Hello all, I hope this posts finds you well - or feeling better!
I was diagnosed with Crohn's October 25th, 1995. Funny, I was actually relieved! "You mean I'm NOT crazy?" It all started when I was about 20 yrs old. For some unknown reason, my favorite steakhouse suddenly made me very ill. So, my doc said to simply avoid steak - "it's not that good for you anyway". So I did. But, after a short while, the list grew to include soups, salads, sandwiches - pretty much everything and anything I ate. Then came the bouts of pain. My first trip to the ER! I was told I had appendicitis and that my appendix had to be removed ASAP. It was the surgeon who, upon examination (1 minute) decided I had an infection in my intestines. Infection in my intestines? How did I get that? Too much steak? I was prescribed antibiotics. No follow-up. A few months later, I was "visiting" restrooms more frequently, had more pain, lost more weight and had a fever all the time. My primary doc, who was also an allergist - thought that I could only have a food allergy. So I kept a food diary for 3 months. He didn't see a pattern therefore - it had to be psychological.
Psychological? I can make myself sick? Well, why can't I make myself better? This was extremely hard for me to swallow - I had already been through so much. (elementary school wasn't that easy and an abusive high school boyfriend - on top of the dysfunctional family - you get the picture)
I went out and bought self help books on depression, I went to a therapist, got rid of my current boyfriend, got a new job, and moved out of my parents house.
So, I went back to my doc 6 months after the food diary; still complaining about the same symptoms. Guess what my doc said? "No wonder you're not feeling well - look at all the major changes in your life - you don't handle stress very well" **sigh**
A few months later, after another trip to the emergency room - I finally saw a gastroenterologist! I went through the usual tests and was diagnosed with CD. My first questions: "Can you please spell that?" "What disease?" "Why can't it just be an acronym or something - Disease? Really?"
I have tried almost every drug under the sun. At one point - I was taking 45 pills a day. I could not drive, work, sleep - I ended up with all the 'pleasant' side-effects. And I learned that I have an addictive personality. I had endless suppllies of narcotics, benzos, I consider 60mgs of Presdnisone an upper, you name it my doc prescibed it. But, realize that at 20yrs I did everything my doc said - i took every pill - hoping for remission. I got better, went back to work - flare-up, lost job, meds, back to another new job. I gave up on the 5th try.
I then began to self-medicate. A little this for naseaua - a little that for pain - too tired? a little this will help! That lasted for about 6-7 years. One arrest and several rehabs later - i'm back at square one. I cannot take pain meds (unless hospitilized - or for a procedure) - or any mood altering drug. And I don't need them. I have simply accepted the fact that I cannot and will not feel great all the time. Don't get me wrong - it has been a long, hard road.
I'll spare you all the "in-betweens" numerous hospital stays, er visits, tests, etc. My most recent endeavor - Cimzia - 7 months of injecting myself 2x a month (these injections hurt because the med is so thick - tip: really squeeze your skin - you won't feel the needle or the cold thick med!)
I have an appointment on the 25th of this month - to discuss my next med. I'm thinking of surgery. I'm really, really tired of all these meds! Since my CD dx - I have also been diagnosed with hyperthyroidism, hep c, a heart murmer, hyperlipidemia, ovarian cysts - and some other stuff - like my prednisone thinned out skin with shiny blue veins.
I work about a mile from my home - and don't always make it to or home from work. It's really hard to smile when your pants are, well full! and the smell! thank god for febreze! I'm also experiencing new symptoms - I think these pop up in time - like the excruitiating hemorrhoids. I had this issue before - but now it's soooo painful. The foams, creams gels help a little (until my next trip to the bathroom.) I find an ice pack works!
In short, this pretty much sums up my experience. Up and down. I do my best to stay positive. But I get the "F-its" once in awhile. Some of my friends say, "You still have that?" I gave up trying to educate everyone. And everyone in my office thinks Zumba classes will help you drop 3 dress sizes in no time at all! Have to be creative!
Well everyone, thank you for listening. I'm sure I left a lot out. It's not always easy and it's not always that hard. What works for me today, won't tomorrow but might a few months from now... strange, I know.
