So in the ultimate good news/bad news case...I went to the doctor last week and because my CDI score was so high, I qualified for another round of 4 stem cell infusions in the Osiris Prochymal study. I begin the week after Thanksgiving. Back to smelling like an onion, the worst side effect of the treatment. I am still not sure if I got a Placebo or stem cells in round one of the Osiris Prochymal study. Keeping my fingers crossed this time. Chances are pretty good given two rounds of treatment that I at least get a 50% dose. Nothing like being a lab rat. In the meantime I continue to have bad days, and OK days. Good days are pretty rare, and lately there have been more bad days (bad cramping, night sweats, 20+ trips to the restroom, etc). I know alot of you out there deal with worse Crohn's Disease Symptoms than I have.....so I am not complaining. Keep your heads up Chronies.
Heading up to Indiana for a week to spend time with family. As always, thanks for checking out my Crohn's Disease blog. Safe travels and I will check in around Thanksgiving.
Tuesday, November 25, 2008
Thursday, November 20, 2008
Good Humira Video and Information
Unforunately I was allergic to Humira, but I have heard wonderful things about Humira helping out other Crohn's Disease Patients. Check it out if you are considering Humira.
HUMIRA:
May help people achieve and maintain remission--that is, stop flare-ups for periods of time. In a clinical trial, 3 times as many patients taking HUMIRA experienced remission at 56 weeks versus those taking a placebo.
Can reduce or help stop many Crohn's symptoms, including painful cramps, persistent diarrhea, and fatigue.
Can work fast--many people experience a significant difference in their symptoms in just 4 weeks.
For Crohn's patients, HUMIRA is taken as just one injection every other week, after your initial starting doses.
I just got an email from Abbot Labs listing some of the side effects of Humira:
Possible side effects of HUMIRA:Serious side effects, which sometimes lead to death, have happened in patients taking HUMIRA.
Serious infections. These infections include TB (tuberculosis) and infections caused by viruses, fungi, or bacteria. Your doctor will examine you for TB and perform a test to see if you have TB. If your doctor feels that you are at risk for TB, you may be treated with medicine for TB before you begin treatment with HUMIRA and during treatment with HUMIRA. Even if your TB test is negative your doctor should carefully monitor you for TB infections while you are taking HUMIRA. Patients who had a negative TB skin test before receiving HUMIRA have developed active TB. Tell your doctor if you have any of the following symptoms while taking or after taking HUMIRA: cough, low-grade fever, weight loss, or loss of body fat and muscle.
Certain types of cancer. There have been cases of certain kinds of cancer in patients taking HUMIRA or other TNF blockers. Patients with RA, especially more serious RA, may have a higher chance for getting a kind of cancer called lymphoma. Some patients receiving HUMIRA have developed types of cancer called non-melanoma skin cancer (basal cell cancer and squamous cell cancer of the skin), which are generally not life threatening if treated. Tell your doctor if you have a bump or open sore that doesn't heal.
Allergic reactions. Signs of a serious allergic reaction include skin rash, a swollen face, or trouble breathing.
Hepatitis B virus reactivation in patients that carry the virus in their blood. Tell your doctor if you have any of the following symptoms: feel unwell, poor appetite, fatigue, fever, rash or joint pain.
Nervous system problems. Signs and symptoms include: numbness or tingling, problems with your vision, weakness in your arms or legs, and dizziness.
Blood problems. Symptoms include a fever that does not go away, bruising or bleeding very easily, or looking very pale.
New heart failure or worsening heart failure you already have. Symptoms include shortness of breath or swelling of your ankles or feet, or sudden weight gain.
Immune reactions including a lupus-like syndrome. Symptoms include chest discomfort or pain that does not go away, shortness of breath, joint pain, or rash on your cheeks or arms that gets worse in the sun.
Call your doctor or get medical care right away if you develop any of the above symptoms. Your treatment with HUMIRA may be stopped.
Common side effects of HUMIRA are: injection site reactions (redness, rash, swelling, itching or bruising), upper respiratory infections (sinus infections), headaches, rash and nausea.
Tuesday, November 18, 2008
Crohn's Doesn't Make you Smarter...But a Crohn's Disease Scholarhip Can!
The Crohn's Scholarship Program is one of the largest pharmaceutical-funded scholarships currently available for Crohn's disease patients. UCB awards a total of $300,000 in one-time scholarships of up to $10,000 to people diagnosed with Crohn's disease who are entering or currently enrolled in college, or to adults of any age returning to school. To date, the company has awarded more than $700,000 to fund people's education. More information on the 2008 winners and applications for the 2009 scholarship program can be found at http://www.crohnsandme.com/.
From the Crohn's and Me site - UCB is proud to once again offer 30 one-time scholarships for up to $10,000 each in 2009. This opportunity extends to participants diagnosed with Crohn’s disease who are seeking an associate’s, undergraduate, or graduate degree, or are enrolled in a trade school educational program.
The deadline for application is February 6, 2009.
This is the fourth year UCB has had the opportunity to support those living with Crohn’s disease with the Crohn’s Scholarship Program. The Program aims to help these students continue their education and live beyond the boundaries of their disease.
UCB, Inc., is a global biopharmaceutical company committed to developing innovative treatments for inflammatory diseases such as Crohn’s disease. We’re dedicated to creating unique programs and tools to aid those with Crohn’s in fulfilling their educational ambitions.
We are proud to sponsor a scholarship program that recognizes and rewards your ability to take control of Crohn's – and not allow it to control you.
From the Crohn's and Me site - UCB is proud to once again offer 30 one-time scholarships for up to $10,000 each in 2009. This opportunity extends to participants diagnosed with Crohn’s disease who are seeking an associate’s, undergraduate, or graduate degree, or are enrolled in a trade school educational program.
The deadline for application is February 6, 2009.
This is the fourth year UCB has had the opportunity to support those living with Crohn’s disease with the Crohn’s Scholarship Program. The Program aims to help these students continue their education and live beyond the boundaries of their disease.
UCB, Inc., is a global biopharmaceutical company committed to developing innovative treatments for inflammatory diseases such as Crohn’s disease. We’re dedicated to creating unique programs and tools to aid those with Crohn’s in fulfilling their educational ambitions.
We are proud to sponsor a scholarship program that recognizes and rewards your ability to take control of Crohn's – and not allow it to control you.
New Information and Advances - Surgery and Crohn's Disease
Thousands of Americans suffering from the chronic inflammatory bowel condition known as Crohn's disease are leading longer, healthier lives due to innovative new surgeries, according to experts at NewYork-Presbyterian Hospital/Weill Cornell Medical Center. "Four out of five Crohn's patients will require some kind of surgery at some point during their lives, but these advanced, often minimally invasive techniques are sparing precious bowel tissue while improving quality of life," says senior author Dr. Fabrizio Michelassi, Lewis Atterbury Stimson Professor and chairman of the Department of Surgery at Weill Cornell Medical College and surgeon-in-chief at NewYork-Presbyterian Hospital/Weill Cornell Medical Center.
He and co-author Dr. Sharon L. Stein, assistant professor of surgery at Weill Cornell Medical College and colorectal surgeon at NewYork-Presbyterian Hospital/Weill Cornell Medical Center, wrote a "state of the science" review in a recent issue of the journal Practical Gastroenterology.As many as 500,000 people in the U.S. suffer from Crohn's disease, which triggers inflammation along the gastrointestinal tract, most typically in the lower bowel. Certain drugs can help ease symptoms, but there is no cure for this chronic illness.
Some of the more severe complications of Crohn's disease include strictures (narrowing of the bowel), abscesses, perforations, fistulas (abnormal, obstructive connections between tissues), hemorrhage and even cancers. These types of complications often require surgical intervention."In the past, this was limited to complex, invasive surgeries that required the removal of whole sections of the affected bowel. But over the past two decades, advances in surgery have changed that paradigm," Dr. Stein notes .Some of the innovations outlined in the review include:
* Laparoscopic Surgery. "Patients -- especially younger patients -- prefer laparoscopic surgery because the small incision involved leaves little external scarring, even after repeat procedures," Dr. Michelassi notes. These minimally invasive techniques also lead to fewer surgery-linked internal tissue adhesions. Laparoscopic procedures do tend to require more training on the part of surgeons, and they can take longer to perform than conventional surgery. "However, they also lead to shorter hospital stays, saving money and getting patients home faster," Dr. Stein notes.
* Strictureplasty. This technique has revolutionized bowel surgery, the experts say. "In the past, surgeons would cut out whole sections of diseased bowel, shortening the organ and thereby limiting gastrointestinal function," explains Dr. Michelassi, a world-renowned pioneer in the technique. With strictureplasty, surgeons leave the affected length of bowel in place but widen it, "much like letting out the seams on a pant-leg," he says. This spares bowel tissue while "restructuring" it, so that intestinal contents can safely pass through.
* Fistula Plugs. Fistulas can be both painful and dangerous, causing intestinal contents to diverge from the anal canal. This often leads to anal incontinence, abscesses and, most seriously, systemic infection. Certain surgeries can drain the fistula tract but for more difficult lesions a new surgical anal plug -- made from grafted porcine tissue -- is placed over the fistula. The plug triggers the growth of local fibrotic tissue that then closes off the fistula tract. "In studies, this approach has proven successful in up to half of Crohn's patients," Dr. Stein says.
These and other surgical advances are giving patients valuable new options against a relentless disease, Dr. Michelassi says. "In our work here at NewYork-Presbyterian/Weill Cornell, we're learning that we can do so much more than we thought we could -- reducing surgical risks, sparing bowel and helping patients have better outcomes," he says.Dr. Stein agrees. "As we learn more, and become more comfortable with these techniques, our success emboldens us to reach for the next generation of advances. Year by year, it's making a real difference in patients' lives."The review, "New Advances in Surgical Treatment of Crohn's Disease," can be found in the April 2008 issue of Practical Gastroenterology. This makes it alot easier for those of us living with crohn's.
