New Year's Eve

It's December 31st, New Years Eve.

For some, this is just another day in the year, nothing to write home about, nothing to even think twice about. For others it's a good excuse to catch up with friends, have a few drinks and celebrate. Then for others New Years Eve symbolises all kinds of wonderful. It could mark a time for new beginnings and welcomed change, a time on the edge of the future, filled with all kinds of delicious possibilities. New Years Eve could bring with it the promise of a better tomorrow. Now, personally, I've always lived in hope, so I'll admit that I am definitely one of the latter.

I'm hopeful for a cure. I'm hopeful for remission. I'm hopeful for a kitten (wink wink, my love) and mostly I'm hopeful that 2010 brings peace, health, happiness and good fortune to you and your loved ones.

Happy New Year!

"A Medical Condition"

Just prior to Christmas and right smack in the middle of our move, I had to go into hospital for minor surgery. It really was no big deal, I've had it done a few times in the past and by the looks of it, will be having it done a few more times before 2010 is out. I had intended to insert a picture that illustrates where my strictures are, however, Photoshop hates me and I have chosen to keep my sanity rather than argue with it anymore. I have a stricture around the ileum and one lower in the rectum.

The surgery involves dilating a stricture, or essentially stretching out the narrowed bit of intestine. Normally this is nothing major, but sadly in my case one of the stricture's is very low down the large intestine towards the rectum and there is a real danger of tearing it open completely. In fact the surgeon who dilated the ileum stricture back in November refused to do the lower one because he said it was too tricky. They called in the expert. It was funny, when I met him prior to it I said "Just tell me it's going to be shit easy and I won't wake up with a bag." He smiled and winked at me and said "It's going to be shit easy and you 99.99% won't wake up with a bag." good enough for me.

As I was going into theatre, the anaesthetist asked me what kind of pain killers worked for me. By this point I'd already been given the initial 'light sedative' and was happily giggling away at the fuzzy shiny things in the operating room. The next thing I was aware of was being awoken afterwards.

"How'd it go?" I asked the surgeon, who gave me the thumbs up and said "We got it, it went well but don't be surprised if there's a lot of bleeding." With that he gave me another thumbs up and left. Um... ok?

Next someone else came over to me and said "I'm just going to give you something for the pain." Then she injected something into my IV line and within seconds I was feeling all warm and fuzzy and giggly again. "How do you feel?" She asked. "Really quite pleasant" I replied and she laughed. For whatever reason she decided to give me a little more and I fell asleep very soon after that.

In recovery, the pharmacist came and gave me a cocktail of painkillers, which scared the crap out of me. What exactly did they do in there??? Especially when you consider my GP and specialist just refuse to prescribe anything for pain. I was given five different pain killers. Interestingly enough, I had very little pain at all in the days that followed. It's either feast or famine.

Now at least four or five times during this process I'd asked for a medical certificate. My boss had made it quite clear to everyone, that given the holiday period and that fact that we were short staffed, all sick leave was to be accompanied by a medical certificate, as per HR's policy. In recovery, waiting to be discharged I asked after the medical certificate and was told they hadn't left me one. I somehow managed to keep my cool and politely remind her that I needed one for work and that I had asked five times now. She went off and tracked down a doctor.

A few days later as I was filling in my time sheet and preparing to fax off the medical certificate I noticed that the doctor had given me a week off, instead of just the one day which basically meant I either had to take the week off or abandon the medical certificate. To make matter's worse, in the spot where they usually just write "a medical condition" he had written "having an EUA & dilation of a stricture in the anus with probable heavy bleeding for several days post surgery" Jesus buddy, why not just attach my friggin file. He doesn't need my life story!

Sometimes less really is more.

There are no stupid questions

Today I saw a surgeon as follow-up to my recent surgery. She looked up at me after a quick glance at my file.

"You have Crohn's disease." She said.

"Yes." I said. Well spotted.

"Ever had diarrhea?"

