Poo in a box

First things first, 'Poo in a Box'. It's a thing. I bought it as a shit (sorry!) gift for my brother while we were in the UK because... well, come on, it's 'Poo in a Box' and it sure beats the "all I got was this lousy keyring" gift. Basically its various seeds encased in elephant, reindeer or rhino poo. You plant in the garden, give it some TLC and it grows into a plant that you can forever tell people came from the crappiest (you can slap me for that) gift ever. I'm still shocked I managed to get this through customs. All I can say is that having a toddler on the verge of tantrum shooting "Don't mess with me buddy" death stares at everyone can only help you.

Poo in a Box

I've neglected this blog. I'm aware of it. I want to blog more often and I have about 25 to 30 draft blogs waiting patiently to be finished and posted and I swear to myself that I'll look them over on the weekend and blog at least one. The weekend comes and goes and I don't give the blog a second thought and the cycle repeats itself over and over again.

The problem is that this is a blog about my life with Crohn's Disease and I just feel like I don't really have anything else to say about Crohn's Disease. Aside from the periodic flare-up I'm doing ok. I have an issue with a stricture that continues to be a pain in the arse (I'll slap myself for that one!) but otherwise it's business as usual.

I could write superficial pieces about various medications or new treatments available that I've researched from the net, but honestly, if you're looking for information about these things you should really speak to your doctor not seek out the opinions of random bloggers. There is so much misinformation and personal experience stated as fact that I'm personally pretty wary of anything I read on the internet. You should be too (except when it comes to Poo in a box, that's the real McCoy).

Also I don't want anybody looking to me as though I'm some kind of expert just because I can regurgitate stuff I find via google. The only thing I'm an expert on is my particular brand of Crohn's as it relates to me. That's a pretty small area of expertise.

Lack of direction, not lack of time is the problem. We all have 24 hours in a day. ~ Zig Ziglar

I like the blog, I don't want to kill it and I definitely don't want my Crohn's to start going ballistic just so I'll have some writing fodder. Given all that it doesn't really leave me any where to go...
So I guess the blog is on hiatus... unless I just put the Crohn's side of it all on hold an blog about anything that takes my fancy but that feels a bit unfocussed and aimless and to be honest all that scope just leaves me staring at a blank screen wondering what to say. I guess I'll ponder it awhile.

Becoming Complacent

In a recent conversation with a woman I am just getting to know I mentioned in passing that I had this transfusion thing next week and wouldn't be able to do anything on that day. She looked horrified, then deeply concerned as I explained what it was and how it worked. I realised that going into hospital every 8 weeks for a transfusion is not normal to most people.

This woman patted me on the hand by way of offering support? condolences? sympathy? and stated that needles were horrible and she couldn't imagine anything worse than having to have one stuck in your arm for a whole day every two months. Then she actually shuddered at the thought.

I see it a bit differently.

Not too long ago I was about as sick as I’ve ever been. I remember telephoning my specialist every day in tears, begging him to admit me (which he did after five days). The surgery I'd had a year earlier had made things worse instead of better. I was in more pain than I ever though possible and could not go more than 20 minutes without needing a toilet including having to get up 6 or 7 times a night. 

After two days of observation, the doctors were all in agreement. Medication wouldn’t work. There were too many ulcers, fissures and strictures and they were too widespread to operate. The only solution: Colostomy bag.

I cried for a week. I pleaded. Anything, absolutely anything but THAT. 

Eventually after three weeks in hospital on high doses of steroids, daily injections, humiliating and excruciating enemas, a couple of strictoplasty procedures and a whole lot of begging on my behalf, they decided to try Infliximab. They weren’t really convinced it would work since none of the other similar class drugs had worked. I guess they just took pity on the poor sad creature who was desperately clutching at straws.

“There’s every reason to believe this will work.” I must have uttered that phrase 60 times a day to everyone who would listen, oblivious to the doubtful looks and words of caution about getting my hopes up. It was too late for that, they were already way the hell up there, it was going to work. It just had to. And work it did. Infliximab seemed to work from the first transfusion. Sometimes I wonder if will power and pure determination is enough to make medications do their thing.

Fast forward to today and I am probably as close to remission as I'll ever get. There's been no talk of colostomy bags or surgery. So to me, these transfusions are far from something horrible or a reminder that I have an illness. Infliximab saved my life and I am very lucky to have these transfusions every 8 weeks.

Every time I have the transfusion I’m reminded of where I was and how far I’ve come. I’m reminded of how bad things have been and that they can easily be that bad again and I’m thankful that, in this moment, I’m healthy. It reminds me that I am alive and well and that things are good and I come away from it feeling revitalised. 

Food for thought

For a Crohn's blog, I haven't really talked about Crohn's much in the last few months. Mostly because there was nothing to say. Until yesterday, when the shit hit the fan. My thoughts are a little all over the place due to fatigue and pain associated with a partial blockage so I may divert on a few tangents before arriving at my point, if I arrive there at all. Bear with me.

