So I'll go first with the meds. I take 2-500mg capsules 4x a day. These are big blue pills (as opposed to the little blue pills) that are not for the faint at heart to take. My wife calls them horse pills. They are by far the largest medication that I have ever taken.
Here's the stuff from their website: www.pentasaus.com
What is PENTASA?
PENTASA is an anti-inflammatory drug containing mesalamine, which helps to reduce inflammation in the intestine. Specifically, PENTASA is approved for the induction of remission and for the treatment of mildly to moderately active ulcerative colitis.
PENTASA Features an Innovative Drug Delivery System
PENTASA delivers mesalamine to your small and large intestine in a special way. Here’s how it works:
Each PENTASA capsule has a gelatin-like coating. Once inside your stomach, the coating dissolves, releasing tiny semiporous spheres. These spheres help deliver the mesalamine to your small and large intestine. Water found inside your intestine flushes mesalamine out from the spheres. Once the mesalamine is released, the drug is free to help reduce the inflammation.
PENTASA 500-mg Capsules May Relieve Your Symptoms with Fewer Capsules
PENTASA helps to bring your symptoms under control. In a clinical study, PENTASA significantly reduced the severity of the most common signs and symptoms of ulcerative colitis (compared with a sugar pill), including:
Bleeding from the rectum
Stomach cramps
The urge to go to the bathroom
The number of trips to the toilet each day
PENTASA 500-mg capsules provide symptom control and relief with only 8 capsules a day. That’s half the number of capsules compared with the 250-mg formulation.
So that's a synopsis from their site. Go there if you want to read more. I did find it interesting to read that they have a Patient Assistance Program for free or low cost medication for low income families or those with no insurance.
Pros: Well, I do notice that I do not go to the bathroom as much as I did before I was taking it, which is always positive.
Cons: I can't for the life of me remember to take this medication every time I'm supposed to. Even with setting an alarm to help me remember, I still don't take it as prescribed. Maybe they'll read this and take a suggestion - get it down to taking just once a day. I would take all 8 of them in the morning, if it meant I didn't have to take them all day.
Hope that gives you some insight. Until next time...
Friday, May 30, 2008
Medication du jour
Ok, so I thought we might do each other a faover and talk a little about the medications we are currently taken or maybe have taken in the past.
To our writers: If you write something about your medication, make sure to give us the pros and cons of the medications for you personally, not the legalease that you get in with the medications. Real life, real world stories of what these medications do for you personally. Also, if the medication has a website, make sure to include a link so we can go there and check out more info.
To our readers: We want your input. So please comment about the medications we write about. Tell us your stories. And as always - if you want to write a post, shoot me an email & we'll be glad to add you in.
To our writers: If you write something about your medication, make sure to give us the pros and cons of the medications for you personally, not the legalease that you get in with the medications. Real life, real world stories of what these medications do for you personally. Also, if the medication has a website, make sure to include a link so we can go there and check out more info.
To our readers: We want your input. So please comment about the medications we write about. Tell us your stories. And as always - if you want to write a post, shoot me an email & we'll be glad to add you in.
Tuesday, May 27, 2008
Gall Bladder Disease and Crohn's
I know a lot of people with Crohn's who when end up having Gall Bladder issues (myself and my sister included). So I thought I would do a little search and see what I could find about the subject and post it here.
Here is the link to where I found this:
http://www.netdoctor.co.uk/diseases/facts/gallbladderdisease.htm
Gallbladder Disease
Reviewed by Mr Robert Diggory, consultant general surgeon
What and where is the gall bladder?
The gall bladder is a small pear-shaped organ on the underside of the liver that is used to store bile. Bile is made in the liver and is stored in the gall bladder until it is needed to help the digestion of fat.
What is gallbladder disease?
Gallbladder disease is a common condition that affects mainly women, although men can suffer too. The symptoms vary widely from discomfort to severe pain which mainly begins after food. In severe cases the patient can suffer from jaundice, nausea and fever. The most common reason for gallbladder disease is gallstones.
What are gallstones?
Gallstones are solid stones formed in the gall bladder from cholesterol, bile salts and calcium. They can vary in size from a few millimetres to a few centimetres.
What causes gallstones?
Gallstones are formed when bile contains too much cholesterol. The excess cholesterol forms crystals from which gallstones are made.
Who is at risk of developing gallstones?
Gallstones are seen in all age groups but they are rare in the young. The possibility of developing gallstones increases with age.
The following groups are considered to be at increased risk:
people who have relatives with gallstones
obese people
people with a high blood cholesterol level.
women who take drugs containing oestrogen, eg contraceptive pills
people with diseases such as chronic intestinal inflammation (Crohn's disease and ulcerative colitis).
What are the symptoms of gallstones?
Not all gallstones cause symptoms and those detected during a scan performed for other reasons do not usually require treatment. This, however, should be discussed with your doctor.
Symptoms can be extremely variable, but usually present in one of three ways.
