Sussman at sea

Special thanks to Joe who commented on a previous post for turning me on to what Ari Sussman is doing to raise funds for the Crohn's & Colitis Foundation of America.

Here's Joe's comment - "Three years ago a good friend died from post-op complications after his colostomy. He was 26 at the time, and as you can imagine it was a huge tragedy all of us in his life. Another friend is now sailing across the Atlantic, and using the opportunity to raise money for Crohn's and Colitis research (he has secured a $10,000 matching grant). Part of the inspiration for this campaign is the adventurous spirit of our friend Yossi, who passed. The campaign can be found here: https://www.thepoint.com/campaigns/sussman-at-sea. I hope this is something you find interesting and share with your community here at Confessions of a Crohn's Patient."

Click on the link and go check out where he's doing and where he's at now in his quest. Give if you can. This is a pretty cool way to raise awareness and money at the same time. Hopefully he'll get to his goal of $20K.

Medication du jour - Imuran

I take 1 - 50mg tablet of Imuran 1xday. It's not nearly as cumbersome as the Pentasa. Small pill about like taking an asprin. The fact I only have to take it once a day is very nice. I do have to go once a quarter for them to check my liver enzymes - just bloodwork, to make sure my body isn't doing something crazy on this medicine.

Here's some more details from GI Health

All About Imuran (azothioprine)
Many patients are not as well informed about prescription medications as they ought to be. We believe the more you know about your medications, the better. This article has been written to help you understand more about what Imuran is and the importance of taking it properly. If any of the information causes you special concern or if you want additional information about your medicine and its use, check with your doctor or pharmacist.

If any of the information in this article causes you special concern or if you want additional information about your medicine and its use, check with your doctor or pharmacist.

Remember to keep all prescription drugs out of reach and sight of children when not in use. Store Imuran in the original labeled container in a cool dry place. Protect from light. Always read the label before using.

What is Imuran?
Introduced in 1968, Imuran is a powerful drug that weakens the immune system. It is often used to prevent rejection of kidney transplants. It is also used to treat severe cases of rheumatoid arthritis, systemic lupus, polymyositis, Crohn's disease, ulcerative colitis, and other "autoimmune" disorders. Its use is usually confined to patients who have failed to respond adequately to simpler treatment.

The generic name of Imuran is azothioprine (ay za THYE oh preen). Each tablet contains 50 milligrams and is easily broken in half when dosage adjustments are needed. Imuran, itself, does not act against IBD. After being absorbed by the intestines, it is changed in the liver to a chemical called 6-mercaptopurine, or 6-MP. This form of the drug is also available by prescription and sold as Purinethol.

What Imuran is not.
Imuran is not the same as the prednisone. But, Imuran depresses the immune system as does prednisone. This usually allows your doctor to reduce your dose of prednisone resulting in less side effects.

Imuran is not habit-forming. It does not cause drowsiness and will not affect your driving or working. It does not cause sexual impotence. There are no restrictions on exposure to sunlight.

How does Imuran work?
Immunomodulating agents, or drugs that suppress the immune system, such as Imuran have become important tools in the long term treatment of inflammatory bowel diseases such as Crohn's disease and ulcerative colitis. Although the exact mechanism of how Imuran works is not known, it is felt that by inhibiting the immune system, this drug suppresses the "overactive" immune reaction that is responsible for such disorders as Crohn's disease and Ulcerative Colitis.

Taking Imuran properly
1. Imuran is best taken with food. Imuran can irritate the stomach lining and therefore should be taken with food which serves as a buffer and reduces the irritation. The tablets may be crushed if necessary. There are no food or beverage restrictions. Imuran can be taken with milk. It does not interact with alcohol or tobacco.

2. Take the dose as prescribed once daily. There is no fixed rule for the correct dose of Imuran. The average dose is one or two tablets daily, but each case is different. Your doctor will determine what initial dose is best for you depending on the activity of your disease, your age, weight, any other medical conditions you may have, and your response to treatment - do not alter the dose on your own. The goal, of course, is to control your illness with the lowest effective dose of Imuran possible. Your doctor will routinely reassess what dose is necessary for you. The tablets may be crushed if necessary. If two tablets are prescribed, they may be taken at the same time once daily.

3. If you forget a dose, take the normal dose of the medication as soon as you remember and resume your normal schedule the following morning. If you do not remember until the next day, skip the missed dose.

4. Do not expect immediate results. Imuran does not work right away. In fact, it may take more than 3 months to show a beneficial response. You can plan to be on this drug anywhere from 3 months to several years.

5. Keep all your appointments. Imuran is only given under close supervision because of the risk of serious adverse effects. Periodic blood tests are mandatory for the safe use of this drug. Report for examinations as directed.

6. Be sure all of your doctors know that you are taking this drug. This is a good general rule, but it is especially important for you to remember if you are away from your doctor and require major surgery or develop a severe infection. If you are to be on Imuran for a long period of time, carry a reminder with you on a Medic-Alert bracelet or in your wallet. (Medic-Alert Foundation can be contacted at their toll-free number 800-344-3226)

What are the side effects?
This is the main concern. When taken over a long period of time (months to years) Imuran can cause many side effects. But when Crohn's disease or ulcerative colitis become difficult to control with prednisone, the benefit of Imuran far outweighs the potential risks. For difficult to manage conditions, Imuran can be a miraculous medication. In general, the risk of side effects depends on the length of time you take Imuran and the amount you take.

These side effects can occur with short term use but fortunately are usually reversible as the dose of Imuran is decreased:
skin rash
loss of appetite
nausea, vomiting
diarrhea These side effects are more serious. They usually occur after long term usage.