I've spent a lifetime trying to make sense of the intricate relationship between diet, food, body image, self-esteem, exercise, health and illness. Reconciling what you want (cake, being 'skinny', lounging around) with what you need (balanced diet, healthy body, exercise) knowing that they're almost never complimentary. It's a complex balancing act even before you throw in complications like health conditions, allergies or intolerance's and preconditioned ideas. I'll probably spend the rest of my life trying, in vain, to wrap my head around it.

As a kid I had Asthma. I learnt very early on to associate physical exercise with pain, discomfort and fear since every time I exerted myself I wound up struggling to breathe for hours. Despite the Asthma now long gone, those early lessons are so well ingrained that as an adult I have to consciously and deliberately work at reprogramming my thinking. I almost always choose the path of least exertion.

The party line in the medical world consists of sentiments to the tune of: The cause of IBD is unknown and there is no evidence that dietary factors play a role. No role at all, although "What have you eaten?" is among the first questions medical staff ask in Emergency after a blockage or extreme flare-up and they always wind up referring to a dietician.

Everything you think you know about a healthy lifestyle doesn't apply when you have Crohn's Disease. Fresh fruit, green leafy vegetables, high fibre cereals, three squares a day, these things will kill you or at least make life pretty intolerable. Walking stimulates the bowel and is something you really want to avoid during a flare-up. It's a topsy turvy world where the right thing is all wrong and the wrong thing is ok.

Now that she has started solids, I have to somehow teach Lil' Edges about healthy eating and I am the least qualified person to do this. Aware that she's more likely to take in what she see's rather than what she's told, I've been attempting to role model a more healthy style of eating. Consuming fresh fruit with her in the morning seemed ok for a week or so until the tell tale stomach pain arrived Saturday night.

Sometimes you eat something and you know all about it before you've even put down the fork. It's that way for me with full fat milk. Other times the offending food is a lot more cunning. Fruit for example, eat a peeled apple once, even twice and I'll probably get away with it. Everyday for a week and I find myself here in doubled over town. Then there is food that will be fine this time and completely kick my arse the next time, like eggs or cheese. Other things, which by all rights, should be completely off limits like chocolate and coffe I have no issues with.

There's other stuff that comes from not getting all the vitamins and minerals your body needs. Multiple bowel resections have left me perpetually low in iron and B12. No amount of eating red meat or oily fish will ever replenish the stores and it leaves me with regular headaches and tiredness and difficulty with concentration.

Because none of the normal rules apply and 'diet plays no role' there's no guide to managing Crohn's Disease. Sure, there are books about it and there are individuals stories about their experience but at the end of the day we each have to figure out our own disease management ourselves mostly by trial an error. I learnt most of my lessons the hard way. This week I was reminded that I am not normal and my system will never be normal no matter how much I think I am in remission.

I am (mostly) ok with that.

Postpartum exercise and keeping the Crohn's monster away

"I'm sick and tired of always being sick and tired." Anastacia, US singer, Crohn's sufferer.

So whatever magical protective hormones that were racing around my body during pregnancy to keep the Crohn's at bay have left the building and the result is a Crohn's monster that's more than slightly acting up. All the usual symptoms have rolled in: stomach pain, urgent need to go, diarrhoea, fatigue, loss of appetite.

I had my Infliximab transfusion earlier this week which will go a long way toward taming the beast, but I know from experience medication alone only goes so far. Diet and exercise is a huge factor in what keeps me well. Sounds easy enough, you'd think. Except with no appetite I forget to eat. Most nights dinner time arrives and I've only managed a cup of coffee and cupcake (they go together, what can I say!?!) and exercise, well apparently after giving birth you're not supposed to do anything physical, or so say the experts.

Physiotherapist: No lifting anything heavier than the baby. You shouldn't be doing any cardio for three months and don't even think about running for 6 months.
Midwife: Try light walking at first and then ease back into it with gentle yoga and relaxation exercises after the first few months.
OBgyn: No strenuous exercise for at least 6 weeks. You just gave birth, you need to take it easy.

Sigh. At least we're getting closer. The frustrating thing is that I feel like I can exercise. I'm not sore or stiff. I was quite fit prior to becoming pregnant and exercised well into my pregnancy. Since the delivery I've been doing all the Kegal exercises and lower ab exercises they recommended. I was told it would take at least six weeks to reach the target repetitions, except, I've reached them now at two weeks. Surely, there must be some exceptions to this no exercise rule?

The key to defying medical advice is to keep googling until you find a website that endorses exactly what you want to do (er... don't try this at home kids and if you do, always, ALWAYS ignore everything said on yahoo answers). So after careful perusing of the interwebs I stumbled across this page which states "General guidelines are as follows: If a woman exercised regularly for 8 to 12 weeks before delivery, she can safely resume moderate aerobic exercise 10 to 14 days after an uncomplicated vaginal delivery, or approximately 21 days after a cesarean delivery."

Hallalujah! 14 days after delivery was yesterday. Let's go! I did jump on the cross trainer today. I did 20 minutes and it felt GREAT! I was originally only going to do 10 minutes, but I felt ok so I did another 5 minutes and that felt ok, so I did another 5. I've really missed cardio. I've decided to (try) and be sensible about it. I will aim for 5000 steps per day, that half what experts say we should be doing, with 10 to 20 minutes on the cross trainer every other day and see how that feels. Obviously I don't want to do myself any damage by going in too hard too fast, but at the same time, sitting around doing nothing while the Crohn's Monster runs rampant in my guts isn't going to work either.

