It's been a while since any of us have posted anything here - would really like to get these blog posts going again and get some new people on here sharing their life stories and their battles / successes with Crohn's. If you're interested - email me.
My life over the summer has been pretty crazy. For those of you who keep up with me, you know I'm pretty OCD with my running and I this year I started competing in triathlons. Got 2 triathlons under my belt & was training pretty steady for running a full marathon this fall... Then the wheels fell off...
Not literally off my bike... but I ended up with a stress fracture in my left shin. What does than mean to a runner - NO RUNNING for 12 weeks!! So I have not run since the first of July, until today. The doctor has now cleared me to run and I was able to get out and run 1 mile today. Thank Heaven for the small things in life.
Have to wonder in the back of my mind if the stress fracture might somehow be tied to Crohn's and the lack of nutrition that our bodies get and keep inside. I was not training hard and was not increasing my mileage severely - I guess anything could happen and cause a stress fracture, but have to wonder what role Crohn's played. Probably will never get the true answer this side of Heaven.
Still taking Humira on a regular basis - 1 shot every two weeks. I take Pentasa, but have the biggest struggle trying to remember to take it 4 times a day. When I take it I can tell that I feel better, but dangit - why can't they just make it one pill a day. We Crohn's patients do try to have a life - & trying to fit those pills every 4 hours into a schedule is tough. Should be that tough, but it is...
Hope you guys / gals are doing ok out there & we'll chat again soon.
Showing posts with label Chadwick. Show all posts
Showing posts with label Chadwick. Show all posts
Tuesday, September 29, 2009
Tuesday, June 16, 2009
Why I Run
I often get asked why I run? Why would I put my body through the training to be able to do triahlons and marathons and ultimately IronMan. Why would anyone put themselves though this? Why would you give the most precious commodity the we all have in our lives - time. Why would you want to give when Crohn's, the disease racking your body every day, only wants to take.
Put simply I run because I can. I say that not out of any type of arrogance but out of the knowledge that there was a time in my life that I was bedridden and simply struggled with the basics of life - and the unfortunate knowledge that I may one day return to that state. So here I am, Carpe Diem & running because, and while, I can.
Those of you who know me, know that I do not wear my Crohn's on my sleeve. I know that it influences my life and my daily decisions, but I refuse to allow it to define who I am. I am not a Crohn's patient who is able to do all of these things - I am a man who does all of these things and manages a medical aspect of his life. It is also fun to talk to people who we have known since we moved to Dacula (3 years ago), who have had some involvement in our lives and then find out "oh by the way, you know I have Crohn's, right?" It just doesn't come up and I refuse to be known as "that guy with Crohn's" - wow, I'm rambling.
But there are times when God opens up the Crohn's door for us to be a support to family and friends who are potentially struggling with this horrible disease. One of those doors has been open recently with some new friends in our Sunday School class.
Their son has been a pretty sick little boy and the docs just can't seem to get a handle on what it is. Any of you with Crohn's or Colitis understand this process. Test after test after test. His next test is tomorrow morning at 6am - the dreaded scopes (need I say more). Please be in prayer for this family and pray that the doctors can find what is going on. Only then can treatment truly begin. The unknown is the hardest part, but there is a possibility that this is Crohn's or Colitis.
I don't know if any of you will be willing to take time to do this tomorrow morning - but I'm going ask. I have been running in the morning and tomorrow, am scheduled to run 4 miles. My commitment is to run these 4 miles in honor of Chase, because I know that tomorrow morning at 6am, he can not run. I feel strongly the need to run for those who can't. Tomorrow is my hill run day - so I will have 4 miles of peaks and valleys of one on one...Me & God time to pray for this little guy. Any of you willing to dedicate your morning run miles tomorrow to Chase and to pray for him while you run.
If you can't run early at his procedure time - then just run anytime during the day. His mom and dad need your prayers all day long, just as much as he does. Pray for their peace.
I pray that God will guide the hands of the doctors to find out what is wrong. I pray with all my heart it is not Crohn's or Colitis - I would wish this disease on my worst enemy. But if it is, Then I pray that God will provide the love and support that this young man and his family need... right now.
Why do I run.... I do it for those who can't.
Put simply I run because I can. I say that not out of any type of arrogance but out of the knowledge that there was a time in my life that I was bedridden and simply struggled with the basics of life - and the unfortunate knowledge that I may one day return to that state. So here I am, Carpe Diem & running because, and while, I can.
Those of you who know me, know that I do not wear my Crohn's on my sleeve. I know that it influences my life and my daily decisions, but I refuse to allow it to define who I am. I am not a Crohn's patient who is able to do all of these things - I am a man who does all of these things and manages a medical aspect of his life. It is also fun to talk to people who we have known since we moved to Dacula (3 years ago), who have had some involvement in our lives and then find out "oh by the way, you know I have Crohn's, right?" It just doesn't come up and I refuse to be known as "that guy with Crohn's" - wow, I'm rambling.
But there are times when God opens up the Crohn's door for us to be a support to family and friends who are potentially struggling with this horrible disease. One of those doors has been open recently with some new friends in our Sunday School class.
Their son has been a pretty sick little boy and the docs just can't seem to get a handle on what it is. Any of you with Crohn's or Colitis understand this process. Test after test after test. His next test is tomorrow morning at 6am - the dreaded scopes (need I say more). Please be in prayer for this family and pray that the doctors can find what is going on. Only then can treatment truly begin. The unknown is the hardest part, but there is a possibility that this is Crohn's or Colitis.
I don't know if any of you will be willing to take time to do this tomorrow morning - but I'm going ask. I have been running in the morning and tomorrow, am scheduled to run 4 miles. My commitment is to run these 4 miles in honor of Chase, because I know that tomorrow morning at 6am, he can not run. I feel strongly the need to run for those who can't. Tomorrow is my hill run day - so I will have 4 miles of peaks and valleys of one on one...Me & God time to pray for this little guy. Any of you willing to dedicate your morning run miles tomorrow to Chase and to pray for him while you run.
If you can't run early at his procedure time - then just run anytime during the day. His mom and dad need your prayers all day long, just as much as he does. Pray for their peace.
I pray that God will guide the hands of the doctors to find out what is wrong. I pray with all my heart it is not Crohn's or Colitis - I would wish this disease on my worst enemy. But if it is, Then I pray that God will provide the love and support that this young man and his family need... right now.
Why do I run.... I do it for those who can't.
Friday, November 7, 2008
Running the Race
No updates from me in a while so I thought I would take a minute to share what is going on in my life & dealing with my Crohn's... This is cut from my personal blog, but I thought it might be relevant here today.
Wow... how time flies!!! Seems like no time ago I was just getting started back into running & here I am ready to head out to my first half marathon tomorrow in Chickamauga, GA. I know I am really bad about keeping these notes up to date, but I figured since the entire reason for starting this was to keep track of training progress to my running my first half marathon, I should at least update it today.
I started running again in September 2007 - with my motivation being to run with the Crohn's & Colitis Foundation Team at the ING Marathon in Miami last January. Well, with the best laid plans and intentions, I was not able to make that trip as life got in the way. But I found something in running, and that training, that I had forgotten about. There is a peace and clarity of thought for me when I run, that really doesn't come any other time. I think a lot of that is because I take my running time to get alone with God and just talking about... everything.
You have to keep in mind that up to this point in my life, I have not run in almost 18 years - since high school. Most of the reason I have not run is from fear of what running will do to my body because of my Crohn's. Fear of not finding a bathroom soon enough - fear of some adverse reaction to my medications while I run - fear of.....Crohn's. But as of late I have come to a realization that I refuse to live my life in fear and that even if all of these things do happen - I will not be a victim to Crohn's anymore.
So here's to the Battlefield half marathon... Ready to run. Pictures and commentary to follow after the race.
Wow... how time flies!!! Seems like no time ago I was just getting started back into running & here I am ready to head out to my first half marathon tomorrow in Chickamauga, GA. I know I am really bad about keeping these notes up to date, but I figured since the entire reason for starting this was to keep track of training progress to my running my first half marathon, I should at least update it today.
I started running again in September 2007 - with my motivation being to run with the Crohn's & Colitis Foundation Team at the ING Marathon in Miami last January. Well, with the best laid plans and intentions, I was not able to make that trip as life got in the way. But I found something in running, and that training, that I had forgotten about. There is a peace and clarity of thought for me when I run, that really doesn't come any other time. I think a lot of that is because I take my running time to get alone with God and just talking about... everything.
You have to keep in mind that up to this point in my life, I have not run in almost 18 years - since high school. Most of the reason I have not run is from fear of what running will do to my body because of my Crohn's. Fear of not finding a bathroom soon enough - fear of some adverse reaction to my medications while I run - fear of.....Crohn's. But as of late I have come to a realization that I refuse to live my life in fear and that even if all of these things do happen - I will not be a victim to Crohn's anymore.
So here's to the Battlefield half marathon... Ready to run. Pictures and commentary to follow after the race.
Saturday, June 21, 2008
Sussman at sea
Special thanks to Joe who commented on a previous post for turning me on to what Ari Sussman is doing to raise funds for the Crohn's & Colitis Foundation of America.
