- Joined
- Mar 10, 2011
- Messages
- 16
Hi there i'm here to share my story and at the same time find any help possible.
I will say right off the bat that i don't have crohns but in certain ways i think i relate to those sufferers since my problem is gastro related.
I know many people here are struggling as am I. I have a serious digestive disorder which i believe to be one of a few in the world. I am in the category of misdiagnosed rare diseases. I have a case of serious malabsorption. My body doesn't seem to absorb nearly all the food out there. I know at first this sounds puzzling. What i mean by this is that when i consume food it doesn't fuel me at all, I tell doctors it feels as though i just drank a glass of water. From an exhausting adventure of experimenting i found the foods that work. What i can absorb seems to be gluten free pasta, rice vermicelli noodles and yukon gold potatoes..around that is where i consume my essentialy vitamins and minerals and what not.
I have made many postings lately that i'm really tired but i found this place in hopes someone might know something. If i eat 'regular' food i lose weight, have bm issues, rashes on my upper body become more noticable. My symptoms are really serious i don't know if its worth it posting them in case nobody reads this.
What i will say is the word extreme can be used to describe most of my symptoms..to hunger, mental sharpness, anal burning and moisture, disorientation and fatigue. ie: when i say i have fatigue i mean i don't drive anymore, i pass out into naps often--i'm usually in zombie mode.
My anal region is always wet as if its constantly spritzed with water. The more 'aggressive' food i eat the wetter it gets and it burns more. I have a involuntary gas issue which i rarely tell my doctors about because i'm sick of being belittled with comments like "everybody has gas"..yea they do but not everybody has involuntary gas in fact i haven't read anywhere of anyone having that problem..and i don't mean flatulence.
From personal experience i'm beginning to develop a heavy loathing towards doctors and based on what i read on the internet i'm not alone. My issues with them are long. In a nutshell i'm finding they aren't as educated about certain things as people think. They have a terrible system of basing the patient on what tests results say instead of listening to the patients symptoms. My issues are grave and most of my visits are rushed. I beg for important tests that either are disregarded because a.the doctor doesn't have a clue what the test is or b. he simply doesn't think i need to be tested. IE: malabsorption---i asked for the 72 hour fat test which i did twice and both times results were poor..my research told me the d-xylose test is vital for malab. detection....they refuse to do it.
I find the internet more helpful than any doctor i've visited.
I guess i should provide a little more background about my condition and if nobody reads this at least i'll get some typing practise out of it. I'm a 26 year old male. About 6 years ago when i was working i began to notice strange smells around me which i thought little of at the time. It turns out at that tiem my digestive system began to weaken and after a while i learned that strange smell was gas passing analy. If i had a shrimp sandwich the smell would be related to that. I couldn't believe what i was dealing with. I shortly after quit. Shortly after then still my social life is on hiatus but its because of various additional symptoms.
I have a pathetic memory level. ie: i'm talking to someone "yesterday i went to the store called uhhhhhh, then saw a movie called uhhhhh, then went to the restaurant called ummmm, then i bumped into uhhhhh on the street"..i don't mean to sound goofy thats how my conversations are their is no fluidity i don't remember the little things.
Also I become so hungry sometimes i wobble around nearly disoriented which my parents have witnessed. (i described this disorientation to a recent GI in which he made a face as if there was something wrong with me)..My diet is very unrealistic if i was living a normal life. Imagine eating a sandwich or anyting else and slowly becoming more tired and feeling hungrier?@ thats me unless of coarse i eat the foods i mentioned i can (its a very complex and bizarre condition i know) i'm skinny (probably from a whole life of being active) with some muscle definition all around and yet since i became sick i've had a gut which i can't get rid of-->poor digestion. 3 years ago i stopped lifting weights it was going no where-> some form of protein malabsorption.
When i visit the doctor i usually look good compared to the days i'm at home when i don't have appointments. I tell the doctor every time not to be fooled by my looks because i prepare for visits by stuffing myself with my gluten free pastas in advance. btw i'm 6 feet 190 lbs with a big stomach so really i would estimate without the fat from poor digestion on my body i would be approximately 160-170lbs..but it is steadily dropping and i have to work harder to maintain the weight i have.