Thoughts?

Because there weren't enough challenges...

So, what's low in fat, low in sugar, low in fibre, non-dairy and not a raw vegetable or green leafy vegetable?

Last week I did the glucose test for gestational diabetes and I failed. I now have to go back in next week to do a further test and if I fail that one it means I have gestational diabetes. I've always dreaded the idea of diabetes, mainly because the diabetic diet is completely at odds with my Crohn's diet. Once you eliminate all the non-Cohn's friendly foods, AND the non-diabetic friendly foods... What the fuck is left? Water and Bread?

I never really considered myself at risk of diabetes, there's no family history. My dad had diabetes but that was a result of pancreatic cancer and not a true diabetes. I have a cousin with diabetes, but he is adopted so there is not genetic link. I'm not overweight, I've been fairly active up until the last trimester of this pregnancy, my diet is a well balanced one and I don't have high blood pressure or high cholesterol.

At least with Gestational Diabetes, it typically clears up once the pregnancy is over and with a mere 8 weeks to go, if I am diagnosed it's really just a short term thing. It's something I'll need to be mindful of the next time I get pregnant of course, but for now I guess I just need to take things one step at a time.

After all, it's possible it's all just a horrible mistake.

Fatigue, weight gain, oh joy!

It’s been ages since I’ve written anything and I feel bad about that. I keep meaning to put hand to keyboard but I wind up getting distracted or just run out of time. As it is, I’m writing this when I should be working. Shhh. Don’t tell my boss.

Currently I’m on Methotrexate injections weekly and Remicade infusions every 8 weeks. Most of my symptoms have settled down and things are almost tolerable.

But I am so tired. Really tired. Sleep 16 hours a day tired. I go to bed at 9pm and I get up at 7am and I feel like I haven’t even slept. I walk around with bloodshot eyes and people look at me constantly and ask if I’m ok. Man, it’s always something with me.

Anybody else had this with either Remicade or Methotrexate?

I’m getting regular B12 and Iron shots so I know it’s not that, and thanks to a concerted effort on my part to eat properly most of my other vitamin and mineral levels are ok.

The other thing that happening at the moment is weight gain. Good Lord, I’m averaging 1 kilo a week and if one more person says to me “You needed to put on some weight though” I’m going to put my boxing classes to use and pummel them senseless. Even my GP said it. What nobody seams to under stand is the weight gain from meds isn’t going to stop, when should I do something about it? After I’ve gained 5kgs? 10kgs? 50kg? Or should I get on to it now? I’ve gained about 8kilos since leaving hospital in February, although most of that has happened in the last 2 months. So I have changed my eating habits and get more exercise. I want to avoid getting fat or that will make me depressed and then we’ll have a whole nother set of problems.

Anybody remember what life was like before we got this disease?

Stem Cell Treatment

Stem cell treatment gives hope to Crohn's disease sufferers

Sufferers from the debilitating bowel condition Crohn's disease may be cured using a groundbreaking stem cell treatment, according to the British doctor leading the research.

Initial findings from the world's first controlled trial of the procedure have raised hopes that it could banish the disease's symptoms for many years in up to half of the patients who undergo it.

The pioneering therapy involves "rebooting" the patient's immune system, by first destroying the cells that have attacked it to cause the Crohn's, and then replacing them.

Professor Chris Hawkey, a gastroenterologist at Nottingham University, is leading the Autologous Stem Cell Transplantation in Crohn's Disease (Astic) trial. So far, 15 patients from six European countries, including three Britons, have taken part, though others are being recruited.

"I'm hopeful that half or more of the patients who undergo stem cell transplantation may either be cured or have a long-term remission," said Hawkey.

Hawkey, other specialist doctors and patients involved in the trial will tomorrow meet the chancellor, Alastair Darling, to press for the NHS to offer better treatment across the UK to the estimated 60,000 people who have Crohn's and the 140,000 who suffer from colitis.

Crohn's is a chronic inflammatory bowel disease that causes ulceration and inflammation of the digestive tract. Existing treatments all involve drugs, which help sufferers to control their symptoms, but do not offer a cure. It wrecks lives because its embarrassing and painful symptoms – including diarrhoea, stomach pains, fatigue and weight loss – can mean that those with the most severe form of Crohn's find it hard to go to school or college, hold down a job or plan a holiday.

The stem cell treatment, which takes two years, is very painful for patients, and involves risks including bleeding, infection and a 1%-2% chance of death. The stem cell transplantation is used to kill off the patient's old bone marrow, which produces the harmful cells that cause the Crohn's, and generate new cells.

Original article by Denis Campbell, health correspondent, www.guardian.co.uk

Everly Councilman Charged Says Pot Was Medicinal

A Siouxland councilman who's been busted for possession of marijuana says the system is broken when it comes to helping him and others.

Steve Rank has served on the Everly, Iowa city council for the past seven years. He's also served on various committees and volunteer positions in the town. His battle with Crohn's disease has been about twice as long, and now his position in town is in jeopardy as he tries to find a way to cope with pain.

