Alright, I have no idea whether I actually have crohn's or not; to be honest I haven't been dealing with this nearly as long as it seems a lot of people here have. It started out with extreme fatigue that lead into stomach pain that lead into chest pain that lead into more stomach pain that lead into diarrhea etc. etc. etc.
What I'm going through now is
Feeling feverish most of the time, but it seems to come in waves.
stomach pressure/pain with nausea sometimes and uncomfortable swallowing sometimes as well
Muscles and joint pains that come and go
Fatigue
Getting red rashes on the back of my hands
Persistent diarrhea
The effect of my already known food sensitivities has been like tripled
There's more, but I'm not going to go into it all.
Anyway, when I went to my doctor the first thing he said was that it sounds like it could be Crohn's. They did a blood and stool sample both of which came back negative on everything they tested for. He sent me to a GI to do a colonoscopy/upper endoscopy which I was on board for, but when I talked to the GI I was having a "good" day where my symptoms were semi tame and she told me she did not get the "Crohn's feel from me" and kept saying that she had a "gut instinct" that I didn't have CD. To be honest it felt like she was looking at me like I wasn't sick at all, and I could get how she could get that impression because after a long time of being sick I've gotten a little too good at hiding it. She also got the wrong impression off of a few things that I said I was going through, but whatever. She put me on omeprazole for a month and told me to get a fiber supplement, so I did, and my symptoms did improve, but they did not in the slightest feel like they were getting better. I called back a couple times, went in again, and she pretty much just said, "I think you have IBS and idk what's going on with your other symptoms" and sent me out the door.
So fast forward to now, I talked to my doctor again a week ago and he's still convinced that my symptoms are stemming from my stomach, but is treating it less urgently than before. I got some low dose amitriptylin and I've been feeling even more stuffed up since I started taking it. So I'm going in again in a few days and hopefully not get the "well dude let's try some pills and see what happens" game again.
To be honest I'm getting through the day to day semi okay and wouldn't mind the long process it takes to get a diagnosis if it weren't for my parents. I'm 22 and I live with my parents still because I've been sick since I got out of High School, it was because of something less debilitating, though. My parents don't trust or believe in doctors. Moreso my mom than my dad. My dad keeps telling me "you're making this out to be worse than it is" and "if I didn't hear you laughing in your room all the time maybe I'd actually believe you're sick." My mom keeps telling me I'm wasting time with doctors, and that I can't possibly be sick enough to not work, and that probiotics are what's going to get me healthy again. Both of them are hanging the debt this is causing them over my head, which is just adding to my stress. On top of that my father keeps telling me I have until the end of the year to get this figured out because that's when the insurance resets. So not only am I not getting support, I'm also being given a time limit, which is driving me crazy with how these doctors are giving me the run around. The end of the year is right around the corner, what am I supposed to do after that? I really would like to be able to get a job and take care of the expenses myself, but I just can't. Unless it was a job where I didn't have to talk to anyone, stress was minimal, I was able to work from home(I don't even have the strength to drive 10 miles to the nearest city), and doesn't require much focus I probably would get fired in a week. I've explained to them why I can't millions of times but it feels like they forget every time a new medical bill shows up, which, I mean it's understandable. I can understand the frustration of having to support a kid(well, adult now) who just seems to have neverending problems and how stressful managing all the new debt can be, but the fact that it feels like they just don't even care just drives me crazy. My dad told me, "well if they don't find anything you're just going to have to live with it." This sentence blew my mind, because just the fact that he is able to say that says that means he has absolutely no idea what I'm going through. When he gets stomachaches after eating a heavy meal he tells me about it like it's something comparable to the disturbed sensations I go through on a daily basis. He also tells me, "what are you going to do if your mom and I get in a car crash and die?" What am I supposed to say to that? Who actually says that to their sick son? It just feels like he's in complete denial that anything is actually wrong with me no matter what I say. It was like this before I found out I had food allergies, too. He kept telling me how sick I was was because of my, "poor sleeping habits" and because I play videogames all day, when in reality I did those things because I was sick all the time.
It just terrifies me that I might not have any options at the end of the year. That I might have to go through a year of no progress while my mom will probably take me to chiropractors, holistic medical practitioners, and anything else her friends tell her about; all the while yelling at me to get a job every couple of weeks. I don't have suicidal thoughts right now, but if this continues to get worse and I'm left in this purgatory of, "too sick to live, too healthy to die" I have absolutely no idea what I might do to myself. I'm aware this sounds dramatic; I'm fresh off of an argument so I'm a little emotional. It's already hard enough to just be going through this everyday and now all I can think about is money and all I feel is guilt. Really I just, I just don't know what to do anymore. I probably shouldn't have posted this. I probably just sound like I'm complaining, but it feels really good to get it all out somewhere.