He and co-author Dr. Sharon L. Stein, assistant professor of surgery at Weill Cornell Medical College and colorectal surgeon at NewYork-Presbyterian Hospital/Weill Cornell Medical Center, wrote a "state of the science" review in a recent issue of the journal Practical Gastroenterology.As many as 500,000 people in the U.S. suffer from Crohn's disease, which triggers inflammation along the gastrointestinal tract, most typically in the lower bowel. Certain drugs can help ease symptoms, but there is no cure for this chronic illness.
Some of the more severe complications of Crohn's disease include strictures (narrowing of the bowel), abscesses, perforations, fistulas (abnormal, obstructive connections between tissues), hemorrhage and even cancers. These types of complications often require surgical intervention."In the past, this was limited to complex, invasive surgeries that required the removal of whole sections of the affected bowel. But over the past two decades, advances in surgery have changed that paradigm," Dr. Stein notes .Some of the innovations outlined in the review include:
* Laparoscopic Surgery. "Patients -- especially younger patients -- prefer laparoscopic surgery because the small incision involved leaves little external scarring, even after repeat procedures," Dr. Michelassi notes. These minimally invasive techniques also lead to fewer surgery-linked internal tissue adhesions. Laparoscopic procedures do tend to require more training on the part of surgeons, and they can take longer to perform than conventional surgery. "However, they also lead to shorter hospital stays, saving money and getting patients home faster," Dr. Stein notes.
* Strictureplasty. This technique has revolutionized bowel surgery, the experts say. "In the past, surgeons would cut out whole sections of diseased bowel, shortening the organ and thereby limiting gastrointestinal function," explains Dr. Michelassi, a world-renowned pioneer in the technique. With strictureplasty, surgeons leave the affected length of bowel in place but widen it, "much like letting out the seams on a pant-leg," he says. This spares bowel tissue while "restructuring" it, so that intestinal contents can safely pass through.
* Fistula Plugs. Fistulas can be both painful and dangerous, causing intestinal contents to diverge from the anal canal. This often leads to anal incontinence, abscesses and, most seriously, systemic infection. Certain surgeries can drain the fistula tract but for more difficult lesions a new surgical anal plug -- made from grafted porcine tissue -- is placed over the fistula. The plug triggers the growth of local fibrotic tissue that then closes off the fistula tract. "In studies, this approach has proven successful in up to half of Crohn's patients," Dr. Stein says.
These and other surgical advances are giving patients valuable new options against a relentless disease, Dr. Michelassi says. "In our work here at NewYork-Presbyterian/Weill Cornell, we're learning that we can do so much more than we thought we could -- reducing surgical risks, sparing bowel and helping patients have better outcomes," he says.Dr. Stein agrees. "As we learn more, and become more comfortable with these techniques, our success emboldens us to reach for the next generation of advances. Year by year, it's making a real difference in patients' lives."The review, "New Advances in Surgical Treatment of Crohn's Disease," can be found in the April 2008 issue of Practical Gastroenterology. This makes it alot easier for those of us living with crohn's.
Thursday, November 13, 2008
Haha, a Funny Poop Story!
So if you read my post below, you will see how miserable I was with my Crohn's last night. So prior to me being sick here is what happened. Two nights ago I went to Walmart and was perusing the very wide selection of liquid antacids. Malox, Tums, etc. I chose the cheapest one and m
oved on. So last night, I am feeling like crap and decide that I need something bad. So I take a big, big swig of my trusty bottle. In fact I drank about 1/4 of it. Mucho pooping ensued. I was up every hour and it was miserable. So I get home tonight and look at bottle...yeah I bought Phillips Milk of Magnesia. So now 24 hours or so later, my stomach is feeling better. I vow to never OD on laxatives again.
oved on. So last night, I am feeling like crap and decide that I need something bad. So I take a big, big swig of my trusty bottle. In fact I drank about 1/4 of it. Mucho pooping ensued. I was up every hour and it was miserable. So I get home tonight and look at bottle...yeah I bought Phillips Milk of Magnesia. So now 24 hours or so later, my stomach is feeling better. I vow to never OD on laxatives again.My Crohn's Update - Link Between Stress and Crohn's Disease
Well, I continue to undergo major stress. I just went through 5 1/2 hours of mediation with the ex and woulden't you know following this I had a Crohn's flare up. I spent most of my night in the bathroom. I hurt so bad I can barely walk today. I woke up for work an hour early and spent it on the toilet. I made my way to work and have been in the bathroom twice in 20 minutes. Each time I dread going because a certain area is so raw that I cried the last couple of times. Yay, its going to be such a great day.
All I know is that for me personally, the link between stress and Crohn's Disease is very real. I am pretty sure this episode will last long enough to qualify me for the second round of Prochymal in the Osiris Stem Cell Infusion study. I guess thats good news???
All I know is that for me personally, the link between stress and Crohn's Disease is very real. I am pretty sure this episode will last long enough to qualify me for the second round of Prochymal in the Osiris Stem Cell Infusion study. I guess thats good news???
Study says Iron in Water Causes IBD and Crohn's Disease
Hmm, interesting...
The risk of developing inflammatory bowel disease is raised with high iron levels in drinking water. Inflammatory bowel disease (IBD) includes Crohn's disease and ulcerative colitis, which causes inflammation in the digestive tract. The cause of IBD is unknown, and symptoms include abdominal cramps, bloody diarrhea, fever and weight loss.Past studies have linked drinking water to IBD, but most of them focused on the content of different micro-organisms. Researchers from Norway studied the association between the content and quality of water and the incidence of IBD.
They studied 843 patients with suspected IBD and 762 of these were followed up for 5 years. They collected data about the quality of the water– levels of iron, aluminum, acidity (pH), colour, turbidity and coliform bacteria. Data regarding age, gender and degree of urbanization of the study group participants was also taken into account.It was found that iron content was significantly linked with the risk of IBD. For each 0.1 milligram per litre increase in iron, the relative risk for ulcerative colitis and Crohn’s disease increased by 23 percent and 25 percent respectively.
However, no association between IBD and aluminum content, colour, or turbidity in water was found. The age, gender and degree of urbanisation of participants had no impact on the association between iron content and the risk of disease.The researchers explained the reason for the findings by 2 mechanisms.
Firstly, high iron concentration works as a catalyst for oxidative stress, which causes inflammation and/or increases the rate of cell mutations. Secondly, iron content stimulates the growth of bacteria and increases the likelihood of inappropriate immune response in genetically predisposed individuals. Though the risk of developing inflammatory bowel disease, like ulcerative colitis and Crohn’s disease is raised with high iron content in water, further studies may be required to verify these results. - American Journal of Epidemiology November 2008
The risk of developing inflammatory bowel disease is raised with high iron levels in drinking water. Inflammatory bowel disease (IBD) includes Crohn's disease and ulcerative colitis, which causes inflammation in the digestive tract. The cause of IBD is unknown, and symptoms include abdominal cramps, bloody diarrhea, fever and weight loss.Past studies have linked drinking water to IBD, but most of them focused on the content of different micro-organisms. Researchers from Norway studied the association between the content and quality of water and the incidence of IBD.
They studied 843 patients with suspected IBD and 762 of these were followed up for 5 years. They collected data about the quality of the water– levels of iron, aluminum, acidity (pH), colour, turbidity and coliform bacteria. Data regarding age, gender and degree of urbanization of the study group participants was also taken into account.It was found that iron content was significantly linked with the risk of IBD. For each 0.1 milligram per litre increase in iron, the relative risk for ulcerative colitis and Crohn’s disease increased by 23 percent and 25 percent respectively.
However, no association between IBD and aluminum content, colour, or turbidity in water was found. The age, gender and degree of urbanisation of participants had no impact on the association between iron content and the risk of disease.The researchers explained the reason for the findings by 2 mechanisms.
Firstly, high iron concentration works as a catalyst for oxidative stress, which causes inflammation and/or increases the rate of cell mutations. Secondly, iron content stimulates the growth of bacteria and increases the likelihood of inappropriate immune response in genetically predisposed individuals. Though the risk of developing inflammatory bowel disease, like ulcerative colitis and Crohn’s disease is raised with high iron content in water, further studies may be required to verify these results. - American Journal of Epidemiology November 2008
Monday, November 10, 2008
Companies Pay High Price for Employees with Crohn's - UGH
Ugh, gotta love seeing this one come across Reuters. Hoping HR Directors at any company I look at going to don't see this. Ugh, this is actually why I work for the man and don't have my own company any more. It's so hard to find health insurance when you have Crohn's.
A study published today in the Journal of Occupational and Environmental Medicine found that annual medical expenditures for Crohn's disease patients are more than three times higher than those for a matched comparison group of patients. Similar results were found for people with ulcerative colitis.
The study examined both direct medical costs - inpatient and outpatient hospital care, office visits, emergency room visits, and prescription drugs - and indirect costs - absenteeism and short-term disability expenses - for patients with employer-sponsored health insurance. Annual medical expenses for Crohn's disease patients were $18,963 versus $5,300 for a matched comparison group. Ulcerative colitis patients' annual medical expenses were $15,020 versus $4,982 for the matched comparison group.
Over 1 million individuals in the United States are affected by Crohn's disease and ulcerative colitis, which are inflammatory bowel diseases. Many are first affected in their 20s and 30s, during prime working years.
In severe cases, gastrointestinal surgery can be warranted, resulting in high costs. Annual medical costs for patients with a gastrointestinal surgery were $60,147 for patients with Crohn's disease and $72,415 for patients with ulcerative colitis.
Patient samples for the study were selected from the Thomson Reuters MarketScandatabases representing the healthcare experience of almost 100 large U.S. employers. Patients who had an episode of Crohn's disease or ulcerative colitis (involving at least one inpatient admission, one emergency room visit or two outpatient visits) were matched with patients with no indication of either disease but similar in other respects (demographic, health plan, location, and health status characteristics).
The Healthcare business of Thomson Reuters conducted the research in collaboration with researchers from the University of Illinois at Chicago, Emory University and Bristol-Myers Squibb, which funded the research.