Steve Rank is on various medications as he deals with his Crohn's disease as well as two herniated disks in his neck. For him it's his only legal option to deal with the pain associated with his illnesses, his main source of pain being the Crohn's, an inflammatory disease of the gastrointestinal tract, a disease that Rank says is both painful and embarrassing.

"Deep, deep horrible pain in my gut, constant diarrhea, going to the bathroom 8 to 15 times a day, couldn't eat food, it got to the point anything that when down, I threw up," says Rank of his symptoms.

Rank says he has used marijuana sporadically over the past 15 years to help ease the abdominal pain and nausea so that he could eat solid foods again. The medications he was prescribed could only do so much for him, and he considers them to be much more dangerous.

"Any one of these drugs here you can die from overdosing," said Rank as he looked over his small arsenal of prescribed medications. "Any one of these drugs here have serious, serious side effects."

Rank says the side effects include abdominal pains, nausea and bloody stool, the same symptoms of the disease they're supposed to treat. Rank says his choice to use marijuana for medicinal purposes puts him in a hard spot since it's not legal to do so in Iowa, plus it makes things difficult as a public figure.

After his arrest for possession May 11, many folks in town aren't sure he should keep his post on the council.

"Any kind of drug used by anybody, whether you're on council or not, is wrong," said Pam Boelman of Everly. "If it's illegal, leave it alone."

"He is a good councilman. What he did was wrong and, gosh, I don't know. If he wants to give it up that should be his choice," said Kathy Watkins, also of Everly.

"There's no reason to have a vote. I think he should do the right thing and step down," said Everly resident Brad Phelps.

Rank says he will plead guilty to the charges and face the consequences, but hopes future chronic pain sufferers won't have to do the same.

"When I was at the jail the deputy asked me 'I imagine you're not going to smoke marijuana again?' and I told him 'well, yeah I am.' And he looked at me and its like 'you took my drug but you did not take my disease,'" said Rank.

Rank met with the Everly city council for the last time Monday night. He decided to hand in his letter of resignation to avoid anymore negative attention to the council and the town, and says leaving was inevitable anyway as he has plans to move out of state in the next couple months.

Currently 13 states allow the medical use of marijuana. Iowa considered legislation on such a measure this past session and will likely discuss it more when they reconvene.

Article posted on kcautv.com ABC9

So, what are your thoughts on Marijuana use in the treatment of IBD?

IBD in the Workplace Survey by CCA

I received this e-mail yesterday from Crohn's and Colitis Australia and thought I'd post it here for others to see and possibly complete. 

Important Survey for all members living with IBD

IBD in the Workplace 

 

Employment stability and security are issues on everyone’s mind in this current climate, and even more so if you suffer from a chronic illness such as IBD. Over the years, we have received many calls from members who were confused about their rights and obligations in the workplace. CCA has heard too many stories from people who suffered discrimination at work due to their condition.

 

In response to this, our 2009 National Crohn’s & Colitis Week Campaign will focus on the workplace, employment issues, and challenges faced by people living with Crohn’s disease or ulcerative colitis. 

To help support this year’s important public awareness campaign, it is necessary for CCA to gather strong, credible data. To achieve this, we have developed an online survey to give our members the opportunity to be heard. 

 

The only participation requirement is that you are over 16 years of age, and have Crohn’s disease or ulcerative colitis. If you are a carer for someone with Crohn’s or ulcerative colitis, please encourage them to complete the survey.

 

The survey can be accessed at http://www.ibdsurvey.com and will take approximately ten minutes to complete.

 

Please complete the survey by Sunday 24th May 2009

Your support is extremely valuable. It is only through sharing your experiences and challenges that we are able to raise awareness and improve the lives and employment opportunities for people living with Crohn’s or ulcerative colitis.

The information gathered from the research will be used to;

·         Raise public awareness through various media outlets

·         Influence employers and governments to establish supportive and fair work environments for people living with IBD

·         Assist with targeting our communication and media campaign

·         Help create an understanding of Crohn’s and ulcerative colitis, and dispel some of the misconceptions.

The survey is completely anonymous, and being completed by our research consultants StollzNow Research. Your answers are covered by the Market and Social Privacy Principles under the Privacy Act and the Market and Social Research Society Code of Professional Behaviour.

If you have any questions about the survey and its purpose, please call Crohn’s & Colitis Australia on 1800 138 029. If you have any technical questions or problems with the survey, please call StollzNow Research on 1800 010 543.

Thank you for your support and participation, your contribution is greatly appreciated.

Australian Crohn's & Colitis Association ABN: 42 082 747 135 

PO Box 2160 Hawthorn VIC 3122 AUSTRALIA Ph: 03 9815 1266

Tired.

I am aiming to blog something everyday, but I haven’t blogged at all the last few days and mainly I put it down to my feeling pretty ordinary. I’ve had Crohn’s since 2001, diagnosed in 2002. During 2002 I was what they term “steroid dependant” which essentially means that the disease only responds to steroids and when the steroids are tapered, the disease flares up again. I was studying at the time and I look back now and wonder how I managed to complete my degree.