Chronic cholecystitis (biliary colic)This is a long-term inflammation of the gall bladder and causes:
sporadic pains in the middle of the upper abdomen, or just below the ribs on the right side
pain which becomes worse over an hour and then stays the same
pain that may spread to the right shoulder or between the shoulder blades
pain that can be accompanied by nausea and vomiting and sometimes excessive wind.An attack can last from a few minutes to two to three hours before getting better. The frequency and severity of attacks is very variable.Attacks can be triggered by eating fatty foods such as chocolate, cheese or pastry.It can be difficult to distinguish the pain from other diseases such as gastric ulcer, back problems, heart pains, pneumonia and kidney stones.
Acute cholecystitis (acute inflammation or infection of the gall bladder)
This condition results in:
persistent pain and a temperature lasting more than 12 hours
pain and tenderness under the ribs on the right side
pain that is made worse by movement or coughing.Patients with acute cholecystitis may not always have gallstones, but usually do.The condition must be treated by a doctor and usually requires admission to hospital. Treatment consists of a course of antibiotics. If this is not effective, emergency surgery may be required to remove the gall bladder.
Jaundice (yellow discolouration of the skin and whites of eyes)
This is caused when there is an obstruction to the flow of bile from the liver. Jaundice is not always caused by gallstones. The symptoms are:
increasingly yellow eyes and skin
skin can become itchy.
pale bowel motions and dark urine.
The condition is often preceded by symptoms similar to those of cholecystitis. Fever and shaking chills are serious symptoms and must be treated by a doctor - they are suggestive of infection travelling through the bile duct system.
I hope you find this info useful. There was a lot more at the site so any of these links will give you more if you are looking.
Until Next Time...
Here is the link to where I found this:
http://www.netdoctor.co.uk/diseases/facts/gallbladderdisease.htm
Gallbladder Disease
Reviewed by Mr Robert Diggory, consultant general surgeon
What and where is the gall bladder?
The gall bladder is a small pear-shaped organ on the underside of the liver that is used to store bile. Bile is made in the liver and is stored in the gall bladder until it is needed to help the digestion of fat.
What is gallbladder disease?
Gallbladder disease is a common condition that affects mainly women, although men can suffer too. The symptoms vary widely from discomfort to severe pain which mainly begins after food. In severe cases the patient can suffer from jaundice, nausea and fever. The most common reason for gallbladder disease is gallstones.
What are gallstones?
Gallstones are solid stones formed in the gall bladder from cholesterol, bile salts and calcium. They can vary in size from a few millimetres to a few centimetres.
What causes gallstones?
Gallstones are formed when bile contains too much cholesterol. The excess cholesterol forms crystals from which gallstones are made.
Who is at risk of developing gallstones?
Gallstones are seen in all age groups but they are rare in the young. The possibility of developing gallstones increases with age.
The following groups are considered to be at increased risk:
people who have relatives with gallstones
obese people
people with a high blood cholesterol level.
women who take drugs containing oestrogen, eg contraceptive pills
people with diseases such as chronic intestinal inflammation (Crohn's disease and ulcerative colitis).
What are the symptoms of gallstones?
Not all gallstones cause symptoms and those detected during a scan performed for other reasons do not usually require treatment. This, however, should be discussed with your doctor.
Symptoms can be extremely variable, but usually present in one of three ways.
Chronic cholecystitis (biliary colic)This is a long-term inflammation of the gall bladder and causes:
sporadic pains in the middle of the upper abdomen, or just below the ribs on the right side
pain which becomes worse over an hour and then stays the same
pain that may spread to the right shoulder or between the shoulder blades
pain that can be accompanied by nausea and vomiting and sometimes excessive wind.An attack can last from a few minutes to two to three hours before getting better. The frequency and severity of attacks is very variable.Attacks can be triggered by eating fatty foods such as chocolate, cheese or pastry.It can be difficult to distinguish the pain from other diseases such as gastric ulcer, back problems, heart pains, pneumonia and kidney stones.
Acute cholecystitis (acute inflammation or infection of the gall bladder)
This condition results in:
persistent pain and a temperature lasting more than 12 hours
pain and tenderness under the ribs on the right side
pain that is made worse by movement or coughing.Patients with acute cholecystitis may not always have gallstones, but usually do.The condition must be treated by a doctor and usually requires admission to hospital. Treatment consists of a course of antibiotics. If this is not effective, emergency surgery may be required to remove the gall bladder.
Jaundice (yellow discolouration of the skin and whites of eyes)
This is caused when there is an obstruction to the flow of bile from the liver. Jaundice is not always caused by gallstones. The symptoms are:
increasingly yellow eyes and skin
skin can become itchy.
pale bowel motions and dark urine.
The condition is often preceded by symptoms similar to those of cholecystitis. Fever and shaking chills are serious symptoms and must be treated by a doctor - they are suggestive of infection travelling through the bile duct system.
I hope you find this info useful. There was a lot more at the site so any of these links will give you more if you are looking.
Until Next Time...
