My story, advice for everyone.
I thought I'd post my story since it's a good reminder to push for testing and fight for your right to good care.
When I was sixteen I started to have some GI issues. The typical IBS symptoms and whatnot. I saw my doctor who confirmed it was likely IBS based on my strong family history with it. I accepted that diagnosis with no tests and it was one of the bigger mistakes I've made so far in my short life.
When I turned seventeen my condition worsened I started having pain during and after eating no matter what I ate along with incredibly severe 4-6 hour lapses of pain and vomiting. I went back to my doctor who told me it was probably just 'very severe IBS' and sent some blood work off.
My blood work showed I was deficient in most things likely due to the amount of vomiting and the lack of eating I was doing. Over the next year I was at my doctors office multiple times a week begging for something to be done as I only kept getting worse.
In the span of only a few months I had lost roughly 31 kg while being house bound due to my symptoms and was seeing every doctor I could hoping just one of them would try something new.
I was on a whole lot of medicine too, daily codeine, Amitriptyline, omeprazole, mebeverine, mintec... the list does go on.
Finally being heard
One day in specific I went to the doctors after being unable to even drink water let alone eat anything, grappling with incredible pain and very obviously jaundiced. My doctor told me it was 'likely a hormonal issue' (some doctors really do push the lady problems thing huh?)
I ended up in an ambulance that night following my mother and father finding me unconscious covered in vomit. When I came to in hospital the incredible doctor informed me I had Acute cholecystitis (a serious condition where the gallbladder becomes inflamed), death of the gallbladder tissue and liver damage.
And honestly, it felt great to finally feel I had been listened too and that something WAS actually wrong with me. I had dozens of doctors make me feel like I was wasting their time.
I ended up having a battery of tests including an MRI and an Ultrasound which showed the presence of a laceration on my liver, the doctors warned me this may be a tumour and that they were not yet sure what kind it was. It was really something to grapple with all by myself in a hospital bed at the age of seventeen.
My tumour was tested and rescanned and it actually ended up being four tumours, a rare variant called 'hepatic adenomas' or 'heptocellular adenomas'
They are mainly benign, they can rupture and in rare cases turn into cancer but I am very lucky to have them be benign on diagnosis.
I was in such a state of disbelief. I mean, I was only seventeen and in hardly any risk factors for either of these conditions. I felt like the most unlucky person ever.
I had my gallbladder successfully removed on April 5th this year and it felt so amazing to be able to eat again. I was feeling back to normal for the first time in forever until one night I once again woke up on the bathroom floor surrounded by concerned family and I was back to hospital.
I was diagnosed with a condition called 'sphincter of odd dysfunction' where essentially the muscle that opens and closes to allow bile and pancreatic fluid to go and digest food remains closed and a build-up of fluid in the abdomen causes some pretty severe pain.
I'm currently waiting for an ultrasound and some testing to confirm what type of this disorder I have. and am being treated with morphine in the mean time for the pain.
It is quite surreal being on this kind of medicine at only 18 but it doesn't hinder me at all. I refuse to let this overcome me and consume my life. I live completely normally as an eighteen year old, I study a psychology and childcare course and I go out with friends and call my mum drunk to come pick me up just like most 18 year olds do.
Anyway, my objective in sharing this is to let people know that yes, I also have IBS! But for so many doctors to accept my pretty obviously unusual symptoms of it was not fair at all. Please, please, please fight for your right to good care and treatment. Not a single soul deserves to feel as dismissed as I did. There is always a doctor who will listen to you. Demand testing, if you are denied the testing ask the doctor to put that they denied the testing requested on your file so they are held accountable. We are never guaranteed our health or even our lives so fight for it at every chance you get, in the end it's all you have.
(sorry for poor grammar or formatting! I'm dyslexic but I hope this was at least a little bit legible.)
Do you have a good understanding of what triggers your flares?