Hello everyone, My names Rob im 30 a year old male. i've been suffering with a diagnosed PI-IBS for about 2 years. i would like to share with you all my story of this horrific journey through this illness and how the myriad of symptoms i've had have shifted and changed as times progressed. im still suffering with it now so there is no cure here. My intent is just for people to see what its like and anyone else suffering knows there not alone.
So i caught food poisoning from a resturant local to me in mainland UK that resulted in 48 hours of chronic vomiting and diarrhea, This was really bad actually ive never experienced anything like it was sick on the hour every hour i was just a mess.
i felt a bit better on the 3rd day and a bit more on the 4th day etc and i made about an 80% recovery after a week but always felt fatigued and a bit off after the experience but never made a FULL recovery.
about 10 days after the food poisoning still at about 80% i woke up with a slight nagging pain in my left side that progressed worse and worse all day and by 3 am the next morning i was in excruciating pain, it felt like a really bad stitch from to much running only x100 i couldn't walk upstairs or function at all, it was like a cramping pain that i was telling myself "it'll go soon, it'll go soon" .... after about 2 weeks of this pain and the onset of what i can only call CHRONIC nausea, room spin like having downed a bottle of vodka was with me all the time, but i was not sick ever since the food poisoning.
The doctor gave me Ompeprazol 20mg and also did a bunch of blood tests and said come back in a month. a month passed, the symptoms were still the same blood work was ok. so the doc upped the dosage to 40mg of Omeprazol. after 2 months i the pain was gone. sort of. but the nausea was still really bad, during the first 2 months i had lost 4 stone in weight. (nearly 26lb)
the next 6 or so months that followed i had been sent for an ultrasound and endoscope up and down. and had many many stool sample tests for everything and for H Pylori... all came back negative, I was sent for a full body CT scan in the next few months. that didn't show anything either.I then got referred to a gastroenterologist who saw me a few times on a few different occasions but eventually told me its PI-IBS and proscribed me Mebeverine and an antidepressant, i now see a diatition. and over the last year ive been Caffeine / alcohol / gluten /dairy free, and follow a STRICT fodmap diet thats even more limited to that.
During the 2 years ive had this illness ive experienced horrific nausea, no appetite, occasionally i get chronic constipation but most of the time im regular and normal. i get BAD SWEATS, especially at night or lying down i have big hot flushes as my guts are moving, I also suffer with what feels like bad fatigue with this, im exhausted all the time with it but struggle to sleep. i get very depressed and even on my good days the most i can do is go to a shop for some food shopping, then i have to come home again to rest.
its been a complete game changer, i feel very isolated and upset at times, its gone on far to long and at times i wonder if ill ever get my life back and meet a nice girl, *shrugs*
After a long time suffering and carefully monitoring my symptoms i make a note of everything that makes me worse and ill avoid it.
one thing strange that happens when i drink say a glass of room temperature tap water i can feel it pass down my throat and round into my stomach, i read the word "Hypersensitivity" somewhere, and that is the best example for what i feel now, for me swallowing a sip of water feels like for a normal person running an ice cube down there arm, thats what it feels like going down. when i had the CT scan they make you drink a liter of water before the scan and i was in utter sweats i couldn't even drink half of it in 30 min and walking out of the hospital after the scan i needed a wheelchair. i was pale and looked like a walking corpse. But this same extreme sensitivity is all the way down which is why it hurts so much when i get constipation because im so sensitive inside.
good question right? well for me i think taking responsibility for getting better is number 1! i now only work a few days a week from home and i give myself all the free time i can, i had to move back home with my mum and dad while i give myself the recovery time to hopefully get through this. Dont be scared to do your own research and propose an idea to your doctor no matter what they tell you, they are not you. Cut out as many stressors as you can, and of course do your own food elimination diet. get to see a dietitian if you can, Peppermint oil is good for problems going to the toilet, take 3 capsuals a day 30 mins before meals.
The Mebeverine they prescribed me doesn't really do much. Chewing food properly, remember digestion starts in the mouth. for me dont alter your diet to much, find something that works, a set 3 meals and stick to it. just a mild change here and there if you must. Exercise is good, dont do to much tho, ive just brought an electric mountain bike so i dont need to peddle if i dont want to its great fun, just sit there and do a 20 mile ride.
Probiotics didnt do anything for me, ive tried all sorts. some very expensive to. Neither did digestive enzymes work.
i've read that it can take over 5 years to get better from this PI-IBS and my symptoms are improving slightly, every 6 months i look back and i notice a mild improvement. But you really cant rush this getting better, prepare yourself to be in for the long haul, hanker down and put your feet up, this is going to take a long time.,
Thank you for reading my story (sorry it was long) i hope it helped someone out there