Saturday, May 17, 2008
Counted as normal
As a Crohn's patient, are there things that you accept as just part of everyday life - that you just deal with and it becomes so second nature that you really don't even give them a second thought. Things that the rest of the "healthy" population would just look at us and think we are crazy. Here's what got me to thinking:
When I went and saw my GI doc not to terribly long ago, he asked on average how many times I went to the restroom a day for a "Crohn's moment." My answer was 6-8 times and I didn't even give it a second thought. You see, when I was fir diagnosed - I was going 20-22 times a day, so 6-8 is a drastic improvement. He looked at me very puzzled and said "You know that's not normal - right?" Well I guess in my head, I do know that the average human does not go to the restroom 6-8 times a day, but I have just dealt with it for so long, I just don't think about it.
Got me to wondering what else in my life I just count as normal, but everyone else in the world would think we are crazy? Anything you can thing of that may help the rest of the world add some insight to us "crohnies" would be great.
When I went and saw my GI doc not to terribly long ago, he asked on average how many times I went to the restroom a day for a "Crohn's moment." My answer was 6-8 times and I didn't even give it a second thought. You see, when I was fir diagnosed - I was going 20-22 times a day, so 6-8 is a drastic improvement. He looked at me very puzzled and said "You know that's not normal - right?" Well I guess in my head, I do know that the average human does not go to the restroom 6-8 times a day, but I have just dealt with it for so long, I just don't think about it.
Got me to wondering what else in my life I just count as normal, but everyone else in the world would think we are crazy? Anything you can thing of that may help the rest of the world add some insight to us "crohnies" would be great.
Thursday, May 8, 2008
Crohn's Patient Robert Hill Reaches Peak of Antarctica's Tallest Mountain
Here's a pretty coolstory I found out on the net tonight. Just thought I would share. This story come from www.everestnews.com/stories2005/crohn01152006.htm. I put a link to Rob Hill's website "No Guts Know Glory" on the sidebar, as well as "I.D.E.A.S." which is an organization he helps to support. Hope this story inspires you as it did me.
- Accomplishment Marks Fifth in Seven Summits Campaign for Intestinal Disease Awareness -
Crohn's disease patient Robert (Rob) Hill has summited Vinson Massif, Antarctica's tallest mountain. Hill's team began the climb on January 12th and successfully reached the mountain's peak at 9:00 P.M. G.M.T (4:00 P.M. E.S.T.) on January 19th after eight days of erratic weather and sub-freezing temperatures.
The expedition, sponsored by ConvaTec, a world-leading manufacturer of ostomy and wound care products, marks the fifth in Hill's quest to become the first Crohn's patient and ostomate to scale the Seven Summits, the tallest peaks on the seven continents. By taking on the Seven Summits, Hill hopes to show other people living with intestinal diseases or an ostomy that they should still live their lives to the fullest.
"There was a time when I could barely climb up the stairs from the debilitating pain of Inflammatory Bowel Disease (IBD). So to think that I would ever see Antarctica, let alone climb Vinson Massif, has been a dream come true," says Hill. "Not everyone living with IBD needs to climb mountains, only to live their lives to the fullest."
Nearly 1.5 million Americans are affected by Crohn's disease and ulcerative colitis (collectively known as Inflammatory Bowel Disease), and approximately 750,000 Americans are living with an ostomy due to either IBD, colorectal cancer or other chronic bowel or bladder diseases.
Fewer than 100 people over the past 20 years have successfully scaled the Seven Summits. The feat is hard on anyone, much less someone without their colon, the organ that is primarily responsible for absorbing water and nutrients into the body.
Each climb Hill makes takes a toll on his body. Keeping up his nutrition and hydration is paramount, but even still, he typically loses up to 15 percent of his body weight on each climb.
Rob's Story -- No Guts, Know Glory!
At 23-years of age, Rob was a strong, healthy athlete who had never been sick in his life. Then, confronted with daily diarrhea and sustained, stabbing abdominal cramps, he was eventually diagnosed with Crohn's disease and ulcerative colitis.
As his condition grew worse, Hill lost 80 pounds and a year and a half later his large intestine was removed through an ostomy procedure. "When it came down to losing my colon or losing my life, it wasn't a hard decision to make," he says.
Now, 12 years later, Hill is mid-way through a five-year campaign he calls "No Guts -- Know Glory!" to become the first Crohn's patient and ostomate to climb the Seven Summits. The campaign grew from Rob's love of sport and the outdoors, pursuits he returned to with newfound dedication not long after surgery.
To date, Hill has successfully scaled five of the Seven Summits -- with Vinson Massif being the coldest climb to date (average daytime temperature of -20 degrees F). Conditions on Vinson Massif were so unpredictable that the weather would change from clear and sunny skies to blinding snowstorms in a matter of minutes. But to Hill, what separated Vinson Massif from the other Seven Summits is the complete isolation of the mountain and breathtaking views of the Antarctic landscapes.
For his inspirational efforts, Hill recently was recognized by the Crohn's & Colitis Foundation of America (CCFA) and ConvaTec with an honorary award from the Great Comebacks(R) Program, which, for more than twenty years, has given special recognition to those whose life stories inspire people living with an ostomy.
