Structured Symptom & Treatment Tracking for Patient Advocacy

Had watery stools 12 a day, 4 years ago. Since I have family history of IBD I went through the process quite quickly. My calprotectin was 500 and I did colonoscopy, gastroscopy and MRE. All turned out perfect. My calprotectin has normalized two months after that and I pretty much gave up on a diagnosis. Went back 2 years after, still I had diarrhoea 8-10 times a day but it wasn't watery anymore, and I was also diagnosed with osteoporosis which I was told to be from PrEP (truvada). I got tested for coeliac and sibo also did an ultrasound that was perfect too. So I tried to treat as IBS so that meant Fodmap, no preservatives, probiotics, digestive enzymes, fixed up my mental health. And I saw a really good improvement, less gas and more firmness. Also tried amitriptyline, cholisteramin, anti-histamines that didn't really help, mostly placebo for me. What did help was atomoxetine and clonidine. I also had quite a few GI recurrent infections (10-12 in 2 years), Which was presumed to be from my iga deficiency. So I I had a lot of antibiotics which pretty much improved my symptoms. All together I started having really firm and perfect six Bowel movements a day if I stuck to my diet. But I still couldn't let go of this because it felt like diarrhoea It's felt urgent. And I to went to an IBS doctor basically told me he has nothing to help me with and that it doesn't get why I'm coming to him because everything is good. Six times a day is not a problem. I'm just "high on the spectrum" normal is 0.5 to three but some people are on the edges. He also said that because I don't have any pain or bloating and it's more functional diarrhoea but it kind of profiled me because of my ADHD, said and he offered to raise amitriptyline to 40 mg which didn't help at all and made me really dry mouth. So I I knew at this point it wasn't IBS, since IBS tools didn't help me. So I just went to doctors I went to an immunologist due to my IGa deficiency and he found Giardia, and treating it help for a week but symptoms came back but it was still negative. And at this point I was seen as a hypochondriac. I had around 100 tests on my healthcare, they all told me that I'm a hypochondriac or that I seem functional to them. It doesn't seem like I'm suffering that much compared to how much I'm checking up myself, but to cover their asses they would send me to other tests most of them turned out great. But that reinforced the fact that I'm doing "unnecessary" testing. A lot of them really attacked me, and told me it's mental or it's because of all the supplements you're taking, because of Vyvanse etc.. And they will tell me that it's not even that bad that they don't even get why I'm going to them. The things is my tests were good because I took care of myself. I was anaemic so I did a ferinject and supplemented So it looked normal even though it was decreasing while supplementing. My vitamin d levels were good because I was supplementing 3,000 / day I didn't have osteoporosis anymore because I did a shot of Prolia and lift at the gym. Eventually I just went for a gastroenterologist in the healthcare not private and she seemed pretty bad to me. She was like I'll send you to a capsule because that's all you have left to do and I was like well. What if it turns out good too? Then she said well. Then there's nothing I can do to help you. Everything is great. Let's take imodium everyday. It's fine. *And they found mild Crohn's on that capsule.. my calprotectin never went back to being elevated after that first time 4 years ago and my CRP was always normal. Even in the ultrasound a year ago they saw nothing.* 4 years later after going through a lot of medical abuse.. but if there's one thing I learned Is when you know you know and instead of taking it personally and internalizing that you need to trust your gut and just go to another doctor. Lie a bit. But be sure there is an answer even if you have really have IBS you can treat it, and if there is no improvement then maybe it's really not IBS..