"Um, is a bear Catholic?"

"I make it a point never to discus politics with patients" She glanced back at the file. "You've had surgery to dilate a stricture. What was that for?"

It was all down hill from there...

Seasons Greetings...

I cannot believe there is only four days until Christmas and then a week after that it will be 2010. 2010! According to "Back to the Future" we'll have flying cars and hoverboards within the next five years, "Blade Runner" says we'll have off-world colonies in ten years and "Bicentential Man" said we would have robot's that do everything from house cleaning to baby-sitting. Hmmm, I suddenly feel a bit ripped off! At least we're not all wearing identical daggy jumpsuits and infested with aliens.

Unlike most people, I actually loathe this time of year. Really, I hate it with a passion. When I say this to people, they look at me oddly and say "But it's Christmas!" Yes, I'm aware and I detest it all. I hate shopping for presents for people I hardly know. I hate the insane road rage, store rage, car park rage, queuing in line rage and snatching the last item off the shelf rage. I think the whole world needs to take a Valium.

I also hate the having to get together with relatives I only ever see at Christmas. I don't blame them for not calling me, I don't call them either. I'd be happy to just send cards and not get together at all. I hate the pretense. You're not interested in me, I'm not interested in you. Let's call a spade a spade, shake hands and be on our merry way.

I hate the phone calls from people I haven't heard from in years who have had some kind of "revelation" and decide that now they need to rekindle old friendships. This year I've already had three, one who's sobered up (Step 9 - Make amends), one who's divorcing and one who's moving cross country. I'm happy for you, but please, if our friendship was that strong, we never would have drifted apart in the first place. We should catch up. Yes, but we won't because you're an annoying whinger and I'm too paranoid about not being able to find a toilet.

I've lived in small apartments pretty much since I left home as a teenager and there is just no room to put up a Christmas tree. I tried it once and I lost count of the number of times I tripped over it. I was picking up pieces of shattered baubles for months. Now that we're all adults and living in separate house holds, the gift giving has gone from thoughtful gift-wrapped surprises to just asking straight out what each other wants. We're all too busy and just a little bit lazy. I miss the childlike excitement of creeping out to a tree laden with presents on Christmas morning.

But mostly (and this is the nuts and bolts of it) I hate the fact that the whole holiday period is founded on overindulgence of food and alcohol and I can't indulge at all in most of it, let alone overindulge. People just don't get how sick overindulging can make someone with actively flaring Crohn's disease.

Picture it:
The family is sat around the table scoffing down mountains of food like it's their last supper. I politely decline the baked potatoes dripping in butter and garlic.
"Go on, it's Christmas!" someone, who by now has had at least 3 lots of "seconds" and twice as many brandy's, urges me, waving the bowl under my nose. It's torture, but nothing on what would follow if I actually ate them.
"Yes, but my Crohn's monster doesn't care what season it is." I calmly explain. "You don't seem to understand, there are 20 people in this house and only two toilets."

Meanwhile the rest of them pig out on baked potatoes and pumpkin and roast chicken and pork with crackling and apple sauce and ham and turkey. Plum Pudding with brandy sauce and fruit cake and mince pies and custard. Coleslaw and potato salad and lettuce with baby tomatoes. Fruit salad and punch spiked with vodka. Icy cold beers with slices of lemon, scotch with soda and vodka and lime. Prawns and oysters and crayfish and scallops. Crap, now I'm hungry.

With the Crohn's flaring every other day, and the strictures and the obstructions and the aches and the pains my diet is pretty limited. There isn't a whole lot on the Christmas menu that I can actually eat. When you take away the food, the alcohol, the presents and the tree, what exactly is there to enjoy? It's just a major pain in the arse. I joke every year that I'm going to take a holiday to some tropical island and lay on the beach from December 23rd right through to January 3rd. Although I'm photosensitive from the medication so I'd actually be inside looking at the beach through the window!

Bah-Humbug lol!