"Employers and workers should continue to develop strategies to manage chronic illnesses that can generate significant costs for healthcare services and may affect productivity," said Teresa Gibson, director of health outcomes for the Healthcare business of Thomson Reuters and lead author of the study.
In this case, absenteeism costs were not substantially higher for workers with Crohn's disease or ulcerative colitis than it was for the control group. However, patients with Crohn's disease and ulcerative colitis were somewhat less likely to participate in the workforce, with annual short term disability costs for both conditions exceeding controls by $1,000 per employee.
"These results emphasize the importance of early diagnosis and appropriate treatment to address the costs of disability and lost productivity to employees and employers," said co-author Wayne Burton, M.D., adjunct professor in the Department of Environmental and Occupational Sciences at the University of Illinois at Chicago.
A study published today in the Journal of Occupational and Environmental Medicine found that annual medical expenditures for Crohn's disease patients are more than three times higher than those for a matched comparison group of patients. Similar results were found for people with ulcerative colitis.
The study examined both direct medical costs - inpatient and outpatient hospital care, office visits, emergency room visits, and prescription drugs - and indirect costs - absenteeism and short-term disability expenses - for patients with employer-sponsored health insurance. Annual medical expenses for Crohn's disease patients were $18,963 versus $5,300 for a matched comparison group. Ulcerative colitis patients' annual medical expenses were $15,020 versus $4,982 for the matched comparison group.
Over 1 million individuals in the United States are affected by Crohn's disease and ulcerative colitis, which are inflammatory bowel diseases. Many are first affected in their 20s and 30s, during prime working years.
In severe cases, gastrointestinal surgery can be warranted, resulting in high costs. Annual medical costs for patients with a gastrointestinal surgery were $60,147 for patients with Crohn's disease and $72,415 for patients with ulcerative colitis.
Patient samples for the study were selected from the Thomson Reuters MarketScandatabases representing the healthcare experience of almost 100 large U.S. employers. Patients who had an episode of Crohn's disease or ulcerative colitis (involving at least one inpatient admission, one emergency room visit or two outpatient visits) were matched with patients with no indication of either disease but similar in other respects (demographic, health plan, location, and health status characteristics).
The Healthcare business of Thomson Reuters conducted the research in collaboration with researchers from the University of Illinois at Chicago, Emory University and Bristol-Myers Squibb, which funded the research.
"Employers and workers should continue to develop strategies to manage chronic illnesses that can generate significant costs for healthcare services and may affect productivity," said Teresa Gibson, director of health outcomes for the Healthcare business of Thomson Reuters and lead author of the study.
In this case, absenteeism costs were not substantially higher for workers with Crohn's disease or ulcerative colitis than it was for the control group. However, patients with Crohn's disease and ulcerative colitis were somewhat less likely to participate in the workforce, with annual short term disability costs for both conditions exceeding controls by $1,000 per employee.
"These results emphasize the importance of early diagnosis and appropriate treatment to address the costs of disability and lost productivity to employees and employers," said co-author Wayne Burton, M.D., adjunct professor in the Department of Environmental and Occupational Sciences at the University of Illinois at Chicago.
CElgene Receives Approval to Start Human Testing Stem Cell Therapy for Crohn's
Hi guys, more great news on the stem cell front. Biotechnology giant Celgene Corp said it received approval from U.S. health regulators to start human testing of its experimental stem-cell therapy for the treatment of Crohn's disease. Celgene said clinical development of PDA001, its therapy utilizing human placenta-derived stem cells, would start by the end of the year.
ALSO:
Genzyme Corp said it would co-develop two adult stem-cell products of Osiris Therapeutics including Prochymal, which is being tested in late-stage trials for the treatment of Crohn's disease, among other indications.
Crohn's disease is a chronic and often debilitating inflammatory disease of the colon and large intestine that affects some 500,000 people in the United States and leads to frequent hospitalizations and surgery.
Thursday, November 6, 2008
Not so NICE - UK Law Could Potentially Deny Humira and Remicade
Ugh, see below, apparently the National Institute for Health and Clinical Excellence in the UK is trying to stop funding Humira and Remicade:
A woman with a chronic digestive disease fears she could be denied treatment under government plans to control spending on drugs.Ruth Holmes, 54, of Hartree Way, Kesgrave and her son both suffer from Crohn's disease, a condition that can cause symptoms including vomiting, diarrhoea, weight loss and extreme abdominal pain. But she fears she could be denied suitable treatment under proposals by the National Institute for Health and Clinical Excellence (NICE) to stop funding drugs used to treat acute Crohn's disease.
She said: “It is an absolute outrage. There are so many people going to suffer. I do not think the government does enough for people with Crohn's disease. “It is a life-threatening disease. They have got to think of the people who are suffering and the parents who have got to watch their children go through the symptoms.“It is awful to watch and you do not know what to do for the best, and sometimes you are at your wits' end.”
The drugs Remicade and Humira are commonly used for the treatment of severe Crohn's disease, but NICE has conducted a review of the expensive drugs' cost-effectiveness. At the moment, the decision to supply a patient with the drugs is taken by local NHS Primary Care Trusts on an individual basis.
NICE is due to decide whether to make the drugs available to patients all over the country, or to stop providing it altogether, except to those who already receive it.Kristen O'Leary from NICE said it will be a balanced decision so that all patients, no matter where they live in the country, will have the same rights to the drug. Mrs Holmes, who had a bad reaction to Remicade, is currently trialling a new drug, Certolizumab Pegol, at Addenbrooke's Hospital, Cambridge, but she says when she comes off it, Humira will be the only option available to her.She said her 20-year-old son, who does not want to be named, is currently being treated with steroids but will need to transfer to Humira or Remicade at some point.
Mrs Holmes fears if the new guidelines prevent health authorities from supplying the drug to new patients, she and her son will be left with nothing to prevent their pain.She said: “If they can stop the suffering with the drugs, why would they stop funding them? The next step would probably be to go abroad because I am sure they are not holding them back in America .A charity event to raise money in aid of Crohn's disease sufferers will take place at the Waterfront on Friday.
A woman with a chronic digestive disease fears she could be denied treatment under government plans to control spending on drugs.Ruth Holmes, 54, of Hartree Way, Kesgrave and her son both suffer from Crohn's disease, a condition that can cause symptoms including vomiting, diarrhoea, weight loss and extreme abdominal pain. But she fears she could be denied suitable treatment under proposals by the National Institute for Health and Clinical Excellence (NICE) to stop funding drugs used to treat acute Crohn's disease.
She said: “It is an absolute outrage. There are so many people going to suffer. I do not think the government does enough for people with Crohn's disease. “It is a life-threatening disease. They have got to think of the people who are suffering and the parents who have got to watch their children go through the symptoms.“It is awful to watch and you do not know what to do for the best, and sometimes you are at your wits' end.”
The drugs Remicade and Humira are commonly used for the treatment of severe Crohn's disease, but NICE has conducted a review of the expensive drugs' cost-effectiveness. At the moment, the decision to supply a patient with the drugs is taken by local NHS Primary Care Trusts on an individual basis.
NICE is due to decide whether to make the drugs available to patients all over the country, or to stop providing it altogether, except to those who already receive it.Kristen O'Leary from NICE said it will be a balanced decision so that all patients, no matter where they live in the country, will have the same rights to the drug. Mrs Holmes, who had a bad reaction to Remicade, is currently trialling a new drug, Certolizumab Pegol, at Addenbrooke's Hospital, Cambridge, but she says when she comes off it, Humira will be the only option available to her.She said her 20-year-old son, who does not want to be named, is currently being treated with steroids but will need to transfer to Humira or Remicade at some point.
Mrs Holmes fears if the new guidelines prevent health authorities from supplying the drug to new patients, she and her son will be left with nothing to prevent their pain.She said: “If they can stop the suffering with the drugs, why would they stop funding them? The next step would probably be to go abroad because I am sure they are not holding them back in America .A charity event to raise money in aid of Crohn's disease sufferers will take place at the Waterfront on Friday.
Monday, November 3, 2008
Citadel Cadet with Crohn's Disease - Great Article
Great Article by Jill Coley From the Charleston Post and Courier. I love his quote in the fourth paragraph. That is pretty much they way I look at the good days and bad days with Crohn's.
Cadet James Lewis, a 20-year-old sophomore at The Citadel, doesn't define himself by Crohn's disease. But the digestive disorder can strike any time.
Crohn's disease is an inflammation of the digestive tract lining. Symptoms vary and can be embarrassing. Many suffer severe abdominal pain, weight loss and fatigue.
Cadet James Lewis carries on his life as a cadet at the Citadel even though he suffers from Crohn's disease, a disorder that causes inflammation of the digestive tract and can have embarrassing symptoms.
"It's a random disease. You do not know if you're going to have a good day or a bad day," the Columbia native said. "I always expect to have a good day, and if it's a bad one, I deal with it."
Lewis manages his Crohn's with bi-monthly shots to his stomach and daily maintenance pills. When he started at The Citadel last year, he struggled with whether to tell his peers about the disorder.
"Everyone has something different about them, something they have to deal with," he said. "It's a big part of my life, but I'd not go so far as to say it defines me." With a 3.9 GPA, the business major is on track to graduate in three years. Playing for the tennis team is a bright spot for him, he said.
In October, he was recognized in Orlando, Fla., along with 30 other winners of the UCB Crohn's Scholarship Program. The pharmaceutical company awarded 31 $10,000 scholarships.
After The Citadel, Lewis is eyeing a dual graduate degree program in law and international business administration.
Col. Mark Bebensee, associate dean of the school of business administration, said of Lewis' disorder, "You would never know. It hasn't kept him from being the brightest in the class."
At the beginning of Bebensee's microeconomics course, Lewis filled out an introduction form where he mentioned he had Crohn's. If it wasn't for that, Bebensee said he'd never know. "He's learned to cope very well," he said.
