- Joined
- Apr 12, 2011
- Messages
- 25
Geez...where do I start? I suppose I should preface this by letting you know this is going to be a very long read. I hope some of you will read it in its entirety, and offer me any advice and information you may have. I'm really at my wits end with all this. Any and all feedback will be greatly appreciated.
I am a 28-year-old male who has been suffering from digestive problems(mainly chronic painful diarrhea)literally my entire life. I have no memory of it, but apparently I even defecated in the womb during labor. As a baby my diapers had to be constantly changed due to my chronic diarrhea. It was bad enough to warrant a trip to my pediatrician, who subsequently blew it off as nothing. This continued on through infancy. Remarkably, I am told I was easy to potty train. As I stated previously, being that I was so young, I have no memory of any of this. This information comes directly from my parents, who have no reason to lie about it. But even a good majority of my earliest memories include me having diarrhea, abdominal pain and/or just feeling generally ill.
I should also mention that my dad was in the military, so we had to move around a lot. This meant changing schools as well. I changed schools 7 times before high school. It's not easy being the new kid, and this stress did not help my problem. Thankfully, I attended all 4 years of high school at the same school. But that didn't make the problem any better either. Throughout my school years I was always having to ask for permission to go to the bathroom. And as I'm sure most of you know, it's not possible to just go real quick and be done. I need a minimum of 15 minutes, and that's on a good day. And when you're gone for that long the teacher and other students tend to notice. Then, most times, I have to go again soon after. The whole thing can get to be very embarrassing to a person of any age, let alone a child at school. It got to the point where I would just call one of my parents to come pick me up, or just stay home from school altogether. Needless to say I was never one of those kids who got an award for perfect attendance. I missed a lot of days and classes. Luckily I'm a fairly intelligent individual(not trying to float my own boat or anything) and school came fairly easy to me. I always made up all the work I missed, and did well on tests. My parents had to fight with school administrators and teachers over the years due to my absences, but my grades were good, so they(the administration) couldn't really complain. I am lucky to have very supportive parents.
The problem started getting bad around the time I was 11 years old, and got increasingly worse through junior high. I had seen doctors who, naturally, were perplexed. But instead of doing the proper tests, they just prescribed me medication that didn't work. One even gave me a prescription for zantac. Zantac is for heartburn, not diarrhea. *sigh* In 8th grade I even missed my chance to play for my junior high basketball team because of my diarrhea. Tryouts lasted 3 days. The first 2 days I did great, and had pretty much locked up my spot in the starting rotation. I have always loved basketball, but didn't have a natural talent for it. So I had been practicing hard for a long time, and was quite proud of the improvement I had made. I was finally good enough to play for an organized team! The third day of tryouts I ended up having to go home at lunchtime because of terrible abdominal cramps and diarrhea. I was determined to come back for tryouts after school, and I did. When I get there the coach tells me that I am not allowed to participate in the tryout because I left school before lunch was over...district policy. He said I could stay and watch, and that would count for something. But since he picked who makes the team based on a points system, I didn't get enough points to make the team. Had I merely participated, I would have made it. As a consolation I was offered the team manager position. I declined.
I was not referred to a specialist until high school. By this time I was going through immodium like it was going out of style. It only helped a little, but a little is better than nothing. The gastroenterologist(GI from here on out) did a sidmoidoscopy and an abdominal x-ray with barium enema contrast. He found nothing and diagnosed me with irritable bowel. I was directed to keep taking the immodium; nothing was prescribed. I miserably made it through high school and into college relying on immodium. In college I started to miss classes because of my diarrhea. I would show up to school, and try to attend as many classes as I could, but would end up spending most of the day in campus bathrooms. Somehow I managed to keep my gpa up for two years, though not as high as my high school gpa. Then, for reasons not related to my digestive problems, I decided to transfer to a different college.
When I first moved, that's when I had my first bout of bloody diarrhea. DARK red; almost black. It scared the living daylights out of me. I saw a doctor, who did no tests, but assumed it was IBS. I was told dark bloody diarrhea is normal in IBS(we all know that is NOT true). He gave me bentyl, which didn't work at all. Now, because my financial aid got screwed up, I ended up not being able to attend school right away. So, instead, I had to work. I was lucky enough to find a job that made it easy for me to use the bathroom any time I wanted, for as long as I wanted. I did so well at my job that I was eventually promoted. The subsequent position required me to work very long hours, 6 or 7 days a week. I did have a hidden private bathroom near my office that seemingly no one else knew about...heaven!!! Unfortunately, the long hours/weeks started to take a toll on my body as a whole, so I decided to go back to college.