I'm not really an old scrooge and to prove it, below is my favorite Looney Tunes Cartoon as my gift to you. Enjoy!

Merry Christmas!

The power of expired milk

I seem to be writing an awful lot about obstructions these days and unfortunately, today's journal is not different.

On Sunday night I felt the familiar rumblings and cramping's of an obstruction. With no sick leave left to speak of and Tuesday being a public Holiday here, death was the only excuse for not showing up to work yesterday. I decided to head off to bed early and take a couple of these "Digesic" tablets that my GI assured me would be better than Oxycontin.

Clearly, he's never had strong pain, because they were useless.

I spent the night in and out of cramping agony, dozing in and out of sleep and crawled out of bed in the morning with a lovely set of bags under my bloodshot eyes, a swollen belly and pounding headache. If I didn't know better I'd suspect I'd had a big night on the grog!

Unable to pass anything, not for lack of trying and still in a decent amount of pain. I managed to make it into the office. The cramps continued through the first two morning meetings and then, aware that I had a good hour before my next appointment, I decided to make a coffee. I went into the kitchen, thought nothing of the milk on the counter, made a coffee, poured in the milk gave it a stir and went back to my desk. Half-way through my coffee I came to the awful realisation that the milk was well and truly off.

There is no smiley face that adequately depicts the emotion I felt.

It didn't take long before I started feeling really nauseous. Half an hour later, the gurgling and churning in my stomach was so loud that the woman who sits next to me commented. There was the most intense cramping agonyfollowed by more churning.

By this time I'd already hightailed it to the toilet

and then suddenly, with an almighty burst of pain, the floodgates opened and the obstruction cleared. I'm sure it was the pressure of my insides reacting to the off milk that caused things to shift.

Who would have thought that rotten milk would lead to tears of JOY!

My stomach's still a little sore and swollen and the whole system is being a temperamental pain in the a.. lol but it's bearable. On Monday I have a colonoscopy and an examination under anesthetic and on Wednesday I have my Remicade transfusion.

Yeah, you WISH you were as lucky as me.

I'm tired and cranky and really really angry at my doctors. Why is it that I have to beg and plead for painkillers to manage my actual pain, and get prescribed the most useless crap, while people who use them for recreation seem to be able to get them easily. I'm so sick of this. It isn't fair. I'm not a drug addict. I don't use them to get high. I use them to get through the agony that comes with Crohn's. Do I have to present at the Emergency Department every time I get an obstruction because if that's the case I may as well quit my job and move in there.

Bastards, they make a difficult situation worse. They wouldn't last one day with this illness, but they expect me to do it without help.
It just isn't fair.

Ok. Rant over. (well for now anyway)

NaNoWriMo

The thing about being sick, and not just sick, but crohnically sick (yes that typo was on purpose!) is that it's really easy to become fixated on being sick, recovering, taking it easy and getting better. So much so, that everything else takes a back seat.

I don't know about you, but I have put way too much on hold. I put things off, I procrastinate, I sit idle on the couch while hours, days, weeks roll by without me so much as having started anything.

The National Novel Writing Month (www.nanowrimo.org) is something I've wanted to do for many years but I haven't for a whole host of not very good reasons. Last years excuse was "I'm too sick to focus on anything".

Basically the goal of NaNoWriMo is to write a 175 page novel in 30 days. You start writing on November 1st and aim to pen 50,000 words by November 30th.

I've decided that this year is the year I stop thinking about doing NaNoWriMo and actually do it! I've gone ahead and signed up. Now I just need to come up with a plot... An idea... A main character...

Yikes. What have I done?

So if you don't see me much during November it's because I'm writing my little heart out. Alternatively, if you see me A LOT next month, it's because I'm procrastinating.

BabyLove

I Want Cake

I want chocolate cake. Rich, moist, decadant chocolate cake layered with smooth rich chocolate cream, covered with dark chocolate ganache and decorated with chocolate shavings and curls.