Here's Joe's comment - "Three years ago a good friend died from post-op complications after his colostomy. He was 26 at the time, and as you can imagine it was a huge tragedy all of us in his life. Another friend is now sailing across the Atlantic, and using the opportunity to raise money for Crohn's and Colitis research (he has secured a $10,000 matching grant). Part of the inspiration for this campaign is the adventurous spirit of our friend Yossi, who passed. The campaign can be found here: https://www.thepoint.com/campaigns/sussman-at-sea. I hope this is something you find interesting and share with your community here at Confessions of a Crohn's Patient."
Click on the link and go check out where he's doing and where he's at now in his quest. Give if you can. This is a pretty cool way to raise awareness and money at the same time. Hopefully he'll get to his goal of $20K.
Here's Joe's comment - "Three years ago a good friend died from post-op complications after his colostomy. He was 26 at the time, and as you can imagine it was a huge tragedy all of us in his life. Another friend is now sailing across the Atlantic, and using the opportunity to raise money for Crohn's and Colitis research (he has secured a $10,000 matching grant). Part of the inspiration for this campaign is the adventurous spirit of our friend Yossi, who passed. The campaign can be found here: https://www.thepoint.com/campaigns/sussman-at-sea. I hope this is something you find interesting and share with your community here at Confessions of a Crohn's Patient."
Click on the link and go check out where he's doing and where he's at now in his quest. Give if you can. This is a pretty cool way to raise awareness and money at the same time. Hopefully he'll get to his goal of $20K.
Friday, June 6, 2008
Medication du jour - Imuran
I take 1 - 50mg tablet of Imuran 1xday. It's not nearly as cumbersome as the Pentasa. Small pill about like taking an asprin. The fact I only have to take it once a day is very nice. I do have to go once a quarter for them to check my liver enzymes - just bloodwork, to make sure my body isn't doing something crazy on this medicine.
Here's some more details from GI Health
All About Imuran (azothioprine)
Many patients are not as well informed about prescription medications as they ought to be. We believe the more you know about your medications, the better. This article has been written to help you understand more about what Imuran is and the importance of taking it properly. If any of the information causes you special concern or if you want additional information about your medicine and its use, check with your doctor or pharmacist.
If any of the information in this article causes you special concern or if you want additional information about your medicine and its use, check with your doctor or pharmacist.
Remember to keep all prescription drugs out of reach and sight of children when not in use. Store Imuran in the original labeled container in a cool dry place. Protect from light. Always read the label before using.
What is Imuran?
Introduced in 1968, Imuran is a powerful drug that weakens the immune system. It is often used to prevent rejection of kidney transplants. It is also used to treat severe cases of rheumatoid arthritis, systemic lupus, polymyositis, Crohn's disease, ulcerative colitis, and other "autoimmune" disorders. Its use is usually confined to patients who have failed to respond adequately to simpler treatment.
The generic name of Imuran is azothioprine (ay za THYE oh preen). Each tablet contains 50 milligrams and is easily broken in half when dosage adjustments are needed. Imuran, itself, does not act against IBD. After being absorbed by the intestines, it is changed in the liver to a chemical called 6-mercaptopurine, or 6-MP. This form of the drug is also available by prescription and sold as Purinethol.
What Imuran is not.
Imuran is not the same as the prednisone. But, Imuran depresses the immune system as does prednisone. This usually allows your doctor to reduce your dose of prednisone resulting in less side effects.
Imuran is not habit-forming. It does not cause drowsiness and will not affect your driving or working. It does not cause sexual impotence. There are no restrictions on exposure to sunlight.
How does Imuran work?
Immunomodulating agents, or drugs that suppress the immune system, such as Imuran have become important tools in the long term treatment of inflammatory bowel diseases such as Crohn's disease and ulcerative colitis. Although the exact mechanism of how Imuran works is not known, it is felt that by inhibiting the immune system, this drug suppresses the "overactive" immune reaction that is responsible for such disorders as Crohn's disease and Ulcerative Colitis.
Taking Imuran properly
1. Imuran is best taken with food. Imuran can irritate the stomach lining and therefore should be taken with food which serves as a buffer and reduces the irritation. The tablets may be crushed if necessary. There are no food or beverage restrictions. Imuran can be taken with milk. It does not interact with alcohol or tobacco.
2. Take the dose as prescribed once daily. There is no fixed rule for the correct dose of Imuran. The average dose is one or two tablets daily, but each case is different. Your doctor will determine what initial dose is best for you depending on the activity of your disease, your age, weight, any other medical conditions you may have, and your response to treatment - do not alter the dose on your own. The goal, of course, is to control your illness with the lowest effective dose of Imuran possible. Your doctor will routinely reassess what dose is necessary for you. The tablets may be crushed if necessary. If two tablets are prescribed, they may be taken at the same time once daily.
3. If you forget a dose, take the normal dose of the medication as soon as you remember and resume your normal schedule the following morning. If you do not remember until the next day, skip the missed dose.
4. Do not expect immediate results. Imuran does not work right away. In fact, it may take more than 3 months to show a beneficial response. You can plan to be on this drug anywhere from 3 months to several years.
5. Keep all your appointments. Imuran is only given under close supervision because of the risk of serious adverse effects. Periodic blood tests are mandatory for the safe use of this drug. Report for examinations as directed.
6. Be sure all of your doctors know that you are taking this drug. This is a good general rule, but it is especially important for you to remember if you are away from your doctor and require major surgery or develop a severe infection. If you are to be on Imuran for a long period of time, carry a reminder with you on a Medic-Alert bracelet or in your wallet. (Medic-Alert Foundation can be contacted at their toll-free number 800-344-3226)
What are the side effects?
This is the main concern. When taken over a long period of time (months to years) Imuran can cause many side effects. But when Crohn's disease or ulcerative colitis become difficult to control with prednisone, the benefit of Imuran far outweighs the potential risks. For difficult to manage conditions, Imuran can be a miraculous medication. In general, the risk of side effects depends on the length of time you take Imuran and the amount you take.
These side effects can occur with short term use but fortunately are usually reversible as the dose of Imuran is decreased:
skin rash
loss of appetite
nausea, vomiting
diarrhea These side effects are more serious. They usually occur after long term usage.
Immediately report any of these symptoms to your doctor:
>Bone marrow depression
severe fatigue
weakness
fever
severe sore throat
abnormal bleeding or bruising
sores on lips and in mouth
>Liver damage
yellow eyes and skin
jaundice
dark-colored urine
>Drug-induced pneumonia
severe persistent cough
shortness of breath
Pancreatitis
severe stomach pain
nausea and vomiting
Other side effects not listed above may also occur in some patients. If you notice any other effects, check with your doctor, nurse, or pharmacist.
You can help limit side effects by taking the medication exactly as prescribed and reporting any problems to your doctor. Report promptly any indication of a developing infection - fever, chills, lip or mouth sores, etc.
What about cancer?
Some doctors feel that there may be a slightly increased risk of some cancers such as lymphoma or Hodgkins disease after long-term use of Imuran. But , a scientific study done at the University of Pennsylvania in 2001 studied 1467 patients with Ulcerative colitis or Crohn's Disease and found no increased risk of lymphoma in patients who took Imuran. However, there is still some controversy about this point - so you must be willing to accept this possible risk if you take Imuran. Again, this powerful drug is only used as a last resort in patients with severe inflammatory bowel disease who do not respond to conventional treatment. In general, it is felt that the benefits of Imuran in this difficult situation outweigh the risks.
Monitoring Imuran
Each patient is different and the optimum dose of Imuran varies from one individual to another. There is sometimes a narrow range between the most effective dose and a toxic dose. The doctor determines the best dose based on age, weight, response to treatment, and monitors symptoms and blood tests for side effects.
Technology is also now available that allows for more accurate dose adjustment. The metabolites of Imuran called 6-TG and 6-MMP can be directly measured in the blood. Higher 6-TG levels correlate with clinical response to Imuran but also the risk of bone marrow suppression. Higher 6-MMP levels correlates with liver toxicity. These special blood tests may be requested from Prometheus Laboratories to help the doctor determine the proper dose. Studies at the Cleveland Clinic have suggested that 6-TG levels greater than 260 are necessary for a clinical benefit and 6-MMP levels over 5700 have been associated with liver toxicity.
Precautions
Do not take Imuran if you are pregnant or plan to become pregnant in the near future. Birth defects have been reported in animals that received large doses of Imuran during pregnancy. This drug also has the potential for producing birth defects in human offspring. Use of this drug is not recommended during pregnancy. There is a possibility that birth defects may occur if either the mother or father is using Imuran at the time of conception. Use of birth control is recommended while taking this drug. Do not breast feed while on this drug.
Notify your doctor if you recently had chickenpox or shingles. Be sure to inform him if you are taking allopurinol (Zyloprim), Dilantin, Rifampin, or phenobarbital. These drugs may increase the blood levels of Imuran, which can lead to serious side effects. Tell your doctor if you have any kind of active infection, have a history of bone marrow disorders, severe liver or kidney disease, or are pregnant or plan to become pregnant in the near future. Be aware that Imuran can lessen the effects of the anticoagulant drug Coumadin.
Remember
Imuran is a very powerful drug with many helpful properties, but as with all potent medications, side effects may occur. You can best limit problems with this medication by taking it exactly as prescribed. If you have any questions or concerns, please discuss them with your doctor.
