I remember way back in the 80's when sulpha drugs were all that I needed to control my disease. All I really had to worry about then was making sure I ate before I took my meds. Twenty some odd years later and I started on the biologics. The doctors talked about them like they were the best thing every. Remicade was the first for me. I would show up at the hospital--they only did it in outpatient services back then, get my IV started, and get to work on my graduate studies that I always brought with me. No need in wasting that four or so hours. I was so excited when I started seeing results very quickly. But disappointment soon came when time and again the effects of the remicade would wear off within a couple of weeks. I was in the hospital at UA Birmingham when the superstar surgeon decided to push me on two rounds of remicade back-to-back. Dumb idea for a patient with asthma. One severe asthma attack later and remicade was marked off the list of biologics for me.
Next came Humira. Two years and countless bacterial infections later, and that was marked off the list of biologics for me.
But of course there is always another one in the pipeline. Cimzia is supposedly the be all and end all of Crohn's medications out there. What did it do to me? My lips swelled beyond recognition exactly one week after my injections. Swelled to the point they cracked in several places. I also kept bacterial infections the whole three months I was on the drug.
I guess what I have concluded from my adventure with biologics is that they aren't for me. I've heard so many people with happy results but for some reason my body does not play well with the biologics. I guess I will stick with good ol' Imuran.
Tuesday, May 31, 2011
Monday, May 30, 2011
Sample Review
I guess that for a blog about Crohn's disease that I am not doing too well considering two of my first three posts are about ostomy supplies rather than Crohn's. But while it is fresh in my mind I figured I would give my official review of the new Coloplast Sensura Xpro.
This review should be prefaced by the fact that I am five months pregnant and the size and shape of my abdomen may play a part in why I did not like the Xpro. My ET nurse recommended that I go to a larger sized cut-to-fit wafer to accommodate my expanding stoma. Because of the size of my stoma I have long required a wafer with convexity. The problem with going to the larger sized wafer is that the convexity of the wafer is not effective. I'm not sure if anyone else has noticed that the cut-to-fit area gives a little more that the rest of the wafer. The give in the cut-to-fit area rendered the convexity useless, with my wafer lasting only about four hours.
On a Crohn's note, I have my second trimester appointment with my new GI doctor at Vanderbilt this week. As a new patient, she was chomping at the bit to run every test under the sun on me back this winter but that all came to a halt when we found out I was pregnant. I have to admit it has left me a bit anxious myself, not knowing the true state of my disease as I head in to the second half of my pregnancy. Every time I have a pain I am convinced that my Crohn's is flaring.
This review should be prefaced by the fact that I am five months pregnant and the size and shape of my abdomen may play a part in why I did not like the Xpro. My ET nurse recommended that I go to a larger sized cut-to-fit wafer to accommodate my expanding stoma. Because of the size of my stoma I have long required a wafer with convexity. The problem with going to the larger sized wafer is that the convexity of the wafer is not effective. I'm not sure if anyone else has noticed that the cut-to-fit area gives a little more that the rest of the wafer. The give in the cut-to-fit area rendered the convexity useless, with my wafer lasting only about four hours.
On a Crohn's note, I have my second trimester appointment with my new GI doctor at Vanderbilt this week. As a new patient, she was chomping at the bit to run every test under the sun on me back this winter but that all came to a halt when we found out I was pregnant. I have to admit it has left me a bit anxious myself, not knowing the true state of my disease as I head in to the second half of my pregnancy. Every time I have a pain I am convinced that my Crohn's is flaring.
Friday, May 27, 2011
Ostomy Samples
You would have thought that Christmas was wrapped in my birthday yesterday afternoon when a my new samples arrived from Coloplast on our doorstep a whole day early. As a 10 year veteran in the ostomy world, I have tried it all. Been there and done that. But the day a new box/envelope of samples arrive and I am still absolutely giddy.
I do the same thing every time I receive ostomy samples--one is sacrificed for the good of the team, one is tried out, and usually I am so unhappy with the product that the third is stored away with the other disappointing samples. I could be a consultant for Consumer Reports with the testing and nit-picking I will do with that first sample. What will happen if I yank it this way? What will happen if I bend the wafer this far? How many different ways can I roll and bend the closure before it fails?
We are trusting our lives to this little product. That may be a little dramatic, but really we are. Have you ever been out in public and had a leak? My worst leak happened in the middle of church when I was sitting smack dab in the middle of the row. These companies are asking me to rest my dignity in their product. It has to hold up to my scrutiny and active life-style to earn my respect.
