Find a toilet

It's no secret that with Crohn's disease comes the dodgiest of guts that often means urgent dashes for the dunny. It's no big drama if you're at home or the office but what about everywhere else? I know when I'm having a bad day the last thing I want to do is leave the house. Sometimes I have no choice. 

I'm thinking about this today because my Crohn's has been flaring spectacularly the last few days and even Imodium hasn't made much of a difference. There was time not long after my last surgery where I had to go every half hour. Those were some hard times. Today wasn't anywhere near that bad, but it was enough to get me thinking about the availability (and usability) of public toilets. 

A lot of people I've spoken to with Crohn's have talked about having anxiety and panic attacks when they've been out somewhere and needed to use the toilet and there isn't one around. I personally have avoided certain places for years because I know that there is no toilet nearby.

Several weeks ago, my partner discovered a fantastic application on his iPhone called "Toilet Mate" which using GPS will tell you every public toilet within a 5 kilometre radius. This has got to be a Crohnie's dream app. I've tried it out and it is brilliant. If you have an iPhone (and live in Australia) I would recommend you give it a go.  

I don't have an iPhone. My mobile phone is about 7 years old, it doesn't even have a camera, let alone the ability to find me a toilet. Recently, my local council has been advertising in the local paper their "ongoing commitment to increased public amenities" aka building more public toilets. I've noticed them popping up in more and more parks and shopping strips. 

In my local area I know where all the public toilets are because it's my neighbourhood, I'm out in it almost everyday. But it's not like public toilets are advertised. There's no map of them. If I get the urge to go and I'm in an unfamiliar area I usually head for the nearest Macca's because they're generally everywhere. 

But then I thought, if Toilet Mate knows where they are, then there must be a way for me to know where they are. So I went to Google. Google knows everything. Here's what I found:

Find a toilet (Aus), Find a toilet (US), Find a toilet (UK) ~ These are the links to websites where you can find your nearest toilet. You can actually prepare for day trips and outings by finding where the toilets are before you go. 

Sitorsquat ~ This one not only tells you where the toilet is but whether it's worth going to. It allows you to rate the toilet too. 

SatLav ~ If you're in Westminster text the word "Toilet" to 80097 to receive an SMS of the location of the nearest public toilet. 

MizPee (US), Toilet Mate for iPhone (Aus) ~ Applications for your mobile phone to instantly locate the nearest toilet on when you're on the go and... well need to go!

So there you go. I hope this is as helpful to you as it has been to me. 

Turmeric can reduce inflammation of bowel

I found an article in British Journal of Nutrition on some studies that are being done in India. I tend to avoid spices in my diet but maybe I'll try adding a little Turmeric to my food and see if it makes a difference. 

Turmeric can reduce inflammation of bowel

Sydney (IANS): Curcumin, the major yellow constituent of turmeric powder, considered auspicious in India, also reduces inflammation of the bowel.

This discovery may pave the way for diet-based treatments for people suffering from the genetic form of Crohn's disease.

“Crohn's disease, a form of inflammatory bowel, can be aggravated or relieved by the sufferer's diet,” said Christine Butts of Plant & Food Research.

“However, due to the number of genes involved, different people with different disease genotypes can be affected by different foods, so there isn't a 'one size fits all' solution."

"Only by systematically linking particular components to effects on the specific genotype can we get a true understanding of the disease and how to treat it,” Butts added.

“This finding means that some people with Crohn's disease may benefit from eating turmeric, but this is entirely dependent on their genetic makeup. Others may not get any benefit, or may even have a severe reaction. However, we are one step closer to understanding this disease and how to best control it with diet."

“In diseases with complex genetics, such as Crohn's disease, understanding which genetic variants are affected by which food compounds is important in knowing what to avoid in the diet," says Kieran Elborough, acting general manager, Food Innovation at Plant & Food Research.

The primary aim is to develop gene specific foods targeted to preventing, improving and curing diseases, said an Auckland University release.

