Oh am I ever angry, confused, frustrated, scared, in need of advice, and depressed. Otherwise, it's a good day! HELP ME PLEASE! Anyone.
I have Crohn's and UC as of 2/15. No surgeries, thank God. But plenty else. Fissure from hell, GI refused to make referral for me to Duke University to find the cause of the pain, so my primary care physician did. Colorectal surgeon took one look and said "BINGO." For now it's healed.
Diarrhea got so bad I had to go on short term disability. Was written up with final warning at work that if I was 6 minutes tardy or if I had to leave early I was fired. I'm having to leave out so much crap (no pun intended) but just fill in as you can imagine. Upon my FIRST visit with GI, diarrhea was so bad he put my on Apriso, Humira, and Prednisone right away. My colonoscopy was beautiful, or so I thought...nice and vascular. Wrong! Completely ulcerated. Not one normal section.
GI ordered Prometheus study for presence of Humira antibodies and to check therapeutic levels. No antibodies...whew! But not where I should be so shot EVERY week. In the meantime...
My GI gets sick, has to have his leg amputated, and I feel terrible for him and am given over to another doctor who is "helping out." Great!? This doctor knows I have a lawyer and am filing for social security disability. They even filled out a lot of paperwork for it, in favor of my not being able to work.
I begin to notice I'm feeling like the bastard child at the family reunion. This doctor doesn't call me whenever I've asked for a callback. Oh well. Am I a thorn in his side? I have that intuition and it's usually right. Now time will tell. My old doctor is back as of last week.
While he was gone we were busy. I had two surgeries at Duke. I'll mention that shortly as it relates to Humira. And for this one I NEED HELP. I had a colonoscopy three weeks ago. It came back showing "no active disease." I'm relieved. WHAT DOES THIS MEAN?????? DO I NOT HAVE CROHN'S? I'M STILL HAVING DIARRHEA. CRAMPS, FATIGUE. YOU KNOW THE STORY. Somebody point me in the right direction, please. On the sheet before surgery it said, ASA rating: Moderate systemic disease.
My GI doc's nurse called Friday and said he had written me a letter regarding the disability. It has to do with the fact that the colonoscopy was OK and that I'm being treated for dysplasia at Duke University Hospital by a colorectal oncology surgeon. This surgeon is the one that diagnosed the fissure. He removed anal lesions in January and said come back in six months. The pathology came back low grade squamous intraepithelial dysplasia AIN 1. In June, more surgery. Remember, in the meantime I was asked to increase the Humira to every week. Pathology not good. The next stage is cancer. In fact, the lesion went all the way to the margin. It was graded high grade squamous intraepithelial dysplasia AIN-3. I was told by the surgeon that I would have to come back every three months for the rest of my life to be checked. Oh well. You do what you have to.
BUT WHAT AM I SUPPOSED TO DO ABOUT TAKING THE HUMIRA WHICH HAS LOWERED MY ABILITY TO FIGHT OFF SOMETHING MOST PEOPLE CAN FIGHT OFF???? The surgeon didn't advise. So I asked the GI dude who did the colonoscopy...you know, the one "helping out." As I'm leaving after recovery from the procedure, he handed me a piece of paper and said to cut it to every other week. That's it.
OK. I did that. Now, my OLD GI apparently wants me to cut it out altogether. That makes sense to me. But what do you think is going to happen??? Just when the right dosage of Humira is reached and the diarrhea is not as much, I stop the treatment.
Now the final blow...what if he doesn't support my not working? I'm screwed royally. I can't go back where I was because they are only hiring part time. I'll be terminated, lose all health benefits, and will need to find some type of job if I am able to do it, which I do not see how on earth I can. The stress alone was killing me. I've been a different person since not working.
I've whined enough, way more than I wanted to. If anyone feels like offering some words of wisdom, I truly would be grateful. I'm using levity to keep my sanity. I have no income now. I'm frightened, confused...I truly am wondering why I'm going on. Thanks for listening.