Lewis was diagnosed with Crohn's disease during his freshman year in high school.
Although the cause of Crohn's disease is not fully understood, many experts say the immune system plays a role, attacking the gastrointestinal tract.
While there is no known cure for the disease, there are treatments, including medication and surgery, that can offer relief from symptoms.
About 20 percent of people with the disorder have a relative with it, too. But in Lewis' case, he is the only one in his family, he said.
At first, Lewis suffered from cramps, but didn't think much of the disease, he said. Then the flare-ups began. A flare-up is an eruption of ulcers, leading to painful cramping.
During flare-ups, digestion is disrupted, and the body fails to extract nutrients from food. Lewis once lost 20 pounds during an episode.
Freshman year at The Citadel can be a particular challenge for someone with Crohn's. The rigor and stress might trigger flare-ups.
Lewis had about eight last year, more than twice what he averaged before starting at the military school.
Infusions of a steroid and immunosuppressive medicine can treat his flare-ups, he said, but slowing his immune system leaves him open to colds and sinus infections.
"If I was in any other school, I'd stay in bed all day. At The Citadel, I can't," Lewis said.
Crohn's disease is an inflammation of the digestive tract lining. Symptoms vary and can be embarrassing. Many suffer severe abdominal pain, weight loss and fatigue.
Cadet James Lewis carries on his life as a cadet at the Citadel even though he suffers from Crohn's disease, a disorder that causes inflammation of the digestive tract and can have embarrassing symptoms.
"It's a random disease. You do not know if you're going to have a good day or a bad day," the Columbia native said. "I always expect to have a good day, and if it's a bad one, I deal with it."
Lewis manages his Crohn's with bi-monthly shots to his stomach and daily maintenance pills. When he started at The Citadel last year, he struggled with whether to tell his peers about the disorder.
"Everyone has something different about them, something they have to deal with," he said. "It's a big part of my life, but I'd not go so far as to say it defines me." With a 3.9 GPA, the business major is on track to graduate in three years. Playing for the tennis team is a bright spot for him, he said.
In October, he was recognized in Orlando, Fla., along with 30 other winners of the UCB Crohn's Scholarship Program. The pharmaceutical company awarded 31 $10,000 scholarships.
After The Citadel, Lewis is eyeing a dual graduate degree program in law and international business administration.
Col. Mark Bebensee, associate dean of the school of business administration, said of Lewis' disorder, "You would never know. It hasn't kept him from being the brightest in the class."
At the beginning of Bebensee's microeconomics course, Lewis filled out an introduction form where he mentioned he had Crohn's. If it wasn't for that, Bebensee said he'd never know. "He's learned to cope very well," he said.
Lewis was diagnosed with Crohn's disease during his freshman year in high school.
Although the cause of Crohn's disease is not fully understood, many experts say the immune system plays a role, attacking the gastrointestinal tract.
While there is no known cure for the disease, there are treatments, including medication and surgery, that can offer relief from symptoms.
About 20 percent of people with the disorder have a relative with it, too. But in Lewis' case, he is the only one in his family, he said.
At first, Lewis suffered from cramps, but didn't think much of the disease, he said. Then the flare-ups began. A flare-up is an eruption of ulcers, leading to painful cramping.
During flare-ups, digestion is disrupted, and the body fails to extract nutrients from food. Lewis once lost 20 pounds during an episode.
Freshman year at The Citadel can be a particular challenge for someone with Crohn's. The rigor and stress might trigger flare-ups.
Lewis had about eight last year, more than twice what he averaged before starting at the military school.
Infusions of a steroid and immunosuppressive medicine can treat his flare-ups, he said, but slowing his immune system leaves him open to colds and sinus infections.
"If I was in any other school, I'd stay in bed all day. At The Citadel, I can't," Lewis said.
Thursday, October 30, 2008
Crohn's Disease and Arthritis - Anyone Else Feel my Pain?
Many Crohn's patients suffer from Arthritis as well (usually Enteropathic). It is my understanding that enteropathic arthritis usually affects a large lower extremity joint and often occurs when the bowel disease is flaring. I am an avid athlete and am constantly suffering from joint pain. It moves around from spot to spot (lots in knees and ankles), however it is ALWAYS in my hands and fingers. They are constantly sore and swollen. I am also having severe foot pain. I am experiencing my second bout where the inside foot/ankle is consistently locking while i walk, causing almost unbearable pain. I am wondering if I have a stress frature of some sort??
An excellent discussion on the topic can be found at the medhelp site.
Anyways, I have touched on this subject before, but it is a hot topic for me right now and would love to know who else has Crohn's and Arthritis and what you do to treat it.
An excellent discussion on the topic can be found at the medhelp site.
Anyways, I have touched on this subject before, but it is a hot topic for me right now and would love to know who else has Crohn's and Arthritis and what you do to treat it.
Wednesday, October 29, 2008
I am a (kinda, sorta) famous blogger!
So on Monday the web traffic to my marathon training and running blog goes through the roof. I check out my stats to see where it is coming from and it is a combo of Wall Street Journal online and direct address entry. As it turns out, my running blog was the #1 feature on their blog watch section, both in print and online. Anyways, I was pretty excited, but I really wish they had focused on this blog instead. Either way, I am excited that they did mention Crohn's Disease. "As Mr. Roy chronicles his training regimen, readers see him deal with the challenges that every dedicated runner faces, like a busy schedule and nagging injuries, as well as the added burden of Crohn's disease, a chronic inflammation of the digestive tract."
Check out the article here.
Check out the article here.
Friday, October 24, 2008
Doctor's Appointment, Vitamins and More Oh My!
Had a doctor's appointment at Dr. Shafran's office today to stay on track for the osiris prochymal stem cell study. My stomach has been pretty rough lately, lots of cramping and pain. I think I may be in for the next round of stem cell infusions.
I have a lot of trouble with vitamins. Maybe it is just me, but multi-vitamins tend to aggravate my stomach (cough, cough diarrhea!). I found a new multi-vitamin in a liquid format that seems to work really well for me. If you are looking for a good vitamin..check out Nature's Plan, Source of Life vitamins. I found them onsale for 40% off at Amazon. (click the link to the left). Anyone else have any suggestions for good vitamins for people with Crohn's disease?
I have a lot of trouble with vitamins. Maybe it is just me, but multi-vitamins tend to aggravate my stomach (cough, cough diarrhea!). I found a new multi-vitamin in a liquid format that seems to work really well for me. If you are looking for a good vitamin..check out Nature's Plan, Source of Life vitamins. I found them onsale for 40% off at Amazon. (click the link to the left). Anyone else have any suggestions for good vitamins for people with Crohn's disease?
Monday, October 20, 2008
I have Crohn's, Should I Get a Flu Shot?
This is a question that I had to ask myself this morning. Prior to researching this issue, my suspicion was that anyone taking Remicade, Imuran or immunosuppresive Crohn's drugs should avoid. Theory being that if your immune system is weakened do you really want to be injected with the flu virus. Partially correct it seems. The flu shot contains a strain that is not a live flu virus, but most doctors seem to be recommending you wit one week after your infustion. See below, but the answer seems to be yes, you can get a flu shot if you have Crohn's.
People with inflammatory bowel disease (IBD) who are taking immunosuppressive drugs fall into a high risk group. Some immunosuppressive drugs include:
Azathioprine (Imuran)
Cyclosporine (Neoral, Sandimmune)
Mercaptopurine (Purinethol, 6-MP)
Methotrexate
Prednisone
If you are taking any of these drugs, or your immune system is being suppressed by another drug, the optimum time to get vaccinated against the flu is from late October to mid-November. A flu shot takes one to two weeks to be effective.
Also, any person with IBD, even if they are not taking immunosuppressive drugs, might want to talk to a doctor about getting a flu shot. As with any chronic condition, IBD causes the body to be under stress. This makes it harder for the body to fight off both colds and the flu. After all, struggling through one major health problem is bad enough without complications from other illnesses.
Anyone who lives with a high-risk person should get the flu shot along with the high risk individual.
Anyways, I am getting my flu shot today.
People with inflammatory bowel disease (IBD) who are taking immunosuppressive drugs fall into a high risk group. Some immunosuppressive drugs include:
Azathioprine (Imuran)
Cyclosporine (Neoral, Sandimmune)
Mercaptopurine (Purinethol, 6-MP)
Methotrexate
Prednisone
If you are taking any of these drugs, or your immune system is being suppressed by another drug, the optimum time to get vaccinated against the flu is from late October to mid-November. A flu shot takes one to two weeks to be effective.
Also, any person with IBD, even if they are not taking immunosuppressive drugs, might want to talk to a doctor about getting a flu shot. As with any chronic condition, IBD causes the body to be under stress. This makes it harder for the body to fight off both colds and the flu. After all, struggling through one major health problem is bad enough without complications from other illnesses.
Anyone who lives with a high-risk person should get the flu shot along with the high risk individual.
Anyways, I am getting my flu shot today.
Thursday, October 16, 2008
Tysabri, a Crohn's Drug by Elan Corp. - ELan Closing Offices
UPDATE December 12th -
Biotechnology firm Elan Corp. said Friday it is closing its offices in New York and Tokyo during the first quarter as it realigns operations.
Elan said it will eliminate an unspecified number of positions and revise its marketing activities for Tysabri as a treatment for Crohn's disease.
Elan said it will direct additional capital toward research and development. Elan is transitioning from a traditional sales model to one based on clinical support and education, the company said in a statement.
First, about the drug: Tysabri is an antibody, a protein that triggers specific reactions from the body's immune system. Doctors think it helps some people with MS or Crohn's because of way it interacts with natural chemical markers on the surface of cells affected by the diseases. The same markers are found on the myeloma cells that Mr. Baron has, so doctors think the drug may help treat that cancer.
The issue: Dallas lawyer and Democratic Party fundraiser Fred Baron is dying of cancer -- and fighting a drug company for use of an experimental medication, according to his son, Andrew Baron.
