You're awesome for visiting. No, really you are. Never want to miss a thing? Click here → Join

Category Archives: Crohn’s Disease

Riding the wave of Crohn’s Disease

This week I haven’t been feeling so great. It’s just the way it goes unfortunately. I was feeling ok, I’d started new trial drugs and on the last appointment I had nothing to tell my Doctor’s because I was feeling pretty good. In this past week I’ve lost 3kg. That’s how quick crohn’s can grab hold. I don’t want to eat when I’m sick because food is painful when it moves through you – but on the other hand I’m starving. Plus losing weight that fast is not good and you can become dehydrated. I lose concentration easily and I’m so cranky.

However, I’ve had this for almost 17 years, so I know how far I can go and how to manage it. I’ll stay close to home for the next few days and take it easy. If I get to the point where I can’t handle it, I always have some steroids on hand (which I hate and normally avoid like the plague!).

 

In the meantime, check me out on these posters! Yes, yes yes it’s leopard print – I know. I had these photos taken a few months ago and probably didn’t think it through enough with the animal-print idea! It’s all I wear :) Don’t worry, there will be a new phase of something coming through soon. It always does – I’m fickle.

The posters were printed by my husband’s business and they will be distributed throughout hospitals and Doctor’s waiting rooms. You may see them around! Poster girl! I’ve already had some messages saying people are seeing them around.

PLUS This month is known as Crohn’s and Colitis Awareness month. Click here to find out more.

The Gutsy Challenge | Give for GI Cancer Research

Following on from my post yesterday about my crohn’s disease, I thought I would share with you a worthwhile cause I am involved in…

It’s called The Gutsy Challenge. It’s all about raising awareness for Gastro-Intestional Cancers by encouraging kids to eat more fruit and vegetables.

With 26 Australians dying every day and over 20,000 Australians diagnosed with GI Cancer each year, GI Cancer, which occurs in the oesophagus, stomach, liver, gall bladder, pancreas or bowel, is the most common form of cancer,” said Jacinta Walpole, Marketing Manager, GI Cancer Institute.

I am their new ambassador and will be promoting the challenge in schools. The Gutsy Challenge is a fundraiser for research that involves students eating 2 fruit and 4 veg a day for 1 week. It runs from March – November each year. I’ll be encouraging kids to get involved. They’ll be asking family and friends to sponsor them for a week.

If you want to know more about the challenge there is a whole website here to explore.

It’s a medical post today [crohn's disease]

If you’re not into my medical posts then that’s cool, come back tomorrow where I will return to normal programming! :)  But today I am sharing a couple of things on where I am up to with my crohn’s. It’s a good record for me so I can remember down the track and for those who are in a similar situation….

Before Christmas I started on a drug called 6-MP (Mercaptopurine). It’s an immunosuppressant drug. It’s similar to all other immunosuppressant drugs for crohn’s: imuran, humira, infliximab…. I’ve had no succes with any of them. I hadn’t tried 6-MP previously (apparently a lot of crohn’s patients try this early on in their disease) and after a failed drug trial back in August, I had to keep trying. I am nearing the end of available PSB drugs, so I am not thinking too far ahead and just taking it all as it comes.

Anyway, I started on the 6-MP and wasn’t having any positive results (surprise, surprise) and was a little nauseous from it. I needed to ditch it.

But the Doctor’s did some blood tests and discovered I was a ” shunter”. I am not entirely sure what this means still (even after researching it), but something to do with not tolerating it and showing some abnormal levels in my blood when taking an immunosuppressant drug. Awesome. Of course this would happen to me. Soooooo if I’d had this test 16 years ago maybe we could have not wasted all those years not getting results with immunosuppressants???… However, when I did question this the doctor said yes, but this test has only been available for the last 12 months. Bummer!

After this discovery I was offered a trial drug called allopurinol which is having some good results with switching this ‘ shunting’ thingy around. Unlike the last trial drug where I could be receiving the placebo, I am 100% receiving this drug. So what I have to do is take the 6-MP as well as the trial drug. I am having blood tests every fortnight and visiting the hospital monthly. It’s a 24 week trial.

It’s only early days so I have no idea how it’s going yet. I’m not great (as in, my crohn’s is still really active), but I’m managing.

I reckon I’ve had just about every symptom, every ailment, every drug possible. I’m an expert on the subject now! Just ask me…

Oh, and my Mummy has shingles at the moment. Far out! She is the 3rd person I have known to have shingles in the last few months. No fun!