The results of the study were published in the British Journal of Nutrition.

Colonoscopy joke

A physician claims these are actual comments from his patients made while he was performing colonoscopies:

• "Take it easy, Doc, you're boldly going where no man has gone before."
  
• "Find Amelia Earhart yet?"
  
• "Can you hear me NOW?"
  
• "Oh boy, that was sphincterrific!"
  
• "Are we there yet? Are we there yet? Are we there yet?"
  
• "You know, in Arkansas, we're now legally married."
  
• "Any sign of the trapped miners, Chief?"
  
• "You put your left hand in, you take your left hand out. You do the Hokey Pokey ..."
  
• "Hey! Now I know how a Muppet feels!"
  
• "If your hand doesn't fit, you must acquit!"
  
• "Hey, Doc, let me know if you find my dignity."
  
• "You used to be an executive at Enron, didn't you?"
  
• "Could you write me a note for my wife, saying that my head is not, in fact, up there?"
  

Famous people with Crohn's Disease

I googled "celebrities with Crohn's". The results were really suprising. I'm amazed at how many famous sports people have crohn's. I don't know about you, but I certainly wouldn't be able to cope with the rigorous training schedule most of these professional athletes undertake. Anyway here is the (by no means definitive) list...

(from Wikipedia)

The following is a list of notable people diagnosed with Crohn's disease.

• Anastacia, an American pop singer.
  
• Allister Carter(Ali Carter), a snooker player. 
  
• Claire Chitham, a New Zealand actress.
  
• Chris Conley, lead singer and guitarist of the band Saves The Day. 
  
• Lew DeWitt, an American country music singer and composer.
  
• Kevin Dineen, a former professional ice hockey player.
  
• Shannen Doherty, an American actress.
  
• Dynamo, an English magician.
  
• Dwight D. Eisenhower, the 34th President of the United States.
  
• David Garrard, an American football player.
  
• Carrie Grant, a British celebrity vocal coach.
  
• Theoren Fleury, a professional ice hockey player.
  
• Nicky Hopkins, an English pianist and famed session musician
  
• Derrick Jensen, American author and environmental activist
  
• Jeremy Mansfield, a South African radio host.
  
• Mike McCready, the lead guitarist of the American rock band Pearl Jam.
  
• Thomas Menino, the current mayor of Boston, Massachusetts.
  
• Mark Millar, a notable Scottish comic book writer. Best known for the Marvel Comics series The Ultimates and Civil War.
  
• Mary Ann Mobley, was Miss America in 1959.
  
• Heather O'Rourke, child actress, deceased.
  
• Daryl Palumbo, the lead singer for the bands Glassjaw and Head Automatica
  
• Beth Orton, an English singer-songwriter.
  
• Joe Rogan, an American Comedian and Actor. 
  
• Jerry Sadowitz, a Scottish comedian.
  
• George Steele, an American professional wrestler.
  
• Ken Stott, Scottish actor. 
  
• Mieczys?aw Weinberg, a Polish Jewish composer.
  

Steve Redgrave also has UC. That blows me away, he won gold medals at FIVE separate Olympic games.

These famous people had ostomy bags. I'm sure there are 100's more but it's not really the kind of thing a celebrity is going to talk about.

• Vice President Hubert Humphrey
  
• President Dwight Eisenhower,
  
• The Queen Mother Elizabeth of Great Britain 
  
• Moshe Dayan, former Defense Minister of Israel also had an ostomy.
  
• Rolf Bernischke, ex-kicker for the San Diego Chargers has an ileostomy.
  
• Senior PGA Golfer Al Geiberger.

Up, Butt, Coconut

While surfing the net, as I frequently do, I came across these funny cartoons. I can relate, I'm sure you can too.






This last one is my gift to you. Enjoy!

Lolcat Saturday

I found this at icanhascheezburger. Brilliant website. Enjoy.

Drink this please...