Unfortunately the last piece of chocolate cake I ate caused an obstruction. 12 hours of agonising pain overnight, followed by 3 days of moderate pain and a good week of all the usual symptoms of a flare. The offending cake was a chocolate mint mud cake that I bought for the weekend following my birthday. It was delicious. Thick, dense texture, moist and rich with a subtle minty flavour.

This is not the first time store bought cakes have interacted negatively with my temperamental digestive system. There was my friends chocolate wedding cake with the thick sugar laced marzipan and almond icing. That was some nice dessert. There was the oversized triple chocolate orange muffin with chocolate chips and topped with smooth ganache. That actually made my knees week. Some time ago I partook (is that a word?) of a layered piece of heaven. six layers of light chocolate cake, smooth chocolate cream, black cherries, pure chocolate icing, topped with buttery profiteroles filled with chocolate custard.

woah, I'm feeling a little light-headed...

I believe it's the use of fats and oils that causes all the grief. Store bought low fat cakes are often poor imitations of their delectable cousins. It's almost as though bakers have decided that removing the fats/oils also means removing the taste and quality. We can't have that. So I've experimented at home with low fat cakes and muffins with quite good results, in that they taste delicious and they don't cause my Crohn's to throw a tantrum.

The drawback here is, It means of course, that if I want chocolate cake (which I think we've already established that I do) I have to make it myself.

Sigh. I guess I'll be in the kitchen for the rest of the afternoon...

This is why you're fat...

Somebody sent me a link to this blog on twitter and at first it was funny, then it became a bit sad until finally I felt sick to my stomach... and still I couldn't look away.

I have no idea where on this site to post the link to this blog, but I feel I must post it. I need to share it with you all.

Do healthy people really put this stuff into their bodies?

http://thisiswhyyourefat.com/

I almost feel the need to do a workout after just looking. If food was a criminal offence most of this stuff would come with some serious jail time.

Thoughts?

Splish Splash

Underground chocolate dens

Last night I dreamt that chocolate was outlawed because scientists discovered that it has the same chemical effect on the brain as cocaine and in large quantities posed just as dangerous health risks as other drugs, such as obesity which then leads to heart problems, diabetes and death.

Of course I was horrified, and in no time at all I quickly sourced some underground supply of the delectible substance.

I spent the entire night holed up in seedy, dimly lit, Cocoa dens trying to get a fix. At one point I ran out of money and the dealer just wouldn't extend me anymore credit. I started to get agitated and began alternating between swearing at him and pleading with him.

It didn't take long before a guy that was 8 foot tall and 3 foot wide approached me and said in very James Earl Jones like voice "I think you've had enough" I made one last futile dash for the 80% cocoa stash on a nearby table and was promptly scooped up and thrown out the door. "Don't come around here no more ya bum" He shouted as I crawled out of the gutter.

It was then that I was approached by a rather unsavoury character in a long trench coat. He helped me to my feet and began telling me that he knew where we could get the good stuff. I went with him willingly to another of these Cocoa dens.

The air was thick with chocolate and the room was slightly to warm. It felt like I was breathing pure chocolate. I began to relax. The lights were low and soft music played gently in the background while semi-sleepy people rested about on worn red velvet couches. In the corner of the room was a giant chocolate fountain and littered around the bottom were an array of small children lazily dipping spoons and lollypops into it.

I was told that I could have unlimited access to this chocolate utopian world and all I had to do was sign away the rights to my bank accounts, house and dog. Hypnotised by the dark chocolate crème centres I could see in front of me I scrawled a rough signature on the piece of paper muttering something like, "Sure Bill, whatever you need, man" and took a seat in front of a pile. I began to eat as much as I could. nom nom nom...

I woke up from this dream feeling full, bloated and nauseas. My stomach is sore and crampy. It doesn't seem fair that I should suffer all the ill effects of gorging myself senseless on chocolate when I haven't actually had the pleasure of said chocolate. Where are the Crohn's police. I want to lodge a complaint.

exhale

I think I've forgotten what it's like to feel healthy. I know too many people who have their health without any real effort. While I don't begrudge them this in the slightest, sometimes I do feel a little twinge of envy. 