2002 marked the beginning of what would be one of the worst years of my life in terms of Crohn’s disease (although this year is giving it a run for its money) and it culminated in my having a resection performed on Christmas Eve. That horrifies most people, the thought of having a major surgery on Christmas Eve, for me, it was much welcomed relief. Anything that would make me feel better.

So following the resection I had three wonderful years of remission. I wish I’d known back then that it was to be short lived; I would have tried to pack a bit more into life. You know make the most of it while I can. When the symptoms re-emerged it was slowly, so slowly that I didn’t really even notice at first. I think that there might have been a little bit of denial in there as well.

Fast forward to now, I have been on so many different medications (which I might talk about in a separate blog) with very little response, even steroids don’t make a whole lot of difference and as if that’s not enough, it appears that I am now having an allergic reaction to Methotrexate. The doctor has given me tablets to counteract the symptoms of the allergy i.e. itching, rash, etc because at the moment the symptoms are quite mild and the benefits of the Methotrexate outweigh the risks of continued use of a medication I’m allergic to.

“But if you go into anaphylactic shock, be sure and go to the emergency dept.” Yep, great advice. I’m not sure what’s more worrying, that some people actually need to be told this or that it’s possible that while watching Grey’s Anatomy I could go into shock.

Anyway I guess it’s on account of this that I’m feeling a little tired and slow these last few days. I have my next Remicade infusion on Wednesday and so hopefully that’ll have me feeling better soon after. My success with this has been limited but I’d be interested in hearing what other peoples experience of Remicade has been.

xx

Book Review: Eating right for a bad gut by James Scala

The New Eating Right for a Bad Gut : The Complete Nutritional Guide to Ileitis, Colitis, Crohn's Disease, and Inflammatory Bowel Disease by James Scala.

When I was first diagnosed I had absolutely no idea about food and how they impacted on Crohn's. I would go out with friends for dinner and order a salad and prawns and wonder why I spent half the night doubled over in the bathroom. Salads are supposed to be good for you right? Seafood provides much needed omega 3 doesn't it? Suddenly all the rules I used to know about eating were thrown out the window and there were all these new rules that I didn't even know about. Every doctor had a different idea about what I should eat, or not eat. Even dieticians are inconsistent in their advice.

It's so confusing. Over time I have learnt what kinds of foods trigger flare-ups for me. I've learnt what foods to eat during the really bad times. I've learnt what foods will give me those much needed additional portions of protein, Vitamin B, D and iron. James Scala's book is the best guide for what to eat with Crohn's that I've ever read. I think that a copy of this book should be given out with every diagnosis. It's that valuable. In the book the author explains how food impacts on the person with IBD. He talks about the nutritional challenges and how to over come them.

There is a section within the book where James Scala talk's about the "Do's, Don'ts and cautions of food selection" This section was a life saver for me in the early days and is something I refer back to even now. My copy of the book is well read, the pages are creased and it lives on my bedside table.

The New Eating Right for a Bad Gut : The Complete Nutritional Guide to Ileitis, Colitis, Crohn's Disease, and Inflammatory Bowel Disease by James Scala.

From the book jacket: "In this completely revised and updated edition of his classic book on treating "bad gut" diseases, Dr. James Scala presents a new dietary plan that has been proven to help inflammatory bowel disease go into remission. Scala firmly believes that nutrition is preventative medicine and food is the vehicle of its practice. His drug-free food and lifestyle program offers relief from the pain and embarrassment of living with these mysterious and chronic ills while providing reassuring step-by-step guidance..."

Definitely worth checking out.

Colonoscopy

A colonoscopy is one of the most common procedures for diagnosing and evaluating Crohn's Disease. Anyone with any kind of intestinal disorder will be more than familiar with it. I for one insist on being knocked out for the procedure, but I know other people who like to be awake to watch the monitor as the camera snakes it's way through their large bowel. I know of others who've been given a DVD of the procedure, which I find both intriguing and weird.

So today I decided to see if I could find some footage of the colonoscopy. I know, I seriously need to get a hobby.

Explanation of a Colonoscopy


CSIRO Colonoscopy Simulation Rendering

This is obviously not real. I can pretty much guarantee my intestines aren't that pristine.

Actual Colonoscopy

This is what a healthy colon looks like.

There are plenty more but most of them are pretty disgusting, so I'll let you trawl through YouTube for colonoscopy's to your hearts content.

Economic costs of IBD in Australia

The Australian Crohn’s & Colitis Association (ACCA) released a report on the economic costs of Inflammatory Bowel Disease in Australia and the results are quite astounding. Even though the report is almost two years old now, it’s still relevant and makes for an interesting read. Below is the two page summary report, but you can read the full report on the ACCA website.

