- Joined
- May 23, 2011
- Messages
- 9
Hi,
I'm a new member. This is my story.
I was diagnosed with CD in 2005. My dad and sister already had the diagnosis, so pretty much knew what it was when the symptoms started in 2004. Still, I lived with it for over a year, basically being in denial and rationalizing until I ended up in the emergency room with a severe flare up and a fistula. We tried Colazal, and then Asacol. I just got sicker and sicker.
I finally agreed to take Prednisone, although I really didn't want to. Some sort of mistake was made, and somehow I was given 200mg of Prednisone instead of the recommended 20-40mg. I could at least get out of bed, and I could eat. Unfortunately, I was also very emotional and still going to the bathroom over a dozen times per day. I went in for a follow up appointment, and the doctor said "Oh yeah- you're the girl with a twin sister who has Crohn's, right?"- his standard greeting. (You would think he might glance at my chart before walking in the room...) I told him no- my Dad and younger sister had Crohn's. "Right", he says, "and how much Prednisone are you on now?". (Shouldn't he already know the answer to this question?!?) I told him, and he said "Hmm, that seems a little high", but didn't change the dose. Of course I had no idea that was an inappropriate dose until weeks later when I went for a second opinion.
What a difference a different doctor can make! He talked to me for over an hour, and actually listened to the responses and asked questions! We tapered off the Prednisone, and increased the Asacol. I continued to get sicker, adding rashes, eye inflammation, and inflammatory arthritis to my list of ailments. We added Imuran. It didn't help. I had to go back on the Prednisone. I continued to get worse. I developed two fistulas. I now had a gastroenterologist, dermatologist, colorectal surgeon and rheumatologist so worried they were calling each other and consulting over the phone.
Finally, I had surgery for the fistulas, and began Remicade. Remicade is a "high risk" drug, and is very expensive. It is not the answer for everyone, but it works great for me. I had a "Remicade rash" for the first year, but that is mostly gone now. I have not needed steroids or surgery since beginning Remicade. I was able to stop the Asacol and Imuran. I sometimes need medication for arthritis pain near infusion time, but I rarely have tummy issues anymore.
My sister is in remission without medication at this time. (Yay!) My dad, who also gets fistulas and the added bonus of Ankylosing Spondylosis, ended up on Humira. He has also done well- although he got a rash at first, too.
I am 38 years old. I am a speech-language pathologist. I own my own business, and provide my own benefits. At this point I pay over $1400 a month for health insurance for my husband and me. It used to be $300, but they increase the premiums several times a year. They swear it is not due to any of my claims, but I think they are lying. Unfortunately, there is nothing I can do about it because I would be bankrupt without them to help me pay all the medical bills. Luckily, Remistart helps me pay for the Remicade.
I think that if there are any lessons I learned from my experiences, they are:
1. If something seems wrong, get help before it is an emergency. Don't just live with it- they might actually be able to help!
2. Find a doctor who specializes in the problem you are having (a family doctor is not going to be as informed as your gastroenterologist).
3. Mention all symptoms- even if they seem unrelated.
4. Get a second opinion, even if you trust the first one (a doctor with nothing to hide will not be offended by this- I asked).
5. Educate yourself about the medications you are on- including risks, side effects, and appropriate dosage.
6. Educate yourself about your diagnosis. (Make sure to use sites that are not trying to sell you anything.)
7. Ask your doctors to consult with each other (bring the contact information to your visit).
8. If you are on an expensive medication, find out if the drug company has a program to help you pay for it.
9. Remicade and other tnf-blockers are not appropriate for everyone. However, my gastroenterologist told me last year Crohn's Disease is now treated differently than Ulcerative Colitis.
*UC is still treated with a "bottom up" approach- they are supposed to try Asacol, Imuran, etc. first- then go to tnf-blockers if that doesn't work.
*CD is supposed to be treated with a "top-down" approach- they are supposed to go straight to tnf-blockers.
*In the original studies CD and UC were lumped together because of a small sample size. Newer studies looked at the diseases separately, and UC responded differently to medication than CD. If your gastro doctor does not know this information, he/she is not keeping up with the latest studies.
10. Individual health insurance is very, very expensive for people with chronic diseases. (I could by a vacation home for the amount that I pay for it.)