Here's some more details from GI Health
All About Imuran (azothioprine)
Many patients are not as well informed about prescription medications as they ought to be. We believe the more you know about your medications, the better. This article has been written to help you understand more about what Imuran is and the importance of taking it properly. If any of the information causes you special concern or if you want additional information about your medicine and its use, check with your doctor or pharmacist.
If any of the information in this article causes you special concern or if you want additional information about your medicine and its use, check with your doctor or pharmacist.
Remember to keep all prescription drugs out of reach and sight of children when not in use. Store Imuran in the original labeled container in a cool dry place. Protect from light. Always read the label before using.
What is Imuran?
Introduced in 1968, Imuran is a powerful drug that weakens the immune system. It is often used to prevent rejection of kidney transplants. It is also used to treat severe cases of rheumatoid arthritis, systemic lupus, polymyositis, Crohn's disease, ulcerative colitis, and other "autoimmune" disorders. Its use is usually confined to patients who have failed to respond adequately to simpler treatment.
The generic name of Imuran is azothioprine (ay za THYE oh preen). Each tablet contains 50 milligrams and is easily broken in half when dosage adjustments are needed. Imuran, itself, does not act against IBD. After being absorbed by the intestines, it is changed in the liver to a chemical called 6-mercaptopurine, or 6-MP. This form of the drug is also available by prescription and sold as Purinethol.
What Imuran is not.
Imuran is not the same as the prednisone. But, Imuran depresses the immune system as does prednisone. This usually allows your doctor to reduce your dose of prednisone resulting in less side effects.
Imuran is not habit-forming. It does not cause drowsiness and will not affect your driving or working. It does not cause sexual impotence. There are no restrictions on exposure to sunlight.
How does Imuran work?
Immunomodulating agents, or drugs that suppress the immune system, such as Imuran have become important tools in the long term treatment of inflammatory bowel diseases such as Crohn's disease and ulcerative colitis. Although the exact mechanism of how Imuran works is not known, it is felt that by inhibiting the immune system, this drug suppresses the "overactive" immune reaction that is responsible for such disorders as Crohn's disease and Ulcerative Colitis.
Taking Imuran properly
1. Imuran is best taken with food. Imuran can irritate the stomach lining and therefore should be taken with food which serves as a buffer and reduces the irritation. The tablets may be crushed if necessary. There are no food or beverage restrictions. Imuran can be taken with milk. It does not interact with alcohol or tobacco.
2. Take the dose as prescribed once daily. There is no fixed rule for the correct dose of Imuran. The average dose is one or two tablets daily, but each case is different. Your doctor will determine what initial dose is best for you depending on the activity of your disease, your age, weight, any other medical conditions you may have, and your response to treatment - do not alter the dose on your own. The goal, of course, is to control your illness with the lowest effective dose of Imuran possible. Your doctor will routinely reassess what dose is necessary for you. The tablets may be crushed if necessary. If two tablets are prescribed, they may be taken at the same time once daily.
3. If you forget a dose, take the normal dose of the medication as soon as you remember and resume your normal schedule the following morning. If you do not remember until the next day, skip the missed dose.
4. Do not expect immediate results. Imuran does not work right away. In fact, it may take more than 3 months to show a beneficial response. You can plan to be on this drug anywhere from 3 months to several years.
5. Keep all your appointments. Imuran is only given under close supervision because of the risk of serious adverse effects. Periodic blood tests are mandatory for the safe use of this drug. Report for examinations as directed.
6. Be sure all of your doctors know that you are taking this drug. This is a good general rule, but it is especially important for you to remember if you are away from your doctor and require major surgery or develop a severe infection. If you are to be on Imuran for a long period of time, carry a reminder with you on a Medic-Alert bracelet or in your wallet. (Medic-Alert Foundation can be contacted at their toll-free number 800-344-3226)
What are the side effects?
This is the main concern. When taken over a long period of time (months to years) Imuran can cause many side effects. But when Crohn's disease or ulcerative colitis become difficult to control with prednisone, the benefit of Imuran far outweighs the potential risks. For difficult to manage conditions, Imuran can be a miraculous medication. In general, the risk of side effects depends on the length of time you take Imuran and the amount you take.
These side effects can occur with short term use but fortunately are usually reversible as the dose of Imuran is decreased:
skin rash
loss of appetite
nausea, vomiting
diarrhea These side effects are more serious. They usually occur after long term usage.
Immediately report any of these symptoms to your doctor:
>Bone marrow depression
severe fatigue
weakness
fever
severe sore throat
abnormal bleeding or bruising
sores on lips and in mouth
>Liver damage
yellow eyes and skin
jaundice
dark-colored urine
>Drug-induced pneumonia
severe persistent cough
shortness of breath
Pancreatitis
severe stomach pain
nausea and vomiting
Other side effects not listed above may also occur in some patients. If you notice any other effects, check with your doctor, nurse, or pharmacist.
You can help limit side effects by taking the medication exactly as prescribed and reporting any problems to your doctor. Report promptly any indication of a developing infection - fever, chills, lip or mouth sores, etc.
What about cancer?
Some doctors feel that there may be a slightly increased risk of some cancers such as lymphoma or Hodgkins disease after long-term use of Imuran. But , a scientific study done at the University of Pennsylvania in 2001 studied 1467 patients with Ulcerative colitis or Crohn's Disease and found no increased risk of lymphoma in patients who took Imuran. However, there is still some controversy about this point - so you must be willing to accept this possible risk if you take Imuran. Again, this powerful drug is only used as a last resort in patients with severe inflammatory bowel disease who do not respond to conventional treatment. In general, it is felt that the benefits of Imuran in this difficult situation outweigh the risks.
Monitoring Imuran
Each patient is different and the optimum dose of Imuran varies from one individual to another. There is sometimes a narrow range between the most effective dose and a toxic dose. The doctor determines the best dose based on age, weight, response to treatment, and monitors symptoms and blood tests for side effects.
Technology is also now available that allows for more accurate dose adjustment. The metabolites of Imuran called 6-TG and 6-MMP can be directly measured in the blood. Higher 6-TG levels correlate with clinical response to Imuran but also the risk of bone marrow suppression. Higher 6-MMP levels correlates with liver toxicity. These special blood tests may be requested from Prometheus Laboratories to help the doctor determine the proper dose. Studies at the Cleveland Clinic have suggested that 6-TG levels greater than 260 are necessary for a clinical benefit and 6-MMP levels over 5700 have been associated with liver toxicity.
Precautions
Do not take Imuran if you are pregnant or plan to become pregnant in the near future. Birth defects have been reported in animals that received large doses of Imuran during pregnancy. This drug also has the potential for producing birth defects in human offspring. Use of this drug is not recommended during pregnancy. There is a possibility that birth defects may occur if either the mother or father is using Imuran at the time of conception. Use of birth control is recommended while taking this drug. Do not breast feed while on this drug.
Notify your doctor if you recently had chickenpox or shingles. Be sure to inform him if you are taking allopurinol (Zyloprim), Dilantin, Rifampin, or phenobarbital. These drugs may increase the blood levels of Imuran, which can lead to serious side effects. Tell your doctor if you have any kind of active infection, have a history of bone marrow disorders, severe liver or kidney disease, or are pregnant or plan to become pregnant in the near future. Be aware that Imuran can lessen the effects of the anticoagulant drug Coumadin.
Remember
Imuran is a very powerful drug with many helpful properties, but as with all potent medications, side effects may occur. You can best limit problems with this medication by taking it exactly as prescribed. If you have any questions or concerns, please discuss them with your doctor.
Friday, May 30, 2008
Medication du jour - Pentasa
So I'll go first with the meds. I take 2-500mg capsules 4x a day. These are big blue pills (as opposed to the little blue pills) that are not for the faint at heart to take. My wife calls them horse pills. They are by far the largest medication that I have ever taken.
Here's the stuff from their website: www.pentasaus.com
What is PENTASA?
PENTASA is an anti-inflammatory drug containing mesalamine, which helps to reduce inflammation in the intestine. Specifically, PENTASA is approved for the induction of remission and for the treatment of mildly to moderately active ulcerative colitis.
PENTASA Features an Innovative Drug Delivery System
PENTASA delivers mesalamine to your small and large intestine in a special way. Here’s how it works:
Each PENTASA capsule has a gelatin-like coating. Once inside your stomach, the coating dissolves, releasing tiny semiporous spheres. These spheres help deliver the mesalamine to your small and large intestine. Water found inside your intestine flushes mesalamine out from the spheres. Once the mesalamine is released, the drug is free to help reduce the inflammation.
PENTASA 500-mg Capsules May Relieve Your Symptoms with Fewer Capsules
PENTASA helps to bring your symptoms under control. In a clinical study, PENTASA significantly reduced the severity of the most common signs and symptoms of ulcerative colitis (compared with a sugar pill), including:
Bleeding from the rectum
Stomach cramps
The urge to go to the bathroom
The number of trips to the toilet each day
PENTASA 500-mg capsules provide symptom control and relief with only 8 capsules a day. That’s half the number of capsules compared with the 250-mg formulation.
So that's a synopsis from their site. Go there if you want to read more. I did find it interesting to read that they have a Patient Assistance Program for free or low cost medication for low income families or those with no insurance.
Pros: Well, I do notice that I do not go to the bathroom as much as I did before I was taking it, which is always positive.