It's such a delicate balance between eating enough that your nourished, but not eating so much that you feel sick, eating something that's nutritious, but not going to upset the disease. Between getting enough exercise, but not wearing yourself out, taking it easy but not being sedentary. Between having a life, but not overdoing it, having a quiet one and becoming withdrawn...

Generally I do a pretty good job I think. So I'm throwing caution to the wind and having pizza, garlic bread and wine for dinner. Tonight I feel weary of this Crohn's saga.

Everything you never wanted to know about Crohn's Disease

While randomly roaming around the internet, as I often do in moments lacking of any alternative productive activity, I stumbled across Ventedspleen.com. One of the blogs there caught my attention. 

Tom Humberstone is a comic artist and illustrator based in London. His first comic 'Art School Scum' became a critically acclaimed cult hit and his latest book 'How to Date a Girl in 10 Days' won the 2008 Eagle Award for Favourite black and white British comic.

Tom Humberstone's "Everything you never wanted to know about Crohn's Disease" comic is an interesting piece. It's worth checking out.

Predictors of disease behaviour change in Crohn's disease

Using the Vienna classification system, it has been shown in clinic-based cohorts that there can be a significant change in disease behaviour over time, whereas disease location remains relatively stable. Clinical and environmental factors as well as medical therapy might be relevant in predicting disease behaviour change in patients with CD. In previous studies, early age at diagnosis, disease location, perianal disease and, in some studies, smoking were associated with the presence of complicated disease and surgery.

The combined effect of markers of disease phenotype (e.g., age, gender, location, perianal disease) and medical therapy (steroid use, early immunosupression) on the probability of disease behaviour change were, however, not studied thus far in the published literature.

A research article published on 28 July in the World Journal of Gastroenterology addresses this question. Members of the Hungarian IBD Study Group led by Dr Peter Laszlo Lakatos from the Semmelweis University investigated 340 well-characterised, unrelated, consecutive CD patients (M/F: 155/185, duration: 9.4 +/- 7.5 years) with a complete clinical follow-up. Medical records including disease phenotype according to the Montreal classification, extraintestinal manifestations, use of medications and surgical events were analysed retrospectively. Patients were interviewed on their smoking habits at the time of diagnosis and during the regular follow-up visits.

They found that perianal disease, current smoking, prior steroid use, early azathioprine or azathioprine/biological therapy are predictors of disease behaviour change in CD patients.

The new data with easily applicable clinical information as presented in the article may assist clinicians in practical decision-making or in choosing the treatment strategy for their CD patients.

From: World Journal of Gastroenterology 2009; 15(28): 3504-3510 http://www.wjgnet.com/1007-9327/15/3504.asp

Swine Flu Come Pnuemonia

Well somewhere around Friday or Saturday of two weeks ago I caught the dreaded Swine Flu. Monday I was feeling pretty drained but otherwise ok. Tuesday my throat started to get sore and by Wednesday I new I was getting the flu. 

I woke up on Thursday feeling as though I'd been hit by a truck. Headache, muscle soreness, sore throat, coughing, blocked nose and a fever. I called in sick, took two Mersyndol and went back to sleep. I felt pretty miserable on Friday too. 

Feeling guilty about the amount of time I have off work, on Monday I got up, took some panadol, cough syrup, and went in to work regardless. It turned out to be the worst thing I could've done. The next day I felt worse than ever and again called in sick. 

I called the hospital to inform them that I was sick and they promptly cancelled my Remicade infusion. I was told to call back once I was feeling better. 

I went to the doctor on Wednesday who informed me that my Swine flu was now pneumonia and that I was not to go to work, or indeed get out of bed for the rest of the week. 

Sigh.