"I know from experience that Crohn's and colitis can be debilitating and make you feel very inhibited -- physically and emotionally," says Hill. "If you are living with these diseases or going through surgery it's important to know that you can get your life back -- you shouldn't let it define you."
Today, Rob continues to break down barriers for people living with intestinal diseases, letting them know that "it's okay to talk about these conditions and not something to hide behind." This year, Rob will be traveling to CCFA affiliates nationwide, speaking to patient groups about his own experiences and encouraging people to get out and conquer their own personal summits.
Small Steps, Giant Strides Toward IBD Awareness
Hill began his No Guts -- Know Glory! quest in 2002 and has now scaled five of the Seven Summits:
* June 2002, Mt. Elbrus, 18,481 feet (5,633 m), Russia/Georgia, Europe
* October 2003, Mt. Kilimanjaro, 19,339 feet (5,963 m), Tanzania, Africa
* January 2004, Aconcagua, 22,840 foot (6,962 m), Argentina, South America
* June 2005, Denali/Mt. McKinley, 20,320 feet (5,895 m), Alaska, U.S.A., North America
* January 2006, Vinson Massif, 16,067 feet (4,897 m), Antarctica.
- Accomplishment Marks Fifth in Seven Summits Campaign for Intestinal Disease Awareness -
Crohn's disease patient Robert (Rob) Hill has summited Vinson Massif, Antarctica's tallest mountain. Hill's team began the climb on January 12th and successfully reached the mountain's peak at 9:00 P.M. G.M.T (4:00 P.M. E.S.T.) on January 19th after eight days of erratic weather and sub-freezing temperatures.
The expedition, sponsored by ConvaTec, a world-leading manufacturer of ostomy and wound care products, marks the fifth in Hill's quest to become the first Crohn's patient and ostomate to scale the Seven Summits, the tallest peaks on the seven continents. By taking on the Seven Summits, Hill hopes to show other people living with intestinal diseases or an ostomy that they should still live their lives to the fullest.
"There was a time when I could barely climb up the stairs from the debilitating pain of Inflammatory Bowel Disease (IBD). So to think that I would ever see Antarctica, let alone climb Vinson Massif, has been a dream come true," says Hill. "Not everyone living with IBD needs to climb mountains, only to live their lives to the fullest."
Nearly 1.5 million Americans are affected by Crohn's disease and ulcerative colitis (collectively known as Inflammatory Bowel Disease), and approximately 750,000 Americans are living with an ostomy due to either IBD, colorectal cancer or other chronic bowel or bladder diseases.
Fewer than 100 people over the past 20 years have successfully scaled the Seven Summits. The feat is hard on anyone, much less someone without their colon, the organ that is primarily responsible for absorbing water and nutrients into the body.
Each climb Hill makes takes a toll on his body. Keeping up his nutrition and hydration is paramount, but even still, he typically loses up to 15 percent of his body weight on each climb.
Rob's Story -- No Guts, Know Glory!
At 23-years of age, Rob was a strong, healthy athlete who had never been sick in his life. Then, confronted with daily diarrhea and sustained, stabbing abdominal cramps, he was eventually diagnosed with Crohn's disease and ulcerative colitis.
As his condition grew worse, Hill lost 80 pounds and a year and a half later his large intestine was removed through an ostomy procedure. "When it came down to losing my colon or losing my life, it wasn't a hard decision to make," he says.
Now, 12 years later, Hill is mid-way through a five-year campaign he calls "No Guts -- Know Glory!" to become the first Crohn's patient and ostomate to climb the Seven Summits. The campaign grew from Rob's love of sport and the outdoors, pursuits he returned to with newfound dedication not long after surgery.
To date, Hill has successfully scaled five of the Seven Summits -- with Vinson Massif being the coldest climb to date (average daytime temperature of -20 degrees F). Conditions on Vinson Massif were so unpredictable that the weather would change from clear and sunny skies to blinding snowstorms in a matter of minutes. But to Hill, what separated Vinson Massif from the other Seven Summits is the complete isolation of the mountain and breathtaking views of the Antarctic landscapes.
For his inspirational efforts, Hill recently was recognized by the Crohn's & Colitis Foundation of America (CCFA) and ConvaTec with an honorary award from the Great Comebacks(R) Program, which, for more than twenty years, has given special recognition to those whose life stories inspire people living with an ostomy.
"I know from experience that Crohn's and colitis can be debilitating and make you feel very inhibited -- physically and emotionally," says Hill. "If you are living with these diseases or going through surgery it's important to know that you can get your life back -- you shouldn't let it define you."
Today, Rob continues to break down barriers for people living with intestinal diseases, letting them know that "it's okay to talk about these conditions and not something to hide behind." This year, Rob will be traveling to CCFA affiliates nationwide, speaking to patient groups about his own experiences and encouraging people to get out and conquer their own personal summits.