Cons: I can't for the life of me remember to take this medication every time I'm supposed to. Even with setting an alarm to help me remember, I still don't take it as prescribed. Maybe they'll read this and take a suggestion - get it down to taking just once a day. I would take all 8 of them in the morning, if it meant I didn't have to take them all day.
Hope that gives you some insight. Until next time...
Here's the stuff from their website: www.pentasaus.com
What is PENTASA?
PENTASA is an anti-inflammatory drug containing mesalamine, which helps to reduce inflammation in the intestine. Specifically, PENTASA is approved for the induction of remission and for the treatment of mildly to moderately active ulcerative colitis.
PENTASA Features an Innovative Drug Delivery System
PENTASA delivers mesalamine to your small and large intestine in a special way. Here’s how it works:
Each PENTASA capsule has a gelatin-like coating. Once inside your stomach, the coating dissolves, releasing tiny semiporous spheres. These spheres help deliver the mesalamine to your small and large intestine. Water found inside your intestine flushes mesalamine out from the spheres. Once the mesalamine is released, the drug is free to help reduce the inflammation.
PENTASA 500-mg Capsules May Relieve Your Symptoms with Fewer Capsules
PENTASA helps to bring your symptoms under control. In a clinical study, PENTASA significantly reduced the severity of the most common signs and symptoms of ulcerative colitis (compared with a sugar pill), including:
Bleeding from the rectum
Stomach cramps
The urge to go to the bathroom
The number of trips to the toilet each day
PENTASA 500-mg capsules provide symptom control and relief with only 8 capsules a day. That’s half the number of capsules compared with the 250-mg formulation.
So that's a synopsis from their site. Go there if you want to read more. I did find it interesting to read that they have a Patient Assistance Program for free or low cost medication for low income families or those with no insurance.
Pros: Well, I do notice that I do not go to the bathroom as much as I did before I was taking it, which is always positive.
Cons: I can't for the life of me remember to take this medication every time I'm supposed to. Even with setting an alarm to help me remember, I still don't take it as prescribed. Maybe they'll read this and take a suggestion - get it down to taking just once a day. I would take all 8 of them in the morning, if it meant I didn't have to take them all day.
Hope that gives you some insight. Until next time...
Medication du jour
Ok, so I thought we might do each other a faover and talk a little about the medications we are currently taken or maybe have taken in the past.
To our writers: If you write something about your medication, make sure to give us the pros and cons of the medications for you personally, not the legalease that you get in with the medications. Real life, real world stories of what these medications do for you personally. Also, if the medication has a website, make sure to include a link so we can go there and check out more info.
To our readers: We want your input. So please comment about the medications we write about. Tell us your stories. And as always - if you want to write a post, shoot me an email & we'll be glad to add you in.
To our writers: If you write something about your medication, make sure to give us the pros and cons of the medications for you personally, not the legalease that you get in with the medications. Real life, real world stories of what these medications do for you personally. Also, if the medication has a website, make sure to include a link so we can go there and check out more info.
To our readers: We want your input. So please comment about the medications we write about. Tell us your stories. And as always - if you want to write a post, shoot me an email & we'll be glad to add you in.
Tuesday, May 27, 2008
Gall Bladder Disease and Crohn's
I know a lot of people with Crohn's who when end up having Gall Bladder issues (myself and my sister included). So I thought I would do a little search and see what I could find about the subject and post it here.
Here is the link to where I found this:
http://www.netdoctor.co.uk/diseases/facts/gallbladderdisease.htm
Gallbladder Disease
Reviewed by Mr Robert Diggory, consultant general surgeon
What and where is the gall bladder?
The gall bladder is a small pear-shaped organ on the underside of the liver that is used to store bile. Bile is made in the liver and is stored in the gall bladder until it is needed to help the digestion of fat.
What is gallbladder disease?
Gallbladder disease is a common condition that affects mainly women, although men can suffer too. The symptoms vary widely from discomfort to severe pain which mainly begins after food. In severe cases the patient can suffer from jaundice, nausea and fever. The most common reason for gallbladder disease is gallstones.
What are gallstones?
Gallstones are solid stones formed in the gall bladder from cholesterol, bile salts and calcium. They can vary in size from a few millimetres to a few centimetres.
What causes gallstones?
Gallstones are formed when bile contains too much cholesterol. The excess cholesterol forms crystals from which gallstones are made.
Who is at risk of developing gallstones?
Gallstones are seen in all age groups but they are rare in the young. The possibility of developing gallstones increases with age.
The following groups are considered to be at increased risk:
people who have relatives with gallstones
obese people
people with a high blood cholesterol level.
women who take drugs containing oestrogen, eg contraceptive pills
people with diseases such as chronic intestinal inflammation (Crohn's disease and ulcerative colitis).
What are the symptoms of gallstones?
Not all gallstones cause symptoms and those detected during a scan performed for other reasons do not usually require treatment. This, however, should be discussed with your doctor.
Symptoms can be extremely variable, but usually present in one of three ways.
Chronic cholecystitis (biliary colic)This is a long-term inflammation of the gall bladder and causes:
sporadic pains in the middle of the upper abdomen, or just below the ribs on the right side
pain which becomes worse over an hour and then stays the same
pain that may spread to the right shoulder or between the shoulder blades
pain that can be accompanied by nausea and vomiting and sometimes excessive wind.An attack can last from a few minutes to two to three hours before getting better. The frequency and severity of attacks is very variable.Attacks can be triggered by eating fatty foods such as chocolate, cheese or pastry.It can be difficult to distinguish the pain from other diseases such as gastric ulcer, back problems, heart pains, pneumonia and kidney stones.
Acute cholecystitis (acute inflammation or infection of the gall bladder)
This condition results in:
persistent pain and a temperature lasting more than 12 hours
pain and tenderness under the ribs on the right side
pain that is made worse by movement or coughing.Patients with acute cholecystitis may not always have gallstones, but usually do.The condition must be treated by a doctor and usually requires admission to hospital. Treatment consists of a course of antibiotics. If this is not effective, emergency surgery may be required to remove the gall bladder.
Jaundice (yellow discolouration of the skin and whites of eyes)
This is caused when there is an obstruction to the flow of bile from the liver. Jaundice is not always caused by gallstones. The symptoms are:
increasingly yellow eyes and skin
skin can become itchy.
pale bowel motions and dark urine.
The condition is often preceded by symptoms similar to those of cholecystitis. Fever and shaking chills are serious symptoms and must be treated by a doctor - they are suggestive of infection travelling through the bile duct system.
I hope you find this info useful. There was a lot more at the site so any of these links will give you more if you are looking.
Until Next Time...
Here is the link to where I found this:
http://www.netdoctor.co.uk/diseases/facts/gallbladderdisease.htm
Gallbladder Disease
Reviewed by Mr Robert Diggory, consultant general surgeon
What and where is the gall bladder?
The gall bladder is a small pear-shaped organ on the underside of the liver that is used to store bile. Bile is made in the liver and is stored in the gall bladder until it is needed to help the digestion of fat.
What is gallbladder disease?
Gallbladder disease is a common condition that affects mainly women, although men can suffer too. The symptoms vary widely from discomfort to severe pain which mainly begins after food. In severe cases the patient can suffer from jaundice, nausea and fever. The most common reason for gallbladder disease is gallstones.
What are gallstones?
Gallstones are solid stones formed in the gall bladder from cholesterol, bile salts and calcium. They can vary in size from a few millimetres to a few centimetres.
What causes gallstones?
Gallstones are formed when bile contains too much cholesterol. The excess cholesterol forms crystals from which gallstones are made.
Who is at risk of developing gallstones?
Gallstones are seen in all age groups but they are rare in the young. The possibility of developing gallstones increases with age.
The following groups are considered to be at increased risk:
people who have relatives with gallstones
obese people
people with a high blood cholesterol level.
women who take drugs containing oestrogen, eg contraceptive pills
people with diseases such as chronic intestinal inflammation (Crohn's disease and ulcerative colitis).
What are the symptoms of gallstones?
Not all gallstones cause symptoms and those detected during a scan performed for other reasons do not usually require treatment. This, however, should be discussed with your doctor.
Symptoms can be extremely variable, but usually present in one of three ways.
Chronic cholecystitis (biliary colic)This is a long-term inflammation of the gall bladder and causes:
sporadic pains in the middle of the upper abdomen, or just below the ribs on the right side
pain which becomes worse over an hour and then stays the same
pain that may spread to the right shoulder or between the shoulder blades
pain that can be accompanied by nausea and vomiting and sometimes excessive wind.An attack can last from a few minutes to two to three hours before getting better. The frequency and severity of attacks is very variable.Attacks can be triggered by eating fatty foods such as chocolate, cheese or pastry.It can be difficult to distinguish the pain from other diseases such as gastric ulcer, back problems, heart pains, pneumonia and kidney stones.
Acute cholecystitis (acute inflammation or infection of the gall bladder)
This condition results in:
persistent pain and a temperature lasting more than 12 hours
pain and tenderness under the ribs on the right side
pain that is made worse by movement or coughing.Patients with acute cholecystitis may not always have gallstones, but usually do.The condition must be treated by a doctor and usually requires admission to hospital. Treatment consists of a course of antibiotics. If this is not effective, emergency surgery may be required to remove the gall bladder.
