- Joined
- May 26, 2012
- Messages
- 21
Hello everyone,
This is the first time I have ever joined a Crohn's disease forum and feel that delaying in the process of seeking support may have been to my detrimint. I am 37 years old and live in Idaho. I am going to be brutally honest with everyone here because I feel that I need to pull my own covers in order to get any help with my illnesses. I was diagnosed with Crohn's disease in 1994-95. I was fresh out of High School and entering my second year of college (very young) maturity wise and was wondering why I was having diahrea so often. This was also the point in my life where I started to feel pain (in the form of a happy face) that always centered around my belt-line with the upsweeping portion of the 'smile' going up the sides of my belly along the sides of my diaphragm muscles. I was in school in California (where I grew up) and was ascending to the third floor of the fine arts building with two guitar cases when I fell to my knees in pain. I immediately knew that something was wrong and went home to complain to Mom and Dad about what had happened. This began the process of Dr. visits that would ultimately result in a diagnosis of Crohn's disease that reached the illyac portion which join small intestine and large intestine.
I went through the normal range of tests a person has to endure with a G.I. Dr. to get this diagnosis. Colonoscopies, Upper G.I. / small bowel follow-throughs, sygmoidoscopies, stool samples, the list goes on ad-infinitum. I have never had surgeries, at least as of yet.
Now I want to cast a large gray blanket over the next 16 years because during that time I never really took my illness seriously. I am just being honest about this but feel like a total fool.
I made complete 1/2 attempts. I would get sick, then seek the help of a Dr. when I was miserable, but never really took his advice to heart. Some days were better than others and I was a tough guy -indestructible in my own mind. College disappeared with my first diagnosis and during the next 16 years I would find myself becoming a plumber and pipefitter working in Union jobs doing heavy construction at various construction sites.
I would get my medications throw them in the medicine cabinet where they would sit for months at a time without me even swallowing one of them. I would take prednisone when it was bad (and hated it) which would make me feel horrible on job sites. I would swell, be reactive to sunlight, my lips would tingle, I would gain and lose weight. I was never hungry or would be the complete opposite (starving for a couple of days). I would have brief periods of consistancy with medications and noted so little improvement that I would balk at continuing.
Now I should say a little about my diet. I am a complete soda junkie and always have been. I know this is wrong and am in the process of completely removing Coke from my diet but it is proving to be very difficult. I quit smoking cigarettes but still smoke an E-cig (remember I spoke of those 1/2 measures). I basically have ate garbage-type foods most of my life. fast food was my staple being a construction worker. The flip-side to that coin are frozen meals usually a microwaveable meal from one of the fine companies making garbage trapped in cardboard easily nukable on a job-site. At any rate I never have like sand-whichs, favoring foods that are a little more spicy or that are warm instead of cold.
In 2006 my Father died and I moved from Westminster California to Rigby Idaho. I was already in deep emotional distress and my focus on my condition was now a 1/4 measure. I had lost my hero and went into a tail-spin that I only really now can see. I brought my entire family with me to Idaho to help be here for my Mother (Wife and 2 young daughters). I thought I could continue on with my trade and did so for a while but now I am in the flare-up drug from the depths of hell. I have to be honest about this it has lasted about 2 years with only glimpses of daylight.
How did I deal with this for the first year - pain medication. God I was wrong. I wish I could turn back the clock but thank God I was able to walk away from pain medication last November, 2011. I was taking way too much and wondered why the pain was even worse. I finally realised that constipation and being backed up was not a good thing but I told myself the lie of at least I am not going to the bathroom 25 times a day. Did I use standard treatments during this time- yes. I used Pentasa, Humira, Prednisone, Vitamin B-12, Vitamin A, Vitamin E, Vitamin C, Melatonin, and Xanax. I may be missing a few more. I felt so over-medicated all of the time and formed a serious hate of biologics. I could walk by one of my children, who happened to walk by a sick kid at school and catch whatever they may have had. I was getting fungus infections at the corner of my lips. some weird red inflamation under my arm pits that I still do not understand. My rosachea would get worse. A point came where I refused the medication. During the past 2 years I developed Eociniphillic esophagitis. I have been in the hospital from this due to food impactions 7 times in a year and a half.
I am not gluten intolerant? I have had an allergy test years ago covering a wide variety of food allergens and other allergens and came up only allergic to goose feathers so I am at a loss why this is now a problem.
No stability. In the past year I have worked at one construction job for 2 days. I started this job last Wednesday and worked 2 days until I got hit by this new mother of all flares. I ate salads which I am learning is a no-no but I thought I was doing the right thing by eating healthy. wrong again. Now i am faced with the realization that I may never be in construction again. I had already started school in the spring semester looking to enter the medical field. I am to become a nurse, though dietetics may be the smarter choice. I feel like since this illness is no longer something I can ignore I would better serve my fellow man by involving myself deeply in the very thing I have always ignored - Crohn's disease.
nutrition. the past couple months I have been trying to eat better. like I said with the salads even though I was wrong. I have come to the realization that redmeat is bad for me in more ways than one, especialy since my EE Emergency Room visits have always involved steak. I have to be honest I am scared to eat. I have lost 25 pounds this last 3 weeks. I went from 215 pounds down to 189'ish. I am limiting soda intake but headaches keep pulling me back. I am keeping a journal and being as honest as I can with my pain levels and what I eat. right now my pain level is a 5 and I am wincing, its not as bad as it was the day this started last thursday, but it is still nagging at me.
I can no longer avoid this issue. I am on the threshold of losing my mind at least thats the way I feel. I can't support my children right now, my Wife is making little more than minimum wage and I am so depressed. I am kissing a career good-bye I was so very proud of. I also know its for the best.
At this point I do not know what to say other than I need help from people that understand where i am coming from. Please feel free to offer any insights.