I wonder what kind of kid says "when I grow up I want to be a gastroenterologist. I want to immerse myself in the malfunctioning bowel, the deseased digestive system, the inflamed intestine. I'll be up to my elbows in it, it'll be sweeeet." I don't know why they do it, but I am glad they do it. I appreciate the efforts of my doctors, and despite my recent whining, I do feel I'm in good hands. I know there are people out there who really are "up to their elbows in it" looking for a cure, finding better treatments and genuinely helping the cause and to them I say Harrah!

But...

For the last 10 days I have been in hospital. I have been poked and prodded in every which way imaginable. Why is it that every single investigative procedure for Crohn's involves drinking large amounts of something incredibly vile and abstaining from using the bathroom whilst lying perfectly still inside a loud, uncomfortable machine? Seriously, a small salad makes me run to the toilet in pain, that's kind of why I'm here, What do you expect the effects of 3 litres of a laxative laced contrast will be? One of the research fellows who had the pleasure of explaining the colonoscopy procedure said "You shouldn't feel to much discomfort..." Um Houston...we have a problem.

So, for all those people out there wasting time on bullshit research like Are Fish Stupid? Is chocolate better than kissing? and Is Michael Jackson Troubled? put that rubbish aside immediately and start making this scenario a reality:

"Welcome. We really need to do some tests to establish the severity of the disease activity in your illiem. Now, I wont lie to you, during these tests you will be terribly comfortable. We will ask you to drink a small amount of this scrumptious liquid while we give you some drugs that will make you feel heavenly. The test will be brief and afterwards you can expect to feel a little prolonged euthymia"

Ok that might be pushing it a little, but what about making the glycoprep for colonoscopies taste a little less...vile, and do we really need to injest 3 liters of it? How about a cushion on the concrete slab of the MRI and a oxycodone for when we get home and the fun really begins? oh and yes, I want total anastesia during the colonoscopy thanks.

Weird & Wonderful toilets ~ 1

I received this via e-mail and after checking on snopes.com that it was in fact a real toilet and not another one of those made up things that makes it's way around the internet, I decided to share it! I'm sure you've all seen this by now, but it's worth posting anyway.

These are pictures of a real public toilet in Switzerland.

It's made entirely of one way glass, so from the outside it looks like a mirror but from the inside you can see everything. I understand that London also has one. The concept was born from the ideas that we generally don't want people to see us in certain intimate situations, like using the toilet, and that ultimately we are all voyeurs. 

Interesting. I'm willing to bet that this particular toilet is used for some other "intimate" activities more often than not.

Commencing Humira

I think I've been on almost every medication approved (and some not approved) for Crohn's Disease at one point or another. I wrote this in 2007 when I started Humira (adalimumab) for the first time.

Humira, a new hope?

My doc decided that Humira was a better option then Remicade because we only get one shot at remicade. Also, I can give it to myself, rather having to have infusions at St V's. So he sent me away saying that the research Nurse would contact me in two or three days.

I went home and waited.

and waited.

and waited some more.

Four and a half weeks later I finally got a call and I headed off to St V's where the nurse began to explain all the potential side effects and benefits of Humira. I should mention that the information leaflet inside the pack is HUGE. It's this double sided A3 sheet with 6 point font writing. It's the encyclopedia of Humira.

She then calmly informed me that I would be receiving not one but FOUR injections and that I would be giving three of them to myself. Then she took them out of the box and laid them out in front of me.

"Yikes! I don't think I can do this" I thought feeling queasy all of a sudden.

I had tried to find a copy of the instructional DVD on youtube to save me explaining it all but the best I could find was the one imbedded on the humira website which you can watch here

So she did the first one while I watched. Wipe skin with an alcohol swab. Pinch the skin. Hold the syringe like a dart. Stab it in. Plunge slowly. Pull it out. Throw it in the sharps container.