I won't go into much detail on my return to college, but I will say it was an absolute failure. Like before, I would end up missing classes regularly being stuck on the toilet. I did see a doctor there too, who put me on another anti-spasmotic that also did not work. My grades then tumbled(engineering and physics classes are really hard even when you can go to class every day. I simply couldn't...even if I tried), and I decided it would be best to leave school and not waste $17,000/year on something my body would not allow me to do. I had to move back in with my parents, and spent the next year dealing with a severe kidney infection. It was my second severe kidney infection in 3 years. I still have kidney/urinary problems, including stones(ain't life grand?). After the infection cleared up I was able to get back out on my own.
The following couple of years were no less troublesome. Working became increasingly more difficult. I would have to leave for work hours early, and use a public restroom near my workplace to make sure I wouldn't have to run to the bathroom as soon as I clocked in, or even worse, be late. And, like many of you, I would always(and still do) have to bring a spare pair of underwear and wet wipes wherever I went...especially when at work. During this time the blood in my stool became much more frequent. After the economy plunged I was laid off, and could not find another job. I was forced to move back in with my parents once again.
This turned out to be a blessing in disguise because my digestive problems started to get significantly worse. And being that I had no health insurance(and still don't), I had to rely on my parents and charity from hospitals to pay for my doctors visits and such. At first I thought the severe increase in pain was due to a kidney stone. I did have a few moderately sized ones that took a couple months to pass. Once they finally passed, I expected the pain to return to where it was before. It didn't. My dad finally got fed up and took me to his doctor and made it perfectly clear that something had to be done. He saw my symptoms as a red flag for Crohn's(severe chronic diarrhea with and without blood, abdominal pain/cramping, sores in my mouth, rashes, weight loss, appetite loss, rectal bleeding/discomfort/pain, joint pain all over my body)...something that had never even been mentioned to me by any other doctor, including the GI specialist I had seen previously. To be honest, I really had no idea what Crohn's was or what the symptoms were. I had heard of it, but was given no indication that my symptoms were indicative of this disease. In the meantime I was put on another anti-spasmotic that didn't work. He tried to get me on Lotronex(sp?), but without insurance they wanted $1,200 for 60 pills. RIDICULOUS!!!!
I was referred to a GI who, for the first time, told me a full battery of tests were needed ASAP. He also put me on Lomotil(diphenoxalate w/ atropine). At first the Lomotil worked slightly, but nowhere near enough. I still take it, even though it doesn't work any better than immodium(they're quite similar, I've found out). I'm still constantly running to the bathroom, and I am sometimes awoken from what little sleep I get with diarrhea. The abdominal pain is constant and moderate to severe. As far as diagnostics are concerned, we started with a colonoscopy...nothing showed up. Then the upper endoscopy...same result. Then a small bowel follow-though with barium contrast...inconclusive. The only thing that did show up was high inflammation markers in my blood tests. But since no visible inflammation showed up in any previous tests, he didn't seem too concerned with this. I was also told that the blood in my stool was from my hemorrhoids. I know I have hemorrhoids that bleed frequently. But I also know the difference between a bleeding hemorrhoid and bloody diarrhea. The only remaining course of action was the miracle that is the capsule endoscopy. That's where I'm at know. I actually went in this morning and swallowed the little camera, and got hooked up to the transmitter. It is working its way through my system as I type this, taking pictures of my small bowel. So I guess all I can do now is wait for the results from that. I know this may sound weird, but I'm praying I have Crohn's. Just knowing what is wrong with me would give me so much peace of mind. And then, perhaps, I could get on a treatment that actually works. In turn, I would be able to get my life back.