Jaundice (yellow discolouration of the skin and whites of eyes)
This is caused when there is an obstruction to the flow of bile from the liver. Jaundice is not always caused by gallstones. The symptoms are:
increasingly yellow eyes and skin
skin can become itchy.
pale bowel motions and dark urine.
The condition is often preceded by symptoms similar to those of cholecystitis. Fever and shaking chills are serious symptoms and must be treated by a doctor - they are suggestive of infection travelling through the bile duct system.
I hope you find this info useful. There was a lot more at the site so any of these links will give you more if you are looking.
Until Next Time...
Saturday, May 17, 2008
Counted as normal
As a Crohn's patient, are there things that you accept as just part of everyday life - that you just deal with and it becomes so second nature that you really don't even give them a second thought. Things that the rest of the "healthy" population would just look at us and think we are crazy. Here's what got me to thinking:
When I went and saw my GI doc not to terribly long ago, he asked on average how many times I went to the restroom a day for a "Crohn's moment." My answer was 6-8 times and I didn't even give it a second thought. You see, when I was fir diagnosed - I was going 20-22 times a day, so 6-8 is a drastic improvement. He looked at me very puzzled and said "You know that's not normal - right?" Well I guess in my head, I do know that the average human does not go to the restroom 6-8 times a day, but I have just dealt with it for so long, I just don't think about it.
Got me to wondering what else in my life I just count as normal, but everyone else in the world would think we are crazy? Anything you can thing of that may help the rest of the world add some insight to us "crohnies" would be great.
When I went and saw my GI doc not to terribly long ago, he asked on average how many times I went to the restroom a day for a "Crohn's moment." My answer was 6-8 times and I didn't even give it a second thought. You see, when I was fir diagnosed - I was going 20-22 times a day, so 6-8 is a drastic improvement. He looked at me very puzzled and said "You know that's not normal - right?" Well I guess in my head, I do know that the average human does not go to the restroom 6-8 times a day, but I have just dealt with it for so long, I just don't think about it.
Got me to wondering what else in my life I just count as normal, but everyone else in the world would think we are crazy? Anything you can thing of that may help the rest of the world add some insight to us "crohnies" would be great.
Thursday, May 8, 2008
Crohn's Patient Robert Hill Reaches Peak of Antarctica's Tallest Mountain
Here's a pretty coolstory I found out on the net tonight. Just thought I would share. This story come from www.everestnews.com/stories2005/crohn01152006.htm. I put a link to Rob Hill's website "No Guts Know Glory" on the sidebar, as well as "I.D.E.A.S." which is an organization he helps to support. Hope this story inspires you as it did me.
- Accomplishment Marks Fifth in Seven Summits Campaign for Intestinal Disease Awareness -
Crohn's disease patient Robert (Rob) Hill has summited Vinson Massif, Antarctica's tallest mountain. Hill's team began the climb on January 12th and successfully reached the mountain's peak at 9:00 P.M. G.M.T (4:00 P.M. E.S.T.) on January 19th after eight days of erratic weather and sub-freezing temperatures.
The expedition, sponsored by ConvaTec, a world-leading manufacturer of ostomy and wound care products, marks the fifth in Hill's quest to become the first Crohn's patient and ostomate to scale the Seven Summits, the tallest peaks on the seven continents. By taking on the Seven Summits, Hill hopes to show other people living with intestinal diseases or an ostomy that they should still live their lives to the fullest.
"There was a time when I could barely climb up the stairs from the debilitating pain of Inflammatory Bowel Disease (IBD). So to think that I would ever see Antarctica, let alone climb Vinson Massif, has been a dream come true," says Hill. "Not everyone living with IBD needs to climb mountains, only to live their lives to the fullest."
Nearly 1.5 million Americans are affected by Crohn's disease and ulcerative colitis (collectively known as Inflammatory Bowel Disease), and approximately 750,000 Americans are living with an ostomy due to either IBD, colorectal cancer or other chronic bowel or bladder diseases.
Fewer than 100 people over the past 20 years have successfully scaled the Seven Summits. The feat is hard on anyone, much less someone without their colon, the organ that is primarily responsible for absorbing water and nutrients into the body.
Each climb Hill makes takes a toll on his body. Keeping up his nutrition and hydration is paramount, but even still, he typically loses up to 15 percent of his body weight on each climb.
Rob's Story -- No Guts, Know Glory!
At 23-years of age, Rob was a strong, healthy athlete who had never been sick in his life. Then, confronted with daily diarrhea and sustained, stabbing abdominal cramps, he was eventually diagnosed with Crohn's disease and ulcerative colitis.
As his condition grew worse, Hill lost 80 pounds and a year and a half later his large intestine was removed through an ostomy procedure. "When it came down to losing my colon or losing my life, it wasn't a hard decision to make," he says.
Now, 12 years later, Hill is mid-way through a five-year campaign he calls "No Guts -- Know Glory!" to become the first Crohn's patient and ostomate to climb the Seven Summits. The campaign grew from Rob's love of sport and the outdoors, pursuits he returned to with newfound dedication not long after surgery.
To date, Hill has successfully scaled five of the Seven Summits -- with Vinson Massif being the coldest climb to date (average daytime temperature of -20 degrees F). Conditions on Vinson Massif were so unpredictable that the weather would change from clear and sunny skies to blinding snowstorms in a matter of minutes. But to Hill, what separated Vinson Massif from the other Seven Summits is the complete isolation of the mountain and breathtaking views of the Antarctic landscapes.
For his inspirational efforts, Hill recently was recognized by the Crohn's & Colitis Foundation of America (CCFA) and ConvaTec with an honorary award from the Great Comebacks(R) Program, which, for more than twenty years, has given special recognition to those whose life stories inspire people living with an ostomy.
"I know from experience that Crohn's and colitis can be debilitating and make you feel very inhibited -- physically and emotionally," says Hill. "If you are living with these diseases or going through surgery it's important to know that you can get your life back -- you shouldn't let it define you."
Today, Rob continues to break down barriers for people living with intestinal diseases, letting them know that "it's okay to talk about these conditions and not something to hide behind." This year, Rob will be traveling to CCFA affiliates nationwide, speaking to patient groups about his own experiences and encouraging people to get out and conquer their own personal summits.
Small Steps, Giant Strides Toward IBD Awareness
Hill began his No Guts -- Know Glory! quest in 2002 and has now scaled five of the Seven Summits:
* June 2002, Mt. Elbrus, 18,481 feet (5,633 m), Russia/Georgia, Europe
* October 2003, Mt. Kilimanjaro, 19,339 feet (5,963 m), Tanzania, Africa
* January 2004, Aconcagua, 22,840 foot (6,962 m), Argentina, South America
* June 2005, Denali/Mt. McKinley, 20,320 feet (5,895 m), Alaska, U.S.A., North America
* January 2006, Vinson Massif, 16,067 feet (4,897 m), Antarctica.
- Accomplishment Marks Fifth in Seven Summits Campaign for Intestinal Disease Awareness -
Crohn's disease patient Robert (Rob) Hill has summited Vinson Massif, Antarctica's tallest mountain. Hill's team began the climb on January 12th and successfully reached the mountain's peak at 9:00 P.M. G.M.T (4:00 P.M. E.S.T.) on January 19th after eight days of erratic weather and sub-freezing temperatures.
The expedition, sponsored by ConvaTec, a world-leading manufacturer of ostomy and wound care products, marks the fifth in Hill's quest to become the first Crohn's patient and ostomate to scale the Seven Summits, the tallest peaks on the seven continents. By taking on the Seven Summits, Hill hopes to show other people living with intestinal diseases or an ostomy that they should still live their lives to the fullest.
"There was a time when I could barely climb up the stairs from the debilitating pain of Inflammatory Bowel Disease (IBD). So to think that I would ever see Antarctica, let alone climb Vinson Massif, has been a dream come true," says Hill. "Not everyone living with IBD needs to climb mountains, only to live their lives to the fullest."
Nearly 1.5 million Americans are affected by Crohn's disease and ulcerative colitis (collectively known as Inflammatory Bowel Disease), and approximately 750,000 Americans are living with an ostomy due to either IBD, colorectal cancer or other chronic bowel or bladder diseases.
Fewer than 100 people over the past 20 years have successfully scaled the Seven Summits. The feat is hard on anyone, much less someone without their colon, the organ that is primarily responsible for absorbing water and nutrients into the body.
Each climb Hill makes takes a toll on his body. Keeping up his nutrition and hydration is paramount, but even still, he typically loses up to 15 percent of his body weight on each climb.
Rob's Story -- No Guts, Know Glory!
At 23-years of age, Rob was a strong, healthy athlete who had never been sick in his life. Then, confronted with daily diarrhea and sustained, stabbing abdominal cramps, he was eventually diagnosed with Crohn's disease and ulcerative colitis.
As his condition grew worse, Hill lost 80 pounds and a year and a half later his large intestine was removed through an ostomy procedure. "When it came down to losing my colon or losing my life, it wasn't a hard decision to make," he says.
Now, 12 years later, Hill is mid-way through a five-year campaign he calls "No Guts -- Know Glory!" to become the first Crohn's patient and ostomate to climb the Seven Summits. The campaign grew from Rob's love of sport and the outdoors, pursuits he returned to with newfound dedication not long after surgery.
