet again! Yes there are tell tale signs of health issues which greatly enhances my assertion I'm not crazy, there is something wrong physically.
All you can do is keep asking difficult questions and put them on the spot, question their diagnosis and don't settle for less. Just remember you are your best advocate and the old addage of the squeeky wheel gets the oil, does work.
Cheers

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I’m so sorry for all that you’re going through. Both my younger son and daughter have ibs. While they do have pain gas and sometimes pain in chest it’s not constant or every day. Have you had gi testing? Colonoscopy? Had a Cta of your abdomen? These are all tests I and my kids have had for similar type issues. I actually was diagnosed with two things. Something called mals( look it up) and dis motility in my esophageal muscles.

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