Severe stomach pain

Has your son been referred to a gastroenterologist? I would start there so they can begin testing to rule out any medical conditions. You just have to be an advocate for yours and his health and keep on the medical team until you get a diagnosis and begin treatment. Good luck. It's so frustrating.

I had a ruptured brain aneurysm. However I recovered extremely well from this except my CSF fluid was not draining. I had two lumbar punctures which helped however my neurosurgeon advised me that I needed to have a VP shunt put in place. I did not realise at the time that this would involve open abdominal surgery. Ever since I have suffered for over the past five years with chronic severe abdominal pain which progressed over the years to my upper abdomen and intercostal muscles on both the left and right sides. I have have CT, X-ray, endoscopy, colonoscopy, and like yourself the medical consultants have found no cause that they can see. After five years of tortuous pain both day and night, I cannot walk and am basically bed bound. My GP has prescribed various medication such as fentanyl patch, co-codamol, antispasmodics, and other muscle relaxers but the pain remains unabated. The hospital and consultants send me home to "manage my own pain". I admit that I have spent a lot of time contemplating suicide however our innate human behaviour advocates survival and I have two young adult sons who give me the only reason to keep going. I believe that nerve damage/compression was caused during the VP shunt surgery however the Consultant neurosurgeon whose team carried out the operation take no responsibility and in fact now don't even give me normal routine follow up scans as I still have two unruptured brain aneurysms as they just want to distance themselves from me and the damage they caused. I am currently on a waiting list for the last two years to see a pain specialist however it could be another 3-5 years before I get an appointment. Many people with nerve damage are misdiagnosed as having IBS/IBD. I wonder if you could ask your doctor to refer you for tests to ascertain whether it may be nerve damage/compression which is causing your ongoing chronic severe pain. On a more personal note I have complete empathy for your situation and hope that someday someone may be able to help you. Be progressive in seeking referrals and don't wait for a miracle.

I have been going through similar stomach pain for the last 8-10 months, something all the tests so far show nothing. I have have CT, X-ray, endoscopy, colonoscopy, ERCP, HIDA scan, gastric emptying study, you name it I probably have had it. I already had a partial gastrectomy 13 years ago for gastroparesis and have been good up until the last 8-10 months. I have lost 35 lbs and still losing. Doctors seem to be throwing their hands up, even the specialist I am seeing at UPenn which is supposed to be one of the best places for gastro issues. It is appalling how the doctors have no empathy and just want to give you pain meds without trying to figure out the cause. Been looking to this site to see how others have been handling similar issues. Help!

Hello. I feel so compelled to reply to you as I believe I am reading about myself--minus the weight loss. I am 1.5 years into what must be a maddening debilitating brain-gut disorder causing extreme daily bloat, gas buildup, etc. I have given up on all G.I. docs--out of 6, I have seen 2 who thought "out-of-the-box" to attempt to help me. I have also had every type of CT, MRI, gastro test x2 out there. Normal except slow motility. All Rx's, and even non-Rx's do not help me. My reject box of meds has grown (thank you,
Amazon!). I do a considerable amount of reading and attempt modalities on my own. I referred myself to the Cleveland Clinic G.I. team and their doc told my last G.I. doc what further tests I needed. However, after those results didn't yield anything besides slow motility, she basically threw up her hands.
I had spine surgery 14 months ago and got COVID. Both of those undoubtedly play into my condition. IBS-C is definitely what I have. I have seen a pelvic floor P/T who has helped me more than any doc. But still I suffer. Best of luck to you.

Thank you, I know I have IBS-C, I have had it for a long time. The new thing is the abdominal pain when I eat or drink. Do you know what tests they ordered? I would be interested to see what they looked at. I am considering Mayo Clinic or Cleveland Clinic but am hesitant since I have been to Hopkins years ago and UPenn both which were supposed to be leading edge programs. The thought of starting over again... is just overwhelming as well as the travel that would be needed. Thanks for your insights and if you are comfortable please let me know what additional tests they ordered.

The tests that the C.C doc ordered were: 1. Sitz marker test; and 2. Colonic motility test. The Sitz marker test can be done at most radiology/imaging centers. The colonic test I had to go to the University of Washington medical center for it. Just an fyi.

Thanks, I have had the site marker test and 10 of the 12 markers were still in the colon 6 days after the test. I have not had a colonic motility test.

I am so sorry to know this. I experienced something similar when none of the doctors in Germany or India could find anything wrong with my body despite me telling them of the unimaginable pain I feel in my lower abdomen and when all the results came back normal they asked me to consult with a psychiatrist. I did not listen to this because I knew the pain I felt was something wrong with my body and not mind. DO NOT stop listening to your body even when the doctors ask you to. I was diagnosed with a tumor and a genetic disorder after I ended up in the ER with blood coming out of my stools. That is when they finally took me seriously. I believe I have IBS-C too, and what greatly helps me is this medicine called Bullrich Healing Clay tablets. Also, staying hydrated is what I found out to be extremely helpful. Doctors have not been of much help.

Thank you for sharing your story—I'm so sorry you had to go through such a difficult and painful experience just to be taken seriously. It's incredibly frustrating how often people, especially women, are told their symptoms are psychological when they know something is truly wrong in their body.

If you're comfortable sharing more, I’d be interested to know: what kind of tumor were you eventually diagnosed with, and what was the genetic disorder they discovered? Also, how long have you been taking the Bullrich Healing Clay tablets, and have they made a noticeable difference for you?

I really appreciate your openness—your story is a powerful reminder to trust ourselves and keep pushing for answers.

likely is mesenteric panniculitis