To date, Hill has successfully scaled five of the Seven Summits -- with Vinson Massif being the coldest climb to date (average daytime temperature of -20 degrees F). Conditions on Vinson Massif were so unpredictable that the weather would change from clear and sunny skies to blinding snowstorms in a matter of minutes. But to Hill, what separated Vinson Massif from the other Seven Summits is the complete isolation of the mountain and breathtaking views of the Antarctic landscapes.
For his inspirational efforts, Hill recently was recognized by the Crohn's & Colitis Foundation of America (CCFA) and ConvaTec with an honorary award from the Great Comebacks(R) Program, which, for more than twenty years, has given special recognition to those whose life stories inspire people living with an ostomy.
"I know from experience that Crohn's and colitis can be debilitating and make you feel very inhibited -- physically and emotionally," says Hill. "If you are living with these diseases or going through surgery it's important to know that you can get your life back -- you shouldn't let it define you."
Today, Rob continues to break down barriers for people living with intestinal diseases, letting them know that "it's okay to talk about these conditions and not something to hide behind." This year, Rob will be traveling to CCFA affiliates nationwide, speaking to patient groups about his own experiences and encouraging people to get out and conquer their own personal summits.
Small Steps, Giant Strides Toward IBD Awareness
Hill began his No Guts -- Know Glory! quest in 2002 and has now scaled five of the Seven Summits:
* June 2002, Mt. Elbrus, 18,481 feet (5,633 m), Russia/Georgia, Europe
* October 2003, Mt. Kilimanjaro, 19,339 feet (5,963 m), Tanzania, Africa
* January 2004, Aconcagua, 22,840 foot (6,962 m), Argentina, South America
* June 2005, Denali/Mt. McKinley, 20,320 feet (5,895 m), Alaska, U.S.A., North America
* January 2006, Vinson Massif, 16,067 feet (4,897 m), Antarctica.
Friday, May 2, 2008
How do you remember???
As Crohn's patients, we all inevitably take a lot of medication. I remember when I was first diagnosed I had to take medication on an empty stomach when I woke up, then with breakfast, the on an empty stomach after beakfast, empty stomach before lunch... on and on it went.
Fortunately, now most of the medication I take is first thing in the morning, with or without food (my preference). But I take Pentasa 4 times a day. So I have to spread it out even through the day. The trick for me is remembering to take it each and every time. So I have an alarm set on my watch for 4 different times during the day to remind me to take my medicine. Most of the time I'm pretty good about taking it when the alarm goes off, but there are times when I just don't feel like it. It get so sick and tired of taking medications.
Luckily for me, my youngest daughter has also become part of my alarm system. She knows now that my alarm is set to remind me to take my medicine. So every time my alarm goes off, I hear this sweet little voice saying "Medicine time daddy." Who can resist? Not me.
So here is my question - how do you remember to take ALL of your medicine EVERY day? Please do share.
Until next time...
Fortunately, now most of the medication I take is first thing in the morning, with or without food (my preference). But I take Pentasa 4 times a day. So I have to spread it out even through the day. The trick for me is remembering to take it each and every time. So I have an alarm set on my watch for 4 different times during the day to remind me to take my medicine. Most of the time I'm pretty good about taking it when the alarm goes off, but there are times when I just don't feel like it. It get so sick and tired of taking medications.
Luckily for me, my youngest daughter has also become part of my alarm system. She knows now that my alarm is set to remind me to take my medicine. So every time my alarm goes off, I hear this sweet little voice saying "Medicine time daddy." Who can resist? Not me.
So here is my question - how do you remember to take ALL of your medicine EVERY day? Please do share.
Until next time...
Thursday, May 1, 2008
Cimzia® Approved in the US for the Treatment of Moderate to Severe Crohn's Disease
Found this on the web tonight - thought I would pass it along. It came from the website - http://www.ucb-group.com/media_centre/3384.asp
Administered every four weeks, UCB's pegylated anti-TNFα offers new treatment option for patients with moderate to severe Crohn's disease.
Cimzia® will be available in the US within the next 48 hours.
Brussels (Belgium) - April 22, 2008 - 19.30 CET
UCB announced today that the US Food and Drug Administration (FDA) has approved Cimzia® (certolizumab pegol), the first and only PEGylated anti-TNFα (Tumor Necrosis Factor alpha) antibody indicated for reducing signs and symptoms of Crohn's disease and maintaining clinical response in adult patients with moderate to severe active disease who have an inadequate response to conventional therapy.
"The approval of Cimzia® in the United States is a significant milestone for both UCB and our Cimzia® team, but especially for people suffering from Crohn's disease," said Roch Doliveux, Chief Executive Officer of UCB Group. "Cimzia® is a UCB biological innovation that will provide a monthly treatment option for patients suffering from Crohn's disease. Cimzia® will be available to doctors and Crohn's patients in the United States, which represents 70% of the world Crohn's anti-TNF market, within the next 48 hours."
The approval of Cimzia® was based on safety and efficacy data from clinical trials in more than 1 500 patients with Crohn's disease. Each pivotal study demonstrated that a statistically significant greater proportion of moderate to severe Crohn's disease patients achieved and sustained clinical response with Cimzia® for up to six months, compared to placebo. These data also showed that of the patients who were in remission after initial dosing, the majority maintained remission with no dose escalation.
Cimzia® is the first and only PEGylated anti-TNFα. Cimzia® is dosed subcutaneously every four weeks after initial dosing, making it a convenient option for people with moderate to severe Crohn's. Cimzia® has demonstrated a low incidence of injection site reactions and injection site pain in clinical trials. The most common reported adverse events in the pivotal studies were upper respiratory tract infection (cold, flu), urinary tract infection (bladder infection) and joint pain. As seen with the use of the other anti-TNFα agents, serious, but infrequent infections and malignancies have been reported.
"The clinical trials program has shown Cimzia® to be an effective subcutaneously-administered treatment, with a low rate of injection site reactions," said Stephen Hanauer, M.D., Professor of Medicine and Clinical Pharmacology at the University of Chicago. "The approval of Cimzia® provides a new option for people with Crohn's disease to achieve relief from this debilitating condition with a convenient, stable administration once every four weeks."
About Cimzia® (certolizumab pegol)
Cimzia® is the first and only PEGylated anti-TNFα (Tumor Necrosis Factor alpha). Cimzia® has a high affinity for human TNFα, selectively neutralizing the pathophysiological effects of TNFα. Over the past decade, TNFα has emerged as a major target of basic research and clinical investigation. This cytokine plays a key role in mediating pathological inflammation, and excess TNFα production has been directly implicated in a wide variety of diseases. UCB is developing Cimzia® in Crohn's Disease, RA and other autoimmune disease indications. For additional information, including safety information, please refer to the Cimzia® factsheet in the "News" section of UCB's website (http://www.ucb-group.com/).
Administered every four weeks, UCB's pegylated anti-TNFα offers new treatment option for patients with moderate to severe Crohn's disease.
Cimzia® will be available in the US within the next 48 hours.
Brussels (Belgium) - April 22, 2008 - 19.30 CET
UCB announced today that the US Food and Drug Administration (FDA) has approved Cimzia® (certolizumab pegol), the first and only PEGylated anti-TNFα (Tumor Necrosis Factor alpha) antibody indicated for reducing signs and symptoms of Crohn's disease and maintaining clinical response in adult patients with moderate to severe active disease who have an inadequate response to conventional therapy.
"The approval of Cimzia® in the United States is a significant milestone for both UCB and our Cimzia® team, but especially for people suffering from Crohn's disease," said Roch Doliveux, Chief Executive Officer of UCB Group. "Cimzia® is a UCB biological innovation that will provide a monthly treatment option for patients suffering from Crohn's disease. Cimzia® will be available to doctors and Crohn's patients in the United States, which represents 70% of the world Crohn's anti-TNF market, within the next 48 hours."
The approval of Cimzia® was based on safety and efficacy data from clinical trials in more than 1 500 patients with Crohn's disease. Each pivotal study demonstrated that a statistically significant greater proportion of moderate to severe Crohn's disease patients achieved and sustained clinical response with Cimzia® for up to six months, compared to placebo. These data also showed that of the patients who were in remission after initial dosing, the majority maintained remission with no dose escalation.
Cimzia® is the first and only PEGylated anti-TNFα. Cimzia® is dosed subcutaneously every four weeks after initial dosing, making it a convenient option for people with moderate to severe Crohn's. Cimzia® has demonstrated a low incidence of injection site reactions and injection site pain in clinical trials. The most common reported adverse events in the pivotal studies were upper respiratory tract infection (cold, flu), urinary tract infection (bladder infection) and joint pain. As seen with the use of the other anti-TNFα agents, serious, but infrequent infections and malignancies have been reported.
"The clinical trials program has shown Cimzia® to be an effective subcutaneously-administered treatment, with a low rate of injection site reactions," said Stephen Hanauer, M.D., Professor of Medicine and Clinical Pharmacology at the University of Chicago. "The approval of Cimzia® provides a new option for people with Crohn's disease to achieve relief from this debilitating condition with a convenient, stable administration once every four weeks."