I have Crohn's and UC as of 2/15. No surgeries, thank God. But plenty else. Fissure from hell, GI refused to make referral for me to Duke University to find the cause of the pain, so my primary care physician did. Colorectal surgeon took one look and said "BINGO." For now it's healed.
Diarrhea got so bad I had to go on short term disability. Was written up with final warning at work that if I was 6 minutes tardy or if I had to leave early I was fired. I'm having to leave out so much crap (no pun intended) but just fill in as you can imagine. Upon my FIRST visit with GI, diarrhea was so bad he put my on Apriso, Humira, and Prednisone right away. My colonoscopy was beautiful, or so I thought...nice and vascular. Wrong! Completely ulcerated. Not one normal section.
GI ordered Prometheus study for presence of Humira antibodies and to check therapeutic levels. No antibodies...whew! But not where I should be so shot EVERY week. In the meantime...
My GI gets sick, has to have his leg amputated, and I feel terrible for him and am given over to another doctor who is "helping out." Great!? This doctor knows I have a lawyer and am filing for social security disability. They even filled out a lot of paperwork for it, in favor of my not being able to work.
I begin to notice I'm feeling like the bastard child at the family reunion. This doctor doesn't call me whenever I've asked for a callback. Oh well. Am I a thorn in his side? I have that intuition and it's usually right. Now time will tell. My old doctor is back as of last week.
While he was gone we were busy. I had two surgeries at Duke. I'll mention that shortly as it relates to Humira. And for this one I NEED HELP. I had a colonoscopy three weeks ago. It came back showing "no active disease." I'm relieved. WHAT DOES THIS MEAN?????? DO I NOT HAVE CROHN'S? I'M STILL HAVING DIARRHEA. CRAMPS, FATIGUE. YOU KNOW THE STORY. Somebody point me in the right direction, please. On the sheet before surgery it said, ASA rating: Moderate systemic disease.
My GI doc's nurse called Friday and said he had written me a letter regarding the disability. It has to do with the fact that the colonoscopy was OK and that I'm being treated for dysplasia at Duke University Hospital by a colorectal oncology surgeon. This surgeon is the one that diagnosed the fissure. He removed anal lesions in January and said come back in six months. The pathology came back low grade squamous intraepithelial dysplasia AIN 1. In June, more surgery. Remember, in the meantime I was asked to increase the Humira to every week. Pathology not good. The next stage is cancer. In fact, the lesion went all the way to the margin. It was graded high grade squamous intraepithelial dysplasia AIN-3. I was told by the surgeon that I would have to come back every three months for the rest of my life to be checked. Oh well. You do what you have to.
BUT WHAT AM I SUPPOSED TO DO ABOUT TAKING THE HUMIRA WHICH HAS LOWERED MY ABILITY TO FIGHT OFF SOMETHING MOST PEOPLE CAN FIGHT OFF???? The surgeon didn't advise. So I asked the GI dude who did the colonoscopy...you know, the one "helping out." As I'm leaving after recovery from the procedure, he handed me a piece of paper and said to cut it to every other week. That's it.
OK. I did that. Now, my OLD GI apparently wants me to cut it out altogether. That makes sense to me. But what do you think is going to happen??? Just when the right dosage of Humira is reached and the diarrhea is not as much, I stop the treatment.
Now the final blow...what if he doesn't support my not working? I'm screwed royally. I can't go back where I was because they are only hiring part time. I'll be terminated, lose all health benefits, and will need to find some type of job if I am able to do it, which I do not see how on earth I can. The stress alone was killing me. I've been a different person since not working.
I've whined enough, way more than I wanted to. If anyone feels like offering some words of wisdom, I truly would be grateful. I'm using levity to keep my sanity. I have no income now. I'm frightened, confused...I truly am wondering why I'm going on. Thanks for listening.