From the two page Summary report into the Economic costs of IBD in Australia:

Basic facts about IBD in Australia
• Over 61,000 people have IBD (Crohn’s disease or ulcerative colitis) in Australia
• 28,000 people are living with Crohn’s disease, 33,000 with ulcerative colitis
• Around 776 new cases of Crohn’s and 846 new cases of colitis are diagnosed every year
• Crohn’s disease is more common in females, ulcerative colitis is more common in males
• IBD can be diagnosed at any age, with peak onset between 15 to 40
• Prevalence will increase by 20% for Crohn’s disease & 25% for ulcerative colitis by 2020
• IBD accounts for just 0.1% of the total allocated recurrent health expenditure in Australia

Comparisons
• In any year IBD is more prevalent that epilepsy, multiple sclerosis, rheumatoid arthritis, eczema and schizophrenia
• The burden of disability for people living with Crohn’s disease or ulcerative colitis is comparable to living with rheumatoid arthritis, severe asthma, or the amputation of an arm
• Disability due to IBD is more severe than living with Type 1 diabetes or epilepsy

Total economic costs of IBD
• The economic cost of IBD in Australia is $2.7 billion, which includes a total financial cost of $500 million and a net cost of lost wellbeing of $2.2 billion
• Loss of productivity accounts for $266.7 million (55% of total financial cost)
• Health system costs are $79.0 million (16%) and carer costs $23.5 million (5%)
• The loss of taxation revenue and government payments total $91.3 million (18%) and out-of-pocket and funeral expenses are $36.2 million (7%)

Areas of greatest financial cost:
• Lost productivity accounts for more than half the $500 million financial cost of IBD.
• The productivity costs of $266.7 million include absenteeism, workplace separation and early retirement and premature death
• The estimated annual costs of absenteeism for people with IBD are $52.3 million ($8.2 million incurred by employees and $44.1 million by employers)
• The annual cost of lost earnings due to workplace separation and early retirement from IBD is $204.2 million
• Premature death accounts for $10.2 million annually

Areas of greatest challenge
• Community awareness levels are not high, IBD is often confused with irritable bowel syndrome (IBS)
• Stigma is often associated with IBD, due to the symptoms
• Late diagnosis and inappropriate investigation and management are substantial problems
• The cost of pharmaceuticals can be prohibitive, forcing some patients into surgeries that might otherwise be avoided
• Long-term impacts on employment prospects can lead to inadequate leave entitlements and superannuation
• There is little employment protection against redundancy and demotions and poor information and support for employers and employees
• Currently there is no public funding of community based delivery of support services for people with IBD – ACCA relies on donations, sponsorship and membership fees to provide services
• There is a need for more research into the ‘cause, care and cure’ of IBD. Currently research accounts for just 1.1% of 0.1% of the health budget
Report Recommendations: A National Strategy
• Increase community awareness to help understanding of IBD and reduce stigma
• Improve education programs to assist earlier diagnosis and management
• Provide better access to latest pharmaceuticals including biological therapies
• Improve health services, especially access to IBD specialists and public sector treatment
• Workplace education programs to help keep people at work and counter discrimination
• Greater support services for people with IBD, their family and carers
• More funding for research and development to further investigate the epidemiological observation that the incidence of IBD is increasing

About ACCA
• The Australian Crohn’s and Colitis Association is the peak body representing people with inflammatory bowel disease in Australia
• ACCA’s mission is to support the Crohn’s and Colitis community with a focus on confidential support programs including education, advocacy, counselling, increasing awareness and generating and utilising funds for research and support
• ACCA’s Information Line receives more than 1000 calls a year
• Around 2000 people attend ACCA IBD Forums around Australia ever year
• ACCA is a registered not for profit national organisation funded entirely through membership fees, donations and fundraising activities.
• ACCA does not currently receive financial support from either the state or federal governments
• Donations are tax deductible
• For more information about ACCA visit http://www.acca.net.au/ or call 1800 138 029

Space age bathroom

Last week I was in the CBD. It was a Wednesday and you know what that means? That's right it's my day off work with no pay where I run round like a chook with it's head cut off seeing doctor's, getting injections etc etc etc. I have a standard 9:30am appointment with my GP for the Methotrexate injection which is good because it forces me to get up and get moving while the day is young. It's also bad because it forces me to get up and get moving when I'd rather stay in bed.

Since I'd recently been stimulated by K-Rudd* I decided to splurge on a box of Haigh's Chocolates. As usual the CBD was packed and busy. I eventually found a park a million miles from where I wanted to go. Of course the moment I parked the car I realised I had to go to the toilet. LIKE RIGHT NOW. There was one of those space age, fully automatic, self cleaning restrooms (yes I said self cleaning - They actually exist, go figure. Although a home version doesn't as yet). But whatever, a bathroom is a bathroom so in I went.

As soon as the door closed and locked behind me, I threw my bag and coat up on the hook on the wall and raced over to the loo, dropping my pants as I did so. Sat on the loo I breathed a huge sigh of relief. That was a close call. It was then that I became aware of a soothing male voice which was coming through a speaker in the wall.

"Welcome" The voice said. "You have 10 minutes to use this facility. After this time the door will open and the self cleaning process will begin" Huh.... wait... what? Did you say 10 minutes? That's a lot of pressure for a Crohnie, I'm not sure I can meet those expectations. All of a sudden I felt quite uneasy. The door opened out facing the road at a set of traffic lights.

I was quite sure that in 9 minutes some poor unsuspecting driver is going to get an eyeful of me, on the throne, pants around my ankles, panic-stricken look on my face. I was also quite sure that said driver would have a camera phone handy and would have more than enough time to pull it out. I could see the youtube video as clearly in my mind.