Mr. Baron's family says it has enlisted some famous names to lobby on his behalf: Lance Armstrong, the bicyclist and cancer survivor; Bill and Hillary Rodham Clinton; Sen. John Kerry, D-Mass; and Sen. Edward Kennedy, D-Mass., who has brain cancer.
No one can accuse Biogen Idec of playing favorites. The company has been under assault by luminaries from Bill and Hillary Clinton to Lance Armstrong, who are trying to get Biogen's Tysabri drug for Fred Baron, a legal bigwig who's dying of multiple myeloma. Tysabri is in Phase I testing in multiple myeloma patients. But Baron doesn't meet the trial criteria. And Biogen has an ironclad policy of refusing the med for so-called "compassionate use."
Biogen's reasoning is rooted in Tysabri's complex biography. As you all know, the drug was hailed as a major breakthrough for multiple sclerosis patients after its first launch, but then was pulled off the market in February 2005 because of links to a potentially fatal brain infection, PML. The drug was reintroduced in 2006 under a restrictive access program. Since then, Tysabri has won a broader market, with an approval to treat Crohn's disease. It's also seen a couple of new cases of PML in Europe; those cases were added to Tysabri's labeling.
Biogen CEO Jim Mullen has held up under the assault of publicity ginned up on Baron's behalf. Calls from the likes of Armstrong, Ted Kennedy, the Clintons, John Kerry and Henry Waxman haven't swayed him. The company doesn't want to set a precedent by allowing Baron to use Tysabri, given the PML risks--and the risk to Tysabri's future should Baron experience an adverse reaction. "We want to protect access for patients who are on the drug now and rely on it," a Biogen spokeswoman told Pharmalot. "We feel like we can't make an exception in this case."
Biotechnology firm Elan Corp. said Friday it is closing its offices in New York and Tokyo during the first quarter as it realigns operations.
Elan said it will eliminate an unspecified number of positions and revise its marketing activities for Tysabri as a treatment for Crohn's disease.
Elan said it will direct additional capital toward research and development. Elan is transitioning from a traditional sales model to one based on clinical support and education, the company said in a statement.
First, about the drug: Tysabri is an antibody, a protein that triggers specific reactions from the body's immune system. Doctors think it helps some people with MS or Crohn's because of way it interacts with natural chemical markers on the surface of cells affected by the diseases. The same markers are found on the myeloma cells that Mr. Baron has, so doctors think the drug may help treat that cancer.
The issue: Dallas lawyer and Democratic Party fundraiser Fred Baron is dying of cancer -- and fighting a drug company for use of an experimental medication, according to his son, Andrew Baron.
Mr. Baron's family says it has enlisted some famous names to lobby on his behalf: Lance Armstrong, the bicyclist and cancer survivor; Bill and Hillary Rodham Clinton; Sen. John Kerry, D-Mass; and Sen. Edward Kennedy, D-Mass., who has brain cancer.
No one can accuse Biogen Idec of playing favorites. The company has been under assault by luminaries from Bill and Hillary Clinton to Lance Armstrong, who are trying to get Biogen's Tysabri drug for Fred Baron, a legal bigwig who's dying of multiple myeloma. Tysabri is in Phase I testing in multiple myeloma patients. But Baron doesn't meet the trial criteria. And Biogen has an ironclad policy of refusing the med for so-called "compassionate use."
Biogen's reasoning is rooted in Tysabri's complex biography. As you all know, the drug was hailed as a major breakthrough for multiple sclerosis patients after its first launch, but then was pulled off the market in February 2005 because of links to a potentially fatal brain infection, PML. The drug was reintroduced in 2006 under a restrictive access program. Since then, Tysabri has won a broader market, with an approval to treat Crohn's disease. It's also seen a couple of new cases of PML in Europe; those cases were added to Tysabri's labeling.
Biogen CEO Jim Mullen has held up under the assault of publicity ginned up on Baron's behalf. Calls from the likes of Armstrong, Ted Kennedy, the Clintons, John Kerry and Henry Waxman haven't swayed him. The company doesn't want to set a precedent by allowing Baron to use Tysabri, given the PML risks--and the risk to Tysabri's future should Baron experience an adverse reaction. "We want to protect access for patients who are on the drug now and rely on it," a Biogen spokeswoman told Pharmalot. "We feel like we can't make an exception in this case."
Tuesday, October 14, 2008
Crohn's and Drinking, Crohn's and Sex - Both Can make for Funny Crohn's Stories for Comedian Ben Morrison
Funny interview I saw on Healthtalk...Comedian and Crohn's Patient Ben Morrison. If you read this blog, then be sure to check out the highlights of the interview below. A link to the full transcript is at the end id you enjoy. Comedian Ben Morrison broaches touchy subjects of sex and crohn's disease, drinking and Crohn's and more. Pretty good stories and jokes on the not so funny subject of Crohn's Disease
Rick:And you mean drinking alcohol?
Mr. Morrison:Yeah. I mean, if we are being honest right here especially for dating, what do you do on a date? You go to a bar. So that's part of the equation too, as far as what people do on dates, what can and can't you do and how will that affect it. I have vivid memories of being back in New York, and a girl that I was seeing was waiting in my bedroom, and we were going to get intimate. And I remember being in the bathroom, and at that point, the obstruction had flared up again like there was a baby in my stomach. I could see it. Whenever I obstruct, I distend, like my stomach sticks out. And moving hurts because, basically 30-some odd feet of intestine above the actual colon is filled, and it ain't going anywhere, so moving hurts.
And, you know, I don't know how you make love, but I like to move around a little bit. And it's kind of difficult when, (a) you are worried about farting. When you jostle enough, it's going to happen. And, (b), you're like I don't really know if I can enjoy this much when I feel like I have ten extra pounds in me. So I remember being in the bathroom just on the can just hoping I can get something out so I could enjoy this night of sex.
Rick: When it comes to communication, Ben, do you think that men and women communicate differently and that it might be especially tough for men?
Mr. Morrison: For women, it is tough. I know for a fact it is, because guys at the very least have the benefit of punching their best friend in the arm and farting on his face, which is really fun. I love it. It's a lot of fun to do. And any guy knows that. Girls don't.
I don't even think the girls fart. I mean, I know they do. I don't really hear it much. I know it must happen. But that puts them, unfortunately, at a definite conversational disadvantage because there is no societal, accepted humorous way to even tell that, “Oh, hey, that was me. You might want to leave the room for the next ten minutes.”
So yeah, it makes it more difficult. But I swear to you if I met a girl who has Crohn's or whatever, and just was hanging out with me and just went like, “Man, you would not believe what I did to that toilet,” I think I would be in love, you know. The confidence that shows is huge, and confidence is everything in the world, at least as far as your advancement in it.
Rick: But what about that urge to immediately go?
Mr. Morrison:If that is when they cut out your ileum, then yeah, I have had it. But as far as external accoutrements, no.
But the need to go, my answer to that is pretty clear. Go to the bathroom right before walking in the bedroom. Like if you are on the bed and start kissing and clothes start coming off, say, look into her eyes and say I will be right back. And then run in the bathroom, brush your teeth, smell better than when you left, and use the bathroom so you know that whatever might be residing in your colon ain't. So if you feel like you have to go, it doesn't matter. Nothing is going to come out because there's nothing there. So, you know, worry less about that actual sensation than what would happen if that were an actual problem. Does that make sense?
The thing is, no one really minds you excusing yourself to go to the bathroom. At the risk of getting a little dirty here, they are like, “Oh, he's probably going to go to the bathroom and clean himself up a little bit.” No one minds that. Especially before sex.
Rick:Let's get a question from Washington State. “When you wanted to get intimate with a woman, have you ever had trouble getting an erection because you were so worn out from your symptoms or because you were in pain? And if so, how did you handle the situation?”
Mr. Morrison:Well, that's a tough situation. I've certainly been in that situation. Every guy has. If you haven't, you're lying. I mean if I am distended, like specifically if I'm really bloated, if I am obstructing for a couple days and my stomach begins to push out, I will steer myself away from organizing a wild night of sex. And if you are dating someone - it's not like an I need to perform right now type of thing, wait until the morning. Give yourself a good night's sleep.
And if it's a one-night stand, which I have certainly had, and as long as we are talking about it, that's a much trickier situation, and you might have to bite the bullet and just say, “Look, this isn't going to happen right now.” Can I take care of you?
Full article here: http://www2.healthtalk.com/go/crohns-disease/webcasts/crohn-s-sex-and-intimacy-comedian-ben-morrison-s-guide-for-men-and-the-people-who-love-them/transcripts/3
Rick:And you mean drinking alcohol?
Mr. Morrison:Yeah. I mean, if we are being honest right here especially for dating, what do you do on a date? You go to a bar. So that's part of the equation too, as far as what people do on dates, what can and can't you do and how will that affect it. I have vivid memories of being back in New York, and a girl that I was seeing was waiting in my bedroom, and we were going to get intimate. And I remember being in the bathroom, and at that point, the obstruction had flared up again like there was a baby in my stomach. I could see it. Whenever I obstruct, I distend, like my stomach sticks out. And moving hurts because, basically 30-some odd feet of intestine above the actual colon is filled, and it ain't going anywhere, so moving hurts.
And, you know, I don't know how you make love, but I like to move around a little bit. And it's kind of difficult when, (a) you are worried about farting. When you jostle enough, it's going to happen. And, (b), you're like I don't really know if I can enjoy this much when I feel like I have ten extra pounds in me. So I remember being in the bathroom just on the can just hoping I can get something out so I could enjoy this night of sex.
Rick: When it comes to communication, Ben, do you think that men and women communicate differently and that it might be especially tough for men?
Mr. Morrison: For women, it is tough. I know for a fact it is, because guys at the very least have the benefit of punching their best friend in the arm and farting on his face, which is really fun. I love it. It's a lot of fun to do. And any guy knows that. Girls don't.