I just want my life back. I have no social life, I can't work, I can't support myself, and have to prepare if I leave the house. I have to know where all the public restrooms are located wherever I'm at, as I will likely need to use them. My condition has alienated me from my friends, as they all have their own lives, spouses, children, etc. They don't have the time to work a sick friend into their schedules. Not that I feel well enough to be social anyway. I don't even like talking on the phone since I feel all I have to talk about are my health issues. And only people who suffer as we do can understand what it's like. They just can't empathize, but it's no one's fault. Aside from that, I'm seriously starting to worry about how much longer I can survive like this. I am almost 29 years old, nearly 6 feet tall and weigh less than 130 pounds. My normal, healthy weight is between 145-155. I lost most of that weight in a very short period of time. And I cannot put it back on due to the fact that I'm practically terrified to eat anything, and no longer have the energy to exercise like I used to. I've meticulously tracked my eating habits in order to try and find out what foods may be causing this. It doesn't really matter what I eat. There are certain foods that make it a lot worse, but pretty much everything goes right through me, and the pain never goes away. I was told adding fiber to my diet would help if I had IBS, but fiber makes it SO MUCH WORSE. Like most of us who suffer from digestive problems I also have severe anxiety, and have since I was about 11. I was finally put on xanax when I was 23, and that helps tremendously(my anxiety, not my diarrhea). But being that I'm uninsured, I don't have the ability to get my prescription filled/renewed on a regular basis.
Basically, my life is a living hell. I try to stay positive, and live day-by-day, but it's very difficult. I'm pushing 30 and I have no quality of life whatsoever. I'm tired of the doctors telling me it's IBS, all in my head, or that I don't deal with stress well. Those are cop-outs, excuses. The IBS meds simply don't work...period. It took me decades to actually get the proper tests done. When I had insurance the doctors showed no desire to thoroughly test me to find the root of the problem. Now I'm up to my eyeballs in medical debt, and cannot even make my student loan payments. I'm hoping this pill cam will give the answers I've been seeking. Until then, I just gotta keep on keepin' on. If nothing shows up, I guess I'm back to square one, and will try and seek another opinion from a different doctor.
Well, that's about it. Believe it or not, that's the abbreviated version of my problem(s). If I went into full detail it would be a novel. If you've actually read all this, I cannot tell you how much I appreciate it. I would love to have some input from others who have dealt with what I'm dealing with. Even input about my symptoms from those who were diagnosed relatively quickly would be greatly appreciated. I need support from people who understand, and know what it's like to feel this way. To this point, I feel like no one truly grasps the severity of my situation, and how horrible I feel on a daily basis.
:sign0085:
I am a 28-year-old male who has been suffering from digestive problems(mainly chronic painful diarrhea)literally my entire life. I have no memory of it, but apparently I even defecated in the womb during labor. As a baby my diapers had to be constantly changed due to my chronic diarrhea. It was bad enough to warrant a trip to my pediatrician, who subsequently blew it off as nothing. This continued on through infancy. Remarkably, I am told I was easy to potty train. As I stated previously, being that I was so young, I have no memory of any of this. This information comes directly from my parents, who have no reason to lie about it. But even a good majority of my earliest memories include me having diarrhea, abdominal pain and/or just feeling generally ill.
I should also mention that my dad was in the military, so we had to move around a lot. This meant changing schools as well. I changed schools 7 times before high school. It's not easy being the new kid, and this stress did not help my problem. Thankfully, I attended all 4 years of high school at the same school. But that didn't make the problem any better either. Throughout my school years I was always having to ask for permission to go to the bathroom. And as I'm sure most of you know, it's not possible to just go real quick and be done. I need a minimum of 15 minutes, and that's on a good day. And when you're gone for that long the teacher and other students tend to notice. Then, most times, I have to go again soon after. The whole thing can get to be very embarrassing to a person of any age, let alone a child at school. It got to the point where I would just call one of my parents to come pick me up, or just stay home from school altogether. Needless to say I was never one of those kids who got an award for perfect attendance. I missed a lot of days and classes. Luckily I'm a fairly intelligent individual(not trying to float my own boat or anything) and school came fairly easy to me. I always made up all the work I missed, and did well on tests. My parents had to fight with school administrators and teachers over the years due to my absences, but my grades were good, so they(the administration) couldn't really complain. I am lucky to have very supportive parents.
The problem started getting bad around the time I was 11 years old, and got increasingly worse through junior high. I had seen doctors who, naturally, were perplexed. But instead of doing the proper tests, they just prescribed me medication that didn't work. One even gave me a prescription for zantac. Zantac is for heartburn, not diarrhea. *sigh* In 8th grade I even missed my chance to play for my junior high basketball team because of my diarrhea. Tryouts lasted 3 days. The first 2 days I did great, and had pretty much locked up my spot in the starting rotation. I have always loved basketball, but didn't have a natural talent for it. So I had been practicing hard for a long time, and was quite proud of the improvement I had made. I was finally good enough to play for an organized team! The third day of tryouts I ended up having to go home at lunchtime because of terrible abdominal cramps and diarrhea. I was determined to come back for tryouts after school, and I did. When I get there the coach tells me that I am not allowed to participate in the tryout because I left school before lunch was over...district policy. He said I could stay and watch, and that would count for something. But since he picked who makes the team based on a points system, I didn't get enough points to make the team. Had I merely participated, I would have made it. As a consolation I was offered the team manager position. I declined.