Small Steps, Giant Strides Toward IBD Awareness
Hill began his No Guts -- Know Glory! quest in 2002 and has now scaled five of the Seven Summits:
* June 2002, Mt. Elbrus, 18,481 feet (5,633 m), Russia/Georgia, Europe
* October 2003, Mt. Kilimanjaro, 19,339 feet (5,963 m), Tanzania, Africa
* January 2004, Aconcagua, 22,840 foot (6,962 m), Argentina, South America
* June 2005, Denali/Mt. McKinley, 20,320 feet (5,895 m), Alaska, U.S.A., North America
* January 2006, Vinson Massif, 16,067 feet (4,897 m), Antarctica.
Wednesday, May 7, 2008
My Surgeries
Hi again, I thought I would add to Chad's post about surgery.
I don't know if surgery is inevitable in Crohn's, as I think it depends on how early a person is diagnosed and then treated, and how they then respond to that treatment. I do believe however that some consultants and surgeons are a bit too “knife-happy” and that they can sometimes resort to surgery when really they could have hung off a bit and been a bit more patient. However, it is always difficult to tell. Maybe these “knife-happy” surgeons just truly believe they are doing their best for the patient. Who knows? But whatever their reasons for putting someone forward for surgery, it's still frightening to the person who is about to undergo the dreaded knife.
I've now had 6 major ops, including an ileostomy reversal. When I was 14 I had my first big op, and unfortunately by then my insides were in such a state that I had 11 long and very narrow strictures (permanent scarring of the intestines), and apparently the surgeons found it hard to decide which ones should stay and which ones should come out, as they didn't want to leave me with hardly any small bowel, being so young. However, they managed to perform stricturoplasties on the remaining strictures – which kind of stretches them. I don't know whether you know that having Crohn's in the small intestine can be tricky as you just cannot survive without it as it's where all the nutrients are absorbed into the bloodstream. There are cases of people having had so much removed of their small intestine that they now have to be fed intravenously through a vein in their chest – called TPN (total parental nutrition). I expect you can imagine, that's not really something anyone would willingly choose to have, but some people have no choice. I'm hoping that it's something I will never have to face, but at the same time I have to be realistic and realise that apparently I don't have a great deal of small bowel left. I also try and take comfort in the few people I know on Crohns Zone who are on TPN, as they are such amazing, strong and admirable people and they just get on with their lives despite all they have to deal with.
My next ops were at the end of 2003 and beginning of 2004. I say “ops” because I ended up in emergency surgery twice, following a small bowel resection in the terminal ileum that went rather wrong. I basically ended up with internal bleeding after the first scheduled op, and had to be rushed back to surgery to be patched up, only to end up being rushed back again when they discovered I was bleeding and leaking again and had widespread infection. I also lost my ileocaecal valve which apparently is the reason why I will have the dreaded D forever as the valve helps to regulate how fast the waste moves into the large bowel. By this point I was in the High Dependency Unit, literally fighting for my life. I had all sorts of complications on top – pneumonia, collapsed lung, a bed sore, infection, and a severe spinal fluid leak from an epidural which fell out of my spine. I had to be stitched up again to try and prevent more leaking, but by that time I was in totally agony in my head as it felt like my brain was being crushed. The docs were wondering whether to transfer me to a special spinal unit, but instead I think they got their advice on the phone and dealt with me there so as not to move me.
After the third op, I woke up with an ileostomy bag attached to me. It had been decided that as the two ends of my bowel were too weak and would not join together, that they should have a rest and be brought out onto the surface in a double-barrelled stoma. I was not expecting to have a bag and so it was rather a shock (although I was so ill I didn't have the energy to worry) and in retrospect I'm so glad they did it, as I believe it saved my life. I know the docs and surgeons were really worried about me as they were always popping in to check on me. I know they weren't sure that I would survive so when I did eventually pull through they were genuinely happy for me. They were a super team – all of the people involved in my care that horrendous time, and I know just how lucky I am to be alive today. I don't think anyone could quite believe it when I finally walked out of the hospital, rather doddery on my feet as I had lost so much weight and I'd had to have intensive physiotherapy to help me walk again. Boy did it feel good to be walking though after being flat on my back for so long!
Learning to cope with an ileostomy was rather difficult, as I kept leaking everywhere which resulted in nasty sores, rather like acid burns as the waste that comes out at first is very acidic, and I had to keep seeking advice from the stoma nurses to try and find the right appliance for me. One of the major problems for me was that I am a rather small build and therefore had a small tum/surface area, and my stoma nurse said I could do with paediatric stoma bags etc, which would have fitted perfectly on my small tum, but the baseplates would not have fitted the hole of my stoma. Gradually though I started to get used to it, even though it was very tough at times. I think the worst thing for me was adjusting to my new body image and also worrying if anyone could tell that I had a stoma. I felt I couldn't wear the same clothes that I had worn before and so tried to hide behind baggier tops etc. My stoma nurse said that unfortunately my stoma wasn't sited in the best place for me to wear the clothes I liked, but that obviously as it had been an emergency it was difficult for them and they did their best. If I'd had it for longer then perhaps I would have had an option to re-site it lower, but 6 months later I had the reversal operation. That was quite a relief!