So here i am, still feeling awful, I've been off work for a week and a half now with little sign of improvement. I'm worried about delaying my remicade, since every-time I have even the shortest break from medication my Crohn's goes into hyper-drive and I wind up needing to be admitted into hospital. 

Hopefully I'll start feeling better in the next few days. I need chocolate cake. Stat!

xox

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

The Comfort Wipe

There are no words to describe this. I thought it was a joke at first, but no, I am assured that it is in fact legitimate. Enjoy.

Teen Self-Diagnoses Her Mysterious Disease - ABC News

Teen Self-Diagnoses Her Mysterious Disease - ABC News

Shared via AddThis

Heather O'Rourke, star of Poltergeist films died from Crohn's Disease

I found this Article over at Tragic Stars

Four of the actors involved in the Poltergeist films died within six years of one another, which led to a persistent rumor of a "Poltergeist curse" plaguing those involved with the horror films. Dominique Dunne, the actress who played O'Rourke's big sister in the original film, was murdered in 1982 by John Thomas Sweeney, with whom she had recently broken up. In 1985, actor Julian Beck died of stomach cancer during the filming of Poltergeist II: The Other Side. Two years later, Native American actor Will Sampson, who also starred in Poltergeist II, died of kidney failure and malnutrition problems.

In 1987, Heather was diagnosed with Crohn's disease after she suffered flu-like symptoms and swelling of her feet and legs. Despite her health problems, she began work on the final Poltergeist film, in which she starred alongside Lara Flynn Boyle and Tom Skerritt. According to fellow cast members, she never complained of pain and did not appear sick.

During a brief hiatus from filming, Heather fell extremely ill, unable to keep food down. Her mother called an ambulance after Heather fainted. Heather insisted she was fine to the paramedics, apparently worried about missing school.

Tragically, Heather O'Rourke died on February 1, 1988, of cardiopulmonary arrest and intestinal stenosis while having an acute bowel obstruction removed. Her mother claimed that had O'Rourke been diagnosed correctly months before, she would have lived. The family's lawyer filed a wrongful death suit against Kaiser Permanente, which they claimed responsible for the Crohn's disease misdiagnosis. The lawsuit was settled out of court.

World Crohn's & Colitis Day

Happy World Crohn's & Colitis Day!

Crohn's and Colitis affects 7 out of every 100,000 people. There is no cure. More research is needed to work on effective treatments until a cure is found. Crohn's is an embarrassing and painful illness, often involving surgery. It can be controlled with medications and although diet does not cause Crohn's, food can trigger violent flair-ups.

So, What have you done to help raise awareness of this debilitating disease today?  


see more Lolcats and funny pictures

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

Crohn's & Colitis Associations

Here are all the links to the various Crohn's & Colitis Associations worldwide.

The Australian Crohn's & Colitis Association

Australian Crohn's and Colitis Association Queensland

Crohn’s & Colitis Foundation of America

Crohn’s & Colitis Foundation of Canada

European Federation of Crohn’s & Colitis Associations

UK National Association for Colitis & Crohn’s Disease

The Israel Foundation for Crohn's Disease and Ulcerative Colitis

I'm a member of the Australian Crohn's & Colitis Association. Membership is about $40 a year and for that (aside from supporting the association) you get an initial start-up pack and an ongoing subscription to the ACCA quarterly magazine. I'm not sure why Queensland has it's own Association, but I understand that it's merging with the ACCA and will be called CCA Queensland. A new site is under contrution and will available here soon.

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

Lolcat Saturday

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.

Lolcat Saturday

I found this over at icanhascheezburger. Enjoy.

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. 

:-(

Weird & Wonderful Toilets ~ 2

I received this via e-mail.

Painted Bathroom Floor.

Now imgine you're at a party on the tenth floor of a hi-rise building.....you've had a few to drink, hence the need to visit the toilet.

You open the door...



Now remember this is just a painted floor!
Kinda takes your breath away...
Doesn't it?

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)