My struggle with crohn’s disease story has been published

Late last year I was interviewed about my crohn’s disease and the story was to be published in the magazine Inside Insights written by Crohn’s and Colits Australia. I happily obliged. This is the organisation I feel strongly about being a part of and if you remember, Amie and I won $10,000 for it on Millionaire with Eddie McGuire.

So, because I’ve shared it there, I thought I’d share it here. Why? Because I still get so many emails from blog readers asking about crohn’s. There are 70,000 Australian’s with this disease and my story is just like most of you with this disease. I bet that the majority of my readers know someone with crohn’s…

It’s a crohnic illness, that has me bed-ridden some weeks and then I bounce back like nothing is wrong. People don’t understand that every day is different and it’s a disease I cannot control.

At this very moment in time, I am struggling to control my crohn’s.

I’m having another flare. I have arthritis in my left ankle, it’s always swollen and I limp some days. I still have ulcers coming and going on my calf muscles. I am visiting the toilet up to 10 times a day, crohn’s is waking me in the night, I’m always thirsty, I’m weary, and I am exhausting all of my medication options. I have started yet another round of steroids to pull me in to line, but this is not a long term solution. Steroids are only for a few weeks…

I have no idea where my crohn’s will take me, but I am not worried, or frightned, or stressed. I was given this disease for a reason – I know that reason… because I can handle it. I can deal with it. I’m not dying. I’ll just get on with it!

So here is my story…

(disclaimer – I did not write this post for comments, so please, you don’t need to leave one today :) )

KATRINA CHAMBERS: HER STORY
A reality-TV celebrity talks about career, kids, and Crohn’s disease

By Rita White

Motherhood is a tough job. Doing a reality-TV program for two intensive months is a tough job. Managing a chronic illness is a tough job.

Fortunately, Katrina Chambers, who at one point had all three on her plate, is tough, too.

At 34 years old, Katrina is certainly living a full life. She’s mother to three young boys, aged 9, 6 and 5. She’s a reality-TV celebrity. And she has Crohn’s disease.

Diagnosis

“I started showing symptoms when I was 18 and at uni,” Katrina says. “At the time, I was living away from home and having a great time, studying and drinking and going out. Then I started feeling unwell. Originally I thought it was just a lifestyle thing and I’ve just got to rest myself. But then I started bleeding from the bowel and I realised that this was serious.”

She told her mum what was happening, then went back home to Albury in New South Wales to get it all sorted. “We saw a specialist and I had a colonoscopy and we learned I have Crohn’s disease. I was 19. I didn’t know anyone else with Crohn’s and I myself knew nothing about it. It took me a long time to comprehend what was happening. At the doctor’s office, we were given some printed information, then I went home and researched it some more.

“When you’re young,” she continues, “it’s really hard to be comfortable with yourself as a person. And then you get dealt with a disease that you don’t know anything about and you don’t understand why it’s happening.”

Raising a Family

Katrina kept her condition from everyone except her family, and back at uni, things settled down a little bit with medication. “I didn’t miss any uni,” she says. “I didn’t fail anything and I still got on with it. I got through all that and graduated, then moved to Wagga for a job and I’ve been here ever since.”

Things stayed manageable and life went back to normal, although she did have a flare-up soon after she married her husband, Andrew. But then she got pregnant with their first son not long afterwards, and she found herself completely symptom-free.

“During each of my three pregnancies and when I was breastfeeding, I was better than I had ever been.”

Katrina’s sons are now 9, 6, and 5 — three healthy, robust boys who are aware that sometimes mum has bad days and needs to rest.

“They know that I have some problems with my bowel and that that’s just how I am. They also know that when I need to go to the toilet, I need to go to the toilet. They understand and I sometimes hear them tell each other, ‘Don’t go annoying Mum — she’s on the toilet!’

“Andrew is so supportive as well. He’s just awesome. I don’t keep any secrets from him, and he knows that on some days I just have to take it easy, especially if I’m still in my pyjamas late in the afternoon.”

Katrina from The Block

Early this year, Katrina was a contestant on Channel 9′s The Block, a show where contestants renovate a home and get it ready for auction. She and her sister Amie Godde worked together as a team and toiled practically nonstop for nine weeks to renovate a house, all under the scrutinising glare of the reality-TV cameras.