In 2006 I had my last op. They managed to form a stricturoplasty I think, so as not to lose any more precious bowel. I had a lot of wound complications following that as my wound literally burst open whilst in the hospital shower. I think the whole scene must have resembled something out a psycho film with blood everywhere. I had such a deep wound that it had to be packed daily with seaweed stuff, and when I eventually went home I had daily home visits from the district nurses. It took months and months to heal but at last it closed up and I was so pleased to be allowed a bath!
I'm hoping that will have been my last ever op, but you can never tell what's going to happen round the corner. I'm just trying to remain positive that at the moment I am enjoying my life as full as I can, and am savouring every precious moment of it. Wishing you all well, Ruth x
Sunday, May 4, 2008
Weighty Issues.
In answer to Chad's comment on my recent blog post re weight gain whilst on steroids.
I forgot that 'Statesiders' describe their weight in pounds only, so clarification is needed when using the British term "Stones". My weight is currently 12 Stones exactly (written 12st). A stone is the UK Imperial Measurement for weight and is made up of fourteen pounds - so my weight is 168 pounds (168lbs) (12 x 14lbs).
It's a silly measurement in the same way that the old British currency was silly (240 pennies in a Pound (£)) but still widely used, although we should now have adopted the European standard of Kilogrammes I suppose, but I haven't got a clue what a pound or a stone equates to in Kilogrammes. (How anti-European Union of me!!)
Gary
I forgot that 'Statesiders' describe their weight in pounds only, so clarification is needed when using the British term "Stones". My weight is currently 12 Stones exactly (written 12st). A stone is the UK Imperial Measurement for weight and is made up of fourteen pounds - so my weight is 168 pounds (168lbs) (12 x 14lbs).
It's a silly measurement in the same way that the old British currency was silly (240 pennies in a Pound (£)) but still widely used, although we should now have adopted the European standard of Kilogrammes I suppose, but I haven't got a clue what a pound or a stone equates to in Kilogrammes. (How anti-European Union of me!!)
Gary
Friday, May 2, 2008
How do you remember???
As Crohn's patients, we all inevitably take a lot of medication. I remember when I was first diagnosed I had to take medication on an empty stomach when I woke up, then with breakfast, the on an empty stomach after beakfast, empty stomach before lunch... on and on it went.
Fortunately, now most of the medication I take is first thing in the morning, with or without food (my preference). But I take Pentasa 4 times a day. So I have to spread it out even through the day. The trick for me is remembering to take it each and every time. So I have an alarm set on my watch for 4 different times during the day to remind me to take my medicine. Most of the time I'm pretty good about taking it when the alarm goes off, but there are times when I just don't feel like it. It get so sick and tired of taking medications.
Luckily for me, my youngest daughter has also become part of my alarm system. She knows now that my alarm is set to remind me to take my medicine. So every time my alarm goes off, I hear this sweet little voice saying "Medicine time daddy." Who can resist? Not me.
So here is my question - how do you remember to take ALL of your medicine EVERY day? Please do share.
Until next time...
Fortunately, now most of the medication I take is first thing in the morning, with or without food (my preference). But I take Pentasa 4 times a day. So I have to spread it out even through the day. The trick for me is remembering to take it each and every time. So I have an alarm set on my watch for 4 different times during the day to remind me to take my medicine. Most of the time I'm pretty good about taking it when the alarm goes off, but there are times when I just don't feel like it. It get so sick and tired of taking medications.
Luckily for me, my youngest daughter has also become part of my alarm system. She knows now that my alarm is set to remind me to take my medicine. So every time my alarm goes off, I hear this sweet little voice saying "Medicine time daddy." Who can resist? Not me.
So here is my question - how do you remember to take ALL of your medicine EVERY day? Please do share.
Until next time...
Thursday, May 1, 2008
Cimzia® Approved in the US for the Treatment of Moderate to Severe Crohn's Disease
Found this on the web tonight - thought I would pass it along. It came from the website - http://www.ucb-group.com/media_centre/3384.asp
Administered every four weeks, UCB's pegylated anti-TNFα offers new treatment option for patients with moderate to severe Crohn's disease.
Cimzia® will be available in the US within the next 48 hours.
Brussels (Belgium) - April 22, 2008 - 19.30 CET
UCB announced today that the US Food and Drug Administration (FDA) has approved Cimzia® (certolizumab pegol), the first and only PEGylated anti-TNFα (Tumor Necrosis Factor alpha) antibody indicated for reducing signs and symptoms of Crohn's disease and maintaining clinical response in adult patients with moderate to severe active disease who have an inadequate response to conventional therapy.
"The approval of Cimzia® in the United States is a significant milestone for both UCB and our Cimzia® team, but especially for people suffering from Crohn's disease," said Roch Doliveux, Chief Executive Officer of UCB Group. "Cimzia® is a UCB biological innovation that will provide a monthly treatment option for patients suffering from Crohn's disease. Cimzia® will be available to doctors and Crohn's patients in the United States, which represents 70% of the world Crohn's anti-TNF market, within the next 48 hours."
