Tag Archives: Crohn’s Disease

living with crohn's disease

Understanding Crohn’s Disease

What is Crohn’s Disease?

Crohn’s disease is a chronic inflammatory disease of the bowels in which the gastrointestinal tract is most affected.  The gastrointestinal tract refers to the group consisting of mouth, esophagus, stomach, both small and large intestine, and anus, although symptoms can occur which affects a sufferer’s skin, joints and eyes.  It is not contagious, and you cannot contract Crohn’s through your actions or by an inadequate diet.

How does Crohn’s develop?

First of all, Crohn’s is not contagious, so you didn’t “catch” it from someone or by someplace you’ve been.  You cannot get Crohn’s through an inadequate diet.  Although the exact causes aren’t widely understood, it’s generally thought that Crohn’s disease may be genetically inherited (so if someone in your family has Crohn’s it’s likely that you’ll be more susceptible to getting it.).  Your individual immune system also plays a part; since Crohn’s is thought to be a hyperactive or overactive immune system, sometimes environmental factors beyond your control trigger an abnormal immune response.  This leads to a chronic condition of raw and inflamed intestines, and can lead directly to Crohn’s.

The disease most often affects individuals between the ages of 15 and 35. But it can potentially affect anyone at any age.  It affects both, men and women,  equally. Although interestingly enough, there have been studies showing anover average number of Crohn’s sufferers among the Ashkenazi Jews.

Two reasons to get Crohn’s related testing & common tests:

You’ll want to see your doctor to determine whether you have Crohn’s in the first place. Also, upon a confirmed diagnosis, to re-evaluate your Crohn’s disease on a regular basis.

Common tests are through either blood or imaging.  The blood tests involve a routine procedure to detect infection, anemia, inflammation. Also, to identify (and subsequently treat) any vitamin or mineral deficiencies.  There are also fecal blood tests (to determine if you have blood in your stool). Also, antibody blood tests (to look for antibodies and proteins that will indicate to your doctor which diseases your body is currently trying to fight off).

Imaging tests can include conventional x-rays, contrast x-rays, endoscopy, and endoscopy ultrasound.

Things to do before visiting your doctor:

In order to have all of the pertinent information you’ll need to help your doctor with a diagnosis, there are a few things you can do.  Make a list of all current medications (including herbal varieties) that you’re currently taking.  Keep a diary of your symptoms, how long they lasted, and how severe or mild each one was.  You might also keep track of things you missed because of your symptoms. For example, did you stay home from work, or miss a meal due to discomfort?  If you’re forgetful, or if you’re worried that you’ll be too emotional to relay or receive important information, it might help to bring a friend or family member with you.  The better your doctor understands your symptoms and how they affect you, the better he or she can not only diagnose you. But also prescribe appropriate relief.

Most of all, remember that although some details might lead to embarrassment, your doctor is a professional who deals with many situations like these on a daily basis.  Don’t be afraid to share details!

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NZ microbiologist may have cracked Crohn’s disease

Research by NZ microbiologist John Aitken has recorded a major advance in the treatment of Crohn’s disease, which affects 20,000 New Zealanders!

Christchurch gastroenterologist Professor Richard Gearry, who has worked with Aitken on previous studies, says scientists have struggled to grow the MAP-type bacteria and “nobody has had the same sort of success . . . as John”.

“If you can grow it, you can start to explore causation a lot more. Not only that, but that work will translate to Johne’s disease in livestock which is a big problem in NZ.

“People internationally are very interested in that. All of sudden you can get underneath the clinical observations and try and understand those mechanisms as to what is going on.”

Aitken became interested in Crohn’s as a 23-year-old when he was told he had it. He spent the next three years with an image of his colon snapping like a carrot.

It turned out he did not have Crohn’s, but his brush with the disease sharpened his interest.

In 2005, a US colleague, whose wife had Crohn’s, asked him to look at her blood samples and he was able to see the elusive mycobacterium associated with Crohn’s under the microscope.

By 2010, he was able to grow the bacteria and Crohn’s clinicians and researchers were starting to take notice.

A year later, Aitken and others set up a medical laboratory under the banner of Otakaro Pathways Ltd in the old Princess Margaret Hospital mortuary. Funding came from various sources including Callaghan Innovation.

Canterbury’s earthquakes intervened, but Aitken is pushing ahead with his research with renewed vigour and setting up a new laboratory in the Templeton Industrial park.

One of the shareholders is Professor Tom Borody, who runs the Centre for Digestive Diseases in Sydney. He is a controversial figure in his field, but since he invented using antibiotic therapy against the bug that can cause stomach ulcers, he is not taken lightly.

Borody doesn’t need more testing to be convinced Crohn’s is bacterial in origin. He is well known in Australia as a gastroenterologist prepared to treat Crohn’s with a cocktail of antibiotics which Aitken says are achieving 80 to 90 per cent remission rates.

While patients are queuing up to see Borody, the medical world is not exactly beating a path to his door.

“It’s very difficult for experts to prove themselves wrong,” says Aitken, who doesn’t want to be pigeonholed as a bacteria advocate, although it’s clear where his research places him.

He avoids calling the organism he has grown and made visible MAP.

“What we are trying to do is have a test out there that can tell whether therapy against the mycobacterium is working.”

If researchers find out that mycobacteria cause Crohn’s and discover how the mechanism works, the key to curing or treating other diseases like multiple sclerosis might be next.