~Kerry~
This is the first time I have ever joined a Crohn's disease forum and feel that delaying in the process of seeking support may have been to my detrimint. I am 37 years old and live in Idaho. I am going to be brutally honest with everyone here because I feel that I need to pull my own covers in order to get any help with my illnesses. I was diagnosed with Crohn's disease in 1994-95. I was fresh out of High School and entering my second year of college (very young) maturity wise and was wondering why I was having diahrea so often. This was also the point in my life where I started to feel pain (in the form of a happy face) that always centered around my belt-line with the upsweeping portion of the 'smile' going up the sides of my belly along the sides of my diaphragm muscles. I was in school in California (where I grew up) and was ascending to the third floor of the fine arts building with two guitar cases when I fell to my knees in pain. I immediately knew that something was wrong and went home to complain to Mom and Dad about what had happened. This began the process of Dr. visits that would ultimately result in a diagnosis of Crohn's disease that reached the illyac portion which join small intestine and large intestine.
I went through the normal range of tests a person has to endure with a G.I. Dr. to get this diagnosis. Colonoscopies, Upper G.I. / small bowel follow-throughs, sygmoidoscopies, stool samples, the list goes on ad-infinitum. I have never had surgeries, at least as of yet.
Now I want to cast a large gray blanket over the next 16 years because during that time I never really took my illness seriously. I am just being honest about this but feel like a total fool.
I made complete 1/2 attempts. I would get sick, then seek the help of a Dr. when I was miserable, but never really took his advice to heart. Some days were better than others and I was a tough guy -indestructible in my own mind. College disappeared with my first diagnosis and during the next 16 years I would find myself becoming a plumber and pipefitter working in Union jobs doing heavy construction at various construction sites.
I would get my medications throw them in the medicine cabinet where they would sit for months at a time without me even swallowing one of them. I would take prednisone when it was bad (and hated it) which would make me feel horrible on job sites. I would swell, be reactive to sunlight, my lips would tingle, I would gain and lose weight. I was never hungry or would be the complete opposite (starving for a couple of days). I would have brief periods of consistancy with medications and noted so little improvement that I would balk at continuing.
Now I should say a little about my diet. I am a complete soda junkie and always have been. I know this is wrong and am in the process of completely removing Coke from my diet but it is proving to be very difficult. I quit smoking cigarettes but still smoke an E-cig (remember I spoke of those 1/2 measures). I basically have ate garbage-type foods most of my life. fast food was my staple being a construction worker. The flip-side to that coin are frozen meals usually a microwaveable meal from one of the fine companies making garbage trapped in cardboard easily nukable on a job-site. At any rate I never have like sand-whichs, favoring foods that are a little more spicy or that are warm instead of cold.
In 2006 my Father died and I moved from Westminster California to Rigby Idaho. I was already in deep emotional distress and my focus on my condition was now a 1/4 measure. I had lost my hero and went into a tail-spin that I only really now can see. I brought my entire family with me to Idaho to help be here for my Mother (Wife and 2 young daughters). I thought I could continue on with my trade and did so for a while but now I am in the flare-up drug from the depths of hell. I have to be honest about this it has lasted about 2 years with only glimpses of daylight.
How did I deal with this for the first year - pain medication. God I was wrong. I wish I could turn back the clock but thank God I was able to walk away from pain medication last November, 2011. I was taking way too much and wondered why the pain was even worse. I finally realised that constipation and being backed up was not a good thing but I told myself the lie of at least I am not going to the bathroom 25 times a day. Did I use standard treatments during this time- yes. I used Pentasa, Humira, Prednisone, Vitamin B-12, Vitamin A, Vitamin E, Vitamin C, Melatonin, and Xanax. I may be missing a few more. I felt so over-medicated all of the time and formed a serious hate of biologics. I could walk by one of my children, who happened to walk by a sick kid at school and catch whatever they may have had. I was getting fungus infections at the corner of my lips. some weird red inflamation under my arm pits that I still do not understand. My rosachea would get worse. A point came where I refused the medication. During the past 2 years I developed Eociniphillic esophagitis. I have been in the hospital from this due to food impactions 7 times in a year and a half.
I am not gluten intolerant? I have had an allergy test years ago covering a wide variety of food allergens and other allergens and came up only allergic to goose feathers so I am at a loss why this is now a problem.
No stability. In the past year I have worked at one construction job for 2 days. I started this job last Wednesday and worked 2 days until I got hit by this new mother of all flares. I ate salads which I am learning is a no-no but I thought I was doing the right thing by eating healthy. wrong again. Now i am faced with the realization that I may never be in construction again. I had already started school in the spring semester looking to enter the medical field. I am to become a nurse, though dietetics may be the smarter choice. I feel like since this illness is no longer something I can ignore I would better serve my fellow man by involving myself deeply in the very thing I have always ignored - Crohn's disease.
nutrition. the past couple months I have been trying to eat better. like I said with the salads even though I was wrong. I have come to the realization that redmeat is bad for me in more ways than one, especialy since my EE Emergency Room visits have always involved steak. I have to be honest I am scared to eat. I have lost 25 pounds this last 3 weeks. I went from 215 pounds down to 189'ish. I am limiting soda intake but headaches keep pulling me back. I am keeping a journal and being as honest as I can with my pain levels and what I eat. right now my pain level is a 5 and I am wincing, its not as bad as it was the day this started last thursday, but it is still nagging at me.
I can no longer avoid this issue. I am on the threshold of losing my mind at least thats the way I feel. I can't support my children right now, my Wife is making little more than minimum wage and I am so depressed. I am kissing a career good-bye I was so very proud of. I also know its for the best.
At this point I do not know what to say other than I need help from people that understand where i am coming from. Please feel free to offer any insights.
~Kerry~