When a woman with Crohn's disease, an ostomy, and a couple of hernias gets pregnant, an entire medical team swarms in to action. I cannot remember for certain, but I think my third call with the news I was pregnant was to my ostomy nurse. She told me the biggest problem I would have ostomy-wise is that my stoma would most likely expand some requiring a change in ostomy products. Four months later and here I am, with a box full of ostomy supplies that won't fit my stoma. And what did my ostomy nurse send me home with? One piece Hollister samples with a transparent bag!!! In what universe does a person want to see their poo at all times? This led me to a two day search through the top three ostomy supply companies' websites, trying to figure out what on earth to settle on for samples.
In my opinion Coloplast (http://www.us.coloplast.com) is the the be all and end all of ostomy products. Hollister (www.hollister.com) has tried to keep up with their "lock and roll" but it doesn't hold a candle to the Coloplast products with the velcro closure. After trying the three major brands out there--Hollister, Convatec, and Coloplast, I can say that I am happiest with Coloplast. So happy that I have used their products for over six years. I received three samples of the all-new Sensura Xpro wafer and cannot wait to see how they work.
I do the same thing every time I receive ostomy samples--one is sacrificed for the good of the team, one is tried out, and usually I am so unhappy with the product that the third is stored away with the other disappointing samples. I could be a consultant for Consumer Reports with the testing and nit-picking I will do with that first sample. What will happen if I yank it this way? What will happen if I bend the wafer this far? How many different ways can I roll and bend the closure before it fails?
We are trusting our lives to this little product. That may be a little dramatic, but really we are. Have you ever been out in public and had a leak? My worst leak happened in the middle of church when I was sitting smack dab in the middle of the row. These companies are asking me to rest my dignity in their product. It has to hold up to my scrutiny and active life-style to earn my respect.
When a woman with Crohn's disease, an ostomy, and a couple of hernias gets pregnant, an entire medical team swarms in to action. I cannot remember for certain, but I think my third call with the news I was pregnant was to my ostomy nurse. She told me the biggest problem I would have ostomy-wise is that my stoma would most likely expand some requiring a change in ostomy products. Four months later and here I am, with a box full of ostomy supplies that won't fit my stoma. And what did my ostomy nurse send me home with? One piece Hollister samples with a transparent bag!!! In what universe does a person want to see their poo at all times? This led me to a two day search through the top three ostomy supply companies' websites, trying to figure out what on earth to settle on for samples.
In my opinion Coloplast (http://www.us.coloplast.com) is the the be all and end all of ostomy products. Hollister (www.hollister.com) has tried to keep up with their "lock and roll" but it doesn't hold a candle to the Coloplast products with the velcro closure. After trying the three major brands out there--Hollister, Convatec, and Coloplast, I can say that I am happiest with Coloplast. So happy that I have used their products for over six years. I received three samples of the all-new Sensura Xpro wafer and cannot wait to see how they work.
Thursday, May 26, 2011
About Me
I guess my first post on my new blog should establish my street cred in the Crohn's world. I have had Crohn's since I was nine years old--I am 35 now, so I really don't know anything but life with Crohn's. I've had four Crohn's related surgeries: all four have been major, I have flashbacks still, kinds of surgeries. I like to think that I don't have that bad of a case but after having a number of doctors tell me that my disease is beyond their capabilities, I'm starting to think otherwise. Either that or I am in denial.
I have been blessed by a "I don't care who knows" attitude that has helped me encourage a great number of people. When I was younger, having a disease like this was so embarrassing. Diarrhea, vomiting, nausea, anemia, etc. aren't very appealing. It wasn't until I was in my mid-twenties, and more secure in who I was as an individual, that I was able to do away with the shame that comes with Crohn's disease. This of course coincided with me becoming increasingly sicker, making it harder to hide. Once I embraced my new "I don't care who knows" attitude, I came out of my shell.
I am embarking on new territory, for me at least, as I head in to my fifth month of pregnancy. I appear to be in the fortunate 33% of women with Crohn's who go in to remission while they are pregnant. I have to admit, a big reason that I finally started a blog is because there is little, if any information out there for women with Crohn's disease and their journey through pregnancy.
So here you have it. My first post.
I have been blessed by a "I don't care who knows" attitude that has helped me encourage a great number of people. When I was younger, having a disease like this was so embarrassing. Diarrhea, vomiting, nausea, anemia, etc. aren't very appealing. It wasn't until I was in my mid-twenties, and more secure in who I was as an individual, that I was able to do away with the shame that comes with Crohn's disease. This of course coincided with me becoming increasingly sicker, making it harder to hide. Once I embraced my new "I don't care who knows" attitude, I came out of my shell.
I am embarking on new territory, for me at least, as I head in to my fifth month of pregnancy. I appear to be in the fortunate 33% of women with Crohn's who go in to remission while they are pregnant. I have to admit, a big reason that I finally started a blog is because there is little, if any information out there for women with Crohn's disease and their journey through pregnancy.
So here you have it. My first post.
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