I don't even think the girls fart. I mean, I know they do. I don't really hear it much. I know it must happen. But that puts them, unfortunately, at a definite conversational disadvantage because there is no societal, accepted humorous way to even tell that, “Oh, hey, that was me. You might want to leave the room for the next ten minutes.”
So yeah, it makes it more difficult. But I swear to you if I met a girl who has Crohn's or whatever, and just was hanging out with me and just went like, “Man, you would not believe what I did to that toilet,” I think I would be in love, you know. The confidence that shows is huge, and confidence is everything in the world, at least as far as your advancement in it.
Rick: But what about that urge to immediately go?
Mr. Morrison:If that is when they cut out your ileum, then yeah, I have had it. But as far as external accoutrements, no.
But the need to go, my answer to that is pretty clear. Go to the bathroom right before walking in the bedroom. Like if you are on the bed and start kissing and clothes start coming off, say, look into her eyes and say I will be right back. And then run in the bathroom, brush your teeth, smell better than when you left, and use the bathroom so you know that whatever might be residing in your colon ain't. So if you feel like you have to go, it doesn't matter. Nothing is going to come out because there's nothing there. So, you know, worry less about that actual sensation than what would happen if that were an actual problem. Does that make sense?
The thing is, no one really minds you excusing yourself to go to the bathroom. At the risk of getting a little dirty here, they are like, “Oh, he's probably going to go to the bathroom and clean himself up a little bit.” No one minds that. Especially before sex.
Rick:Let's get a question from Washington State. “When you wanted to get intimate with a woman, have you ever had trouble getting an erection because you were so worn out from your symptoms or because you were in pain? And if so, how did you handle the situation?”
Mr. Morrison:Well, that's a tough situation. I've certainly been in that situation. Every guy has. If you haven't, you're lying. I mean if I am distended, like specifically if I'm really bloated, if I am obstructing for a couple days and my stomach begins to push out, I will steer myself away from organizing a wild night of sex. And if you are dating someone - it's not like an I need to perform right now type of thing, wait until the morning. Give yourself a good night's sleep.
And if it's a one-night stand, which I have certainly had, and as long as we are talking about it, that's a much trickier situation, and you might have to bite the bullet and just say, “Look, this isn't going to happen right now.” Can I take care of you?
Full article here: http://www2.healthtalk.com/go/crohns-disease/webcasts/crohn-s-sex-and-intimacy-comedian-ben-morrison-s-guide-for-men-and-the-people-who-love-them/transcripts/3
Monday, October 13, 2008
Ayr United Scottish Soccer Player (David Gillies) from Battles Crohn's
Being a soccer player with Crohn's Disease myself, I can appreciate the story of David Gillies, below. It is hard enough watching playing local co-ed soccer with stomach cramps, dehydration, malnourishment, lack of iron, etc...So I have allot of respect for professional atletes with Crohn's disease. Most of my followers know that based on my man-crush on David Garrard. Other Athletes with Crohn's - Obby Khan, Tairia Flowers, Carrie Johnson, Theo Fleury, Shane Corson.
Ayr Utd star David Gillies' battle to beat pain of Crohn's Disease
By Maria Croce, Daily Record
AYR United striker David Gillies was warned he might never play football again after being diagnosed with bowel disease Crohn's. But he vowed to prove doctors wrong and now he wants to inspire other sufferers to follow their dreams rather than give in to the condition.
David, 25, and girlfriend Leanne Robbie, 23, live in Ayr with their four-year-old son Brandon.
They're expecting another child and have much to celebrate now David's fit again. But last year it was a different story with David facing the prospect of losing his footballing career just as it was about to take off.
Last June he began suffering crippling cramps in his stomach. "It felt like a really sharp pain - like a knife being twisted in my stomach," he said. "It would last a couple of seconds and take my breath away. Sometimes it would happen when I was training - but it was most days."
But he battled through his football training while doctors were baffled by his condition.
"It took forever to find out what was wrong with me," explained David.
"Doctors said it went against me because I was so fit and played football - that made it difficult to diagnose because I continued to train even though I was in pain.
"I pushed myself through. And when I went to the doctor they'd say, 'On a scale of one to 10, what's the pain like?' And I'd say, '10'. But he'd look at my notes and say, 'It can't be a10 because you're training every day'. When you play sports you just get used to playing with injuries. I was enjoying it so I kept doing it and tried to ignore the pain.
"I can remember the day it started in June. One evening I just threw up at home but I felt fine the next day and went training. "I was with Airdrie and although I trained fine, I started getting stomach cramps and could hear my stomach gurgling. I thought it was because I'd changed my diet and started eating more healthily.
"But then four weeks into the season it got worse. I went to the doctors but they told me it was a stomach bug. But the pain kept returning."
Over the next six months David went to hospital six times for investigations including a barium X-ray.
"I'd been playing with Auchinleck juniors and this was my big move to Airdrie," he explained. "Before I'd been scoring lots of goals. But I went to Airdrie and ended up on the subs' bench. I felt I was so much better than I was showing. I couldn't make excuses for feeling terrible, so I'd just try to train. But I knew I wouldn't be able to last 90 minutes playing because I felt so bad."
Then in December he underwent an endoscopy. A tiny telescope was used to look inside his intestine - where doctors discovered a blockage.
"I remember hearing the doctor saying, 'What's that?' during the procedure. They weren't expecting a blockage, but the camera couldn't get through.
"Even after that, they still didn't know what it was at first. I found out afterwards doctors had thought it could be cancer.
"I must admit when I heard their reaction to the blockage I feared the worst and assumed it must be cancer. I was told to stay at home for a week. But I'm optimistic and told myself no matter what was wrong I'd get through it.
"Then a few days later when they told me it was Chron's it was a relief in a way to finally know what was wrong and know it wasn't cancer. But I didn't know that much about the condition - although I knew there was no real cure. And I was warned I'd probably need an operation.
"My first question was whether I'd have a colostomy bag. Doctors said I might need one as a temporary measure - but luckily that didn't happen.
"Then doctors told me I wouldn't be able to play football again. They said it was hard to believe I'd ever be fit enough to play any football again.
"But I refused to believe them and vowed to play again. Looking back I can see why they thought I'd never play again.
But then I felt they didn't know what I was capable of doing.
"I thought nothing can be worse than what I've already been through. But I did wonder a few times whether it was all worth it to keep pushing myself to play.
"I'm also a qualified plumber and have my own plumbing business so at least I knew I had another job to do.
"My girlfriend Leanne would watch me in pain and question why I was putting myself through it just to play football.
"But I always wanted to be a footballer and I love playing. When I got the chance to play for Airdrie last summer it was a massive step because it was full-time. But then it took the shine off it because I started to feel really ill. I couldn't enjoy it as much as I should have."
David underwent an operation on December 23 to remove part of his intestine and got home on Christmas day.
He discovered his heart had momentarily stopped during the procedure. "They under-estimated how slow my heartbeat was because I was fit. I told the boys at football afterwards and they nicknamed me 'Death'."
He has to take special drinks, is free of pain and was back playing two months later for Airdrie.
David feels he's finally fit again and has signed for Ayr United. He jumped at the chance to talk to youngsters with Crohn's (chrones, chron's, chrones, crones).
He spoke at the Glasgow Science Centre at an event by the Catherine McEwan Foundation - set up by Scot Derek McEwan in memory of his late mother, who suffered from Crohn's.
The foundation's aim is to help young Scots with the condition and work with the charity the National Association for Colitis and Crohn's.
Inflammatory bowel diseases like Crohn's and ulcerative colitis affect about one in 400 people in the UK.
Diagnosis is usually made between the age of 10 and 40 and you have a higher chance of developing either illness if you have a close relative with the condition.
Crohn's causes inflammation of any part of the gut - the oesophagus, stomach and small and large intestine. Typical symptoms can include pain, ulcers, diarrhoea and feeling unwell.
The outlook depends on which part of the gut that's affected and the severity and frequency of symptoms. But most people will require surgery at some point.
For David the future is bright. "It doesn't hold me back at all now," he explained.
"And when I spoke to the young people it was good to hear I'd given them hope. I heard that a lot of kids think that once they've got it they can't do much - but that's really not the case. There are lots of different medications you can take to help you lead a normal life. I got this at 24 - but
I felt for the kids who were so much younger finding out they've got it.
"But gold medalist rower Steve Redgrave has got it too. He's an inspiration - I just play for Ayr United. I wanted to say to the kids with Crohn's not to give up their dreams."
Ayr Utd star David Gillies' battle to beat pain of Crohn's Disease
By Maria Croce, Daily Record
AYR United striker David Gillies was warned he might never play football again after being diagnosed with bowel disease Crohn's. But he vowed to prove doctors wrong and now he wants to inspire other sufferers to follow their dreams rather than give in to the condition.
David, 25, and girlfriend Leanne Robbie, 23, live in Ayr with their four-year-old son Brandon.
They're expecting another child and have much to celebrate now David's fit again. But last year it was a different story with David facing the prospect of losing his footballing career just as it was about to take off.
Last June he began suffering crippling cramps in his stomach. "It felt like a really sharp pain - like a knife being twisted in my stomach," he said. "It would last a couple of seconds and take my breath away. Sometimes it would happen when I was training - but it was most days."
But he battled through his football training while doctors were baffled by his condition.
"It took forever to find out what was wrong with me," explained David.
"Doctors said it went against me because I was so fit and played football - that made it difficult to diagnose because I continued to train even though I was in pain.
"I pushed myself through. And when I went to the doctor they'd say, 'On a scale of one to 10, what's the pain like?' And I'd say, '10'. But he'd look at my notes and say, 'It can't be a10 because you're training every day'. When you play sports you just get used to playing with injuries. I was enjoying it so I kept doing it and tried to ignore the pain.
"I can remember the day it started in June. One evening I just threw up at home but I felt fine the next day and went training. "I was with Airdrie and although I trained fine, I started getting stomach cramps and could hear my stomach gurgling. I thought it was because I'd changed my diet and started eating more healthily.
"But then four weeks into the season it got worse. I went to the doctors but they told me it was a stomach bug. But the pain kept returning."