About Cimzia® (certolizumab pegol)
Cimzia® is the first and only PEGylated anti-TNFα (Tumor Necrosis Factor alpha). Cimzia® has a high affinity for human TNFα, selectively neutralizing the pathophysiological effects of TNFα. Over the past decade, TNFα has emerged as a major target of basic research and clinical investigation. This cytokine plays a key role in mediating pathological inflammation, and excess TNFα production has been directly implicated in a wide variety of diseases. UCB is developing Cimzia® in Crohn's Disease, RA and other autoimmune disease indications. For additional information, including safety information, please refer to the Cimzia® factsheet in the "News" section of UCB's website (http://www.ucb-group.com/).
Surgery as part of life
So many of the stories I hear about Crohn's patients inevitably come back to a time when they had surgery. Whether it was early on in their diagnosis or later in life - it alays seems to come back to it.
My major surgery was back in January of 1999. My oldest daughter was about 6 months old. I had a resection of my small intestine and large intestine. Where my Crohn's was at, the place where the small & large intestine meets, was taken out. Unfortunately, as all Crohn's patients know - Crohn's never goes away. I was out of work for about 10 weeks, but it truely took me probably a year to fully get over the surgery. Honestly, where they made the incision in my stomach, I still have no sensation of touch for about 3 inches below the incision - which is a really freaky feeling.
I'm had some other minor stuff done - mostly surrounding fistulas, which seems to be pretty common for Crohn's patients as well. But no other surgery as major as my intestinal surgery.
So, that's my surgery story in a nutshell, I'm wondering if anyone else would care to share their surgery stories - either writing a post or commenting here. I'm sure we have a lot of people who would be interested in hearing what surgeries are going on and how everyone has dealt with them.
Until Next time...
My major surgery was back in January of 1999. My oldest daughter was about 6 months old. I had a resection of my small intestine and large intestine. Where my Crohn's was at, the place where the small & large intestine meets, was taken out. Unfortunately, as all Crohn's patients know - Crohn's never goes away. I was out of work for about 10 weeks, but it truely took me probably a year to fully get over the surgery. Honestly, where they made the incision in my stomach, I still have no sensation of touch for about 3 inches below the incision - which is a really freaky feeling.
I'm had some other minor stuff done - mostly surrounding fistulas, which seems to be pretty common for Crohn's patients as well. But no other surgery as major as my intestinal surgery.
So, that's my surgery story in a nutshell, I'm wondering if anyone else would care to share their surgery stories - either writing a post or commenting here. I'm sure we have a lot of people who would be interested in hearing what surgeries are going on and how everyone has dealt with them.
Until Next time...
Sunday, April 6, 2008
Things we think are lost
When I was in high school, I used to enjoy running. Yes, I was one of those people. I ran in raod races and ran long distance on our track team. I wasn't very good, but I enjoyed it tremendously.
Within 6 months after graduating from high school, I was showing pretty severe signs of Crohn's though I would not be diagnosed for another 2 years. I was tired all the time, with no energy to do any of the typical "college" things you would do when you go away to school. I had to give up running shortly after high school, simply because I just couldn't.
Over the last 15 years, there have been several times where I have wanted to get back to doing one of the things I loved, but I just wasn't physically able. I could run 1/4 or 1/2 mile, but that was about it. I had no stamina and could not build any because my body just wasn't ready. Until now...
I started running again back in the fall of last year. Slowly but surely I was able to run longer and farther. Then I hurt my knee of all things and had to stop for the last six weeks of the year. I decided I would start again this year as part of my New Year's resoltion. After running for the few weeks in the fall, I new I could and that my body was ready.
Fast forward from Jan. 1 to yesterday - I finished my first 100 miles of the year. This amount of time and running commitment is something that I never thought I would be able to do again in my lifetime, and honestly it was something the doctors told me I most likely would not be able to do. But here I am.
Someone asked me why running was important to me at this point in my life, I told them I am running for those with Crohn's who can't. There was a time when I could not have dreamed of doing this.
So, for those of you ready this who are early in your diagnosis, I hope that this story gives you hope & encouragement. Those things that you love but you may not be able to do now, do not give up hope that you will be able to do those things again. It may take time ( a lot of time for me ), but there is hope.
And for any of you who want to travel, but think you can't with Crohn's - click on Lizzi link in the authors section on the right. Check out where the Crohn's patient has spent the last 3 months.
Until next time...
Within 6 months after graduating from high school, I was showing pretty severe signs of Crohn's though I would not be diagnosed for another 2 years. I was tired all the time, with no energy to do any of the typical "college" things you would do when you go away to school. I had to give up running shortly after high school, simply because I just couldn't.
Over the last 15 years, there have been several times where I have wanted to get back to doing one of the things I loved, but I just wasn't physically able. I could run 1/4 or 1/2 mile, but that was about it. I had no stamina and could not build any because my body just wasn't ready. Until now...
I started running again back in the fall of last year. Slowly but surely I was able to run longer and farther. Then I hurt my knee of all things and had to stop for the last six weeks of the year. I decided I would start again this year as part of my New Year's resoltion. After running for the few weeks in the fall, I new I could and that my body was ready.
Fast forward from Jan. 1 to yesterday - I finished my first 100 miles of the year. This amount of time and running commitment is something that I never thought I would be able to do again in my lifetime, and honestly it was something the doctors told me I most likely would not be able to do. But here I am.
Someone asked me why running was important to me at this point in my life, I told them I am running for those with Crohn's who can't. There was a time when I could not have dreamed of doing this.
So, for those of you ready this who are early in your diagnosis, I hope that this story gives you hope & encouragement. Those things that you love but you may not be able to do now, do not give up hope that you will be able to do those things again. It may take time ( a lot of time for me ), but there is hope.
And for any of you who want to travel, but think you can't with Crohn's - click on Lizzi link in the authors section on the right. Check out where the Crohn's patient has spent the last 3 months.
Until next time...
Wednesday, April 2, 2008
Crohn's College Scholarship
Here's something I just read about thought I would put it out here to pass it on. Very, Very interesting. There is a college scholarship for Crohn's patients. I'm putting the link below in this post - but there is a link to the general website "Crohn's and Me" over in our list of crohn's websites.
I know there are lots of younger Crohn's patients out there & maybe something like this can help them with College. Wish I had had something like this back in the day.
http://www.crohnsandme.com/thescoop/scholarship.asp
Until next time...
I know there are lots of younger Crohn's patients out there & maybe something like this can help them with College. Wish I had had something like this back in the day.
http://www.crohnsandme.com/thescoop/scholarship.asp
Until next time...
Tuesday, April 1, 2008
Pretty Cool Story
If you ahve not visited the Crohn's Zone, it is worth checking out. The link is on the right. Pretty good sight for connecting, forums, and chats. If you get a chance & have some time to read...check it out.
I was there tonight and one of the threads in the forums takled about "the spoon theory." Didn't know what they were talking about but my curiosity was peaked. I'm going to put a link to this story at the bottom of this post. It is a great story for helping others understand what we as Crohn's patients go through daily.
FYI - I'm putting this in here as a link instead of copying and pasting because it is copyrighted. So if you happen to pass this on, please give credit where credit is due.
Click on the link here to read this story: But You Don't Look Sick
Until next time...
I was there tonight and one of the threads in the forums takled about "the spoon theory." Didn't know what they were talking about but my curiosity was peaked. I'm going to put a link to this story at the bottom of this post. It is a great story for helping others understand what we as Crohn's patients go through daily.
FYI - I'm putting this in here as a link instead of copying and pasting because it is copyrighted. So if you happen to pass this on, please give credit where credit is due.
Click on the link here to read this story: But You Don't Look Sick
Until next time...
Medications. Medications. And more Medications!!!
I thought it might be interesting to talk about all the different medications that we take as Crohn's patients. I know there is lots of different stuff out there, and what works for one of us may not work for another. But it would still be an interesting excercise to see what everyone is currently taking and how you are doing with it, what you have taken in the past that maybe didn't work and why, or is there some new stuff out there that you intend to ask your doc about trying.
Currently, I'm on 1000mg of Pentasa 4 x day, 50mg of Imuran 1 x day, and 40mg of Omeprazole 1 x day. For me, this is probably the least amount of medications I have taken since I was diagnosed 15 years ago. When I was first diagnosed, I was taking about 40 pills a day. My medication now is primary preventative maintenance medication, since my Crohn's is currently in remission.
Share with us as much info as you want about your current medication. Themore info we have, the better it is for everyone.
Currently, I'm on 1000mg of Pentasa 4 x day, 50mg of Imuran 1 x day, and 40mg of Omeprazole 1 x day. For me, this is probably the least amount of medications I have taken since I was diagnosed 15 years ago. When I was first diagnosed, I was taking about 40 pills a day. My medication now is primary preventative maintenance medication, since my Crohn's is currently in remission.
Share with us as much info as you want about your current medication. Themore info we have, the better it is for everyone.
Sunday, March 30, 2008
What to eat?
As anyone with any stomach realted issues knows, one of the biggest problems we all face is what to eat. What do we eat when we feel really good and can get away with a little more? What do we eat when we are feeling just "ok"? What do we eat when we are in the middle of an attack but we have to get wome type of nurishment? What are your go to , "when all else fails" foods?
I'd love to get some feedback from you on what and how you eat. You can share it in the comments or if you want to post something seperate, email me and I'll give you the link.
So here goes my list:
Feeling great
Fortunately, after 15 years, my Crohn's is pretty well under control. So when I'm feeling really good, I eat pretty much anything I want - even the stuff the docs tell me not to. I lean toward the spicier foods, & believe it or not, the stuff with peppers in it make it better, not worse for me.