My opinion is i have malabsorption but thanks to the internet, i'm aware now that most doctors know little to nothing on the topic, including GI's. My visits are always rushed..i'm often referred to the next guy and i wait a month for a 5 mintue appointment consisting of: the doc scratching his head, "no's" when i ask for vital tests the internet says i should do..or simply he doesn't know how to help me. I am baffled at how something this powerful remains undiagnosed. My personal feelings are that it can be but most health care professionals don't care or don't know much. The flaw of the system is it teaches doctors to always refer to test results as the #1 guide, and this is affecting me badly. I will tell him, "certain foods cause terrible heart palpotations, chest tightness, I have obstruction in my throat and the food just isn't digesting anymore as it used to"..they will look at me then glance at one of my lab tests and be like "right, but your test showed you're fine so what you're describing doesn't really exist"..i can't take it anymore.
Tests i've had done: endoscopies,sigmoidoscopies, barium enemus, celiac disease, thyroid, 72 hour fat, chloride sweat test...my symptoms a few years back were not nearly as prominent as they are now. I've discovered certain things after i asked for personal copies of test results that the doctor never even mentioned to me ie: inflammation, colitic.
Until now i never really had any major abnormalities shown in test results. Over the last year there are certain small ones showing more frequently but the doctors seem to brush them off as no big thing. I notice al ot of what the doctors say contradicts eachother ie: my albumin (i believe) level one GI said is a general indicator of good health..while another said thats not necessarily true.
One doctor found i have terribly low vit D and vit b12..i know for a fact that is a symptom of malabsorpiton.
Its a crisis no doubt for me.I can't even join a support group because this is so rare there is nobody i can relate to. This isn't crohns but it is in the same family and i'm looking for any help i can find. I might not find any here thats fine i'm not expecting it really. I hope everything i wrote makes sense and if anyones interested in adding their input i would enjoy it very much. Thanks very much
I will say right off the bat that i don't have crohns but in certain ways i think i relate to those sufferers since my problem is gastro related.
I know many people here are struggling as am I. I have a serious digestive disorder which i believe to be one of a few in the world. I am in the category of misdiagnosed rare diseases. I have a case of serious malabsorption. My body doesn't seem to absorb nearly all the food out there. I know at first this sounds puzzling. What i mean by this is that when i consume food it doesn't fuel me at all, I tell doctors it feels as though i just drank a glass of water. From an exhausting adventure of experimenting i found the foods that work. What i can absorb seems to be gluten free pasta, rice vermicelli noodles and yukon gold potatoes..around that is where i consume my essentialy vitamins and minerals and what not.
I have made many postings lately that i'm really tired but i found this place in hopes someone might know something. If i eat 'regular' food i lose weight, have bm issues, rashes on my upper body become more noticable. My symptoms are really serious i don't know if its worth it posting them in case nobody reads this.
What i will say is the word extreme can be used to describe most of my symptoms..to hunger, mental sharpness, anal burning and moisture, disorientation and fatigue. ie: when i say i have fatigue i mean i don't drive anymore, i pass out into naps often--i'm usually in zombie mode.
My anal region is always wet as if its constantly spritzed with water. The more 'aggressive' food i eat the wetter it gets and it burns more. I have a involuntary gas issue which i rarely tell my doctors about because i'm sick of being belittled with comments like "everybody has gas"..yea they do but not everybody has involuntary gas in fact i haven't read anywhere of anyone having that problem..and i don't mean flatulence.
From personal experience i'm beginning to develop a heavy loathing towards doctors and based on what i read on the internet i'm not alone. My issues with them are long. In a nutshell i'm finding they aren't as educated about certain things as people think. They have a terrible system of basing the patient on what tests results say instead of listening to the patients symptoms. My issues are grave and most of my visits are rushed. I beg for important tests that either are disregarded because a.the doctor doesn't have a clue what the test is or b. he simply doesn't think i need to be tested. IE: malabsorption---i asked for the 72 hour fat test which i did twice and both times results were poor..my research told me the d-xylose test is vital for malab. detection....they refuse to do it.