“Doing the show and getting the house sold was a buzz,” Katrina says, “but all that stress, coupled with not eating properly during the weeks of filming, took their toll on my health.”

She had a flare-up and dropped 10kg during filming. She lost a further 4kg since completing the show.

These days, Katrina is living a much quieter life back home in Wagga Wagga NSW, and she takes it easy whenever she can, taking everything in moderation and paying attention to what her body tells her she needs to do.

“A couple of Easters ago,” she relates, “I got myself in a bit of a situation when I ignored feeling unwell. I ended up dehydrated and had to stay in hospital for four days.”

Fortunately for Katrina, not many foods bother her. She tends to avoid bread because of the yeast, and she doesn’t take alcohol as it makes her sick. But as long as she doesn’t overindulge in rich foods, she usually has no problems.

“I pick my battles,” she says. “If I know I’m not going anywhere for the next few days, then I’ll usually eat whatever I want. Not even Christmas is a problem. The Christmas stress doesn’t get to me. I’ve got three boys! It doesn’t get much more stressful that that.”

A Voice for Crohn’s Disease

When she looks back on her past fifteen years living with Crohn’s disease, she still considers herself lucky. She has a great career, three great kids, and a supportive husband. On top of all that, with her current celebrity status, she’s now in a position to talk to people about something that she kept secret for a long time.

“Apart from my family, I never told a soul about my Crohn’s disease for a really really long time. I hid it all the time. In hindsight I realise now that it’s easier to deal with it when people know about it. There would have been no more hiding, instead of people looking at you and saying, ‘Oh gosh you’re always so sick!‘ And although you really are lethargic and you’re not focused and you’re not motivated, if you’re forever just saying that you’re not well, others wouldn’t understand.

“I’m a really motivated person and I want to do well in everything. If you’re like me and you become unwell, it gets really hard. So you need to let people know: it’s a disease that you can come in and out of all the time, and sometimes you’re really well and sometimes you’re unwell. You need to let people know about it and they’ll understand that you have no control over it.

“When I finally started telling people — just around two years ago — everyone seemed positive. I tell them that it’s a recognised and fully known disease, and not something that I conjured up in my head. It’s really hard to manage, so I let people know about it.”

For Katrina, it’s been a journey not only of health, but also of self-knowledge, and an awareness that IBD needs to be brought out into the open. Speaking about bowel disease need not be embarrassing. Being open and honest about a condition that afflicts almost 70,000 Australians can only lead to greater understanding of the challenges that those with IBD face every day, greater acknowledgment of their needs, and greater support to find a cure.

Katrina Chambers has been through much, and we at CCA are grateful to her for sharing her experiences with us, and for her supporting what we do. We are also very grateful for the sisters’ donation of $10,000 to the organisation. Katrina and Amie won the money for their charity of choice during an appearance on Channel 9’s Hot Seat. They donated it to CCA as a way of showing their support to the IBD community.

Visit Katrina’s website at www.katrinaleechambers.com for more information on her latest projects.

Crohns Disease Update

Just a quick post today. I’d thought I should update this part of my life because since writing about it on my blog I have found so many people with this horrible disease. Sharing helps raise awareness.

Here is me donating the $10,000 Amie and I won to Crohns and Colitis Australia. Read full story here.

Last time I wrote about it was here. I was starting a drug trial. Unfortunately after 4 weeks my condition had deteriorated even more and blood tests confirmed this. I either got the placebo or the drug just wasn’t for me (I won’t know which I received for 12 months!). So a decision was made to pull me off them. I was disappointed, but at the same time I really really really needed a good hit of steroids. This would fix a lot of problems short-term - arthritis, ulcers and lessen the amount of toilet visits. I gobbled them in to me starting 4 days before the auction and I felt a million bucks! Things were always going to improve on steroids. But they are only a short-term drug. They have side effects and long term issues eg. chalky bones, shaking, thirst, excessive hunger, red face and I don’t sleep. I have been on them about 4 weeks now and I am HATING them (but I feel generally well)….

So tomorrow I am off to St Vincent’s Hospital in Melbourne again to be reviewed. I am also taking 6-MP. This is a new drug for me (similar to Imuran). I am not sure how I will go with these either. They can take about 2 months to get in to your system. I’ve not had luck with Imuran so this is why I am not sure about the 6-MP.

I’ll let you know how my review goes…

Instagram

Photobucket