What I'm going through now is
Feeling feverish most of the time, but it seems to come in waves.
stomach pressure/pain with nausea sometimes and uncomfortable swallowing sometimes as well
Muscles and joint pains that come and go
Fatigue
Getting red rashes on the back of my hands
Persistent diarrhea
The effect of my already known food sensitivities has been like tripled
There's more, but I'm not going to go into it all.
Anyway, when I went to my doctor the first thing he said was that it sounds like it could be Crohn's. They did a blood and stool sample both of which came back negative on everything they tested for. He sent me to a GI to do a colonoscopy/upper endoscopy which I was on board for, but when I talked to the GI I was having a "good" day where my symptoms were semi tame and she told me she did not get the "Crohn's feel from me" and kept saying that she had a "gut instinct" that I didn't have CD. To be honest it felt like she was looking at me like I wasn't sick at all, and I could get how she could get that impression because after a long time of being sick I've gotten a little too good at hiding it. She also got the wrong impression off of a few things that I said I was going through, but whatever. She put me on omeprazole for a month and told me to get a fiber supplement, so I did, and my symptoms did improve, but they did not in the slightest feel like they were getting better. I called back a couple times, went in again, and she pretty much just said, "I think you have IBS and idk what's going on with your other symptoms" and sent me out the door.
So fast forward to now, I talked to my doctor again a week ago and he's still convinced that my symptoms are stemming from my stomach, but is treating it less urgently than before. I got some low dose amitriptylin and I've been feeling even more stuffed up since I started taking it. So I'm going in again in a few days and hopefully not get the "well dude let's try some pills and see what happens" game again.
To be honest I'm getting through the day to day semi okay and wouldn't mind the long process it takes to get a diagnosis if it weren't for my parents. I'm 22 and I live with my parents still because I've been sick since I got out of High School, it was because of something less debilitating, though. My parents don't trust or believe in doctors. Moreso my mom than my dad. My dad keeps telling me "you're making this out to be worse than it is" and "if I didn't hear you laughing in your room all the time maybe I'd actually believe you're sick." My mom keeps telling me I'm wasting time with doctors, and that I can't possibly be sick enough to not work, and that probiotics are what's going to get me healthy again. Both of them are hanging the debt this is causing them over my head, which is just adding to my stress. On top of that my father keeps telling me I have until the end of the year to get this figured out because that's when the insurance resets. So not only am I not getting support, I'm also being given a time limit, which is driving me crazy with how these doctors are giving me the run around. The end of the year is right around the corner, what am I supposed to do after that? I really would like to be able to get a job and take care of the expenses myself, but I just can't. Unless it was a job where I didn't have to talk to anyone, stress was minimal, I was able to work from home(I don't even have the strength to drive 10 miles to the nearest city), and doesn't require much focus I probably would get fired in a week. I've explained to them why I can't millions of times but it feels like they forget every time a new medical bill shows up, which, I mean it's understandable. I can understand the frustration of having to support a kid(well, adult now) who just seems to have neverending problems and how stressful managing all the new debt can be, but the fact that it feels like they just don't even care just drives me crazy. My dad told me, "well if they don't find anything you're just going to have to live with it." This sentence blew my mind, because just the fact that he is able to say that says that means he has absolutely no idea what I'm going through. When he gets stomachaches after eating a heavy meal he tells me about it like it's something comparable to the disturbed sensations I go through on a daily basis. He also tells me, "what are you going to do if your mom and I get in a car crash and die?" What am I supposed to say to that? Who actually says that to their sick son? It just feels like he's in complete denial that anything is actually wrong with me no matter what I say. It was like this before I found out I had food allergies, too. He kept telling me how sick I was was because of my, "poor sleeping habits" and because I play videogames all day, when in reality I did those things because I was sick all the time.
It just terrifies me that I might not have any options at the end of the year. That I might have to go through a year of no progress while my mom will probably take me to chiropractors, holistic medical practitioners, and anything else her friends tell her about; all the while yelling at me to get a job every couple of weeks. I don't have suicidal thoughts right now, but if this continues to get worse and I'm left in this purgatory of, "too sick to live, too healthy to die" I have absolutely no idea what I might do to myself. I'm aware this sounds dramatic; I'm fresh off of an argument so I'm a little emotional. It's already hard enough to just be going through this everyday and now all I can think about is money and all I feel is guilt. Really I just, I just don't know what to do anymore. I probably shouldn't have posted this. I probably just sound like I'm complaining, but it feels really good to get it all out somewhere.