I find the internet more helpful than any doctor i've visited.
I guess i should provide a little more background about my condition and if nobody reads this at least i'll get some typing practise out of it. I'm a 26 year old male. About 6 years ago when i was working i began to notice strange smells around me which i thought little of at the time. It turns out at that tiem my digestive system began to weaken and after a while i learned that strange smell was gas passing analy. If i had a shrimp sandwich the smell would be related to that. I couldn't believe what i was dealing with. I shortly after quit. Shortly after then still my social life is on hiatus but its because of various additional symptoms.
I have a pathetic memory level. ie: i'm talking to someone "yesterday i went to the store called uhhhhhh, then saw a movie called uhhhhh, then went to the restaurant called ummmm, then i bumped into uhhhhh on the street"..i don't mean to sound goofy thats how my conversations are their is no fluidity i don't remember the little things.
Also I become so hungry sometimes i wobble around nearly disoriented which my parents have witnessed. (i described this disorientation to a recent GI in which he made a face as if there was something wrong with me)..My diet is very unrealistic if i was living a normal life. Imagine eating a sandwich or anyting else and slowly becoming more tired and feeling hungrier?@ thats me unless of coarse i eat the foods i mentioned i can (its a very complex and bizarre condition i know) i'm skinny (probably from a whole life of being active) with some muscle definition all around and yet since i became sick i've had a gut which i can't get rid of-->poor digestion. 3 years ago i stopped lifting weights it was going no where-> some form of protein malabsorption.
When i visit the doctor i usually look good compared to the days i'm at home when i don't have appointments. I tell the doctor every time not to be fooled by my looks because i prepare for visits by stuffing myself with my gluten free pastas in advance. btw i'm 6 feet 190 lbs with a big stomach so really i would estimate without the fat from poor digestion on my body i would be approximately 160-170lbs..but it is steadily dropping and i have to work harder to maintain the weight i have.
My opinion is i have malabsorption but thanks to the internet, i'm aware now that most doctors know little to nothing on the topic, including GI's. My visits are always rushed..i'm often referred to the next guy and i wait a month for a 5 mintue appointment consisting of: the doc scratching his head, "no's" when i ask for vital tests the internet says i should do..or simply he doesn't know how to help me. I am baffled at how something this powerful remains undiagnosed. My personal feelings are that it can be but most health care professionals don't care or don't know much. The flaw of the system is it teaches doctors to always refer to test results as the #1 guide, and this is affecting me badly. I will tell him, "certain foods cause terrible heart palpotations, chest tightness, I have obstruction in my throat and the food just isn't digesting anymore as it used to"..they will look at me then glance at one of my lab tests and be like "right, but your test showed you're fine so what you're describing doesn't really exist"..i can't take it anymore.
Tests i've had done: endoscopies,sigmoidoscopies, barium enemus, celiac disease, thyroid, 72 hour fat, chloride sweat test...my symptoms a few years back were not nearly as prominent as they are now. I've discovered certain things after i asked for personal copies of test results that the doctor never even mentioned to me ie: inflammation, colitic.
Until now i never really had any major abnormalities shown in test results. Over the last year there are certain small ones showing more frequently but the doctors seem to brush them off as no big thing. I notice al ot of what the doctors say contradicts eachother ie: my albumin (i believe) level one GI said is a general indicator of good health..while another said thats not necessarily true.
One doctor found i have terribly low vit D and vit b12..i know for a fact that is a symptom of malabsorpiton.
Its a crisis no doubt for me.I can't even join a support group because this is so rare there is nobody i can relate to. This isn't crohns but it is in the same family and i'm looking for any help i can find. I might not find any here thats fine i'm not expecting it really. I hope everything i wrote makes sense and if anyones interested in adding their input i would enjoy it very much. Thanks very much