Over the next six months David went to hospital six times for investigations including a barium X-ray.
"I'd been playing with Auchinleck juniors and this was my big move to Airdrie," he explained. "Before I'd been scoring lots of goals. But I went to Airdrie and ended up on the subs' bench. I felt I was so much better than I was showing. I couldn't make excuses for feeling terrible, so I'd just try to train. But I knew I wouldn't be able to last 90 minutes playing because I felt so bad."
Then in December he underwent an endoscopy. A tiny telescope was used to look inside his intestine - where doctors discovered a blockage.
"I remember hearing the doctor saying, 'What's that?' during the procedure. They weren't expecting a blockage, but the camera couldn't get through.
"Even after that, they still didn't know what it was at first. I found out afterwards doctors had thought it could be cancer.
"I must admit when I heard their reaction to the blockage I feared the worst and assumed it must be cancer. I was told to stay at home for a week. But I'm optimistic and told myself no matter what was wrong I'd get through it.
"Then a few days later when they told me it was Chron's it was a relief in a way to finally know what was wrong and know it wasn't cancer. But I didn't know that much about the condition - although I knew there was no real cure. And I was warned I'd probably need an operation.
"My first question was whether I'd have a colostomy bag. Doctors said I might need one as a temporary measure - but luckily that didn't happen.
"Then doctors told me I wouldn't be able to play football again. They said it was hard to believe I'd ever be fit enough to play any football again.
"But I refused to believe them and vowed to play again. Looking back I can see why they thought I'd never play again.
But then I felt they didn't know what I was capable of doing.
"I thought nothing can be worse than what I've already been through. But I did wonder a few times whether it was all worth it to keep pushing myself to play.
"I'm also a qualified plumber and have my own plumbing business so at least I knew I had another job to do.
"My girlfriend Leanne would watch me in pain and question why I was putting myself through it just to play football.
"But I always wanted to be a footballer and I love playing. When I got the chance to play for Airdrie last summer it was a massive step because it was full-time. But then it took the shine off it because I started to feel really ill. I couldn't enjoy it as much as I should have."
David underwent an operation on December 23 to remove part of his intestine and got home on Christmas day.
He discovered his heart had momentarily stopped during the procedure. "They under-estimated how slow my heartbeat was because I was fit. I told the boys at football afterwards and they nicknamed me 'Death'."
He has to take special drinks, is free of pain and was back playing two months later for Airdrie.
David feels he's finally fit again and has signed for Ayr United. He jumped at the chance to talk to youngsters with Crohn's (chrones, chron's, chrones, crones).
He spoke at the Glasgow Science Centre at an event by the Catherine McEwan Foundation - set up by Scot Derek McEwan in memory of his late mother, who suffered from Crohn's.
The foundation's aim is to help young Scots with the condition and work with the charity the National Association for Colitis and Crohn's.
Inflammatory bowel diseases like Crohn's and ulcerative colitis affect about one in 400 people in the UK.
Diagnosis is usually made between the age of 10 and 40 and you have a higher chance of developing either illness if you have a close relative with the condition.
Crohn's causes inflammation of any part of the gut - the oesophagus, stomach and small and large intestine. Typical symptoms can include pain, ulcers, diarrhoea and feeling unwell.
The outlook depends on which part of the gut that's affected and the severity and frequency of symptoms. But most people will require surgery at some point.
For David the future is bright. "It doesn't hold me back at all now," he explained.
"And when I spoke to the young people it was good to hear I'd given them hope. I heard that a lot of kids think that once they've got it they can't do much - but that's really not the case. There are lots of different medications you can take to help you lead a normal life. I got this at 24 - but
I felt for the kids who were so much younger finding out they've got it.
"But gold medalist rower Steve Redgrave has got it too. He's an inspiration - I just play for Ayr United. I wanted to say to the kids with Crohn's not to give up their dreams."
Wednesday, October 8, 2008
Centocor Claims Promising Results for Remicade to Treat Crohn's
Centocor has claimed promising results from a clinical study of Remicade in the treatment of Crohn's disease.
The Johnson & Johnson company said the Sonic trial has shown that more patients taking either Remicade alone or together with azathioprine experienced steroid-free remission and mucosal healing, compared to those receiving azathioprine alone.At week 26, 57 per cent of patients receiving Remicade combination therapy and 44 per cent receiving it as a monotherapy achieved steroid-free remission, the firm said, compared with a figure of 31 per cent of patients receiving azathioprine alone."
Findings from the Sonic trial have the potential to challenge the treatment protocol for Crohn's disease as these data show that introducing Remicade earlier may result in more patients achieving steroid-free remission and complete mucosal healing," suggested lead investigator Dr Jean-Frederic Colombel, professor of hepatogastroenterology at Centre Hospitalier Universitaire in Lille.
According to Dr Colombel, the results reinforced the efficacy and safety profile of the medicine. NHS Direct states that Crohn's disease is an inflammatory condition which can affect any part of the gut and affects approximately one in 1,500 people.
The Johnson & Johnson company said the Sonic trial has shown that more patients taking either Remicade alone or together with azathioprine experienced steroid-free remission and mucosal healing, compared to those receiving azathioprine alone.At week 26, 57 per cent of patients receiving Remicade combination therapy and 44 per cent receiving it as a monotherapy achieved steroid-free remission, the firm said, compared with a figure of 31 per cent of patients receiving azathioprine alone."
Findings from the Sonic trial have the potential to challenge the treatment protocol for Crohn's disease as these data show that introducing Remicade earlier may result in more patients achieving steroid-free remission and complete mucosal healing," suggested lead investigator Dr Jean-Frederic Colombel, professor of hepatogastroenterology at Centre Hospitalier Universitaire in Lille.
According to Dr Colombel, the results reinforced the efficacy and safety profile of the medicine. NHS Direct states that Crohn's disease is an inflammatory condition which can affect any part of the gut and affects approximately one in 1,500 people.
Monday, October 6, 2008
My day to gripe about Crohn's Disease (Another Crohn's Disease Sucks story)
Ok, I will make this short. Crohn's disease sucks ass!
Had a great weekend...enjoyed some good food (nothing towards the top of the foods Crohn's patients should avoid list) and drank a few beers each night. A few...not 2 or 3, but not 20 or 30. All weekend I pretty much planned on getting good sleep Sunday night so I could start the week rested. Yeah right, I got in bed at 10:30 and immideately felt pain and pressure. You guys with Crohn's know exactly what I mean. Long story short, I fell asleep sometime after 3 am, only to wake up at 7 still hurting.
So the postive take away is that I am (with help, support and a teamate) turning over a new leaf and focusing on eating better and drinking less beer! There I am done. Thanks for reading the blog. Oh, and by the way, I relaunched Roystory.com, my personal website.
Had a great weekend...enjoyed some good food (nothing towards the top of the foods Crohn's patients should avoid list) and drank a few beers each night. A few...not 2 or 3, but not 20 or 30. All weekend I pretty much planned on getting good sleep Sunday night so I could start the week rested. Yeah right, I got in bed at 10:30 and immideately felt pain and pressure. You guys with Crohn's know exactly what I mean. Long story short, I fell asleep sometime after 3 am, only to wake up at 7 still hurting.
So the postive take away is that I am (with help, support and a teamate) turning over a new leaf and focusing on eating better and drinking less beer! There I am done. Thanks for reading the blog. Oh, and by the way, I relaunched Roystory.com, my personal website.
Extreme Makeover: Home Edition - Crohn's Disease Story
I didn't get a chance to see it, but two of the people on Extreme Makeover Home Edition last night suffer from Crohn's Disease. Did anyone see it? Side note, I participated on the Extreme Makeover Home Edition project in Orlando, and actually created the website and much of the content.
When the Akers family of West Chester were selected by the show for a new home in July, there was a lot of attention on the two Akers' girls. They are living with Spinal Muscular Atrophy, a disease that causes their muscles to deteriorate.
The father Greg Akers and son Christian Akers also have health problems. They have Crohn's disease. It's a painful, unpredictable bowel disease that attacks the digestive system.
"It's like having the flu for weeks, months," said Shellie Doub, a Liberty Township woman who has two children with Crohn's disease.
"It really limits what they can do," said Shellie Doub of Liberty Township.
"If people could just extend those little kindnesses," said Doub, "to just come over and watch a video with them instead of be disappointed that they can't go out and play paintball or do the things other kids are doing."
Rachel Spradlin of the Cincinnati Area Crohn's and Colitis Foundation says 1.4 million Americans have been diagnosed with Crohn's or colitis. The two diseases are similar.
Spradlin said when the diseases are in remission you can live a normal life.
Medicine can reduce symptoms or the time between attacks but there is no cure.
She said people don't know much about Crohn's and colitis because it's not something people feel comfortable talking about.
"It's very personal," said Spradlin. "People don't go around saying they've been in the bathroom 30 times that day."
When the Akers family of West Chester were selected by the show for a new home in July, there was a lot of attention on the two Akers' girls. They are living with Spinal Muscular Atrophy, a disease that causes their muscles to deteriorate.
The father Greg Akers and son Christian Akers also have health problems. They have Crohn's disease. It's a painful, unpredictable bowel disease that attacks the digestive system.
"It's like having the flu for weeks, months," said Shellie Doub, a Liberty Township woman who has two children with Crohn's disease.
"It really limits what they can do," said Shellie Doub of Liberty Township.
"If people could just extend those little kindnesses," said Doub, "to just come over and watch a video with them instead of be disappointed that they can't go out and play paintball or do the things other kids are doing."
Rachel Spradlin of the Cincinnati Area Crohn's and Colitis Foundation says 1.4 million Americans have been diagnosed with Crohn's or colitis. The two diseases are similar.
Spradlin said when the diseases are in remission you can live a normal life.
Medicine can reduce symptoms or the time between attacks but there is no cure.
She said people don't know much about Crohn's and colitis because it's not something people feel comfortable talking about.