The approval of Cimzia® was based on safety and efficacy data from clinical trials in more than 1 500 patients with Crohn's disease. Each pivotal study demonstrated that a statistically significant greater proportion of moderate to severe Crohn's disease patients achieved and sustained clinical response with Cimzia® for up to six months, compared to placebo. These data also showed that of the patients who were in remission after initial dosing, the majority maintained remission with no dose escalation.
Cimzia® is the first and only PEGylated anti-TNFα. Cimzia® is dosed subcutaneously every four weeks after initial dosing, making it a convenient option for people with moderate to severe Crohn's. Cimzia® has demonstrated a low incidence of injection site reactions and injection site pain in clinical trials. The most common reported adverse events in the pivotal studies were upper respiratory tract infection (cold, flu), urinary tract infection (bladder infection) and joint pain. As seen with the use of the other anti-TNFα agents, serious, but infrequent infections and malignancies have been reported.
"The clinical trials program has shown Cimzia® to be an effective subcutaneously-administered treatment, with a low rate of injection site reactions," said Stephen Hanauer, M.D., Professor of Medicine and Clinical Pharmacology at the University of Chicago. "The approval of Cimzia® provides a new option for people with Crohn's disease to achieve relief from this debilitating condition with a convenient, stable administration once every four weeks."
About Cimzia® (certolizumab pegol)
Cimzia® is the first and only PEGylated anti-TNFα (Tumor Necrosis Factor alpha). Cimzia® has a high affinity for human TNFα, selectively neutralizing the pathophysiological effects of TNFα. Over the past decade, TNFα has emerged as a major target of basic research and clinical investigation. This cytokine plays a key role in mediating pathological inflammation, and excess TNFα production has been directly implicated in a wide variety of diseases. UCB is developing Cimzia® in Crohn's Disease, RA and other autoimmune disease indications. For additional information, including safety information, please refer to the Cimzia® factsheet in the "News" section of UCB's website (http://www.ucb-group.com/).
Administered every four weeks, UCB's pegylated anti-TNFα offers new treatment option for patients with moderate to severe Crohn's disease.
Cimzia® will be available in the US within the next 48 hours.
Brussels (Belgium) - April 22, 2008 - 19.30 CET
UCB announced today that the US Food and Drug Administration (FDA) has approved Cimzia® (certolizumab pegol), the first and only PEGylated anti-TNFα (Tumor Necrosis Factor alpha) antibody indicated for reducing signs and symptoms of Crohn's disease and maintaining clinical response in adult patients with moderate to severe active disease who have an inadequate response to conventional therapy.
"The approval of Cimzia® in the United States is a significant milestone for both UCB and our Cimzia® team, but especially for people suffering from Crohn's disease," said Roch Doliveux, Chief Executive Officer of UCB Group. "Cimzia® is a UCB biological innovation that will provide a monthly treatment option for patients suffering from Crohn's disease. Cimzia® will be available to doctors and Crohn's patients in the United States, which represents 70% of the world Crohn's anti-TNF market, within the next 48 hours."
The approval of Cimzia® was based on safety and efficacy data from clinical trials in more than 1 500 patients with Crohn's disease. Each pivotal study demonstrated that a statistically significant greater proportion of moderate to severe Crohn's disease patients achieved and sustained clinical response with Cimzia® for up to six months, compared to placebo. These data also showed that of the patients who were in remission after initial dosing, the majority maintained remission with no dose escalation.
Cimzia® is the first and only PEGylated anti-TNFα. Cimzia® is dosed subcutaneously every four weeks after initial dosing, making it a convenient option for people with moderate to severe Crohn's. Cimzia® has demonstrated a low incidence of injection site reactions and injection site pain in clinical trials. The most common reported adverse events in the pivotal studies were upper respiratory tract infection (cold, flu), urinary tract infection (bladder infection) and joint pain. As seen with the use of the other anti-TNFα agents, serious, but infrequent infections and malignancies have been reported.
"The clinical trials program has shown Cimzia® to be an effective subcutaneously-administered treatment, with a low rate of injection site reactions," said Stephen Hanauer, M.D., Professor of Medicine and Clinical Pharmacology at the University of Chicago. "The approval of Cimzia® provides a new option for people with Crohn's disease to achieve relief from this debilitating condition with a convenient, stable administration once every four weeks."
About Cimzia® (certolizumab pegol)
Cimzia® is the first and only PEGylated anti-TNFα (Tumor Necrosis Factor alpha). Cimzia® has a high affinity for human TNFα, selectively neutralizing the pathophysiological effects of TNFα. Over the past decade, TNFα has emerged as a major target of basic research and clinical investigation. This cytokine plays a key role in mediating pathological inflammation, and excess TNFα production has been directly implicated in a wide variety of diseases. UCB is developing Cimzia® in Crohn's Disease, RA and other autoimmune disease indications. For additional information, including safety information, please refer to the Cimzia® factsheet in the "News" section of UCB's website (http://www.ucb-group.com/).