Nite all!
I was diagnosed with Crohn's October 25th, 1995. Funny, I was actually relieved! "You mean I'm NOT crazy?" It all started when I was about 20 yrs old. For some unknown reason, my favorite steakhouse suddenly made me very ill. So, my doc said to simply avoid steak - "it's not that good for you anyway". So I did. But, after a short while, the list grew to include soups, salads, sandwiches - pretty much everything and anything I ate. Then came the bouts of pain. My first trip to the ER! I was told I had appendicitis and that my appendix had to be removed ASAP. It was the surgeon who, upon examination (1 minute) decided I had an infection in my intestines. Infection in my intestines? How did I get that? Too much steak? I was prescribed antibiotics. No follow-up. A few months later, I was "visiting" restrooms more frequently, had more pain, lost more weight and had a fever all the time. My primary doc, who was also an allergist - thought that I could only have a food allergy. So I kept a food diary for 3 months. He didn't see a pattern therefore - it had to be psychological.
Psychological? I can make myself sick? Well, why can't I make myself better? This was extremely hard for me to swallow - I had already been through so much. (elementary school wasn't that easy and an abusive high school boyfriend - on top of the dysfunctional family - you get the picture)
I went out and bought self help books on depression, I went to a therapist, got rid of my current boyfriend, got a new job, and moved out of my parents house.
So, I went back to my doc 6 months after the food diary; still complaining about the same symptoms. Guess what my doc said? "No wonder you're not feeling well - look at all the major changes in your life - you don't handle stress very well" **sigh**
A few months later, after another trip to the emergency room - I finally saw a gastroenterologist! I went through the usual tests and was diagnosed with CD. My first questions: "Can you please spell that?" "What disease?" "Why can't it just be an acronym or something - Disease? Really?"
I have tried almost every drug under the sun. At one point - I was taking 45 pills a day. I could not drive, work, sleep - I ended up with all the 'pleasant' side-effects. And I learned that I have an addictive personality. I had endless suppllies of narcotics, benzos, I consider 60mgs of Presdnisone an upper, you name it my doc prescibed it. But, realize that at 20yrs I did everything my doc said - i took every pill - hoping for remission. I got better, went back to work - flare-up, lost job, meds, back to another new job. I gave up on the 5th try.
I then began to self-medicate. A little this for naseaua - a little that for pain - too tired? a little this will help! That lasted for about 6-7 years. One arrest and several rehabs later - i'm back at square one. I cannot take pain meds (unless hospitilized - or for a procedure) - or any mood altering drug. And I don't need them. I have simply accepted the fact that I cannot and will not feel great all the time. Don't get me wrong - it has been a long, hard road.
I'll spare you all the "in-betweens" numerous hospital stays, er visits, tests, etc. My most recent endeavor - Cimzia - 7 months of injecting myself 2x a month (these injections hurt because the med is so thick - tip: really squeeze your skin - you won't feel the needle or the cold thick med!)
I have an appointment on the 25th of this month - to discuss my next med. I'm thinking of surgery. I'm really, really tired of all these meds! Since my CD dx - I have also been diagnosed with hyperthyroidism, hep c, a heart murmer, hyperlipidemia, ovarian cysts - and some other stuff - like my prednisone thinned out skin with shiny blue veins.
I work about a mile from my home - and don't always make it to or home from work. It's really hard to smile when your pants are, well full! and the smell! thank god for febreze! I'm also experiencing new symptoms - I think these pop up in time - like the excruitiating hemorrhoids. I had this issue before - but now it's soooo painful. The foams, creams gels help a little (until my next trip to the bathroom.) I find an ice pack works!
In short, this pretty much sums up my experience. Up and down. I do my best to stay positive. But I get the "F-its" once in awhile. Some of my friends say, "You still have that?" I gave up trying to educate everyone. And everyone in my office thinks Zumba classes will help you drop 3 dress sizes in no time at all! Have to be creative!
Well everyone, thank you for listening. I'm sure I left a lot out. It's not always easy and it's not always that hard. What works for me today, won't tomorrow but might a few months from now... strange, I know.
Nite all!