Well, just as you can't hurry love, you can't hurry this particular activity either. I looked around for the toilet paper and at first I couldn't see it anywhere. I always carry some in my bag so I wasn't to concerned. It was about this time that I noticed the signs that were all over the bathroom.

Too bad if you don't speak English. I hit the button for the TP and it came....out....really.....slow.....ly. "Come on you stupid thing." I urged, "Don't you know I'm on a time limit." When it did finally come out, I realised with dismay that it wasn't nearly enough and I'd have to do it again. For the rest of the time I was in there I had one eye on the light, waiting for it to start flashing. When I was done I went over to the magic sink and sure enough as soon as I placed my hands under it, the toilet flushed. the soap and water came out. Again not enough, I had to do it twice more.

As I pushed the button to open the door, the same male voice thanked me, and wished me a good day. I found myself actually saying out loud "Thanks, you too." Luckily no-one was around to hear me talking to an automated toilet.

A few days later I was relaying this story to a friend who far from being amused actually looked like she was in pain. When I asked her if she was ok, she informed me that she too had used one of these new toilets, but she had not made it out in time.

Apparently her mobile had rung as she went in. She chatted away for 5 or so minutes, completely unaware that time was ticking. She hung up used the facility and as she was washing her hands became aware of a beeping noise but dismissed it. The door opened and she fluffed about in the mirror, fixing her hair etc when suddenly the door closed and water spewed forth from every direction. She frantically pushed the button to open the door but it remained firmly shut. Shortly after the water stopped and where before there had been water, now there was air. She likened it to being inside a giant hair dryer. The door eventually opened and she emerged, soaking wet, hair a frizzy mess, vowing never to set foot inside one of those ever again.

*Our Prime Minister Kevin Rudd decided to give everybody $900 to spend to help stimulate the economy. Being the responsible citizen that I am, I did my civic duty and spent mine on a KitchenAid Stand Mixer in Cobalt Blue, Haigh's Chocolates, three books from Borders and various DVD's from JB Hifi :-)

Crohn's Crusaders

I love reading about people who have Crohn's who embark on amazing physical fundrasing feats to raise money and awareness. I like it because some days I struggle to get of the couch, so know other people not only manage it, but go that extra mile encourages me to do that little bit extra. I also find it really hopeful. Having Crohn's doesn't have to mean that your life is over, it doesn't mean that you can't keep on keeping on. Of course I like it because it raises awareness and money, which brings us ever closer to that elusive cure.

So below is something I discovered earlier today and thought I'd share it with you. The article was posted at Melbourne Cyclists website, but do check out Damian's website "The Crohn's Crusaders" too.

Cyclist Damian Watson is about to endure the ride of his life. The 31-year-old South Melbourne man is planning to cycle the 2009 Tour de France route to help find a cure for Crohn’s disease.

Damian, who was diagnosed with Crohn’s disease in 2002, will set off from Monaco on 4 June 2009, one month before the official start of the Tour de France. His ‘Crohn’s Crusader’ cycling team will follow the Tour’s gruelling 3,500km route through Monaco, France, Spain, Andorra, Italy and Switzerland. He hopes his ‘Tour’ will raise much needed funds for research into Crohn’s disease. All funds raised will benefit Crohn’s & Colitis Australia™ in finding a cure for Crohn’s disease.

Both Crohn’s disease and ulcerative colitis are chronic inflammatory bowel diseases. They cause inflammation, ulcers and bleeding in the digestive tract and other serious complications that require surgery. Severe and sudden bouts of diarrhoea and crippling pain can lead to malnutrition and poor growth in children. There is currently no cure and the cause is unknown. Damian hopes to see this change within his lifetime. Damian was diagnosed with Crohn’s Disease in April 2002. He manages the condition as best he can via a healthy diet and regular exercise. Damian is determined to use his healthy-time to make a positive difference and lead the conversation in finding a cure.

“The whole idea of the project is to raise funds and awareness for Crohn’s Disease. I aim to raise $100,000. This amount will fund a six-month research project to help find a cure for Crohn’s,” Damian said. “I aim to raise awareness via the e-newsletter subscribers so that there is a better understanding of the condition and awareness of how debilitating it is to live with Crohn’s disease. While I am determined to complete the course, if I don’t make it, I won’t see that as a failure. As long as I can achieve the above goals I will consider the project to have been a success.”

As part of his mountain training schedule, Damian recently clocked up more than 1000kms in Victoria’s Alpine region. Although describing the climbs around Falls Creek and Mt Hotham as “miniscule” compared to what he will encounter in Europe, Damian said it is good uphill training and assisted his preparation for the event.

Crohn’s & Colitis Australia™ Chief Executive Francesca Manglaviti said: “As Damian gears up for his own amazing challenge, he’s helping to raise awareness about the challenges that people face as they live with Crohn’s disease. He is an inspiration to people living with this illness everyday. Damian is passionate about helping to find a cure for Crohn’s disease and we wish him all the best on the ride.”

Damian has developed the Crohn’s Crusader website www.thecrusaders.com.au where supporters can donate directly to Crohn’s & Colitis Australia™ and register to receive email updates of the Crusaders progress during the ride.

