I have had Crohn's Disease since childhood. However, my parents were told that there was nothing wrong with me and I was trying to get attention due to the birth of my baby brother. After this they said I was lactose intolerant, and then they said I just had a 'nervous stomach'. By my teen years I was missing school, and experiencing serious symptoms. By this time I had learned to just deal with it, use lots of Pepto Bismol, not eat at all when things were really bad, and get on with life. There were times when things weren't that bad and I would use them for all I was worth by working, going to school, being active and even getting married. In my early twenties things became really bad. I was down to 86 pounds (I am 5'3") and even though I told the doctors that I was trying to eat, that I was experiencing horrific bathroom moments, etc. they told me that I was anorexic and depressed. I agreed with the depressed part because, well...who wouldn't be? I definitely was not trying to lose weight, though. I wanted them to fix what ever it was so I could get on with things like keeping a job, going to college, starting a family. Normal stuff. Eventually I got things under control and had two daughters, a good career and many of the other things I had dreamed of. There were still prolonged bouts of 'nervous stomach' but I dealt with it by taking fluoxetine and lots of phenergan for the almost constant nausea and using Immodium much more than it was ever intended to be used. In 2001 everything crashed. I was experiencing neurological symptoms, was constantly seriously anemic, my right leg and arm were not working correctly, ( I found out later that this was due to inflammation in my brain an uncommon but not unheard of Crohn's related problem) I couldn't eat anything, the pain was unbelievable, I was practically living in the bathroom and had developed a deep seated hatred of saltines and toast. I was spending most of my time in bed or on the couch.
We had just moved and I went to a new doctor who took one look at me and for the very first time someone ordered GI tests. (Yes, that's right. The FIRST time. Even though I had been complaining about my stomach for years I had a 'history' of being mental so they never looked any further) I had a colonoscopy and endoscopy and lots and lots of bloodwork and they diagnosed Crohn's Disease.
Part of me was relieved to finally find out that it wasn't all in my head but mostly I was angry and upset that I had this horrible disease that was never going to go away and was currently not only eating out my insides but also destroying my life.
I spent a decade trying to make the Crohn's go away, trying to get my old life back and basically just hitting my head against the wall.
Recently I've decided to try something new. To accept that fact that Crohn's is here to stay (although there is always the hope of remission). I am also trying to build a life again, one that I can sustain from home. Not so easy to do, sometimes I think the isolation is the worst part of the disease for me.
I want to feel useful again, to try and accomplish something.
Currently they are playing about with my meds. I am on Pentassa but it isn't really working, other meds they have tried have either ramped up the nausea levels so much I couldn't eat at all or they have had serious side effects.
The only thing I do really well on is prednisone but that isn't a long term acceptable medication.
I have a port in my chest so they can administer iron ( I was on one bag once a week). I have been doing well with that and holding my own so they were going to pull out the port but then they discovered Hurthle cells on my thyroid and they want to leave the port in until after surgery just in case we need to do further treatment.
I am trying hard to be upbeat, to maintain a sense of humor and to accept Crohn's as part of my life and learn to live with it. Sort of like a mangy old stray brother-in-law that just won't stay away.
We had just moved and I went to a new doctor who took one look at me and for the very first time someone ordered GI tests. (Yes, that's right. The FIRST time. Even though I had been complaining about my stomach for years I had a 'history' of being mental so they never looked any further) I had a colonoscopy and endoscopy and lots and lots of bloodwork and they diagnosed Crohn's Disease.
Part of me was relieved to finally find out that it wasn't all in my head but mostly I was angry and upset that I had this horrible disease that was never going to go away and was currently not only eating out my insides but also destroying my life.
I spent a decade trying to make the Crohn's go away, trying to get my old life back and basically just hitting my head against the wall.
Recently I've decided to try something new. To accept that fact that Crohn's is here to stay (although there is always the hope of remission). I am also trying to build a life again, one that I can sustain from home. Not so easy to do, sometimes I think the isolation is the worst part of the disease for me.
I want to feel useful again, to try and accomplish something.
Currently they are playing about with my meds. I am on Pentassa but it isn't really working, other meds they have tried have either ramped up the nausea levels so much I couldn't eat at all or they have had serious side effects.
The only thing I do really well on is prednisone but that isn't a long term acceptable medication.
I have a port in my chest so they can administer iron ( I was on one bag once a week). I have been doing well with that and holding my own so they were going to pull out the port but then they discovered Hurthle cells on my thyroid and they want to leave the port in until after surgery just in case we need to do further treatment.
I am trying hard to be upbeat, to maintain a sense of humor and to accept Crohn's as part of my life and learn to live with it. Sort of like a mangy old stray brother-in-law that just won't stay away.