Thank you for your interest in my story. I look forward to being a part of this forum!
I'm a new member. This is my story.
I was diagnosed with CD in 2005. My dad and sister already had the diagnosis, so pretty much knew what it was when the symptoms started in 2004. Still, I lived with it for over a year, basically being in denial and rationalizing until I ended up in the emergency room with a severe flare up and a fistula. We tried Colazal, and then Asacol. I just got sicker and sicker.
I finally agreed to take Prednisone, although I really didn't want to. Some sort of mistake was made, and somehow I was given 200mg of Prednisone instead of the recommended 20-40mg. I could at least get out of bed, and I could eat. Unfortunately, I was also very emotional and still going to the bathroom over a dozen times per day. I went in for a follow up appointment, and the doctor said "Oh yeah- you're the girl with a twin sister who has Crohn's, right?"- his standard greeting. (You would think he might glance at my chart before walking in the room...) I told him no- my Dad and younger sister had Crohn's. "Right", he says, "and how much Prednisone are you on now?". (Shouldn't he already know the answer to this question?!?) I told him, and he said "Hmm, that seems a little high", but didn't change the dose. Of course I had no idea that was an inappropriate dose until weeks later when I went for a second opinion.
What a difference a different doctor can make! He talked to me for over an hour, and actually listened to the responses and asked questions! We tapered off the Prednisone, and increased the Asacol. I continued to get sicker, adding rashes, eye inflammation, and inflammatory arthritis to my list of ailments. We added Imuran. It didn't help. I had to go back on the Prednisone. I continued to get worse. I developed two fistulas. I now had a gastroenterologist, dermatologist, colorectal surgeon and rheumatologist so worried they were calling each other and consulting over the phone.
Finally, I had surgery for the fistulas, and began Remicade. Remicade is a "high risk" drug, and is very expensive. It is not the answer for everyone, but it works great for me. I had a "Remicade rash" for the first year, but that is mostly gone now. I have not needed steroids or surgery since beginning Remicade. I was able to stop the Asacol and Imuran. I sometimes need medication for arthritis pain near infusion time, but I rarely have tummy issues anymore.
My sister is in remission without medication at this time. (Yay!) My dad, who also gets fistulas and the added bonus of Ankylosing Spondylosis, ended up on Humira. He has also done well- although he got a rash at first, too.
I am 38 years old. I am a speech-language pathologist. I own my own business, and provide my own benefits. At this point I pay over $1400 a month for health insurance for my husband and me. It used to be $300, but they increase the premiums several times a year. They swear it is not due to any of my claims, but I think they are lying. Unfortunately, there is nothing I can do about it because I would be bankrupt without them to help me pay all the medical bills. Luckily, Remistart helps me pay for the Remicade.
I think that if there are any lessons I learned from my experiences, they are:
1. If something seems wrong, get help before it is an emergency. Don't just live with it- they might actually be able to help!
2. Find a doctor who specializes in the problem you are having (a family doctor is not going to be as informed as your gastroenterologist).
3. Mention all symptoms- even if they seem unrelated.
4. Get a second opinion, even if you trust the first one (a doctor with nothing to hide will not be offended by this- I asked).
5. Educate yourself about the medications you are on- including risks, side effects, and appropriate dosage.
6. Educate yourself about your diagnosis. (Make sure to use sites that are not trying to sell you anything.)
7. Ask your doctors to consult with each other (bring the contact information to your visit).
8. If you are on an expensive medication, find out if the drug company has a program to help you pay for it.
9. Remicade and other tnf-blockers are not appropriate for everyone. However, my gastroenterologist told me last year Crohn's Disease is now treated differently than Ulcerative Colitis.
*UC is still treated with a "bottom up" approach- they are supposed to try Asacol, Imuran, etc. first- then go to tnf-blockers if that doesn't work.
*CD is supposed to be treated with a "top-down" approach- they are supposed to go straight to tnf-blockers.
*In the original studies CD and UC were lumped together because of a small sample size. Newer studies looked at the diseases separately, and UC responded differently to medication than CD. If your gastro doctor does not know this information, he/she is not keeping up with the latest studies.
10. Individual health insurance is very, very expensive for people with chronic diseases. (I could by a vacation home for the amount that I pay for it.)
Thank you for your interest in my story. I look forward to being a part of this forum!