Feeling ok
I love pasta with light sauces. The heavier sauces tend to bother me. I do my best to stay away from the greasier stuff, especially since I had my gallbladder taken out about 11 years ago. I don't go overboard on anything that is really high fiber, cause that stuff borthers me too.
Feeling bad
When it's bad I typically go for the stuff that is not really solid. I love grits, of course that is a couthern thing, so some of you may not know what they are or care for them. Cream of wheat is right there with the grits & is almost the same stuff. Jello is always good for me too.
So, that is at least a start for us - I'd love to hear about your comfort foods, because we all need some new ideas.
Until next time...
Chadwick
PS - I am editing this afterward to add one more thing. I absolutely love Coke. But since I'm trying to lose some weight, I'm abstaining for now. Here's 2 recommendations of drink I really, really like & they do not bother me, they taste good, and they actually make me feel a little better. Crystal Light Iced Tea - I drink this stuff all the time. I drink hot Peppermint Tea every night about an hour or two before bed. The warm water aids digestion, and peppermint is a natural anesthetic for your stomach. I've found that Peppermint Tea helps me to sleep a lot better.
I'd love to get some feedback from you on what and how you eat. You can share it in the comments or if you want to post something seperate, email me and I'll give you the link.
So here goes my list:
Feeling great
Fortunately, after 15 years, my Crohn's is pretty well under control. So when I'm feeling really good, I eat pretty much anything I want - even the stuff the docs tell me not to. I lean toward the spicier foods, & believe it or not, the stuff with peppers in it make it better, not worse for me.
Feeling ok
I love pasta with light sauces. The heavier sauces tend to bother me. I do my best to stay away from the greasier stuff, especially since I had my gallbladder taken out about 11 years ago. I don't go overboard on anything that is really high fiber, cause that stuff borthers me too.
Feeling bad
When it's bad I typically go for the stuff that is not really solid. I love grits, of course that is a couthern thing, so some of you may not know what they are or care for them. Cream of wheat is right there with the grits & is almost the same stuff. Jello is always good for me too.
So, that is at least a start for us - I'd love to hear about your comfort foods, because we all need some new ideas.
Until next time...
Chadwick
PS - I am editing this afterward to add one more thing. I absolutely love Coke. But since I'm trying to lose some weight, I'm abstaining for now. Here's 2 recommendations of drink I really, really like & they do not bother me, they taste good, and they actually make me feel a little better. Crystal Light Iced Tea - I drink this stuff all the time. I drink hot Peppermint Tea every night about an hour or two before bed. The warm water aids digestion, and peppermint is a natural anesthetic for your stomach. I've found that Peppermint Tea helps me to sleep a lot better.
Friday, March 28, 2008
Men's restroom on the left
I thought I would get us started with our writing, sharing something I put on my own blog about a month or so ago. I know as Crohn's patients we all have those wonderfully qwuirky, somewhat embarassing moments. This is one of mine. And I'll just warn you, if "bathroom" humor bothers you - stop reading now!!
Just to set the stage (so to speak), you have to understand that as a Crohn's patient I go to the restroom approximately 8 - 10 times per day (and yes I talking about #2 not #1). So you can kindof understand that as an insurance sales rep, I am out and about all over North Georgia, so I have to know where the decent (clean) bathrooms are for just about anywhere I'm traveling.Unfortunately, traveling around and going to the restroom in so many different McDonald's restaurants, I guess I have gotten way too used to where the restrooms are and how they are laid out and extactly where they are in the restaurant. Today I had a Crohn's moment hit & I just had to stop. I'm not going to say the name of this small city close to home, because it only has 1 McDonald's & someone might have seem me there. I get out of my car & run for the McD's door ... walking anxiously for the restrooms. I head for the back & go for the door on the left - make my way to the stall & sit down to do my business. After a moment, my thoughts went down this path - "Wow this McD's is really nice, they have 2 stalls. Normally when I go to a McD's, the guys bathroom only has 1 stall (& I inevitably end up having to wait on someone else to get done) and 1 or 2 urinals. Wait a minute - Did I see a unrinal?? Oh My - I didn't see a urinal. Did I? Oh no - I honestly don't remember. I may be in trouble!!! Could I be in the wrong restroom? I need to get done quick, just in case. Oh and I need to be quiet, cause If I am in the ladies room, I don't want them to hear me." So I get done, listen for anyone that might be out there. And then as I open the bathroom door to make my escape, I look across from the door I am exiting and see the sign that says "Men" on the door opposite me. Needless to say, the door I was exiting said "Women." But I did at least make the McD's employee, sitting just outside the restrooms, laugh heartily - because he watched me go in & come out. "Dude, you could have saved me!!"
So my lesson from today - even when you are in a hurry to go - make sure to read the signs. Oh, and just because most of the McD's put the men's restroom on the left (and if you don't believe me look the next time you are in one), doesn't mean that they are all on the left. Note to McD's - us Crohn's patients would appreciate a little more consistency in restroom placement.
I'd love to have more of you come and share your stories, whether funny or sad. I know you all don't what to have me being the only writer here. So email me at dcparson@gmail.com if you are interested is writing. I'll get you added in as an author. Blogger will only allow 100 authors at a time, so there is a finite number of writing spots available.
Until next time...
Chadwick
Just to set the stage (so to speak), you have to understand that as a Crohn's patient I go to the restroom approximately 8 - 10 times per day (and yes I talking about #2 not #1). So you can kindof understand that as an insurance sales rep, I am out and about all over North Georgia, so I have to know where the decent (clean) bathrooms are for just about anywhere I'm traveling.Unfortunately, traveling around and going to the restroom in so many different McDonald's restaurants, I guess I have gotten way too used to where the restrooms are and how they are laid out and extactly where they are in the restaurant. Today I had a Crohn's moment hit & I just had to stop. I'm not going to say the name of this small city close to home, because it only has 1 McDonald's & someone might have seem me there. I get out of my car & run for the McD's door ... walking anxiously for the restrooms. I head for the back & go for the door on the left - make my way to the stall & sit down to do my business. After a moment, my thoughts went down this path - "Wow this McD's is really nice, they have 2 stalls. Normally when I go to a McD's, the guys bathroom only has 1 stall (& I inevitably end up having to wait on someone else to get done) and 1 or 2 urinals. Wait a minute - Did I see a unrinal?? Oh My - I didn't see a urinal. Did I? Oh no - I honestly don't remember. I may be in trouble!!! Could I be in the wrong restroom? I need to get done quick, just in case. Oh and I need to be quiet, cause If I am in the ladies room, I don't want them to hear me." So I get done, listen for anyone that might be out there. And then as I open the bathroom door to make my escape, I look across from the door I am exiting and see the sign that says "Men" on the door opposite me. Needless to say, the door I was exiting said "Women." But I did at least make the McD's employee, sitting just outside the restrooms, laugh heartily - because he watched me go in & come out. "Dude, you could have saved me!!"
So my lesson from today - even when you are in a hurry to go - make sure to read the signs. Oh, and just because most of the McD's put the men's restroom on the left (and if you don't believe me look the next time you are in one), doesn't mean that they are all on the left. Note to McD's - us Crohn's patients would appreciate a little more consistency in restroom placement.
I'd love to have more of you come and share your stories, whether funny or sad. I know you all don't what to have me being the only writer here. So email me at dcparson@gmail.com if you are interested is writing. I'll get you added in as an author. Blogger will only allow 100 authors at a time, so there is a finite number of writing spots available.
Until next time...
Chadwick
Thursday, March 27, 2008
Confession of a Crohn's Patient
Brand new blog with hopefully a new outlet for all of you Crohn's patients out there like me. I thought it might be interesting to have one blog where we can all come and write about all the wonderful Crohn's related issues in our lives.
This blog is open to anyone who would like to write something. Some of us do have other blogs where we write - we will have a link to each individual authors blog, if you have one. If you are interested in writing, just email me and I will add you to the writers list and give you access.
Ideally the writers on this blog will be Crohn's patients, or their spouse, family, or someone else with a vested interest in the life of a Crohn's patient. This will be a place where we can encourage, laugh, cry, get mad, scream, shout, or just share your funny stories (you know we all have them). I'll ask that the posts be at least pg rated. We will have lots of younger readers and their families. But all of our readers have to understand the life of a Crohn's patients always leads to the toilet, so I expect that some of our posts will lead there as well. Anything deemed offensive will be removed, and the writer's permission revoked.
That said, let's have fun. Share & encourage each other.
Chadwick
This blog is open to anyone who would like to write something. Some of us do have other blogs where we write - we will have a link to each individual authors blog, if you have one. If you are interested in writing, just email me and I will add you to the writers list and give you access.
Ideally the writers on this blog will be Crohn's patients, or their spouse, family, or someone else with a vested interest in the life of a Crohn's patient. This will be a place where we can encourage, laugh, cry, get mad, scream, shout, or just share your funny stories (you know we all have them). I'll ask that the posts be at least pg rated. We will have lots of younger readers and their families. But all of our readers have to understand the life of a Crohn's patients always leads to the toilet, so I expect that some of our posts will lead there as well. Anything deemed offensive will be removed, and the writer's permission revoked.
That said, let's have fun. Share & encourage each other.
Chadwick
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