Diagnosed with IBS…could it really be that?

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?

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

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.

Thank you so much for writing. I will look it up. Yes I have had so many tests done. Endoscopy and colonoscopy and cat scans and ultrasounds…a lot!

Yes thank you! I advocate for myself and am constantly doing research. I’ll accept what’s wrong with me but it has to be the right diagnosis. I just don’t know anyone or have heard of anyone with IBS like mine. My life is beyond bad for two years. I just need to know they got it right.

Hi! Thank you so much for responding. My bariatric surgeon along with a second one said they have never heard of this as a complication of my sleeve surgery. Yes I had all those tests done..also a pelvic ultrasound…an upper GI Series…a test where I ate something with contrast and they watched how I digested it. I’ve seen at least 8 gastroenterologists…1 surgeon..1 rectal surgeon and 2 bariatric surgeons. I research everyday. I just need some relief.

Hi,
I don't accept what is wrong with me, I can't change it but if I accept it then the urge to fight for something better is gone. Because IBS is a catch all term we are mostly unique in our particular symptoms. By definition a cure is unlikely without knowing the disease.
I have struggled for what feels like a lifetime with IBS and have had every symptom and variation of symptoms from not being able to eat anything to some halfway decent days. My worst period was having the stomach so expanded there was no more give in the skin, unable to sit, having to lay down through not being able to bend at the waist. Abdominal pain off the scale at times, mostly uncomfortable all the time. For me going into SIBO bouts is now the worst affect I get. As the digestive system is complete out of control I'm limited in the amount of food/ fluid I can take per day. Go over it and into SIBO yet again. I have now been living on wholewheat bread and cups of tea for 14 months. Limited to a max of 6 slices per day and 7 cups of tea, usually 4 slices with a slice of shaved ham and 6 cups of tea. I will have a small amount of vegitables once a week with grilled chicken or fish. I'm constantly hungery and have to remind myself how difficult life gets eating more than my limit. My Gastrologist agrees with me if I can tolerate it, eat it, which is why the bread. It has little effect on my stomach in moderation. I have been through the Fodmap several times without success. I stick to what I prepare and never eat anything someone else has prepared for fear of eating something that I react to. I am salt free, sugar free, no herbs or spices. The worst part of it all is the simple fixes I'm constantly given that are well ment but useless to me. In 13 years I believe I have tried it all. Had every proceedure going and still nothing to show for it all. Now with Autonomic polyneuropathy controlling the digestive system and the new diagnosis of CSVD there is nothing but just managing each day as best I can. There isn't going to be a fix and certainly few options for treatment, just fumble my way through each day I manage to wake up.
Sadly I can only empathise with you, I can't offer a solution. Surprisingly I do best and come alive when I'm going through a starvation period, no food just cups of tea to keep the kidneys flushed and happy. I'm CKD, T2 diabetic and stumped for diet with each health issue compromising the other health issues.
Cheers

I am glad to see that IBS is an "I dont know" diagnosis, because this confirms what I thought it must be. I had diarreha every day for a year, except one day when I ate at KFC. I retired because of it. I went to see my primary physician 4 times that year. I did FODMAP over and over, until all that was left to eliminate was my medications. I stopped my PPI Omeprazole and in 2 days the diarreah ended. All that time it had been the PPI. I changed doctors.

Ok, all you IBS sufferers who aren't sure of your diagnosis. One of my neurologists has become a Sjogren's expert because of a family member and he told of what Sjogren's does to the gut. Sound's like IBS. Something to consider.

Hi,
I'm on my 7th Dr, 3 have left, the good ones and the other 3 were a waist of space unable to diagnose the simplest of health issues just peddling medications. My current Dr is from Holland and being proactive I believe is a keeper, she has my back thankfully.
As for medication we all react differently to medications, the secret being can we tolerate each one or not. Basically suck it and see is my attitude, but usually I react. I have run out of BP meds without being able to tolerate any and the same with T2 meds being forced to go to insulin as a last result. Can't tolerate antibiotics and must be administered by injection. I try to keep the list of meds to the essentials only, putting up with pain and only taking codine when absolutely ness. All my problems started with a serious bout of Champylabacta which almost killed me. Prior I had little problems with my health or with medications.
In my search for comfort I have tried a lot of "old wives tales", some with positive results but a lot with no results. I have tried probiotics, and biotics despite the controversy over their use. In the early days I cured the IBS but managed to undo it all with an accident an ensuing surgery and antibiotics.
I now self manage my health along with the guidance and acceptance of my GP and specialists. Some of what I do they tolerate simply because it makes me sort of comfortable and causes less problems than it is supposed to! The search for answers continues despite knowing what I have is incurable and untreatable, there is always hope. Without hope there seems to be no point of existing with what I'm dealing with. It is very difficult to treat the incurable or the unknown cause as with IBS.
Cheers