I was not referred to a specialist until high school. By this time I was going through immodium like it was going out of style. It only helped a little, but a little is better than nothing. The gastroenterologist(GI from here on out) did a sidmoidoscopy and an abdominal x-ray with barium enema contrast. He found nothing and diagnosed me with irritable bowel. I was directed to keep taking the immodium; nothing was prescribed. I miserably made it through high school and into college relying on immodium. In college I started to miss classes because of my diarrhea. I would show up to school, and try to attend as many classes as I could, but would end up spending most of the day in campus bathrooms. Somehow I managed to keep my gpa up for two years, though not as high as my high school gpa. Then, for reasons not related to my digestive problems, I decided to transfer to a different college.
When I first moved, that's when I had my first bout of bloody diarrhea. DARK red; almost black. It scared the living daylights out of me. I saw a doctor, who did no tests, but assumed it was IBS. I was told dark bloody diarrhea is normal in IBS(we all know that is NOT true). He gave me bentyl, which didn't work at all. Now, because my financial aid got screwed up, I ended up not being able to attend school right away. So, instead, I had to work. I was lucky enough to find a job that made it easy for me to use the bathroom any time I wanted, for as long as I wanted. I did so well at my job that I was eventually promoted. The subsequent position required me to work very long hours, 6 or 7 days a week. I did have a hidden private bathroom near my office that seemingly no one else knew about...heaven!!! Unfortunately, the long hours/weeks started to take a toll on my body as a whole, so I decided to go back to college.
I won't go into much detail on my return to college, but I will say it was an absolute failure. Like before, I would end up missing classes regularly being stuck on the toilet. I did see a doctor there too, who put me on another anti-spasmotic that also did not work. My grades then tumbled(engineering and physics classes are really hard even when you can go to class every day. I simply couldn't...even if I tried), and I decided it would be best to leave school and not waste $17,000/year on something my body would not allow me to do. I had to move back in with my parents, and spent the next year dealing with a severe kidney infection. It was my second severe kidney infection in 3 years. I still have kidney/urinary problems, including stones(ain't life grand?). After the infection cleared up I was able to get back out on my own.
The following couple of years were no less troublesome. Working became increasingly more difficult. I would have to leave for work hours early, and use a public restroom near my workplace to make sure I wouldn't have to run to the bathroom as soon as I clocked in, or even worse, be late. And, like many of you, I would always(and still do) have to bring a spare pair of underwear and wet wipes wherever I went...especially when at work. During this time the blood in my stool became much more frequent. After the economy plunged I was laid off, and could not find another job. I was forced to move back in with my parents once again.
This turned out to be a blessing in disguise because my digestive problems started to get significantly worse. And being that I had no health insurance(and still don't), I had to rely on my parents and charity from hospitals to pay for my doctors visits and such. At first I thought the severe increase in pain was due to a kidney stone. I did have a few moderately sized ones that took a couple months to pass. Once they finally passed, I expected the pain to return to where it was before. It didn't. My dad finally got fed up and took me to his doctor and made it perfectly clear that something had to be done. He saw my symptoms as a red flag for Crohn's(severe chronic diarrhea with and without blood, abdominal pain/cramping, sores in my mouth, rashes, weight loss, appetite loss, rectal bleeding/discomfort/pain, joint pain all over my body)...something that had never even been mentioned to me by any other doctor, including the GI specialist I had seen previously. To be honest, I really had no idea what Crohn's was or what the symptoms were. I had heard of it, but was given no indication that my symptoms were indicative of this disease. In the meantime I was put on another anti-spasmotic that didn't work. He tried to get me on Lotronex(sp?), but without insurance they wanted $1,200 for 60 pills. RIDICULOUS!!!!