Then it was my turn. She talked me through it. Wipe skin with an alcohol swab. Pinch the skin. Hold the syringe like a dart. and then I hesitated. This was the hard part. I took a deep breath and...hesitated again. The nurse laughed, "The first one's the hardest". I sat there looking at my pale skin and the sharp needle. Maybe I really couldn't do this. I felt the queasiness returning. It had to be done. There was no other option. I counted to three and it was done. It was in. I continued following her instructions. Plunge slowly. Pull it out. Throw it in the sharps container.

It actually turned out to be no where near as bad as I thought it would be. Under the watchful eye of the nurse I managed to plunge a 20mm piece of steel under my skin and inject myself not just once but three times. She warned me that it would hurt, that the skin might swell up and that I might have flu like symptoms for two or three days afterwards, none of which happened, thankfully. Although I did have a killer headache the day afterwards.

So today I had to give myself the injections at home. On my own. With no help. I psyched myself up, got out my sharps container, alcohol swabs, cotton balls. I washed my hands thoroughly and was ready to roll. It was at this point I realised I hadn't taken the syringes out of the fridge yet. The nurse's words or warning echoed in my ear "It'll hurt a lot if the Humira is cold".

So I waited fifteen minutes and then decided it was now or never. The first one stung. I think I plunged it too fast and the Humira was still a bit cold. I made a point of plunging the second one much slower and it didn't hurt at all.

I have the next dose in two weeks time. From then on it's just one dose every fortnight. It's probably still to early in the show to know if it's helping at all. I feel better but it could be pure determination. I really want this to work.

Reducing pain from Crohn's Disease

NB: This is an article I wrote for Helium a few years back. It's a little bit generic and needs some fixing up, but it does cover the basics so I thought I'd re-post it here.

Reducing pain from Crohn's Disease

Crohn's disease is an inflammatory bowel disease that can occur in any part of the digestive tract from the mouth to the anus. While the cause is unknown it is thought to result when the immune system attacks the body causing inflammation and swelling. Pain results from various types of disease activity, from side effects of medications, from muscle strain, from complications, from surgery, from investigations and more. The most common types of pain are that from the swelling caused by the inflammation and obstructions resulting from scar tissue that builds around the intestine causing narrowing.

Crohn's disease pain can be anything from a mild discomfort from bloating to cramping, sharp stabbing pain, dull achy pain right up to an intense pain that comes in waves and includes nausea and vomiting.

Pain relief comes in many forms, there are those that provide instant relief such as medications and ice packs/heating pads and those that aim to reduce pain progressively over time such as guided imagery meditation and yoga.

Painkillers are probably the first thing to come to mind when thinking about pain relief, however not all painkillers will relieve the pain associated with crohn's disease. In fact some types of painkillers can actually increase the symptoms causing the pain. Likewise as the condition is chronic, dependence on painkillers can become a reality.

Narcotic pain relievers such as codeine or Vicodin can slow down the bowel. This can be helpful in cases where diarrhea is severe however they can mask symptoms of disease activity and can be addictive. Avoid non-steroidal anti-inflammatory drugs (NSAID) such as aspirin and ibuprofen, as they can exacerbate the already inflamed intestines. NSAID's can worsen the bleeding in the small bowel and can contribute to the development of ulcers. Always consult your doctor before taking any painkiller and consider the short and long term effects of using pain relief medications.

There are many natural therapies, which can aid in the reduction of pain, as Crohn's disease is a chronic condition it is well worth considering alternative methods of pain relief to drugs.

Cold packs/Heating pads are an effective and natural method of pain relief. Like medication they provide instant relief at the time of pain and are especially helpful for the cramping pain and muscle ache associated with crohn's. These can also be combined with aromatherapy.

While there is still much debate in the medical world about the impact of diet on Crohn's disease, anyone who has the disease will quickly tell you that diet makes all the difference in the world. One of the most efficient ways to manage the pain associated with Crohn's disease is to monitor and limit foods that can exacerbate symptoms.

