To ask for help with a medical diagnosis?

[Nidan2Sandan]

Okay, not an actual diagnosis as I realise this is an internet forum blah blah blah. But I'm at my wits end and I hoped with the variety of people on here that someone, somewhere has the same issues and can point me in the right direction. So here goes.......sorry it'll be long

I have always suffered with stomach ache. Right in the middle where my solar plexus is. I remember as a child rolling in a ball, screaming in pain. My mum describes me as a baby doing the same, pulling my legs up and just being inconsolable. But it didnt happen often, once every few months and would last for a few hours at most.

As I've gotten older it's gotten worse, to the point the pain is almost permanent. To describe it, it feels like my stomach is being eaten from the inside. Most of the time it's there just as a dull ache, but I have what I call "episodes" where its debilitating agony and I will often feel sick, dizzy and just moving/talking hurts.

I'm an active person, karate instructor, I run, i have 3 kids and the stomach pains are really starting to affect my daily life more and more each year. I havent been able to teach at my karate club for the last 2 weeks and had to leave work early one day this week.

I've seen doctors and hospital consultants. I've had a camera down the throat (endoscopy??) and an ultrasound. All sorts of tests etc.

So far I had a week in 2010 where the hospital thought I had an infection, maybe gall bladder or pancreatitis and was kept in for a week. I showed infection markers but everything else was fine and I was sent home (I was 12 weeks pregnant with my second DC). Ultrasound was unremarkable and endoscopy showed no issues.

I've had lansoprazole, esoprazole, omeprazole (excuse spelling, I'm not 100% sure on how to spell these) and over the last few years given amitriptyline for what Drs now say is a chronic pain condition with no known cause.

I take rennies and sometimes they help, often they dont but it feels acidic, like I say, like my stomach is being eaten away. Oh and when in pain, I burp like you wouldnt believe!!! Again, makes me think stomach acid.

So, I have Drs saying unknown chronic pain condition. Medication does fuck all and my life is slowly being taken over by it. I'm worried about the next years.

Oh, should also say i have had allergy testing and avoid foods i cant eat. Have tried gluten free, FODMAP etc to no avail.

So, any bright MNetters have any ideas? Is there a Dr on here that may have a suggestion?

@Nidan2Sandan

*Have they done a barium xray? MRI? CT? Checked for coeliac?*

Coeliac has been ruled out, only scan has been an ultrasound.

OK you need more than an ultrasound.

More detailed xrays and scans such as those I've listed will indicate any physical abnormalities such as something obstructing or twisting the bowel or other part of the anatomy.

If you hadn't had a colonoscopy or sigmoidoscopy then this is a good idea too.

They really should investigate it more thoroughly before writing it off.

To answer your question, malrotation of the intestines is a disorder that occurs during fetal development where the intestines do not rotate into their correct position. It can cause acute obstruction in babies, but often it doesn't, and can be asymptomatic. Over time abnormal ligaments (called Ladd's bands) form, which can cause obstruction to the intestines - this can be acute, which is an emergency, or chronic, which can cause intermittent pain, vomiting etc.

Here's an extract from a medical paper:
Midgut mal and nonrotation refers to failure in counter clockwise rotation of the midgut which results in misplacement of the duodeno–jejunal junction to the right of the midline; in addition the small bowel mesentery has narrow vertical posterior attachment which is prone to volvulus.

Other anatomical abnormalities include peritoneal (Ladd's) bands running from the right colon to the lateral abdominal wall and an extensively mobile ceacum that fails to descend.

Malrotation can present as an acute surgical emergency or with more chronic abdominal symptoms.

Acute presentation is with volvulus of midgut or ileoceacum occurring most frequently in neonate with likelihood decreasing with age.[2,3] In most of the reported cases of this presentation, patients present with bilious vomiting in the first month of life because of duodenal obstruction or a volvulus.

The chronic presentation is a diagnostic challenge. In most of the reported cases, the usual symptoms were crampy abdominal pain, nausea, vomiting, bloating. The symptoms may be nonspecific. Hence diagnostic delay is common. In a case series by Dietz et al., the duration of symptoms extended as far as 30 years. Pathophysiology of these chronic symptoms may relate to the compressive effects of peritoneal bands running from ceacum and ascending colon to the right lateral wall.

Diagnosis is made by imaging CT scan. The short mesentery allows the small bowel to twist around the narrowed SMA pedicle to create a distinctive “whirlpool” appearance. This appearance is a diagnostic clue of malrotation. Another diagnostic clue is abnormal orientation of the superior mesenteric artery and vein relationship. The superior mesenteric vein lies abnormally to the left of the artery.

Crohn's can be very tricky and cause symptoms in the part of the gut that you can't get an endoscopy to (in the middle). There can be cases where crohn is the most likely but can't be proven. Not saying it is, just adding some fact.
(Crohn's usually has other side effects as well - undernourishment, hard to conceive, drastic weight loss,.... )

When I got diagnosed with Crohn's 2x years ago a fellow patient told me about Mutaflor. This is a very specific probiotic designed for crohn/UC.
If you are at the end of your wits it might be worth a try. It will do no harm, worst case is it won't help either.
For me it was a life saver: together with steroids and other specific drugs it helped get my crohn's under control. I do a 3 months "cure" every few years when things start to go sideways and so far helped me keep out of hospital.

I am not an agent of theirs, really have no idea how to get it even.
I had to order from Canada and then from Germany through the years. Might be worth a look.

Intersuception?

Intussusception (in-tuh-suh-SEP-shun) is a serious condition in which part of the intestine slides into an adjacent part of the intestine. This telescoping action often blocks food or fluid from passing through. Intussusception also cuts off the blood supply to the part of the intestine that's affected.19 Jan