Hi Everyone,
I'm a 34 year old male, I live in Brazil (though I'm not originally from here) and since the beginning of February, I have been struggling what the doctor now assumes is UC (or Crohn's).
My journey getting here has been a long one. It likely started in November last year when I was sick with stomach pain and a change in bowel movements, but was assumed to be diverticulitis, which I was diagnosed with years ago. My condition stabilized over Christmas, and then got worse, and rapidly so in February. It became painful to eat anything, because digestion would hurt, and bowel movements would feel like glass moving through my intestines. Then the mucus, gelatin, and grease started, and I knew this wasn't diverticulitis.
I went to the hospital, and it was there I was misdiagnosed with an infection, and prescribed antibiotics and antiparasites for a month. During this time, I got worse, and the lose, bloody aquarium fish-food like diarrhea started. I had a referral for a CT scan and colonoscopy, as I exceed the height and weight limit for the machines/procedure at the hospital, and both were canceled in April after 2 months of waiting because the public health care system where I live refuses to treat anyone in excess of 150kg/330lbs.
I've lost 30kg/66lbs since February, and now have 12-14 lose bowel movements per day. They're primarily mucus/grease/shredded cabbage looking, and occasionally have blood in them. I can't leave the house as I'm afraid of shitting myself given how rapid the need to go occurs, and how often I have to use the bathroom. As of yesterday, my colonoscopy is estimated to occur in 2029 (yes, literally), and the gastroenterologist won't see me until I have said results, which means I continue taking 40mg of prednisone a day and 3 800mg mesalazine pills which aren't really doing anything.
The Kafkaesque part: I've tried to save up some money to see a private clinic to do the colonoscopy, but most where I live also have the 150kg/330lbs limit, so now I can't even get a colonoscopy if I pay for it, and I'm stuck taking a medication I can't afford that's doing nothing while I continue to shit blood and mucus 12-14 times a day.
I have no idea what to do anymore, I have no energy, I'm losing about 2.3kg/5lbs a week as I can't eat, it's ruining my marriage because I'm house bound and have no energy to spend time together or do anything my spouse wants to, I literally don't eat anything anymore because it hurts too much, and the doctors won't take me seriously and keep saying if it gets worse, go to the emergency room, and when I do, they tell me the same thing: you have to wait for the colonoscopy, there's no CT scan for you, your blood work shows you have a lot of inflammation.
Has anyone else gone through something similar? How'd you make it through? I'm incredibly depressed and feel invisible...
Thanks for reading...