For the moment, mainstream gastroenterologists like Gearry will not prescribe the cocktail favoured by Borody to Crohn’s patients even if they want them.

He describes the immune system versus bacteria Crohn’s debate as “incredibly polarising”.

“A lot of groups around the world are very strong in using this anti-MAP therapy. They all zealously believe MAP is the cause . . . but the concern is maybe they can’t afford to see [their hypothesis] fail and there are financial interests in it as well.”

Gearry says the best test of anti-MAP therapy so far was a randomised control trial in Australia involving about 200 patients who were given the three antibiotics Borody and others claimed were the key to treating Crohn’s.

Those running the trial, the methodology of which was later criticised, concluded the anti-MAP therapy was no more effective than a placebo.

The results did not discourage large Israeli pharmaceutical company Redhill from funding another randomised control study which got under way this year. Redhill developed a pill which combines the three antibiotics – Clarithromycin, Rifabutin and Clofazimine – used by Borody.

Gearry is supervising the trial in Canterbury and so far has two patients taking part.

“I have no opinion on it. What I have been really worried about is the science behind what has gone on with the clinical aspects of this. It hasn’t been rigorous and it’s been led by people other reasons for it to succeed.”

AITKEN’S LEGACY

The results of the trial are keenly awaited internationally.

Meanwhile, other Crohn’s research groups around the world are making strides into aspects of Crohn’s. Aitken, for instance, is working with a group in Bulgaria. The race is on.

Aitken hasn’t published his work for fear of it being pinched. He not quite ready to tell the world. He certainly doesn’t need more money.

“Instead of going in with circumstantial evidence, you are much better going in with total forensic evidence.”

Aitken comes back frequently to the patients and their mothers.

“The mothers of the children are just unbelievable. I’ve never seen anything like it. It’s like they sense there is something out there they must reach it whatever it takes.”

They send him cards, drawings and letters of thanks.

“This article taken from the magazine stuff.co.nz”

 

5 Steps to Surviving Colonoscopy Prep

crohnie merit badges - colonoscopy prepiEarlier this month, I had my annual colonoscopy, which I guess to be my one-hundred millionth. Maybe that’s why they went back-to-back with an endoscopy as if I had won some kind of scope lottery. I figure I’m a pro at this point, with bragging rights to the early 90’s hospital prep, when the nurses would walk into your room where you’re watching Ghost and episodes of the new dreamy George Clooney ER show, and dump gallons of tepid prep on your bedside table like they’re carting barrels of crude oil around. Continue reading

We Wish you a Merry Crohnmas…

IMG_2283Crohn’s Disease really is the gift that keeps on giving. It doesn’t stop for Christmas, it doesn’t give you a break during the summer, and doesn’t ‘rise again’ during Easter because it’s always there anyway. It is relentless and punishing and about as far from the spirit of Christmas as you could get.

Regardless, I’m looking forward to the festive season this year, but I can’t quite settle into the idea of fun and lights and laughter yet because, as always, I still have various medical bits and bobs to get through. Continue reading

Stress Cravings

f4oebIs it just me or does ongoing holiday stress start to eat away at your willpower and make it easier to turn your cheek to those stringent Crohn’s diet recommendations?  Let’s blame it on endless holiday social situations where we’re faced with platters of nuts, fried foods and other awful sights.

At a holiday party earlier today I tucked a few morsels of “bad” food on my flimsy paper plate to avoid snide looks by coworkers who question why I’m so picky and not appreciative of their simmering Crock Pot concoction.  Continue reading

Are you Gonna Crohn my Way?

2011-09-12 08.37.48It’s sadly very easy to feel alone and isolated in living with a chronic illness like Crohn’s Disease. Even if you are surrounded by loving family and friends, who are more than willing to offer unconditional support and understanding,  it can sometimes feel you are acting to appease them rather than sharing the worst parts of your condition. Continue reading

When the Diagnoses Keep Coming

why cloudRunaway Train.  That’s how I feel sometimes.  Like a runaway train of invisible to the eye invaders are ravaging my body.  Sometimes the secondary illnesses that tag along over the years with an autoimmune disease become more stressful than the disease itself.  Fear of the unknown is one of my biggest challenges, and every time I learn of some new ailment attacking my body, I peer into a void of what-if’s all over again. Continue reading

Bile High Club

IMG_8896It’s incredibly difficult to cope day to day with Crohn’s Disease; or with any Inflammatory Bowel Disease, or chronic illness for that matter. The very experience of having to deal with all the rollercoaster-like ups and downs these conditions come with, both mentally and physically, is completely and utterly knackering. Throw having to try and live a normal life outside of your defunct body into the mix and suddenly it’s a feat of human endurance that Rocky Balboa would struggle to take on. Continue reading

Job Considerations: Following Your Yellow Brick Road

nz vineyardChange can be tough for Crohnies.  We find comfort in routines, because we are able to accommodate our vast and varying needs with practice over time.  If you always take the same route to work, school, or your kid’s soccer match, you know where the closest healthy food options are, the cleanest restrooms, and the exact travel time in case you need to race home. Continue reading

I love to hate you

IMG_8423Some things I hate:

  1. That wee curly bit of hair in my fringe that NEVER sits right no matter what I use on it.
  2. Rudeness and/or lack of manners.
  3. Racism, Sexism, (any ‘ism basically).
  4. Having Crohn’s Disease.

Some things I love:

  1. Cats.
  2. Nutella.
  3. Listening to the same song over and over and over until I hate it.
  4. Having Crohn’s Disease.

Continue reading