"It's very personal," said Spradlin. "People don't go around saying they've been in the bathroom 30 times that day."
Wednesday, October 1, 2008
Crohn's Disease Tattoo and a 9 year old's Definition of Crohn's
So my ex got a blue Crohn's disease ribbon tattoo on her foot, which has since been covered up. Thank God. But if anyone has a Crohn's Disease related tattoo I would love to see it.
Also I had to share the story of when she just asked her 9 year old what Crohn's disease was. His response: "Crohn's Disease is a disease that makes you crap yourself."
Update: I did find one on discovery.com that represents the guy's battle with Crohn's. Click the crohn's tattoo image for details.
Also I had to share the story of when she just asked her 9 year old what Crohn's disease was. His response: "Crohn's Disease is a disease that makes you crap yourself."
Update: I did find one on discovery.com that represents the guy's battle with Crohn's. Click the crohn's tattoo image for details.
Monday, September 29, 2008
Prochymal Article - News Gazette
It can make you miserable. It's expensive to treat, and it involves an area of the body nobody wants to discuss in polite conversation. But if you're one of the unlucky people to have Crohn's disease, a type of inflammatory bowel disorder, help may be in sight.
A Carle Clinic doctor sees some potential in a new drug composed of adult stem cells for the more severe cases of Crohn's, and is now enrolling patients to try it at Carle.
"Basically, this is rescue therapy," said Dr. Eugene Greenberg, a gastroenterologist running the local trial of the drug Prochymal.
Crohn's disease is a chronic, lifelong inflammation of the digestive tract lining and bowels that affects about 500,000 people in the U.S., according to the drug maker, Osiris Therapeutics.
Symptoms include severe abdominal pain, cramping and diarrhea.
People who have it in its mild form live a fairly normal life with some modifications and treatments, Greenberg said. But in its more severe form, he adds, "it's pretty miserable. It's pain, it interferes with the quality of life, it interferes with holding a job."
And at a time when millions of people can't afford health insurance, Crohn's is one pricey disease to treat. The medications per single patient run about $23,000 a year, Greenberg said.
Traditional treatments for Crohn's include steroids, immunosuppressant drugs and biologic drugs.
Prochymal is composed of stem cells that have been obtained from the bone marrow of normal, healthy adult volunteers. Studies have shown the cells don't require matching between the donor and recipient, and they may have both immunosuppressive and healing benefits for people with Crohn's, according to the drug company.
Carle, one of 55 study sites in the U.S., is entering the trial in its third phase.
Greenberg said there is reason to think Prochymal will work. And since there haven't been any serious adverse reactions in earlier phases of the trial, Prochymal appears to be safe, he said – though, he qualifies, time and wider use will tell.
Patients entering this trial will receive the drug in infusion form, and some will receive a placebo.
The third phase of the study is intended to establish the drug's safety and how long remission lasts in patients with moderate to severe symptoms of Crohn's.
To qualify, patients must have confirmed Crohn's disease of the ileum (part of the small intestine) or the colon or both, and either have not improved with or can't tolerate at least one steroid, one immunosuppressant and one biologic therapy.
Qualified patients must also be between age 18 and 70, in general good health and able to go to
Carle Clinic for up to 10 visits over three months.
Patients must not be pregnant or nursing; allergic to X-ray dye, pork or beef; or in any other research studies.
A Carle Clinic doctor sees some potential in a new drug composed of adult stem cells for the more severe cases of Crohn's, and is now enrolling patients to try it at Carle.
"Basically, this is rescue therapy," said Dr. Eugene Greenberg, a gastroenterologist running the local trial of the drug Prochymal.
Crohn's disease is a chronic, lifelong inflammation of the digestive tract lining and bowels that affects about 500,000 people in the U.S., according to the drug maker, Osiris Therapeutics.
Symptoms include severe abdominal pain, cramping and diarrhea.
People who have it in its mild form live a fairly normal life with some modifications and treatments, Greenberg said. But in its more severe form, he adds, "it's pretty miserable. It's pain, it interferes with the quality of life, it interferes with holding a job."
And at a time when millions of people can't afford health insurance, Crohn's is one pricey disease to treat. The medications per single patient run about $23,000 a year, Greenberg said.
Traditional treatments for Crohn's include steroids, immunosuppressant drugs and biologic drugs.
Prochymal is composed of stem cells that have been obtained from the bone marrow of normal, healthy adult volunteers. Studies have shown the cells don't require matching between the donor and recipient, and they may have both immunosuppressive and healing benefits for people with Crohn's, according to the drug company.
Carle, one of 55 study sites in the U.S., is entering the trial in its third phase.
Greenberg said there is reason to think Prochymal will work. And since there haven't been any serious adverse reactions in earlier phases of the trial, Prochymal appears to be safe, he said – though, he qualifies, time and wider use will tell.
Patients entering this trial will receive the drug in infusion form, and some will receive a placebo.
The third phase of the study is intended to establish the drug's safety and how long remission lasts in patients with moderate to severe symptoms of Crohn's.
To qualify, patients must have confirmed Crohn's disease of the ileum (part of the small intestine) or the colon or both, and either have not improved with or can't tolerate at least one steroid, one immunosuppressant and one biologic therapy.
Qualified patients must also be between age 18 and 70, in general good health and able to go to
Carle Clinic for up to 10 visits over three months.
Patients must not be pregnant or nursing; allergic to X-ray dye, pork or beef; or in any other research studies.
Wednesday, September 24, 2008
David Garrard Crohn's Disease Commercial
As most of my loyal blog readers know, I have written several articles about Jacksonville Jaguars quarterback David Garrard and his battle with Crohn's Disease. Below is a video highlighting David Garrard's experiences of living with Crohn's Disease. It is basically a commercial for the CCFA, Centocor and Crohnsinthezone.com which is run by livingwithcrohnsdisease.com. Click Play below to view the David Garrard Crohn's Disease Commerical:
NFL Quarterback David Garrard - Overcoming Crohn's Disease - The most amazing bloopers are here
NFL Quarterback David Garrard - Overcoming Crohn's Disease - The most amazing bloopers are here
Tuesday, September 23, 2008
Message I got from one of my Crohn's Blog readers on Myspace.
Now this blog reader shall remain nameless, but it can show you the down side of Crohn's. We all try to remain positive, but sometimes we need to vent and rant. This is classic, and painfully accurate message from one of my myspace friends (that i met through this blog). I am sure many of you can relate, so I had to post this. Parental Advisory: Explicit Lyrics
I'M SO TIRED OF MESSING WITH CROHN'S!!!!!!! NOTHING WORKS, NOT THE HUMIRA, NOR THE STEROIDS, THE OTHER PILLS, NOTHING.
CROHN'S SUCKS AND I'M TIRED OF WORRYING THAT I MAY NOT MAKE IT TO THE BATHROOM, I AM TIRED OF WONDERING "IF I EAT THIS, WILL IT MAKE ME SICK?"I'M TIRED OF MY SEVEN YEAR OLD SON WORRYING THAT I AM SICK AND EMBARRASED FOR HIM THAT HE HAS TO RUN TO THE BATHROOM WITH MY IN THE MIDDLE OF THE GROCERY STORE.
I'M SICK OF THE SHITTY INSURANCE COMPANY SUCKING EVERYTHING FROM ME BUT THE ACTUAL CROHN'S. I'M SICK OF SURPRISE BILLS FOR MEDICATION THAT DOESN'T WORK.I'M JEALOUS OF MY HUSBAND FOR BEING ABLE TO ACTUALLY FART AND NOT WORRY THAT HE MAY SHIT HIMSELF.
I AM SICK OF WORRYING THAT I MAY BE SICK DURING INTIMATE MOMENTS WITH MY HUSBAND. I'M JUST TIRED OF IT. IT ALL SUCKS BIG HAIRY BALLS. THANKS FOR LETTING ME VENT. SORRY FOR THE LANGUAGE, BUT I THINK YOU PROBABLY HAVE HEARD THE BAD WORDS BEFORE.
I KNOW YOU DON'T EVEN KNOW ME, BUT IT'S COMFORTING TO KNOW THAT THERE IS SOMEONE I CAN VENT TO THAT COMPLETELY UNDERSTANDS WHAT I'M GOING THROUGH.
I'M SO TIRED OF MESSING WITH CROHN'S!!!!!!! NOTHING WORKS, NOT THE HUMIRA, NOR THE STEROIDS, THE OTHER PILLS, NOTHING.
CROHN'S SUCKS AND I'M TIRED OF WORRYING THAT I MAY NOT MAKE IT TO THE BATHROOM, I AM TIRED OF WONDERING "IF I EAT THIS, WILL IT MAKE ME SICK?"I'M TIRED OF MY SEVEN YEAR OLD SON WORRYING THAT I AM SICK AND EMBARRASED FOR HIM THAT HE HAS TO RUN TO THE BATHROOM WITH MY IN THE MIDDLE OF THE GROCERY STORE.
I'M SICK OF THE SHITTY INSURANCE COMPANY SUCKING EVERYTHING FROM ME BUT THE ACTUAL CROHN'S. I'M SICK OF SURPRISE BILLS FOR MEDICATION THAT DOESN'T WORK.I'M JEALOUS OF MY HUSBAND FOR BEING ABLE TO ACTUALLY FART AND NOT WORRY THAT HE MAY SHIT HIMSELF.
I AM SICK OF WORRYING THAT I MAY BE SICK DURING INTIMATE MOMENTS WITH MY HUSBAND. I'M JUST TIRED OF IT. IT ALL SUCKS BIG HAIRY BALLS. THANKS FOR LETTING ME VENT. SORRY FOR THE LANGUAGE, BUT I THINK YOU PROBABLY HAVE HEARD THE BAD WORDS BEFORE.
I KNOW YOU DON'T EVEN KNOW ME, BUT IT'S COMFORTING TO KNOW THAT THERE IS SOMEONE I CAN VENT TO THAT COMPLETELY UNDERSTANDS WHAT I'M GOING THROUGH.
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