There is no specific diet for Crohn's disease. Many sufferers believe that limiting specific types of foods such as starch or sugar have a positive effect on the symptoms. Others have found that low fat, low fibre diets decrease the likelihood of flare-ups. Low-residue diets are seen to be gentle on the bowel and are often used during acute phases of the illness.

Most people agree that avoiding things such as alcohol, caffeine and nicotine that stimulate the bowel and aggravate symptoms and increasing things such as yoghurt, and fish is a good start. A pain journal is a good way to monitor pain and correlate possible exacerbating foods.

Gentle massage has been used for centuries as a way to soothe muscles, relieve pain, and reduce inflammation and swelling. In many cases massage is as effective as medication for pain relief. Massage can be used at the time of pain for immediate relief or on a regular basis as part of a long-term management plan.

Progressive muscle relaxation is a method whereby each muscle is relaxed one by one and can aid in both the immediate reduction of muscle pain and spasms and more general pain reduction over time. It takes anywhere between 15 and 30 minutes to perform and is very effective.

Living with conditions such as IBD can lead to feelings of depression, anxiety and hopelessness. Meditation, the use of guided imagery and relaxation techniques such as breathing exercises have been a proven method of relieving pain. These techniques also aim in improving the emotional aspects of living with chronic pain. Likewise participating in gentle exercise such as Yoga or Thai Chi can be extremely beneficial.

Pain relief is a very individual thing, what works for some may not have any effect for others. It's important to try as many methods for reducing or eliminating pain as possible to develop the best overall management plan and ALWAYS discuss pain relief with your doctor.

Explaining Crohn's Disease

NB: This is an article I wrote for Helium several years ago and thought it would be a good first post here. 

Explaining Crohn's Disease

Crohn's Disease, a type of Inflammatory Bowel Disease (IBD), is a disease of the gastrointestinal system that can affect any part of the digestive tract from the mouth to the anus, but most commonly occurs in the small intestine, terminal ileum and/or large intestine.

It was named after Burrill Bernard Crohn, an American gastroenterologist, who discovered the disease in 1932.

While it can affect people of any age, gender or ethnicity, onset is usually late teens to early adulthood. It affects men and women equally and is more common among people living in developed countries.

The exact cause of Crohn's disease is currently unknown. It is believed that the disease results when the immune system attacks the body, causing inflammation and other symptoms. Some believe that the disease may be caused by strains of mycobacterium, which has been found to be present in many people with Crohn's disease, but not present in those with Ulcerative Colitis (another form of IBD) however researchers are unable to confirm this as the cause.

Heredity is thought to play a role as approximately 1 in 5 people with Crohn's disease have a relative with the disease. More recently a gene called NOD2/CARD15 has been associated with Crohn's disease. Mutations in this gene have been linked to high rate of relapse post surgery and the early onset of symptoms.

The symptoms of Crohn's disease are wide and varied, depending on which area of the body is affected, however the most common symptoms include abdominal pain/cramping, diarrhea, blood in stools, ulcers, fissures, weight loss, loss of appetite, nausea, fatigue, fever and sometimes constipation.

There is currently no cure for Crohn's disease. Treatment is typically via medications that aim to induce the remission of symptoms. Corticosteroids are one of the most common and widely used drugs. They are effective in suppressing the inflammation in the intestine and other associated symptoms however they have a number of significant side effects. Sulfasalazine is an older drug, which was one of the first alternatives to corticosteroids, however it too has a number of side effects and is not suitable for people with an allergy or intolerance to sulfa. 5-ASA drugs have fewer side effects and are site specific, depending on where the active disease is located will depend on the type of 5-ASA. Immunomodulators aim to suppress the immune system, specifically the CD4 cells and are generally prescribed to steroid dependant people.

While diet does not cause Crohn's disease, some food and beverages can certainly aggravate the symptoms. It is generally thought that foods high in fat, fiber, caffeine or lactose can increase the occurrence of symptoms, particularly during a flare up. Many people find that a low-residue and/or gluten free diet are gentler on the body and tend to trigger flare-ups less.