Surgery as part of life
So many of the stories I hear about Crohn's patients inevitably come back to a time when they had surgery. Whether it was early on in their diagnosis or later in life - it alays seems to come back to it.
My major surgery was back in January of 1999. My oldest daughter was about 6 months old. I had a resection of my small intestine and large intestine. Where my Crohn's was at, the place where the small & large intestine meets, was taken out. Unfortunately, as all Crohn's patients know - Crohn's never goes away. I was out of work for about 10 weeks, but it truely took me probably a year to fully get over the surgery. Honestly, where they made the incision in my stomach, I still have no sensation of touch for about 3 inches below the incision - which is a really freaky feeling.
I'm had some other minor stuff done - mostly surrounding fistulas, which seems to be pretty common for Crohn's patients as well. But no other surgery as major as my intestinal surgery.
So, that's my surgery story in a nutshell, I'm wondering if anyone else would care to share their surgery stories - either writing a post or commenting here. I'm sure we have a lot of people who would be interested in hearing what surgeries are going on and how everyone has dealt with them.
Until Next time...
My major surgery was back in January of 1999. My oldest daughter was about 6 months old. I had a resection of my small intestine and large intestine. Where my Crohn's was at, the place where the small & large intestine meets, was taken out. Unfortunately, as all Crohn's patients know - Crohn's never goes away. I was out of work for about 10 weeks, but it truely took me probably a year to fully get over the surgery. Honestly, where they made the incision in my stomach, I still have no sensation of touch for about 3 inches below the incision - which is a really freaky feeling.
I'm had some other minor stuff done - mostly surrounding fistulas, which seems to be pretty common for Crohn's patients as well. But no other surgery as major as my intestinal surgery.
So, that's my surgery story in a nutshell, I'm wondering if anyone else would care to share their surgery stories - either writing a post or commenting here. I'm sure we have a lot of people who would be interested in hearing what surgeries are going on and how everyone has dealt with them.
Until Next time...
A big warm hello!
A big warm hello to all! As I'm new on here I thought I should introduce myself!
I'm Ruth, 28 and currently living in the glorious and amazing french alps. Every day that I am here I count myself totally blessed and believe that God (or someone) is smiling down on me! As well as living in a beautiful place, I have several special people in my life who I hold dear, and I would describe my love life as a little “complicated but interesting”. I currently have no children.
I was diagnosed with severe Crohn's disease back in 1991 when I was just a kid, although I had suffered with various symptoms since the age of about 3. When I was 11 my condition suddenly progressed till I was only a skeleton, couldn't walk, couldn't keep anything down – not even water, and was in severe agonising pain. When my dad presented me at the local A&E, the paediatrician doc said I would have probably only had another week to live at the most. Thankfully my prayers to God had worked! Since then, I've had a fair few more brushes with death, and I count myself incredibly lucky to be alive and enjoying life today.
Since my diagnosis, I have been on total nasal gastric (ng) tube feeding – was on that for around 8 years throughout my childhood and have been on elemental diets ever since – sometimes as a supplement, have been on copious amounts of steroids which has caused me to develop osteoporosis (was on steroids Crohn's for my asthma as well as Crohn's), have been on various other medications including non-steroidal anti- inflammatories and immunosuppressants – all to no great effect (apart from one trial which I will tell you about another time), and have had 6 major operations, including an ileostomy which has since been reversed. My Crohn's is mainly in my small bowel, and as I understand it, I don't have a lot of it left due to many bowel resections and am in the “danger zone”. Thankfully in my last op, my surgeon managed to conserve the bowel instead of remove part of it.
Although Crohn's has been played a big part in my life, I have always tried my best to stay positive and to live life to the fullest as possible. I'm a great believer that you only have one life, so it is up to us to make the most of it. Obviously there have been many a times when I've just not been well enough to do the things I've wanted to do, and have had to reluctantly sit back and be patient. Admittedly learning to be patient when you are a bit of a go-oer like me, can be one of the hardest things to do! I'm nearly always cramming my life full of things I enjoy doing, sometimes in the past to the detriment of my health, and so various friends and family have to sometimes remind me to slow down and take it a bit easier! To be honest I know that having been in pain for a good chunk of my childhood and beyond, I developed a way of almost blocking out the pain so that I could continue with my life and try not let it get in my way. Unfortunately, at times I have become so apt at blocking out pain that I haven't always noticed when my condition has been getting progressively worse, and again it's taken other people – sometimes health professionals, to point it out to me. Some people might like to call this blocking out “denial” but I don't think it's quite like that, as if I knew I was so ill I certainly wouldn't beat about the bush in getting myself help. I just think that I have lived with it for so long that I have kind of become immune. Although things are starting to change now I'm living in France, as my health has taken a wondeful “up” turn, for the first time in my life, and although I'm not 100 % well, in comparison to how I've felt before, I feel pretty damn wonderful! I pray that long may this last!
Right, I think that's enough for now as I've written you an essay! Lol. Looking forward to popping in again sometime soon. Take care and hugs to all, Ruth x
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