Immediately report any of these symptoms to your doctor:
>Bone marrow depression
severe fatigue
weakness
fever
severe sore throat
abnormal bleeding or bruising
sores on lips and in mouth
>Liver damage
yellow eyes and skin
jaundice
dark-colored urine
>Drug-induced pneumonia
severe persistent cough
shortness of breath
Pancreatitis
severe stomach pain
nausea and vomiting

Other side effects not listed above may also occur in some patients. If you notice any other effects, check with your doctor, nurse, or pharmacist.

You can help limit side effects by taking the medication exactly as prescribed and reporting any problems to your doctor. Report promptly any indication of a developing infection - fever, chills, lip or mouth sores, etc.

What about cancer?
Some doctors feel that there may be a slightly increased risk of some cancers such as lymphoma or Hodgkins disease after long-term use of Imuran. But , a scientific study done at the University of Pennsylvania in 2001 studied 1467 patients with Ulcerative colitis or Crohn's Disease and found no increased risk of lymphoma in patients who took Imuran. However, there is still some controversy about this point - so you must be willing to accept this possible risk if you take Imuran. Again, this powerful drug is only used as a last resort in patients with severe inflammatory bowel disease who do not respond to conventional treatment. In general, it is felt that the benefits of Imuran in this difficult situation outweigh the risks.

Monitoring Imuran
Each patient is different and the optimum dose of Imuran varies from one individual to another. There is sometimes a narrow range between the most effective dose and a toxic dose. The doctor determines the best dose based on age, weight, response to treatment, and monitors symptoms and blood tests for side effects.

Technology is also now available that allows for more accurate dose adjustment. The metabolites of Imuran called 6-TG and 6-MMP can be directly measured in the blood. Higher 6-TG levels correlate with clinical response to Imuran but also the risk of bone marrow suppression. Higher 6-MMP levels correlates with liver toxicity. These special blood tests may be requested from Prometheus Laboratories to help the doctor determine the proper dose. Studies at the Cleveland Clinic have suggested that 6-TG levels greater than 260 are necessary for a clinical benefit and 6-MMP levels over 5700 have been associated with liver toxicity.

Precautions
Do not take Imuran if you are pregnant or plan to become pregnant in the near future. Birth defects have been reported in animals that received large doses of Imuran during pregnancy. This drug also has the potential for producing birth defects in human offspring. Use of this drug is not recommended during pregnancy. There is a possibility that birth defects may occur if either the mother or father is using Imuran at the time of conception. Use of birth control is recommended while taking this drug. Do not breast feed while on this drug.

Notify your doctor if you recently had chickenpox or shingles. Be sure to inform him if you are taking allopurinol (Zyloprim), Dilantin, Rifampin, or phenobarbital. These drugs may increase the blood levels of Imuran, which can lead to serious side effects. Tell your doctor if you have any kind of active infection, have a history of bone marrow disorders, severe liver or kidney disease, or are pregnant or plan to become pregnant in the near future. Be aware that Imuran can lessen the effects of the anticoagulant drug Coumadin.

Remember
Imuran is a very powerful drug with many helpful properties, but as with all potent medications, side effects may occur. You can best limit problems with this medication by taking it exactly as prescribed. If you have any questions or concerns, please discuss them with your doctor.

Medication du jour - Pentasa

So I'll go first with the meds. I take 2-500mg capsules 4x a day. These are big blue pills (as opposed to the little blue pills) that are not for the faint at heart to take. My wife calls them horse pills. They are by far the largest medication that I have ever taken.

Here's the stuff from their website: www.pentasaus.com
What is PENTASA?
PENTASA is an anti-inflammatory drug containing mesalamine, which helps to reduce inflammation in the intestine. Specifically, PENTASA is approved for the induction of remission and for the treatment of mildly to moderately active ulcerative colitis.

PENTASA Features an Innovative Drug Delivery System
PENTASA delivers mesalamine to your small and large intestine in a special way. Here’s how it works:

Each PENTASA capsule has a gelatin-like coating. Once inside your stomach, the coating dissolves, releasing tiny semiporous spheres. These spheres help deliver the mesalamine to your small and large intestine. Water found inside your intestine flushes mesalamine out from the spheres. Once the mesalamine is released, the drug is free to help reduce the inflammation.

PENTASA 500-mg Capsules May Relieve Your Symptoms with Fewer Capsules
PENTASA helps to bring your symptoms under control. In a clinical study, PENTASA significantly reduced the severity of the most common signs and symptoms of ulcerative colitis (compared with a sugar pill), including:
Bleeding from the rectum
Stomach cramps
The urge to go to the bathroom
The number of trips to the toilet each day

PENTASA 500-mg capsules provide symptom control and relief with only 8 capsules a day. That’s half the number of capsules compared with the 250-mg formulation.

So that's a synopsis from their site. Go there if you want to read more. I did find it interesting to read that they have a Patient Assistance Program for free or low cost medication for low income families or those with no insurance.

Pros: Well, I do notice that I do not go to the bathroom as much as I did before I was taking it, which is always positive.
Cons: I can't for the life of me remember to take this medication every time I'm supposed to. Even with setting an alarm to help me remember, I still don't take it as prescribed. Maybe they'll read this and take a suggestion - get it down to taking just once a day. I would take all 8 of them in the morning, if it meant I didn't have to take them all day.

Hope that gives you some insight. Until next time...

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...

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.

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

Crohn's College Scholarship

Here's something I just read about thought I would put it out here to pass it on. Very, Very interesting. There is a college scholarship for Crohn's patients. I'm putting the link below in this post - but there is a link to the general website "Crohn's and Me" over in our list of crohn's websites.

I know there are lots of younger Crohn's patients out there & maybe something like this can help them with College. Wish I had had something like this back in the day.

http://www.crohnsandme.com/thescoop/scholarship.asp

Until next time...