I was referred to a GI who, for the first time, told me a full battery of tests were needed ASAP. He also put me on Lomotil(diphenoxalate w/ atropine). At first the Lomotil worked slightly, but nowhere near enough. I still take it, even though it doesn't work any better than immodium(they're quite similar, I've found out). I'm still constantly running to the bathroom, and I am sometimes awoken from what little sleep I get with diarrhea. The abdominal pain is constant and moderate to severe. As far as diagnostics are concerned, we started with a colonoscopy...nothing showed up. Then the upper endoscopy...same result. Then a small bowel follow-though with barium contrast...inconclusive. The only thing that did show up was high inflammation markers in my blood tests. But since no visible inflammation showed up in any previous tests, he didn't seem too concerned with this. I was also told that the blood in my stool was from my hemorrhoids. I know I have hemorrhoids that bleed frequently. But I also know the difference between a bleeding hemorrhoid and bloody diarrhea. The only remaining course of action was the miracle that is the capsule endoscopy. That's where I'm at know. I actually went in this morning and swallowed the little camera, and got hooked up to the transmitter. It is working its way through my system as I type this, taking pictures of my small bowel. So I guess all I can do now is wait for the results from that. I know this may sound weird, but I'm praying I have Crohn's. Just knowing what is wrong with me would give me so much peace of mind. And then, perhaps, I could get on a treatment that actually works. In turn, I would be able to get my life back.
I just want my life back. I have no social life, I can't work, I can't support myself, and have to prepare if I leave the house. I have to know where all the public restrooms are located wherever I'm at, as I will likely need to use them. My condition has alienated me from my friends, as they all have their own lives, spouses, children, etc. They don't have the time to work a sick friend into their schedules. Not that I feel well enough to be social anyway. I don't even like talking on the phone since I feel all I have to talk about are my health issues. And only people who suffer as we do can understand what it's like. They just can't empathize, but it's no one's fault. Aside from that, I'm seriously starting to worry about how much longer I can survive like this. I am almost 29 years old, nearly 6 feet tall and weigh less than 130 pounds. My normal, healthy weight is between 145-155. I lost most of that weight in a very short period of time. And I cannot put it back on due to the fact that I'm practically terrified to eat anything, and no longer have the energy to exercise like I used to. I've meticulously tracked my eating habits in order to try and find out what foods may be causing this. It doesn't really matter what I eat. There are certain foods that make it a lot worse, but pretty much everything goes right through me, and the pain never goes away. I was told adding fiber to my diet would help if I had IBS, but fiber makes it SO MUCH WORSE. Like most of us who suffer from digestive problems I also have severe anxiety, and have since I was about 11. I was finally put on xanax when I was 23, and that helps tremendously(my anxiety, not my diarrhea). But being that I'm uninsured, I don't have the ability to get my prescription filled/renewed on a regular basis.
Basically, my life is a living hell. I try to stay positive, and live day-by-day, but it's very difficult. I'm pushing 30 and I have no quality of life whatsoever. I'm tired of the doctors telling me it's IBS, all in my head, or that I don't deal with stress well. Those are cop-outs, excuses. The IBS meds simply don't work...period. It took me decades to actually get the proper tests done. When I had insurance the doctors showed no desire to thoroughly test me to find the root of the problem. Now I'm up to my eyeballs in medical debt, and cannot even make my student loan payments. I'm hoping this pill cam will give the answers I've been seeking. Until then, I just gotta keep on keepin' on. If nothing shows up, I guess I'm back to square one, and will try and seek another opinion from a different doctor.
Well, that's about it. Believe it or not, that's the abbreviated version of my problem(s). If I went into full detail it would be a novel. If you've actually read all this, I cannot tell you how much I appreciate it. I would love to have some input from others who have dealt with what I'm dealing with. Even input about my symptoms from those who were diagnosed relatively quickly would be greatly appreciated. I need support from people who understand, and know what it's like to feel this way. To this point, I feel like no one truly grasps the severity of my situation, and how horrible I feel on a daily basis.
:sign0085:
And I am on an uncompensated care plan with one of my local hospitals. It covers any procedures or diagnostics I need to have. I didn't pay one red cent for the colonoscopy, blood tests, upper scope or small bowel follow through. I did, however, have to pay a $450 deposit for my pill cam, and still have a $400 balance just on that. Anything done in my gastro's office, I have to pay out of pocket...even though his office is at the hospital. I also still have to pay for office visits. I am currently working on getting discounts for these, but it'll only be 20%. But 20% is better than nothing. I'm still working on getting all my previous bills absolved. I'd be more than happy to pay if I could(no amount of money is worth my life), but I simply can't. I want nothing more than to be able to go back to work, get insurance, and have a normal(as possible) life. 