Gut-Dwellers

I couldn't sleep last night. I get this periodic insomnia from time to time, I'm pretty sure it's a side effect of one of the medications I'm on. I lay in bed listening to the array of noises coming from my stomach. If I place my hand flat across the lower right hand side I can actually feel movement inside. I have no choice but to come to the conclusion that miniature gut dwelling aliens have taken up residence in my intestines. I think they are having a party.

Sometimes the noises are really loud and pretty embarrassing. I don't really know what causes it. I mean I know it's just the food I've eaten being digested by my poor diseased innards, but I don't know why sometimes it's so load that people give me funny looks and other times I think that if I lifted my shirt you would probably see the gut-dwellers moving about under the skin and yet other times it's perfectly still and quiet. 

I don't remember having this problem during other flare-ups. Maybe I did, but I just don't remember it. I know in comparison to all the other problems, pain, diarreah, side-effects etc etc etc it's really a fairly minor thing... but when it happens and everyone in the room stops talking and looks at me for a moment before continuing with what they were doing, it doesn't feel as minor. 

:-(

Omega-3 fatty acids may not prevent Crohn's relapse

I've been taking Omega 3 tablets since I was diagnosed. Then about a year ago I was told that only the enteric coated tablets (which are absorbed in the intestines as opposed to the stomach) were useful in the prevention of relapse in Crohn's because stomach acid basically destroys the Omega 3. So then I started taking the enteric coated ones which were three times as expensive, however it seems that it may all be in vain. This article appeared in the Journal of the American Medical Association.

Omega-3 fatty acids may not prevent Crohn's relapse

Researchers from the Robarts Research Institute at The University of Western Ontario in London, Canada have found that omega-3 fatty acids are ineffective in managing Crohn's disease.

Found in fatty fish such as salmon, mackerel, herring and sardines, omega-3 fatty acids have an anti-inflammatory effect and are therefore used in the treatment of inflammatory disorders such as rheumatoid arthritis and IgA nephropathy (a kidney disease).

"A significant amount of time and money is spent annually on alternative therapies such as Omega-3 fatty acids, without strong evidence that they are beneficial to patients with inflammatory bowel disease," said lead author Dr. Brian Feagan of Robarts Research Institute at The University of Western Ontario in London, Canada.

"I encourage Crohn's patients to focus on prescription medications that we know are effective for preventing relapse of disease, such as azathioprine, methotrexate, and TNF blockers," he added.

Researchers said that there is a widespread belief among patients and health care providers that omega-3 fatty acids are effective treatment for inflammatory bowel disease.

They said that the belief might have stemmed from a relatively small Italian research study, published in 1996 in the New England Journal of Medicine, which found a benefit for preventing relapse of Crohn's disease.

"Small, single centre clinical trials often overestimate the true effects of treatment. That's why it is important to conduct large-scale, randomized, multi-centre studies in order to confirm preliminary results," Dr. Feagan said.

The new study included two large-scale trials involving 738 Crohn's patients at clinical centres in Europe, Israel, Canada, and the United States from January 2003 to February 2007.

Both trials showed that the omega-3 fatty acid formulation offered no benefit in preventing relapse in Crohn's disease.

Researchers however found that patients who took the omega-3 fatty acid preparation did have significantly lower concentrations of triglycerides, a high level of which is a risk factor for heart disease.

The study is published in the April 9 Journal of the American Medical Association. (ANI)

Controlling Anxiety: Mapping Anxiety

Working out the root cause of Anxiety can be a difficult task. Anxiety is such an overwhelming and dis-empowering experience that it can all too quickly become another thing to feel anxious about. "I'm anxious about going to the supermarket because I just know I'll feel anxious once I'm there". It may take some time to get to the root cause of your anxiety, especially if you have been experiencing anxiety for a long time. But it's absolutely achievable. Every single one of us has the power to gain control over anxiety without the use of medication.

Things to remember:
1. Anxiety cannot hurt you.
2. You are not having a heart attack
3. It will pass

The first step is to try to map out what's happening when you experience anxiety. Documenting the severity of anxiety, the situation where you experienced anxiety, what you were thinking and what you were feeling. Automatic thoughts are usually driven by the emotions you are feeling and fuel your anxiety. By identifying them and replacing them with helpful thoughts you can start to train yourself to respond differently. Identifying the emotions your feeling will also assist you. Sometimes when my anxiety is particularly intense I feel like I want to cry. It took my awhile to realise that it was, in part, a response to the sheer helplessness I felt whenever anxiety took hold. Once I started to understand my anxiety more, I started to realise that I could beat it and that made me feel less helpless.

So...

Below is an example I completed myself about a year ago. I thought it might be more helpful to see a completed exercise rather than just the template.


Anxiety Map - Identifying unhelpful thoughts.

Score out of 10: 7

Situation: Going to the supermarket on the way home from work because I'd forgotten to get stock cubes.

Automatic Thoughts: I need to go to the toilet, I'm going to have an accident, this is a nightmare, I don't want to be here.

Emotions: Frustration, fear, helplessness

Helpful Thoughts: Getting upset will not help me, I will make it to the bathroom, it's just over there. I am strong, everything is fine.

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.

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.