The Movement - 5/10

Hi everyone,

A few years ago I let many folks know that I have Crohn’s Disease -
a chronic inflammatory bowel disease (IBD) that causes inflammation or
swelling of the digestive tract. As you can imagine, this disease is
not commonly talked about because of its somewhat personal nature.
Since getting things under control I, my family, and some friends have
been participating in the annual “Denver Guts and Glory Walk.” The walk
was created to raise funds to find a cure for Crohn’s disease and
ulcerative colits and to increase awareness about these diseases. This
has been a very heart warming experience every time we participate -
and I thank all of them from the bottom of my heart.

Well, as you can surmise, I (and my wonderful family and friends)
will be participating in the walk again this year and I welcome any and
all who want to join in on the walk or donate - or both. As more people
find out that I have this disease, I too, find others that are also
suffering from Crohn’s and/or Colitis. It has no longer only a personal
issue for me, but as I meet others with these diseases it has begun to become a.. well… a movement. *chuckle*

Any participation or assistance would be appreciated. I realize now
may not be a good time for some of you. So, if that is the case, please
consider it another time… maybe next year?

They changed a few things with the event this year… new event name,
new location and new time. It is now called “Take Steps for Crohn’s and
Colitis” and will be held on Saturday evening (May 10th) at the Denver
Zoo! The registration and Festival is at 6:30 p.m. and the Walk and
View Animals event starts at 7:30 p.m. They have definitely made this a
more family friendly event! I am looking forward to it.

If you are interested in either participating or donating the event information is as follows:

Event Date: May 10, 2008
Event Location: Denver Zoo
Standard: No Fees (General Registration)
Event Schedule: 6:30 p.m. Registration and Festival / 7:30 p.m. Walk Start and View Animals
Team Name: The Movement

To register or donate you can go to: http://www.active.com/donate/takestepsDN07/themovement-ben or to http://www.active.com/donate/takestepsDN07/themovement

Thanks to all of you in advance. It has been an interesting journey
so far and there has been plenty of good news for Crohn’s treatment
this year… Hopefully we can continue to have a positive impact on
research and maybe even cure this damn disease.

Thanks again and take care,

Ben

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Euphemisms for Pooping

Once again I am up in the middle of the night with feverish dreams.  When the happen I usually get up and tinker for a little while to let my body cool down. It sucks because when this happens it usually takes my body a few hours to get tired again. Oh, the joys of Crohn’s Disease.  Anyhow, the wind outside is howling tonight and my mind followed a tangent when thinking about it. Wind -> passing gas -> going poop -> euphemisms for going poop. I am sure Crohn’s disease was in there somewhere, but you get the point.

I have to say that my favorite euphemism for going poop has to be “dropping the kids off at the pool.” But… there are some other good ones I have heard. So, I thought I would make list of the ones I could think of. So, here it is:

1. Dropping the kids off at the pool

2. Releasing the hounds

3. Backing out the brown volvo

4. Going to speak to a man about a horse

5.  Cooking some fudge

6.  Drop some logs

7.  Grow a tail

8. Make a core dump

9. Pinch a loaf

10. Lay some cable

11.  Make a grunt sculpture

12. Sink the Bismark

13. Take a steamer

14. Evacuate

15. Answering the call of the wild

16. Bombing the oval office

17. Catching up on some reading

18. Flexing your cheeks

19. Greeting Mr. Hankey

20. Testing the plumbing

This in turn lead me to think about some of the terms I had heard of for diarrhea…

1. Brownie batter

2. Brewing hot chocolate

3. Hershey squirts

4. Montezuma’s revenge

5. The squirts

6. The runs

7. The trots

8. Trouser chili

*chuckle*

I am sure there are plenty I have not thought of, so feel free to remind me of them

;-)

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Incommunicado

Sorry folks, I have been incommunicado due to the holidays and fighting the eventual  outcome of them. It seems this time of year is pretty hard on folks with Crohn’s Disease. With the holidays, increased stress, large family meals, lots of sweets… all things that are tough on a person with Crohn’s by themselves, and a recipe for disaster when all combined. Well, I am not immune to these things (nor can I resist chocolate) and have paid the price. I went to the doctor today and not only did I have blood work taken, but I was also told to go see an ophthalmologist. (I think I may be suffering from Iritis) Pending the results of the blood work, I may (or may not - hopefully) need to change my medication somewhat.  Only a week and a half until my next infusion… hopefully I can stick it out until then and get things back in balance.

To all of you other Crohnies out there… (as my grandmother used to say) “Hang by yer thumbs”

-Benner

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Crohn’s Disease Part IV

Hi folks,

Before I continue, I just want to re-iterate that there are some great resources out there which contain a wealth of information pertaining to Crohn’s Disease, IBD and Colitis. Some of these are where I have gathered a bit of my information. Here they are…

http://www.webmd.com/ibd-crohns-disease/crohns-disease/what-is-crohns-disease
http://www.mayoclinic.org/crohns/
http://digestive.niddk.nih.gov/ddiseases/pubs/crohns/index.htm

In my last entry I covered Crohn’s Disease Complications. In this entry I will cover the current treatments acording to Western Medicine. (I believe there are also plenty of Holistic and Eastern treatments, but I am not covering them here) This is just high level information and more information can be found at the links mentioned above.

Current Western treatments include the following categories:
- Aminosalicylates
- Corticosteroids
- Antibiotics
- Immunosuppressives
- Immuno-modulator

* Aminosalicylates
Mesalazine, also known as Mesalamine or 5-aminosalicylic acid (5-ASA)
Many patients with mild to moderate disease are treated with medications containing mesalamine. Mesalamine is usually well-tolerated and has no serious side effects. Patients may experience nausea, headache and diarrhea. (The use of mesalamine to treat Crohn’s disease is sometimes controversial because not all studies have consistently shown that mesalamine is effective for Crohn’s disease)

Aminosalicylates (5-ASA compounds) include the folliwng drugs:
sulfasalazine (Azulfidine)
mesalamine (Pentasa, Asacol, Dipentum, Colazal, Rowasa enema, Canasa suppository)

Side effects of oral 5-ASA compounds
The 5-ASA compounds have fewer side effects than Azulfidine and also do not reduce sperm counts. They are safe medications for long-term use and are well-tolerated. Patients allergic to aspirin should avoid 5-ASA compounds because they are similar chemically to aspirin. 5-ASA should be used with caution in patients with kidney disease because rare kidney and lung inflammation have been reported with the use of 5-ASA compounds.

* Corticosteroids
Some patients who have severe active disease or do not respond to mesalamine therapy may need corticosteroids such as prednisone to control inflammation and induce remission. These drugs are effective but have significant side effects, such as increased susceptibility to infection, mood swings, anxiety, depression, elevated blood pressure, glaucoma, cataracts and osteoporosis. Physicians may use different strategies to administer these drugs in order to reduce side effects. Budesonide is a corticosteroid that is rapidly broken down by the liver, resulting in a much lower frequency of side effects. These medications are gradually reduced once remission is achieved and mesalamine or a drug that suppresses the immune system is used to maintain remission.

Corticosteroids include the following drugs:
Prednisone
Budesonide

Some corticosteroids act systemically (without the need for direct contact with the inflamed tissue) to decrease inflammation throughout the body. A new class of non systemic topical corticosteroid (for example, budesonide) acts via direct contact (topically) with the inflamed tissue. This class of corticosteroids has fewer side effects than systemic corticosteroids which are absorbed into the body.

Side effects of corticosteroids
Systemic corticosteroids have important and predictable side effects if used long term. The frequency and severity of side effects of corticosteroids depend on the dose and duration of their use. Short courses of corticosteroids, for example, usually are well tolerated with few and mild side effects. Common side effects include:

* rounding of the face (moon face)
* acne
* increased body hair
* diabetes
* weight gain
* high blood pressure
* cataracts
* glaucoma
* increased susceptibility to infections
* muscle weakness
* depression
* insomnia
* mood swings
* personality changes
* irritability
* thinning of the bones (osteoporosis) with fractures of the spine.

** Children receiving corticosteroids experience stunted growth.

The most serious complication from long term corticosteroid use is aseptic necrosis of the hip joints. Aseptic necrosis is a condition in which there is death and degeneration of the hip bone. It is a painful condition that can ultimately lead to the need for surgical replacement of the hip. Aseptic necrosis also has been reported in the knee joints. It is not known how corticosteroids cause aseptic necrosis. The estimated incidence of aseptic necrosis among corticosteroid users is 3%-4%. Patients on corticosteroids who develop pain in the hips or knees should report the pain to their doctors promptly. Early diagnosis of aseptic necrosis with cessation of corticosteroids might decrease the severity of the aseptic necrosis and the need for hip replacement surgery.

* Antibiotics
Antibiotics such as metronidazole are sometimes used to treat Crohn’s disease. They are particularly helpful in patients with fistulas and are often combined with other medications. The use of metronidazole to treat active Crohn’s disease or to delay the recurrence of Crohn’s for the first two to three years after an ileum resection surgery is often controversial because not all studies have consistently shown that metronidazole and other antibiotics are effective in these patient groups. Metronidazole can be effective in managing perineal Crohn’s disease (involving the pelvic area).

Antibiotics include the following drugs:
Metronidazole (Flagyl)
Ciprofloxacin (Cipro)

Metronidazole (Flagyl) is an antibiotic that is used for treating several infections caused by parasites (for example, giardia) and bacteria (for example, infections caused by anaerobic bacteria, and vaginal infections). It is effective in treating Crohn’s colitis and is particularly useful in treating patients with anal fistulae.

Side effects of metronidazole include nausea, headaches, loss of appetite, a metallic taste, and, rarely, a rash.

* Immunosuppressives
Immunosuppressives (drugs that suppress the immune system) such as azathioprine, 6-mercaptopurine and methotrexate are also used to block inflammation. They are effective but may cause side effects such as nausea, vomiting, liver problems or inflammation of the pancreas. They work over the long term by suppressing the bone marrow and, as a result, the immune response. Because of their potential side effects, frequent monitoring, including blood tests and doctor visits, are important. These medications take on average eight to 12 weeks to begin working. Usually the physician uses other medications to induce remission. Despite their limitations, these medications can allow patients to wean themselves from corticosteroids. Most patients tolerate them well.

Immunosuppressives include the following drugs:
Azathioprine (Imuran)
Methotrexate (Rheumatrex, Trexall)
6-mercaptopurine (6-MP)

Side effects of azathioprine and 6-MP include increased vulnerability to infections, inflammation of the liver (hepatitis) and the pancreas (pancreatitis), and bone marrow toxicity (interference with the formation of cells that circulate in the blood).

* Immuno-modulators (Biologics)
Immuno-modulators are medications that affect the body’s immune system. The immune system is composed of immune cells and the proteins that they produce. These cells and proteins serve to protect the body against harmful bacteria, viruses, fungi, and other foreign invaders. Activation of the immune system causes inflammation within the tissues where the activation occurs. Normally, the immune system is activated only when the body is exposed to foreign invaders. In patients with Crohn’s disease and ulcerative colitis, however, the immune system is abnormally and chronically activated in the absence of any known invader.

These drugs are a relatively new addition to medical treatments for Crohn’s disease. One of these, infliximab, is the first medication approved by the U.S. Food and Drug Administration specifically for the treatment of Crohn’s disease. It is an antibody that blocks tumor necrosis factor (TNF), an important cause of inflammation in Crohn’s disease. Infliximab is given intravenously initially as a series of three injections. In most cases it is followed by maintenance dosing every eight weeks. It is effective in inducing and maintaining remission. Several other biologic agents for Crohn’s disease are being studied in clinical trials currently.

Biologic therapies include the following drugs:
Infliximab (Remicade)
Adalimumab (Humira)

Side effects of Infliximab include abdominal pain, nausea, fatigue, and vomiting.
Side effects of Adalimumab are headache, rash, nausea and stomach upset. Adalimumab may cause swelling, redness, pain and itching at the site of injection .

* Surgery. We can get more into that one next time.

Stay tuned for yet more info soon…
* Treatments - Surgery
* Diet and taking care of your self
* Alternative Medicine
* Resources

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