- Location
- Minneapolis, MN
Hi,
My name is James and I'm a Crohnsaholic. :ytongue:
All kidding aside, I was diagnosed with Crohn's Disease 7 years ago at the age of 21.
The road to my diagnosis was a strange one. A few months before my diagnosis, I started noticing some strange pain in my lower back. Over the coming weeks this pain spread to my knees and ankles as well. I quickly realized that the pain my knees and ankles was joint pain, as the pain would become excruciating whenever getting out of bed, going up or down stairs, getting into or out of my car, etc.... The pain got so bad that the thought of actually going to bed nearly brought me to tears, as I knew the pain that awaited me.
The pain also caused me to walk like an elderly person (No offense to you "normal" walking elderly people out there!). All I needed was a cane to complete the look.
I started going to my doctor at that point to see what the deal was. She was completely baffled at my condition, as X-Rays failed to provide her with any answers.
It was at this point that I really started to worry. I started having semi-nutty thoughts like, "What if I have some yet-undiscovered life threatening illness that's killing me slowly?!"
Then, after three or four visits to my physician in the span of a month, she seemed at the end of her rope. So, she called in another physician to take a quick look at me and get a second opinion.
After he looked over my legs, seemingly out of nowhere he said, "We may want to try a colonoscopy." I failed to see where he saw a connection between my joint pain and an issue with my colon/intestines but I went along with it, as I was getting desperate to put a name to my ailment.
So, I was able to get in a couple weeks later and the colonoscopy revealed that I indeed had Crohn's Disease. After explaining to me what Crohn's actually was, the first question I asked the physician who performed my colonoscopy was if my joint pain was somehow linked to my Crohn's. He seemed fairly confidant that it was and said that if I start getting on the proper meds, those issues should subside.
At that point, I was referred to a GI clinic where I have been going ever since that time. My new doctor put me on Prednisone for the joint issue and that stuff worked like a charm. After that my joint pain never returned, even after I was tapered off of it within the month.
I've been through a laundry list of medications for my Crohn's, many of which I can't even remember. They've had mediocre impacts at best. Imuran was one that I was on for a while as it stopped my bleeding issues but everything else pretty much remained the same. Then, my kidneys started to hurt about six months into taking it, so I got off of that. The kidney pain subsided soon thereafter, so I knew the Imuran was the culprit.
Last May, my doctor put me on Humira. I've been giving myself the standard one-shot-every-two-weeks treatment ever since but it's not really working so hot.
So, I went back in to my GI clinic a couple weeks ago and continued to let them know that the Humira was having perhaps a 30% impact on my Crohn's and I felt that it should probably be working better than it was.
Meaning that I was still dealing with occasional bleeding, the fun time stomach pains that I'm sure that you guys can relate to, and, well, loose stool at least 95% of the time.
Anyway, my doctor suggested that I go in for another colonoscopy, since they'd given me plenty of meds over the past 7 years and none of them had been exactly a smash hit. The difference is that this time, my actual GI doctor who I see in the clinic would be the person performing the colonoscopy. That gave me some hope that I may be put on the right track, medication-wise.
After the colonoscopy (which my doctor so heavily sedated me that I literally remember perhaps a 10 second span of the actual colonoscopy before waking up in recovery), my doctor suggested that besides the Humira, also putting me on Mercaptopurine. Lastly, she put me back on Prednisone for this month while the Mercaptopurine builds up in my system and starts to hopefully have an impact.
So, now I play the waiting game and hope that this new regimen will get me to where I need to be. I certainly hope so as there are days where I start to feel kinda hopeless about all of this and wonder if I'll ever find a medication that will actually calm my symptoms effectively.
Anyway, that's my story, for what it's worth. Thanks for taking the time to read this. :smile:
My name is James and I'm a Crohnsaholic. :ytongue:
All kidding aside, I was diagnosed with Crohn's Disease 7 years ago at the age of 21.
The road to my diagnosis was a strange one. A few months before my diagnosis, I started noticing some strange pain in my lower back. Over the coming weeks this pain spread to my knees and ankles as well. I quickly realized that the pain my knees and ankles was joint pain, as the pain would become excruciating whenever getting out of bed, going up or down stairs, getting into or out of my car, etc.... The pain got so bad that the thought of actually going to bed nearly brought me to tears, as I knew the pain that awaited me.
The pain also caused me to walk like an elderly person (No offense to you "normal" walking elderly people out there!). All I needed was a cane to complete the look.
I started going to my doctor at that point to see what the deal was. She was completely baffled at my condition, as X-Rays failed to provide her with any answers.
It was at this point that I really started to worry. I started having semi-nutty thoughts like, "What if I have some yet-undiscovered life threatening illness that's killing me slowly?!"
Then, after three or four visits to my physician in the span of a month, she seemed at the end of her rope. So, she called in another physician to take a quick look at me and get a second opinion.
After he looked over my legs, seemingly out of nowhere he said, "We may want to try a colonoscopy." I failed to see where he saw a connection between my joint pain and an issue with my colon/intestines but I went along with it, as I was getting desperate to put a name to my ailment.
So, I was able to get in a couple weeks later and the colonoscopy revealed that I indeed had Crohn's Disease. After explaining to me what Crohn's actually was, the first question I asked the physician who performed my colonoscopy was if my joint pain was somehow linked to my Crohn's. He seemed fairly confidant that it was and said that if I start getting on the proper meds, those issues should subside.
At that point, I was referred to a GI clinic where I have been going ever since that time. My new doctor put me on Prednisone for the joint issue and that stuff worked like a charm. After that my joint pain never returned, even after I was tapered off of it within the month.
I've been through a laundry list of medications for my Crohn's, many of which I can't even remember. They've had mediocre impacts at best. Imuran was one that I was on for a while as it stopped my bleeding issues but everything else pretty much remained the same. Then, my kidneys started to hurt about six months into taking it, so I got off of that. The kidney pain subsided soon thereafter, so I knew the Imuran was the culprit.
Last May, my doctor put me on Humira. I've been giving myself the standard one-shot-every-two-weeks treatment ever since but it's not really working so hot.
So, I went back in to my GI clinic a couple weeks ago and continued to let them know that the Humira was having perhaps a 30% impact on my Crohn's and I felt that it should probably be working better than it was.
Meaning that I was still dealing with occasional bleeding, the fun time stomach pains that I'm sure that you guys can relate to, and, well, loose stool at least 95% of the time.
Anyway, my doctor suggested that I go in for another colonoscopy, since they'd given me plenty of meds over the past 7 years and none of them had been exactly a smash hit. The difference is that this time, my actual GI doctor who I see in the clinic would be the person performing the colonoscopy. That gave me some hope that I may be put on the right track, medication-wise.
After the colonoscopy (which my doctor so heavily sedated me that I literally remember perhaps a 10 second span of the actual colonoscopy before waking up in recovery), my doctor suggested that besides the Humira, also putting me on Mercaptopurine. Lastly, she put me back on Prednisone for this month while the Mercaptopurine builds up in my system and starts to hopefully have an impact.
So, now I play the waiting game and hope that this new regimen will get me to where I need to be. I certainly hope so as there are days where I start to feel kinda hopeless about all of this and wonder if I'll ever find a medication that will actually calm my symptoms effectively.
Anyway, that's my story, for what it's worth. Thanks for taking the time to read this. :smile:
