9 News Reporter and husband live with I.B.D.

I was surprised to see this article on (Denver) 9 News pop up on the radar this past week. It is sad to see two great people suffering from IBD, but good to see the publicity to increase awareness of the diseases.

http://www.9news.com/seenon9news/article.aspx?storyid=115936&catid=509

-Ben

“The Movement” has returned

Hi everyone,

It is getting to be that time of year again… Yep, “The Movement” has returned and  it is time to Take Steps for Crohn’s and Colitis again!

 

 

They changed a few things with the event last year and had the event at the Denver Zoo. It turned out to be a great move and the kids had a wonderful time.  It will be held on Saturday evening (May 30th) 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:

Take Steps for Crohn’s & Colitis Walk was created to raise funds to find a cure for Crohn’s disease and ulcerative colitis and to increase awareness about these diseases. Participants raise funds to support research and education programs.

Event Date: Saturday May 30th, 2009
Event Location: Denver Zoo
Event Schedule: 6:30 p.m. Registration and Festival /     7:30 p.m. Walk Starts
Standard: No Fees (General Registration)
Team Name: The Movement

To register you can go to:
http://online.ccfa.org/site/TR/Walk/2009TakeSteps/867461249?px=1392401&pg=personal&fr_id=1219 and click on the “Join Ben’s Team” button.

To donate you can go to:
http://online.ccfa.org/site/TR/Walk/2009TakeSteps/867461249?px=1392401&pg=personal&fr_id=1219 and click on the “Support Ben Now!” button.

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?

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

My New Favorite Site!

Boy… this idea is brilliant! Anyone who has Crohn’s, Colitis or any other digestive disorders will appreciate this site.

A place to find and record bathrooms anywhere in the world.
http://www.sitorsquat.com

It also has downloads for the iphone and smartphones.

Take a look – it uses google maps to identify the bathrooms in your areas and also provides user ratings for those bathrooms.

Simply brilliant.

Celgene stem cell therapy gets FDA nod for human trials (for Chron’s Disease)

I have been waiting a while to hear more about stem cell therapy for Crohn’s Disease… and boy does this intrigue me!!! My understanding is the implementation of it is “heavy duty.”  What I read indicates the patient has to undertake chemo-therapy to weaken/kill most of the immune system. (3 months chemo)  Then, the stem cell therapy is undertaken… and takes 3-6 months to take hold and 9-12 months for the users immune system to get back to a normal level.

I have to say… it sounds like a year of treatment, but if this cures this damn disease – OH BOY!!! Let me get on that train!

http://www.reuters.com/article/rbssHealthcareNews/idUSBNG36547620081110

Diying with dignity

I am saddened at the loss of such a unique individual and wish her family and friends well.

While I don’t entirely agree with her approach I wanted to save this off to the side for comment. I found this reading spawned a lot of questions and insights for me. Lately I have been feeling my own mortality and this scenario scares the hell out of me. I only hope if I come across this type of situation that I handle it with the same poise and composure she did.

-Ben

The original article is located at:
http://www.watoday.com.au/national/this-is-angelique-she-wanted-to-die-with-dignity-20080913-4fqi.html?page=-1

And the article reads as follows:

This is Angelique. She wanted to die with dignity


  • Sherrill Nixon
  • September 13, 2008

Just a month shy of her 31st birthday and half a lifetime since she was diagnosed with the debilitating Crohn’s disease at 15, Angelique Flowers was told she had colon cancer. It was so advanced and so aggressive, she was given only months to live.

That was in May. She would have dearly loved to have spent her last days with those closest to her, but another desire was overwhelming.
‘Let me die with dignity Mr Rudd’

Angelique recorded this video in the final months of her life, pleading to be allowed to die with dignity.

Frightened of a slow, painful death from a total bowel obstruction, this softly spoken Melbourne writer wanted her life to end peacefully and on her own terms.

It wasn’t to be. She regretfully turned away from her loved ones and spent her final weeks searching for information about euthanasia and a dose of the lethal drug Nembutal. Her final hours were robbed of the dignity she had wanted as she died vomiting the content of her bowels.

Flowers’ quest dominated her dying days, and her frustration at Australia’s current legal situation led her to film a passionate appeal to Prime Minister Kevin Rudd.

“I don’t believe in stoicism. I freely admit to not being a brave soul who grins and bears the pain and soldiers on,” she says in the video, filmed during one of her last day trips from her hospice bed.

“I deeply admire people who rise above the adversity and their suffering. But I haven’t grown from my illness or become a better person from its torments. All I want after 16 years of painful Crohn’s disease and now cancer is to die a pain-free peaceful death.

“Because euthanasia was banned in Australia I am denied this right …

“We finally have in Kevin Rudd a prime minister who is a person as well as a politician. A man who had the conscience to say sorry to our indigenous people, the integrity to ratify the Kyoto Protocol.

“I beg the Labor Government to continue beating with the heart it has shown and to ensure euthanasia is made legal once again.

“The law wouldn’t let a dog suffer the agony I’m going through before an inevitable death. It would be put down. Yet under the law, my life is worth less than a dog’s.”

In the film, Flowers says the stress of having to hide her activity from her family, friends and medical staff made her even more ill, and her composure cracks as she relates how she contemplated violent ways to end her life such as jumping off a building.

“I have been robbed of both my living and my dying,” she says, her large eyes peering out from her pale face.

“At a time when I want to spend what good days and precious moments I have left having meaningful time with the people I love, I’ve had to cut myself off, writing questions and notes, making inquiries, doing research.

“If euthanasia was legal, I could have ended my days as I chose, finding peace before leaving this world, not panic and more pain.”

The video is one of two she filmed in her final weeks; in the second she explains to those she loved how her excruciatingly painful Crohn’s disease had meant she couldn’t spend more time with them.

For half of her life, the illness had at its worst, left her bedridden in agony, and at best, anxious and socially withdrawn. As her friends studied and celebrated and spent summers at the beach, Flowers stayed at home, too often

sapped of the health, energy or confidence to join them. She was a private person, and kept her disease a secret from many of her extended family and friends for a decade.

She is scathing of the medical profession – her trust eroded by conflicting advice, poor bedside manners, and unbearable pain.

Flowers gave the films to Philip Nitschke and his group Exit International, which she encountered in her search.

It was through them that she learnt Federal Parliament overturned the Northern Territory’s world-first euthanasia law in 1996. She also learnt about Nembutal, a lethal drug often used in euthanasia, but the idea of an arduous trip to Mexico to obtain it was quickly discarded.

So, on Dr Nitschke’s advice, she used that very generation X tool, YouTube, to broadcast her appeal for Nembutal.

Flowers did obtain a dose , but she never used it. No one knows why – perhaps the fear of implicating family members, or the need to also take anti-nausea drugs to keep the Nembutal down.

She suffered the bowel obstruction she had feared and died on August 19.

Her older brother Damian, 34, was with her, and believes she was still in pain despite massive doses of morphine and other painkillers. In her last hour, he held a bowl under his sister’s chin as she vomited faecal matter.

“The peaceful ending wasn’t there,” he told The Age. “From the death she could have had, taking the Nembutal, saying her goodbyes to friends and family, having everyone there for her and being where she wanted to be, compared to what she did actually go through, it just doesn’t bear imagining.

“How can that be right? How can society believe terminal patients should be put through awful agonising deaths? Angelique wasn’t afraid of dying; it was more the way she was going to die that she feared.”

While Flowers may not have believed she was brave enough, her family credit her inner strength with helping them through the ordeal.

Damian and older sister Michelle hope her public appeal brings about legal change. The Victorian upper house this week voted down a private member’s bill giving terminally ill people the right to die with the help of a doctor.

But hopes are higher for a private member’s bill introduced by Greens leader Bob Brown in Federal Parliament. That bill, on which debate and a vote is expected to be held in the life of this Parliament, seeks to restore the right of the Northern Territory or the Australian Capital Territory to legislate for voluntary euthanasia.

Dr Nitschke, who met Flowers twice and intends to send her video to Senator Brown and Mr Rudd, described her as an eloquent advocate who was able to distance herself from her own plight.

“I found her an amazing and intriguing person … it’s certainly a very powerful voice,” he said.

In her videos, Flowers talks of happier times and her achievements – the fact she rated in the state’s top 7% of students in year 12, and her pride at completing a degree in professional writing despite her illness.

She recalls “one of the most wonderful experiences of her life”, a four-month trip to the United Kingdom and Europe in 2006, where she travelled to literary sites including Oscar Wilde’s grave.

Before she was diagnosed with cancer, she wrote three books of inspiring and humorous quotes – a tough task when, at times, she could hardly hold a pen – that her family now hopes to have published.

“I just want you guys to know that I have no regrets … I would have liked to have done more things in my life but the things I was able to do I am proud of,” she says.

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

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
;-)

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

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

Do my kids have Crohn’s Disease?

Do my kids have Crohn’s Disease? I wonder this on occasion and I sure as heck hope not. Sometimes they have the usual kids illnesses which can on occasion also include diarrhea. (especially due to the drugs prescribed) During those bouts I can’t help but wonder if they too have this sneaky and disheartening disease. There are some studies that indicate the disease is genetic, but then again there are studies that say if you eat enough hot dogs you can get cancer. I am not sure how much weight I can give them.

When I was growing up I had a grandfather (Grandpa Charlie) who died of cancer. I think it was colon cancer, but I was young and could be recalling it incorrectly. I will need to verify it. Sometimes I recall him and think – Did Grandpa Charlie have Crohn’s or IBD and was it possibly never diagnosed? It was a long time ago, so I would not be surprised, but It certainly makes me wonder how many others out there had this and it was never diagnosed – or discussed for that matter.  (it is somewhat taboo to discuss that type of personal hygiene here in the U.S.)

One thing I have learned through having this disease is to seek help when things are not going well.  Growing up I had the mindset that going to the doctor was almost a last resort. (sorry Mom and Dad, but that seemed how you guys behaved and it rubbed off on some of us) Now, however, I have come to the understanding if the disease is dictating how I live my life then I know things are not going well and I have to see the doctor.

I don’t understand why the U.S. mindset about personal health is so taboo, but that needs to change. We need to talk about these types of diseases and problems not only to make people aware, but to break down these barriers that could be holding back the information that might lead to a cure.

*stepping down from the soap box now* ;-)

-Ben

ps. The remicade did the trick and Thanksgiving was great… good food, good people, good times.